Saturday, October 30, 2010

Our last day in Italy and my boys are lost

Well, it has been a very interesting day. I have made it back to the hotel room and it is after 10pm, but my husband and son are still at least 2 hours away.

The day started very well. We went on a small group tour to Pompeii and the Amalfi coast. We started at 0645 from our hotel with 1 other couple and our guide in a very nice van. We made a quick stop about an hour after starting the trip to grab a quick breakfast and bathroom break, then on to the ruins. It takes a bit over 2 hours to make it here. We joined the other small group of 7 that was with the same tour company for a private tour of the ruins. It was wonderful and so amazing that this place even had indoor plumbing. After the wonders of Pompeii, we head towards a coast town for lunch on the beach, and some shopping. Positano is a lovely, expensive little town. We were running a bit behind at this point due to heavy traffic on the tiny twisting road here. From here we continue on down the Amalfi coast and to the town of Amalfi. It was like an amazing roller coaster ride on this very narrow road, so glad that Max our driver is an expert. We start our trip back to Rome at 6 pm, knowing that we will get in late, but that is OK. Brighton says this may have been his favorite day and loved the sites. The trip was going well, but I did think how awful it would be to have a flat tire on this crazy road with cliffs on one side and mountain on the other. This did not happen, but after we had passed Naples on the way back to Rome, we pulled off the road to a very nice Aero Grill – like a truck stop, snacks, and bathrooms and are very well lit with nice places to sit. We were again joined by the other tour group and a very sad to find out that our van has broken down. (Kelly was sitting in the front and said that about 10 minutes before we turned off, we had been going fast but then slowed down quite a bit – he thought it was just a speed limit change, but not so lucky). After many phone calls and about a 30 minute wait it is decided that I will go in the other van in the 1 free spot that they have left. I will go to the hotel and pack so we will be ready to leave at 4AM. Kelly, Brighton, the other two ladies that we were with (a mother and daughter that did not want to be broken up) along with Max the driver will stay and wait for another driver to come and get them. It is over 1 ½ hours from Rome to get to the station and then they will have to make the trip (at least 3 hours, if things go right).

The good news is that I when I made it to the hotel, the driver told me that they should be on the way soon. The bad news is that I will be anxious until they make it here and we are all going to be SO tired in the morning.

I ask that you all keep us in your prayers. First of all that the boys make it back here soon! I really hate being separated in a different country with no cell phones. Second, that we make it all the way home as planned. We are set to arrive at 315 PM Sunday and can hardly wait to be in our own beds, but most importantly want to be safe and together.

Love ya’ll,

The first several days of Italy

Italy Day 1
October 23-24

Our trip starts with delays in Dallas. Strong storms across the area cause our inbound plane to divert to Houston instead of coming to Dallas. We do eventually leave, but at 7:30 Pm instead of 4:20. You can already see the problems that we are destine to encounter with connections in Frankfurt Germany, but we were optimistic that they would be able to make up some of the time in the air. They did not make up enough time and we had the pleasure of spending a bit of extra time in Germany before going on to Venice.

We flew on Lufthansa. This was a first for us. The flight crew was very nice. The seats uncomfortable and a bit smaller than Continental. In flight entertainment not as good as Continental. The food, not so good. The great point was that we were in a row with 4 seats and there were only 3 of us, but that does not mean that we got much rest on the flight, but I was grateful for the extra leg room.

International Airports are very interesting to me. We complain so much in the US about needing nice and new, but in Europe it is about making do with what you have. The Frankfurt Airport is torn up in a variety of areas. It is very gray and ugly with no bright pieces of artwork around. They also have these glass smoking rooms every so often that do not keep in the smoke very well. We also used air stairs in Germany, and a shuttle to the terminal. I think this was a first for Brighton. The great thing about that airport was the comfortable chairs. Both Brighton and Kelly were able to stretch out across three and get a several hour nap.

Our plane ride to Venice was uneventful, a bit late (it was on time landing, they are just not in a big hurry in Germany to get the planes loaded) and the pilot really liked the brakes when we landed. The new Airport in Venice is very nice and we were so pleased to see that both of the bags that we checked made the trip with us.

When we finally did arrive in Venice, it was a bit after 6PM, raining and getting dark. We headed for the waterbus (not wanting to spend the extra money on a water taxi – mistake) and were off to the island. Once we finally made it to our stop we had quite the adventure finding our hotel in the rain, walking on back streets that were poorly labeled. We did finally make it there by about 7:45 after being worried that we would spend the night out in the rain. After settling into our nice tiny room, we found the energy to go out and get a bit to eat. We all had Pizza and Gelato, walked about an hour and then went back to the hotel and had wonderful showers! We were all glad to be in bed, even if we had not seen as much as we had planned for day 1.

Italy Day 2
October 25, 2010

We are up and out early after a quick breakfast of pastries at the hotel. We start by taking a ride down the Canal from the Rialto Bridge to San Marco. We head to St. Mark’s square, take a few pictures and then to the Doge Palace. After we are done with this, we come out to a flooded square and a very long line to St. Mark’s Basilicas. We decide to ride awhile on the canal and end up back at the Rialto Bridge after a short walk and adventure in the rain (yes, a cold rainy day in Venice). We end up having pizza again by our hotel. It is safe and we will all eat it. After this we are tired of maps and decide to just try and get lost going back to St Mark’s square. We have a great time shopping and winding down street after street. Many of the streets are very narrow and crowded. I am glad I live where there are wide open spaces. After seeing the grand church we do spend the day walking and shopping. We end up finding a street side eatery that has crepes, so it is ham and cheese crepes for dinner. More shopping, a trip on the canal to the train station to see where it is and then a nice walk back to the hotel. Only problem with our evening walk was the heavy rain that soaked us all to our underwear before we had more gelato and got back to the hotel.

Weather today – cold with rain, should have packs a warmer shirt and I am glad to have my gloves!

Day 3
October 26, 2010

We are at the train station early to get on the 0827 train to Rome. We leave a cold, wet Venice on time without any problems. It is sure much easier to get to the train station than the Airport.

We arrive in Rome about 1230, head to the TI and grab our Roma Pass and a map. Then take a taxi to the hotel. It was a short trip but the traffic is crazy. No one follows any rules and sometimes there are 2 lanes and sometimes 3. We are glad to make it alive to our hotel which is close to a Metro station. After getting checked in and unpacked again we are off to explore and find a bit of food. We find a Pizza place that looks good and enjoy more Pizza. I know that you are all surprised by our selection in food. We will not starve as long as we can find a pizza place, but Kelly really wants to try the pasta too. After a late lunch, we head back to the train station. We went on the Metro for the first time, which was bit, confusing and harder than the Metro in Paris to figure out, but we now have it down. At the train station, we found a double decker bus tour to go on and get a quick orientation to the city. It was fun, but cold and of course we were sprinkled on a bit. I have decided that I really did not pack enough warm clothes. The high today in Rome was only 63 and down to about 50 by the time we made it back to the hotel. We took the suggestion from the doorman at the hotel and tried a restaurant around the corner. Traditional Roma food – Brighton and Kelly both liked their dishes, I should have ordered the Pizza.

Our hotel shower and bed feels great again.

Day 4
October 27, 2010

Today was a very busy day. We started with a great American breakfast at our hotel. I am already sad that we will miss breakfast both Saturday and Sunday. We decide to try to navigate the streets on our own and instead of taking the Metro to the stop across from the Colosseum. I think that it would be great to go and see the Peter in Chains church on our way, but the streets beat us (they do not label well in Venice or in Rome) and we just end up at the Colosseum to start the day. Brighton says this is his favorite site so far. It really is amazing. Our next stop is Palatine hill and the Forum. Then up to Capitol Hill and walk all around the Victor Emmanuel Monument and enjoy the 360 degree views of the city. It is then the walk to the Pantheon and finding lunch. I bet you can guess what we had, yes Pizza. It is safe and reliable. After the Pantheon we head to the Trevi Fountain. On the way there we see all the sites that Rick Steve’s is kind enough to point out on his guided walk. We continue our adventure to the Spanish Steps. This is a site that Brighton is completely bored with and finds no pleasure. We give into his begging and head back to our hotel via Metro for a break. After a bit of rest we are ready to head to the Nation Museum of Rome to see the greatest collection of Roman sculpture anywhere, along with the largest coin collection in the world. You can guess that we were through the Museum in record time and finally to see St Peter-in-chains. It looks like an easy walk on the map, but it was long and our feet are tired. We do finally find this well hidden site. It has Moses by Michelangelo and was worth the hunt. We then catch the Metro at rush hour over to the Hard Rock cafĂ©. We all had wonderful and expensive hamburgers. I do miss my Texas food! We are back to the hotel fairly early, with our feet propped up!

Day 5
October 28, 2010

We started out a bit later today, having to be at the Vatican Museum for a guided tour by 11Am. The 3 hour tour was wonderful, looking at faith and the role it played in the artwork at the Vatican. We of course visited the Sistine Chapel and finished the tour at the St. Peter’s Basilica. The tour was lead by a nun and her mother superior, dressed in green robes. We then found time for lunch, Pizza again at a little place around the corner and on the way to Castel Sant’Angelo. It was a stairmaster workout for sure, but offered some great views of the city. We went back to our hotel to prop up our feet for a bit, and are ready for a night walk across the city to see the sites lit up. We start our walk at the Coloseum, then to the Pantheon, were we had a nice dinner of pasta and true Italian food. We then found some gelato before heading to the Trevi fountain a bit of shopping and back to the metro. We made it back to the hotel by 11pm and are off to bed after another exhausting day.

Day 6
October 29, 2010

We got off to a late start with no specific plans; just enjoy some of the minor sites. We start out at the Circo Massimo, where great chariot races were once held. Today they are doing some sort of Army display and it heavily guarded with a number of army vehicles. There are huge trucks, helicopters and giant generators. It does help one to realize the true scale of the place and that the track was pretty long for those races. We then head across the river to see the area known as the Trastevere. There is a fabulous church in this area call Santa Maria in Trastevere. The art work is amazing; they know how to build churches in Europe for sure. We then see a place call the Villa Farnesina. It is an amazing Renaissance villa decorated with Raphael paintings. We take time out to eat Pizza at a Rick Steve’s suggested hole in the wall. It was very good! We spend part of the afternoon just wondering around getting lost in this area and then went on our first public bus in the city. It was very nice and easy to navigate. We took it part way and then got on the Metro, were we were able to see real pickpockets in action, but they did not get us! We walked from the Piazza Del Popolo down to the Spanish Steps, seeing the expensive shopping area of town and noticing that everyone seems to smoke here. It does seem to be worse than the other days and we are more on guard for thieves today in general. We continue to wonder the streets until Brighton is about to bust and we have to find a restroom. We stop in and have some very good and very expensive gelato. We wonder a bit more before making it back to the hotel where we are glad to put our feet up and start organizing our stuff to prepare for our trip home. Brighton is really missing his bed, but is glad to be here.

Saturday, October 23, 2010

I'm running away and may never come back

Not really, but that is the way that I felt this week. There are times when I think that I absolutely can not handle one more thing and beg for mercy. That was this week. I had so many reminders of my sweet girl and miss her so much. My parents have moved their trailer back to the panhandle and I just feel like I lost my daughter and now I am losing my parent's too (yes I know that they are still close and will be back one a month at least, but I really miss seeing them everyday. My best friend was in the hospital this week with her stupid cancer. I really hate cancer and the horrible things that it does, but I especially hate her cancer. It is just a reminder that life can be so unfair. Work is crazy and I have to say I miss the days when I loved going to work. I am not unhappy with work it is just crazy and stressful. This was the first time that I really started to think that I might need an antidepressant. I then remembered that I have not been good this week - not exercising every day and not eating well (the treadmill makes a huge difference). I am doing better today and we are getting ready to leave for Italy in a few hours. It is a get away that we all need. I will call my parents soon and so will Kelly to tell them not to contact us if anything bad happens. No cell phones, no computers and I don't care if someone dies, I don't want to KNOW! I want a week with the entire outside world locked out, just my husband, my son and me enjoying the week and regaining sanity. I do have so much to be thankful for and Satan tries his best to make us forget that. I am so thankful for the wonderful family and friends that I have. I am so thankful that we live in a country where we can worship freely (at least for now). I am so thankful for the beauty that is around us each day - I still spend so much time in the garden and the flowers are amazing right now. I am so thankful for the small protections that My God provides me with each day. I am so thankful that I am not going to France on this trip.

Friday, September 24, 2010

the family trip

Trip plan update. Well we have actually book our travel and have our flights and hotels taken care of. We plan to Go to Italy in October. We will pull Brighton for a week and hopefully be able to do some travel related extra credit. I have to say that I am now getting excited now. It is good to have something happy to be planning. I have been reading the travel books and have pulled out the travel gear. I have started to make the list of all things that we might need, the list of things that I am missing. Thank you Rick Steves for all the tips. Life is still hard and you I am not getting over the loss of my angel and the heart aches of the past year, but we get through it. So long for now.

Sunday, September 5, 2010

2 months down

It is hard to believe that it has already been two months since our sweet angle left us. It is now another major holiday and I still see things every day that I missed putting away of hers. Yesterday, I ran across her xrays and remember how we were planning to be in Galveston for surgery, but never made it. I was also talking to my mother about upcoming holidays and realized that I could not even remember last Christmas. Neither my mother, nor I could remember how we spent the holiday. By process of elimination, we realized that we had been in Amarillo, but I can not remember any of the details. The stress of the past year was just so hard and I don't think I realized it at the time, but I still feel really beaten up. It is getting better, but I wonder how long it will take to get my brain back. I was really smart at one time and I am just not as sharp now. I think I am doing pretty good, I am working hard to keep it all together, but I still just don't get all the things done that I would like.

Today was a good day. The cleaning girls were here today and I was busy with some spring cleaning. I was planning to take up a couple of photo albums up stairs and started looking at pictures of Molly. I had forgotten so much. She looked so good before the seizures. I had so much hope at that time, it was all going to be OK. She was so beautiful and I miss her so much. I still do not understand these past two years, but I am confident that God does have a plan, I just wish I knew what it was.

Thank you all for the continued prayers and support. -T

Sunday, August 15, 2010

Still going!

Hello Friends,

Just checking in to let you know that we are doing OK. It is still hard, as I expect it to be, but we keep going. Brighton is back home after an amazing week away at Sky Ranch, a christian camp. He and I were both ready for him to be home. I picked him up on Sat morning and next year I will schedule an early pick up for Friday night so I will not miss him so much and he will not be as home sick. He had a great time and learned that kids are just little caterpillars, waiting to become butterflies.

I had a very busy week and thank you to all my friends that make sure I have plenty to do. Kelly worked all week since B was gone and I had something going every night. On Thursday, I had middle school orientation and will return to the middle school on Monday night with Brighton to walk the halls and load up his locker. It is hard to believe that we are ready for 6th grade!

Love you all and keep us in your prayers.

Monday, August 2, 2010

1 month

It is hard for me to believe that it has been a month since our sweet baby went home. At times it seems so long ago and at other times it seems only moments have passed. For those of you that worry about us, keep us in your prayers and please know that we are continuing on. Kelly and I both are on diets and try to exercise every day. It is good to have a goal to work toward. I go to work each day and the time moves very quickly. We are planning a trip in October to europe for the three of us. We all need things to look forward to and I still look around and see the beautiful things. I know that there are great plans for us and we will meet them head on.

Tuesday, July 20, 2010

A few small pity parties

I am still doing good. I am very busy with work, which is what I need right now. They moved my office while I was off (this is a good thing) and now Brook and I share an office (no doctors, just midlevels) so we have been decorating. Monday I brought in family pictures, including 2 of my favorite pics of My Molly. I have the one from the blog and another that is so sweet with a big bow. Today, two different people were in my office and started asking about the beautiful little girl. I held it together pretty well until I was walking to my car. The tears just started, for some stupid reason I just realized that I won't have a 2nd birthday to celebrate with my little girl. I felt so cheated and so wanted to go home, and open the door to find a beautiful, healthy little girl with blond curls running and laughing. That was never meant to be, which is still so hard to accept at time. This past year has been so hard, it just does not seem real some days. I know that God has a wonderful plan, and I am so thankful for all the amazing relationships that we have made, but I still long for that little girl that was never meant to be. I am sure that I always will, especially at holidays and birthdays. This is OK and life goes on. I am so glad that we have an amazing God and that I have hope for the future. I can still see all the beauty that is around us.
Pity Party over for the day. Onward, for I have another amazing child that I have to be strong for and an husband that I love.
Thank you all for the continued prayer, It is, as always, our Lord's strength that keeps us going.

Thursday, July 15, 2010

Thank you for all the cards and notes

Thank you all for all of the cards, wonderful call and continued prayers.

Many of you have been asking how we are all doing, so here is an update.

First, little B. He is doing well in his just turned 11 boy world. We have kept him very busy with short trips, planning a b-day party, movies, and lots of activities. He seems to be cruising along so well and then out of the blue he will tell me that he misses his little sister and that he wishes he could kiss her again. He has wanted us to lay down with him at night, which we do, and we give him lots of extra love. We are also looking at campsol for the family.

Kelly is also doing well, he is back to work and starting a diet and work out plan. I am also back to work (which will save my sanity) and also starting a new diet and work out plan. We have been keeping busy, doing yard work, writing thank you notes, talking on the phone. We are also trying to plan a few trips for the three of us and enjoy each other. On Saturday our Molly trees are being planted on our yard and in 2 of the neighbors yard. 5 beautiful crepe myrtles, 3 purple and 2 pink.

I also had an ultrasound of my gallbladder today. I have needed to have it out for several years, so maybe I will do it now.

My parents are also doing OK. We have planned out the rest of the summer and once school starts. My mother had scans last week and they are all good. Still cancer free! So many things to be thankful for.

I miss my sweet little girl every day, as I know that I always will. I know that she is watching us from above. I do look forward to the day that we will all be made whole and reunited. Until then, I know that God will take care of all of us.

Thank you all again for everything!

Monday, July 5, 2010

The funeral was beautiful

It was a long day. We had plenty of time to get ready and I continue to open drawers, I continue to find wonderful reminders of my sweet little girl. I pulled down a bin and there were her winter hats. Pink and white. She was so beautiful in them. I open my purse to look for my keys and there is one of her hair bows that I had kept for emergency cuteness when we were out. My arms are so empty, but I am also strangly at peace. I know that she can see me and I feel her. She is perfect, and she is no longer hurting. How wonderful are all the things that she see now?
I held her so much of the time, wishing that see could see how beautiful the flowers were in my garden. How amazing the hummingbirds and butterflies were. Today, I realized that she has to be looking down and saying, "mother this garden is so much better than yours! Up here is so much more glorious than the world that you are in!" She is right, no matter how wonderful I think some of the flowers, plants and animals are here, they are so much better there!
I was amazed at how many friends were at the service. Thank you all for coming. It was increadible to see how many lives this little one touched in just a year. I hope that this next year that I will touch as many lives. I don't have any reason not to do more. To live each day to its fullest. To remember her each day and rejoice in how strong she was.
I wore a great pink suit to the service today with animal print shoes. I had a traditional black suit, but yesterday I realized that she deserved more. I wanted to honor her memory with what reminded me of her most. The color that I loved her most in and the animal print that I had decorated her room it. It will always make me think of her. On of my friends told me that I was so strong today, but she was wrong. I have been given grace from God to continue on. He has given me comfort and peace. He continues to provide. I know that it will be harder in 2 or 3 weeks, when the house is still and when I am out seeing other mothers with their healthy, happy children. For now though, I am staying busy. Planning some weekend trips. Loving my husband and son. And most of all, praying!
So many friends have asked us what they can do. We have plenty of food for now, but in a month or two bring us a meal. Pray for our strength. Pray for our son. Pray for our parents! I think that they hurt even more than Kelly and I for not only do they miss Molly, but they also hurt for their children. Pray for our health. Pray that both grandmothers stay cancer free. Pray that Molly's life continues to touch others. Pray that we are blessed with another little girl. Pray that we hear God's plan and follow willingly. Thank you all so much.

Saturday, July 3, 2010

The Morning After

July 3, 2010
I was up at 4 this morning after collapsing last night. I opened my eyes an my first though was that I needed to go check on my angel. (Molly always slept on my chest or if we had a night nurse she would rock with her all night and I would wake during the night and go to her room to check on them) It took just a moment to remember that this morning was so different. I can't pick her up and hold her today. My arms feel empty. I am so sad for me and so happy for her all in the same moment.
I knew that I could not just lay in bed and that I would not go back to sleep, so up and out to walk the neighborhood. It is so muggy and gray this morning. It started to rain and there were too many clouds to see a beautiful sunrise like the one we watched yesterday. Thank you dear Lord for giving my they beautful morning that we had yesterday. It is fitting that today would be gray and raining.
I have already been sitting in her room, taking out the beautiful clothes that she never wore to pack away. I hope that on day we will be blessed with another little girl and hopefully she will be able to wear all of these things. I hope that I will be able to pull them out again and even though Molly never wore them, they are hers and I will be reminded of her as a dress a little sister in them.
It is crazy and busy at our house and I am thankful for that. There are so many things to do and I don't have time to think about any one thing too long. This is how I will move on for now. I know so many of you that read this worry about me (I worry about me and the family too) and I want you all to know that we will be ok with time. God will heal us and he has a plan. Your love will heal us. I have a plan too - we will see if it fits with God's. It is to remember to make the most of each day and not to make excuses. We are here for such a short time and we need to make a difference. It is too easy to just sit in front of the TV or computer, too easy just to stay home and relax.
Continue to pray for us all! Thank you! Funeral plans are the post below.

Friday, July 2, 2010

Funeral Plans

Funeral Plans for Molly Hill
Turrentine Jackson Morrow Ridgeview Memorial Park
2525 Central Expressway North at Ridgeview Drive
Allen, TX 75013

Monday, July 5, 2010

Please direct donations to

Prosperity Place Therapy
680 N H Hays, Suite 102
PO Box 115
Prosper, TX 75078
972-347-3770 phone
972-347-9790 fax

Community Hospice of Texas

Make a Wish Foundation

She has made it home!

Our sweet angel went to heaven at about 8 am this morning. She was very peaceful and we were able to all enjoy a beautiful sunrise. We held her and loved her until the end. Her journey is now complete and our continues. We know that she is whole and perfect. I know that she can see now! I know that she can eat now! I know that she can run, jump, crawl and move now! No more seizure! No more pain! Glory to God for all those things.

Thank you for all the prayers!

The journey is almost over, but not yet

I have to say that yesterday was by far the hardest day of my life, and I know that today will be even harder. I also know that we will get through this, because we have to and as hard as it is, it also carries many blessings with it.
It is about 4 am on Friday morning and we have had a bit of sleep. We all thought that she was leaving us about 3 yesterday, but she just wanted a little bit more attention. (It is amazing how a little one can control so many big ones even up until the end) By the end of yesterday, we had visits from almost all of her therapist and most of our friends. We have been able to pass her around and she has been kissed and loved all day long. It has been a time of such sweet sarrow, and I have been so touched by the words and hugs of our friends. I had always hoped that she would die very quickly, that I would wake up on morning and she would have left us, fast and easy (if it ever could be). But this journey does allow us a different perspective, and I am thankful that God is giving us and the loved ones that she has touched the time that we need to say good bye.
Kelly and I both laid down last night with her between us. Our hands on her chest to feel if she was breathing and warm. Neither of us expected to get any sleep, but we both have had some. I awoke to my husband's sweet voice saying a quiet hello, and I concentrated to feel her breath and was glad to know that she was still here, but very quite. I then replied with a quite I love you and turned slightly and saw a tall figure standing next to my bed. I almost screamed, but caught myself, realizing that it was my wonderful and strong mother. (It was not me that my husband was saying Hello to). She had come back to my house at around 2 this morning to check on all of us. I could tell that she also wanted to hold Molly. So we are up, but I am glad to say, more rested.
Thank you all for all of your prayers. It is God that gives us Grace and Strength! He has provided so many times for us and I know that he hears all the prayer. Thank you, Thank you, Thank you!

Thursday, July 1, 2010

Our Path has changed

The past week has been hard. We had been planning a trip to UTMB for Molly’s surgery in hopes of relieving some of her tone issues and to give her more comfort. As last week progressed, Molly started hurting more, having more seizures, and her tone increased. We have been adjusting, changing and adding medications, but have been unable to make her better. We have a team of wonderful doctors, but Molly continues to show us who is the boss, and it is not us. By Sunday night it was obvious how bad her tone had become. She is no longer able to tolerate anything in her g-button without it leaking out. This morning, we decided, along with our doctors, that it was time to start hospice care for our beautiful angel. We know that, with their help, we will be able to get her pain under control.
We are so thankful for all the wonderful doctors that have spent hours with us, and for all the therapist that have made this past year bearable, all whom have become close friends. We have met so many amazing special need families that live a life that no one on the outside can ever imagine. We have been shown so much kindness from friends and family. I know that we could not have survived without all the support and encouragement. I thank God for all these things.
We will update everyone when things change and about arrangements, once it is time. Please continue to pray for Molly to be out of pain, for Brighton during this time and for Kelly and I.

Tuesday, June 22, 2010

six flags and the person next to you

Well today was 101 in Dallas and my wonderful mother took Brighton and his cousin Rick to 6 flags today. They were there before it opened and stayed until almost 7PM. My mother saw someone pass out form the heat and thought that she was going to also. She said that she only really spoke to one other person at the park, a woman that lives in Prosper, just North of us. This dear lady was also with her grandsons at the park. They started talking about the grand kids and the woman mentioned that she watched her special needs granddaughter most days, who is 6 and severely disabled. She, like Molly is very high tone and has problems with her legs. The woman then proceeded to tell my mother about this miracle surgery that they went to Galveston for several months ago. Yes, the PERCS procedure by the same doctor that will do Molly's surgery. She had her groin and ankles done. Her grandmother told my mother how she cried for joy when she saw how much relief her granddaughter received from the procedure. She told my mother how easy it is now to change her diaper. She can relax her legs now. My mother had been very unsure about our decisions to go to UTMB, thinking that we were a bit crazy but now says she knows it is the right thing. Thank you God for providing the people we need in our lives when the time is right.

Saturday, June 19, 2010

Summer is here

Well we are 2 weeks into the wonderful summer and it is hot. Brighton has been to 2 camps already - one away camp and one here. He had a great time at both and is enjoying sleeping late and not having any class to attend. He is also going to the gym with his dad some which is also wonderful.

Molly is having more problems with her hip. I wish day after day that I could just fix it and may the pain go away. It is clear that the Botox did not help her legs at all and we do not plan to try again. We have scheduled an appt. at UTMB with a doctor that does a special surgery that will hopefully help her legs basically go from high tone to low tone. Then we might be able to get her into the brace for her hips. If we can't do the surgery in Galveston or if it does not work then we will have a surgery in Dallas that will cut some of the muscles in her groin, but with that one she will have to be cast for 6 weeks. Please pray for her hip and that the less invasive procedure works and Molly stops hurting.

Sunday, June 6, 2010

God provides

It is amazing how God gives you what you need so much of the time. The following was written by one of my friends on her blog and it was what I needed to read today. As you all know this past year has been by far the hardest in our lives, but I know that God has a plan for me, and my family.

God is faithful to keep His promises... but it may not be in this life. By Celee
I was reading today about Jacob taking his family to Egypt in order to avoid starvation. God had providentially placed Joseph in a position of power in Egypt so that he could provide for his family during a time of severe drought and famine in the land of Canaan. Jacob must have wondered why God was now leading them AWAY from the Promised Land into Egypt. What struck me was this: God reassures Jacob that it’s the right move and that He will bring Jacob out of Egypt, but that he will die there.

“Do not be afraid to go down to Egypt, for there I will make your family into a great nation. I will go with you down to Egypt, and I will bring you back again. But you will die in Egypt with Joseph attending to you.” Genesis 46:3b-4

Doesn’t that seem paradoxical? How could God deliver Jacob out of Egypt if he’s going to die there?

I suppose it’s not that different from Abraham believing God’s promises about giving him innumerable descendants and giving him the land of Canaan as his possession. Abraham did not live to see Joshua lead the Israelites into Canaan, yet God had told him He was going to give him this land as his possession. (Genesis 15:7, emphasis mine.)

Hebrews helps to decode the apparent paradox.

“All these people died still believing what God had promised them. They did not receive what was promised, but they saw it from a distance and welcomed it. They agreed that they were foreigners and nomads here on earth. Obviously people who say such things are looking forward to a country they can call their own. If they had longed for the country they came from, they could have gone back. But they were looking for a better place, a heavenly homeland. That is why God is not ashamed to be called their God, for He has prepared a city for them.” Hebrews 11:13-16

So God is faithful to keep His promises, but it may not be in our lifetime, at least not during our time on earth. Why do so many Christians miss this important point? This is NOT our home. We’re just passing through on our way to the new heavens and new earth where we will live forever with Christ. Our time on earth is like the 2 hour layover you spend in a crowded, noisy airport on your way home for Thanksgiving. Nobody in his right mind would look around for all the comforts of home in a lousy airport. I mean, you can’t even get a decent meal in an airport. So why do we keep trying to make the airport layover our home? Why do we expect God to meet all our physical, spiritual, and emotional needs now? Why don’t we ever stop to think that all the disciples but one were martyred? Why don’t pastors preach about this? Are they afraid of emptying out the pews? Have they missed it too? I’ve seen bumper stickers that read, “Smile, Jesus loves you.” I haven’t seen any that say, “Buck up, I chose you to come out of the world, so it hates you.” (John 15:19) or “I told you not to think it strange when fiery trials befall you.” (1 Peter 4:12) I’ve seen gospel tracts that read, “God loves you and has a wonderful purpose for your life.” And He does, but I’ve never seen one that continues, “and it may include being shunned by your family and co-workers or even burned at the stake.” I’ve never seen a gospel tract that is upfront and honest about suffering. The reason we don’t see these bumper stickers and gospel tracts or even hear these sermons is because the evangelical church today has by and large missed this all-important point. We will not see all of God’s promises fulfilled, global, corporate, or individual, in this life. He promises if we ask Him for bread that He will not give us a stone (Mathew 7:9). You can count on getting that bread, even though you may have a mouth full of rocks right now. That doesn’t make God a liar. He is faithful to keep His promises, all of them. But we cannot presume our timetable upon the all-powerful, all-knowing, all-holy God of the Universe.

Where does this leave us? I think it leaves us with the meaning of life. Everyone’s searching for the meaning of life. Here it is: prepare for the next life. How’s that for an answer? Spend this life preparing for the next one. That’s it. It’s that simple. Get to know God. Find out what pleases Him and start doing it. With the knowledge of God and obedience to Him come meaning and fulfillment and joy. Not the kind of laugh out loud, hysterical joy, or the kind of joy that comes with health, wealth, and prosperity, but the joy that comes from being in fellowship with the Almighty God of the Universe and the joy of being able to praise God even in the midst of difficult circumstances. This is what my husband calls easy preaching, hard living. But it’s the truth and the sooner we apprehend it, the sooner we will begin to see our life on earth as a layover to our eternal home. Then we will be able to see our current suffering, not as an anomaly that defies reason, but as an opportunity to throw ourselves at the feet of our Lord and say with confidence that His grace is sufficient for us. We will truly be able to say to God, “Thy will be done on earth as it is in heaven,” when we connect the dots between this life and the next. His will now leads to His will then. The suffering now is part of the glory then. The world hating us now is part of our reward then. The promise now may be fulfilled now, but it will certainly be fulfilled then. The prayer now may be granted now, but will assuredly be answered then.

“Now we see things imperfectly as in a clouded mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God knows me completely.” 1 Corinthians 13:12

Jacob didn’t understand completely why God was moving his family OUT of the land promised to his father and grandfather as an inheritance, but he knew God’s will was perfect and he believed that God would still honor His promise to Abraham, Isaac, and himself. Jacob couldn’t have understood how God would bring him out of Egypt, but that he would die there any more than a believer can understand his current sufferings in light of God promising him bread and not a stone.

The risen Christ said to Thomas after letting him feel His wounds, “You believe because you have seen me. Blessed are those who believe without seeing me.” (John 20:29)

That’s us. We’re the ones that haven’t seen the glorified Christ with our eyes. We’re the ones that see dimly. Yet we believe. And it was Jacob, too. And Abraham. And all the faith hall-of-famers of Hebrews 11. Some of them “by faith overthrew kingdoms, ruled with justice, and received what God had promised them” (Hebrews 11:33) while “others were tortured, refusing to turn from God in order to be set free. They placed their hope in a better life after the resurrection. Some were jeered at, and their backs were cut open with whips. Others were chained in prisons. Some died by stoning, some were sawed in half, and others were killed with the sword. Some went about wearing skins of sheeps and goats, destitute, oppressed, and mistreated. They were too good for this world, wandering over deserts and mountains, hiding in caves and holes in the ground. All these people earned a good reputation because of their faith, yet none of them received all that God had promised. For God had something better in mind for us, so that they would not reach perfection without us.” (Hebrews 11:35b-40)

None of them received all that God had promised. And we won’t either. Not in this life, anyway. It was their forward-looking faith that enabled them to live for God in their present, whether they were overthrowing kingdoms or being martyred. We, too, must have a forward-looking faith. A forward-looking faith is not shaken by cancer, the death of a loved one, or a seemingly unanswered prayer. A forward-looking faith sees this life in light of eternity. A forward-looking faith does not demand that God make good on His promises according to our timetable, but rests in His sovereign plan. A forward-looking faith does not see Our Best Life Now, but then, with the now merely preparing us for then. The aforementioned paradox is understood only in light of eternity. God is faithful to keep His promises… but it may not be in this life.

Friday, June 4, 2010

School is out!

Brighton is on top of the world - done with 5th grade and ready for summer! He made all A's and 100's on all his taks test. He his getting ready for church camp - his first sleep away camp. This summer is going to be a great one for the little boy!
This past few days have been hot at the house - the AC is out, but we are grateful that we can go upstairs to sleep where it is cool. We hope to be fixed by Saturday - we will see - but I was thinking how wonderful it is to live in a place that we have air conditioning. Even many of our poor have cool are here. I am so glad to be in the US!
Molly has had a fair week - no doctor visits, always nice! We can't tell that the Botox has done any good yet, but we still have some time. Thank you all for keeping her in your prayers!

Saturday, May 29, 2010

Botox and ortho

Another week of doctor appointment and new potential problems. We finally had our first course of botox on Wednesday! I was expecting to see results the next day, but no, it takes about 3 weeks to really see how well she will do. I know, be patient - but I hate that.
Thursday we saw the ortho doctor for the first time. I already knew in my heart that we were having hip problems, but now we have the x-ray to prove it. The good news is that her right hip looks good, bad news is that her left hip is not forming. We had been told about this potential problem from the time that she was 4 months old. It is a result of her high tone and not being able to sit, or walk or crawl. The body is so amazing with how it all works together and develops and it is so sad to see that process be interupted.
The ortho doctor has ordered us a brace that will be here next week - this is good timing with the botox, it will allow us to see if she will even be able to wear the brace. If her legs are not loose enough to fit into the brace by 3 weeks, we will have to go to surgery. If we are able to get into the brace then we need to wear it 20 hours a day and we will see it that will do the trick or if we will be going to surgery. We know down the road that her back will be an issue, but that is down the road, so not worring about that now.
We also saw the GI doctor and he was happy with how she looks. So that is good!
Molly also has 2 more teeth peeking out. These are the top 2! She is also loving the warm weathter and we have been spending time outside sitting on the porch, enjoying the heat.
Thank you all for the continued prayers.

Thursday, May 20, 2010

Another busy week

It has been a bit since I have posted anything. I have started working and it is great to be out of the house. I am too busy at work to think about the world of problems, therapies, medications, ect. I miss my sweet little girl while I am gone, but she is well taken care of and I know this is what will make me a better mom for now.
Molly has a g-button now, it is already yucky and we are on ABX to try to get it back in good shape. She still is not taking as much as they would like, but it is way more than she was and she is gaining a bit. What is most important is that she is happy. It is all that we really care about anymore.
I have started to notice that her hips are starting to click. I am guessing that her hips are starting to come out of their socket. We were told that this would happen and were referred to Scottish Rite. I got the call this morning that they will not see her. She is basically too bad for them and they have limited resources and don't want to waste them on a child like Molly. They want to work on kids that have a better outlook. So now we will be looking for an ortho doc that is not with them and hope that they can help.
On a happy note, Molly is doing well in Therapy. She is sitting up more and has some head control. She is still having seizures, but no bad ones this week.
Brighton is doing great also. He is almost done with school and then I will have a middle schooler!

Friday, May 7, 2010

It is Friday

It has been a long and difficult week. We went on Tuesday morning to have the g-button placed so that Molly could get the fluid and food that she needs. We stayed at Medical City Dallas for 3 days and were able to come home late on Thursday. I am amazed at the amount of medical supplies that now clutter our home and we are busy learning the tricks of tube feeding and which supplies we need and when. I know that in a couple of weeks that it will seem very easy and second hand.
We had to reschedule our Botox appt for a few weeks from now, which I am very sad about. Out PT again today discussed how concerned she is about her hips and we know it will not be much longer before they start popping out of joint because she has not been able to move them the way she should.
We also had to delay our neuro appt because of the surgery and she is having more of the startle seizures again. Every time we up the dose of sz med that chases away the seizure, they stay away for a shorter period of time. This time it was only a few days before they were back again. I know that soon we be having another EEG and will be changing med or adding meds.
I will never understand the creul nature of life it kids like Molly. I would do anything to trade places and make it all better. I bargain with God repeatedly, but there seems to be no answer (I know that he has a plan, and I can not imagine what it is, but it is so painful. I cannot image any good from the pain, but hope that one day there will be some)
I will be starting work on Monday and have to say that I am excited. I think it may be the only thing that will keep me from going insane. I need to hear about out people's problems and work on fixing them instead of just fixing our family. I have been listening to a ton of review cd's to try to get my brain back in working order.
Molly will be well taken care of while I am at work. Her dad will be doing much of the work and we have some great great help during the day. We have requested a night nurse and hope to have someone setup very soon. Sleep would be wonderful a couple of night week!
Thank you all for continuing to pray for our family!

Sunday, May 2, 2010

A saying that I like

"Whenever one door closes, another one will always open, BUT sometimes it is HELL in the hallway!"
I do have to say that the Lord has provided over and over for us this year (but never the way I would have picked and still not sure about some of the things that he has done)! I also feel like almost all of this year has been in the Hallway and I am still looking for the door that will lead to the easy, flower lined path!
Thank you all for continued prayer! It is only God and his glory that gets us to tomorrow!

Busy upcoming week

I have to say that I am already so tired and the week hasn't started. Last week was very long and hard. Molly is having more seizures, so we have increased her meds and will see her neuro on Tuesday. I am very grateful that they will work us in anytime we need it. Molly has also pretty much given up eatting and drinking over the past two weeks. This has been heartbreaking and we spend hours each day trying to get her to drink. She has just lost all interest (we were warned about this happening due to the brain injury). Until this last week we were not going to consider a G-tube. I really hate the idea of having to feed my baby this way. I keep asking God why!
I am so sad, heart broken and mad. I wonder what our future will hold and want to protect her from everything that I can. Kelly says that he can't stand her not eatting any long so we will probably have the tube placed this week.
We also are scheduled for our first course of botox this week. This will hopefully relax her leg muscles and she will be able to rest a bit more.
We will see - This week will be something for sure.

Saturday, May 1, 2010

Friday, April 30, 2010

Sweet girl

Another post stolen from our friend!

Here is another entry from our friend's blog. It says so many of the things that I have not been able to. Titus is almost 3! Molly is almost 1! We are still early into our journey and met with challenges and blessings day after day. I will write later about this weeks journey - it is still evolving and the emotions are too confused still.

Through the Dust
After yesterday's soap-box, I realized there were a few more things I wanted to share - and this is more about Titus and what we have learned. And what we as parents of kids with special needs can do.

I mentioned there are a lot of misconceptions about Medicaid. Initially, I thought we would never qualify since we had private insurance and I would exceed the salary requirements. I was always under the impression that Medicaid or state programs were only for those who could not afford private insurance.

This is not necessarily true. Many of the state programs in the state of Texas base their acceptance on the child's need, not the parents income. For us, Titus is considered Medically-Dependent - and through a several month-long process with help and assistance about the waiver program, Titus was accepted into the Medically Dependent Children's Program (MDCP) which approved him for Medicaid. But some children wait for years to be approved. For Titus and our family, this has been a blessing. It has provided a budget for nursing, aides, therapy, toys and other items that private insurance would not pay for. But for families that are still waiting, they carry the burden and cost.

And while I am very grateful for the assistance, it can also be overwhelming at times to realize your child is medically-dependent. In layman's terms, my child relies on pharmaceuticals, oxygen, 24hr care, and therapy to live. Without oxygen, Titus would not maintain his oxygen saturation and eventually (and quickly) erode his body. Without the medicines and breathing treatments he takes multiple times a day, his body would easily succumb to infection and secretions. Without therapy and nursing care, his muscles and eventually his cognitive abilty would waste away.

If I allow myself to dwell on the facts that my child is medically dependent to live, it could easily sink me into depression and grief. And I have had those times. As our incredible pastor, Dr. Jeff Warren at First Baptist McKinney, shared with us early in this journey - we will grieve. And we will grieve at various times throughout his life. At the time, I didn't understand that, but after 2 and half years, I am beginning to understand this. There are days the grief of "what I thought should have been" are overwhelming. There are days I can't look at another 2 year old child who is walking and talking without tearing up. There have been days I have just pulled my car off the road and cried. And I had to learn that doing so is part of the process of acceptance. But it doesn't stop - grief sneaks up on you when you least expect it some days.

Yesterday, I listed things you could do assist a family, but today, I really want to address parents of children with special needs. And, I would actually love to get your feedback and responses. But if you are reading this and you just found out your child has a special need, here's what I would encourage you to do.

Educate yourself - learn all you can about your child's disabilty. Join chat rooms, forums, read research papers, find the experts in the field and see what they say, but learn all you can.
Once you learn, be open and realistic to the outcome for your child. Accept who they are and what they can and will be able to do.
Along with the acceptance of your child's needs, you also have to let go of your hopes and dreams you had for this child. Your child will take a different path than others - one that you did not choose, but a journey all the same that will take both of you on a trip you never expected. You can choose to be open to the new journey or be bitter for what will not happen. Bitterness can destroy you - and although hard to let go of "your" dreams, you have to accept that there is a another plan for your child.
Don't get mad at God. Frankly, as I see it, He made me and can easily take me out if I get in the way. But Psalm 103:14 states "he knows how we are formed" and Psalm 139:14 tells me "I am fearfully and wonderfully made." God did not make a mistake when He formed your child. He did not turn his back, did not forget, did not ignore your prayers. He has a plan and made your child the way he is for a purpose.
Ask for help when you need it and accept help when offered. This was very hard for me at first. I didn't want people cleaning my house, cooking meals for me, doing my laundry, watching my other kids. I wanted to be super-parents who could do it all. But we aren't designed to live life independently like that. As Hilary Clinton named her book "It Takes A Village", you will need to learn that it takes a village to survive and help your child. And through that, you will learn what community means, what family means, what serving others means. You will learn to share and be vulnerable. You may learn that you have a nurse or aide in your house when you are asleep (and have to remember to not go to the kitchen for a drink of water in your underwear in the middle of the night.) You may learn to be elbow-to-elbow with a nurse in the kitchen when all you want is a cup of coffee.
Find a support group. You are going to need someone to talk to, cry with, ask questions of, be vulnerable with. Your immediate and close friends may not understand what you are going through - but true friends will be there as a shoulder to cry on, arms to lean on and prop you up, and prayers to ever sustain you. If you isolate yourself from your friends, they are not going to know how to help you out.
Stay true to your marriage. Be prepared that this will be hard on your marriage. Don't get jealous if you feel your spouse is spending more time caring for the child than they are with you. But also realize that you will need to train others to care for your child so that you can spend time on your marriage. Make the time. You will need each other more through this, especially in the early days as you learn about all the disabilities your child may have and what type of life they may be facing. Even in the midst of it all, remember that you vowed "through better or worse, through richer or poorer, through sickness and health". This will test those words - stay true to those vows.
Find a special needs financial planner in your area/state who can walk through a life-plan for your child. You do not want to make a foolish mistake that could disqualify your child for state programs for life, nor do you want to unknowingly pass up aid/support that is available. As hard as it is to think of your child's future when they are very young, you do not want to wait to late to make a plan for their long-term care when you will not be able to care for them or not around.
Find time to play with your child. Your child needs to be held, loved on, kissed on, and played with. He is still part of your family. If you have other children, teach them how to play with your child. I can tell you there is nothing sweeter than when I see one of my older boys get down on the floor and care for Titus. Titus knows his brothers and he knows he is loved by them.
Include your child in family activities whenever possible. It may be very difficult to take your child out in public. I understand that - there are days you don't want the stares or questions by strangers. But, don't rob yourself of keeping family activities and traditions they way you always have. It may take a little more planning and time, but take your child with you if possible. Titus goes to Tucker's baseball games, Aidan and Noah's swim meets, goes to store/mall shopping with us, goes to church with us. Yes, it means taking oxygen with us everywhere. And yes, unloading and loading the stroller get's old - but he will eventually have a walker or wheelchair, so it is not going to change. It is now just part of the routine. And trust me on this, you taking your child out will inspire others, will educate others, and will show others that a child with special needs can still be part of family activities. Know that your vacation plans may change, but still take a family vacation.
And as I mentioned above, remember it's ok to grieve. Let it out but don't live in it.

Through the last few years, I have learned to live Psalm 23 "the Lord is my shepherd, I shall not want". Having a special needs child didn't test my faith, it has deepened it. It has taken me to some deep valleys where I have had to learn that God is truly my provider, my redeemer, my salvation.

Have I questioned God? - many times.
Have I got mad at God? - of course.
Have I screamed out WHY? - yep.
Did He ever leave me or forsake me? - never.

And that is where I have learned that "God will make a way, when there seems to be no way. He works in ways I cannot see, God will make a way for me." (thank you Don Moen for penning those beautiful words to that song). So I carry on "through the dust". And I pray you will also find your way "through the dust".

Thursday, April 29, 2010

A Post from Another Special Friend

I copied the post below from one of my friends blog. It says it all so well. Their little boy is Titus and he is a beautiful soul. His dad writes this blog that I follow and his mother is always offering her support. There family has helped us so much on our journey and I just love how this was writen.

If you live in Dallas you have probably been shocked and saddened about the little boy dubbed Wylie's Angel. For those of you outside of the area, let me tell about this horific story.

Several weeks ago, workers hired to mow a city park near Lake Lavon in Wylie, TX, found the body of a 6-yr old little boy. There were no signs of trauma, no identification, no missing child reports - no evidence to point to what happened.

The police released a composite drawing of the child to the press along with the news that the child had been g-tube fed. A few days later, they released information stating the child was deaf-blind. My heart broke when I initially heard the news, but as details were released showing the little boy had special needs the same as Titus, I became more and more emotionally involved in the story.

As the weeks have progressed, the little boy was identified and his grandmother has been arrested and charged with his death.

The details around his short life are heart-breaking. At one month of age, he began to experience seizures. He was diagnosed with Well's syndrome, diagnosed deaf-blind, was fed through a g-tube, and had no control of his arms/legs.

His parents divorced when he was quite young - and there have not been a lot of details. His father is in the military and although he had not seen his child in 2 years, he regularly paid his child-support.

At one point, the child had been admitted to a care facility for full-time care, but for reasons unknown, the mother checked the child out of the facility, and then left the child with his grandmother. The mother now lives in Oklahoma and the grandparents were living in an extended stay hotel in a suburb here in Dallas.

And those are the only facts that have been released.

As I have read these stories, I question "why?" Why did this happen? Why didn't this child and her parents/grandparents get the assistance/help he needed? How did this child fall through all the cracks in the system especially after he had been diagnosed and checked into a facility?

But deep down, I know some of the answers to my questions. And if I can convey anything to those of you who read this, I want to let you know this.

Life with a child with special needs is hard. There is no way you can ever know what a family goes through until you live through it yourself. It's emotionally draining, physically exhausting, and tough. Statistics show that a majority of marriages that have a child with special needs ends in divorce. And that just makes life all the more difficult for the parent who remains as the primary care-giver.

And to add to all the difficulties of care you provide, you have to navigate an incredibly difficult web of state and government services and insurance to get the assistance your child needs. It's not a one-call-takes-care-of-all type of situation. Some agencies are easier to work with (major shout-out to HIPP - Texas Health Insurance Premium Program) while others require HOURS on the phone EVERY WEEK providing the same repetitive information over and over. In the beginning, Becky and I spent hours on the phone being transferred from one office to another, from one social worker to another, waiting on hold for answers to our questions. And since you have to call during working hours, time spent on the phone takes away time at work or time you should be caring for your child.

There are still services we are finding out about. And there is a lot of misinformation about Medicaid and other state programs. The waiting list for most programs are YEARS - and while you are waiting, you are still responsible for care and costs. Even toys that are designed for your child are so expensive that most people can only afford to buy one a year.

And even once you are approved, you are still tending to the daily needs of your child and your family but also have to learn to bond/meld with a nurse/aide that may be assigned to your family.

At least, that's what we do. We have stated, we never want Titus to be a "houseplant" sat in the corner and ignored. We work with him, our nurses/aide works with him, his brothers play with him. And Titus responds.

But we know we aren't like other families. Some families can't afford the time on the phone to get to the right people to talk to. Some people are confused by the questions on the forms you have to complete (i.e. "how many chickens/livestock do you own?" - I kid you not - that is one of the questions). Some people don't want to ask for help. Some people are ashamed/embarrased by their child. Some people are depressed and tired from dealing with their child and can't handle anything more. Some people don't have a support system. Some people feel like they have no other options. Some people don't like to ask for help.

And some people abandon their child to die in a park.

I accept that we live in a broken, fallen world. But I also believe every life, every heartbeat is crafted by God and has a purpose. And this little boy needs to serve as catalyst for change that we (and I do mean all of us) need to open our eyes and make a difference to a family that needs help.

You may think there is nothing you can do, your effort would be too small, and you don't know how to help. Or maybe you feel uncomfortable (get over it - it's not about you), but let me tell you a few things anyone can do.

If you see a family with a child with special needs - offer them a smile. Speak to the child even if you don't get a response. Never ignore the child or look away.
Take the time to get to know them.
Ask if you help (they may say no way - but keep asking). Ask questions like "how could I help you out on Tuesday mornings? (make it a specific time when you are available not just something general). Be willing to do their laundry, mow their lawn, clean their kitchen, run an errand, read their child a book, etc.
Ask them if they can show you how to help care for their child so that they could have a few hours away or a date with their spouse.
Give them a hug.
Write them a note. Tell them you admire them for their dedication to their child. (Quick note to the unknown prayer warriors at The Heights Church in Richardson - you will never know how much your little notes to us every week mean to us - we have never met you personally, but the 2-3 notes we get every week lift us up).
Find a special needs financial planner in the area and take the family to them - even pay for the consultation. We would never know some of the things we do if it had not been for TJ Kroehle and Mike DeGucci.
Take them a meal or better yet, have them over to your house for a meal.
Ask your church to have a special needs ministry or host a night-out for parents of special needs kids
Realize that birthdays for their child can be hard - the day of their birth generally doesn't bring back happy memories. But recognize the child on their birthday - they probably won't have the special type of parties/celebrations that you would plan for your children for numerous reasons. And gifts/toys for the child are hard to buy. But once you know what type of stimuli the child needs in a toy - be on the look out for toys like that. Ironically, some of the best toys for Titus we have found at the pet store.
Realize that child probably does not have friends his own age; doesn't get invited to parties; doesn't play t-ball, soccer; doesn't always have "cute" clothes or bows in their hair; doesn't have portraits taken. So make it a point to do those things - include the child - teach your own children to be comfortable and kind to a child with needs (not to point or ignore).
If your child asks a blunt question such as "What's wrong with them?" - it's ok. For us as parents, it's a time to educate the child and show your child how to interact with my child. Don't turn your child around or apologize. Trust me - we are use to it - and we have learned how to answer the question. But also know that some parents have a hard time with that, so be willing to step in and state "I'm sorry - we are working on my child's blunt approach - but tell me about your son/daughter?"
Volunteer at CASA - Court Appointed Special Advocates
Get to know a social worker - they are underpaid, overworked, but can be a wealth of information.
And last of all, pray. Pray for the child, pray for the family, pray for the marriage, pray that others will see this child as a blessing not a burden.
My prayers still go out to Wylie's Angel and his family. My comfort is in knowing that this child is now the arms of God and perfectly healed, but there is still a lot of healing/comfort that needs to happen hear on earth for this broken family.

Monday, April 19, 2010

Two new teeth! Our First

Last night Molly was chewing on my finger and I felt something sharp! I felt again and yes it was something sharp - so I lookes at those sweet gums and two little teeth were peeking out. These are the two on the bottom and still no sign of the ones on top. It is nice that some things are normal!

Wednesday, April 14, 2010

What caused all this?

We know now that this was all caused by an infection that I had while I was pregnant. I never felt sick, but that doesn't matter. This horrible little virus left me alone and attacked my sweet angel. It devastated her brain and her eyes. It is something that so many mothers are never warned about, but is not as rare as it should be.
Here is a link with more info
I wish I had known more.

Saturday, April 10, 2010

Prayer request for the week

Molly is on baclofen for her high tone - not sure if it is helping or hurting at this point. Please pray that the medicines work for her and that her tone gets better and that she does not hurt.
Molly's seizures seem to be under control for now which is a big praise! (as big as taking a bottle)!
Molly has gained a pound and now is 14lb 5oz! This is great, but we are still not on the growth chart. We need to grow and we need for her oral motor skills to improve. We got the lecture yesterday about how she can loose her ablity to suck and her oral skills are a big issure. God can fix this! (we also have some exercises to try)
Pray for the rest of us - Me finding the right job and to see the joy everyday. Kelly to stay strong - he is my rock and of course sweet, wonderful Brighton! He keeps me going. He is so full of love and such a tender soul. This week has been a big one for him - he COMPLETED his 90 day BIBLE!!!!!!!! He has grown so much this past year! He also received his brown belt in Karate last night. WOW, I am so proud and still so concerned about him. I know that he wants everything for his sister.
The last thing that I will ask for (today) is for my parents. My mom is doing well with her treatment - her leg is almost healed! She is also ready to move - BUT my dad is not yet. He get mad anytime someone suggest that they move (it is always a bd idea if it is my idea or my mom's) So I ask that God changes his mind and that someone will come along and want to buy their home in Amarillo. I truely could not have made it this far on our journey if they had not been staying down here. I know that this is where they need to be. They maybe helping to care for us now, but it is only a matter of time before I will need to be taking care of them.

10 months old

Yesterday was 10 months since the arrival of our sweet girl. It has gone by so fast at times and so slow at others.
We have had a couple of big appointments this week. We had a good visit with cardio - no heart issues, so one less thing to worry about. We also saw the developmental specialist - this is always the kick in the gut appointment. It is such a reminder of where we are. We did gain a pound over the past month, which we feel is great.
I also have been making plans to go back to work part-time. I am so thankful that I have been able to be off for so long, the lord did provide for us. I am ready to be out of the house more and know the rest of the work has been spinning, even if my world has not.
Thank you all for the notes of encouragement!

Friday, April 2, 2010

Finally taking the bottle!!!!

It feels like such a victory! Molly is finally taking the bottle without a fuss. She only takes 3-4 oz at a time, but we are making those count. We use a formula to increase the number of calories per oz. We have a doctor visit on Tuesday and are anxious to see if we have gained a bit.

Wednesday, March 24, 2010

Sz update & Botox appt

Well, It is Wednesday and we are still having more sz activity, but it is better than yesterday. We spoke to her neuro doc and he feels that this is just part of it all. He had told us from the start that he was expecting to see new and ever changing sz activity, but I was hoping for more than just 2 months of good control. We have increased her sz meds and hopefully that will help. If not, we will be going back to the hospital for another EEG and change the meds.

Botox! Well, not yet. We had our first appt with physical medicine today and she has given us baclofen for 1 month then we will go back and probably do Botox at that time. The great news is that the doctor is wonderful. We fell that we are on the right track and at the right place.

Thank you all for the continued prayers!

Tuesday, March 23, 2010

Prayer request - seizures

Good Morning - It has been a long night, Molly has been having more seizures. I am not sure if it is from all the travel or just this horrible brain problem. We were told to expect ever changing seizure activity, but things had gotten so much better on the Keppra (we are still on a low dose) - I was hoping that we would not have these worries for a bit longer. We will be speaking with neuro for additional plans, but I know it is the power of prayer that gives us the most relief. Please pray for her comfort and healing. With love! T

Friday, March 19, 2010

Spring Break in Amarillo

So my mother is done with her treatment and we all headed to Amarillo for spring break. My parents picked up my brother's three kids on the way down and it has been a noisy house full. I think Molly enjoys all the noise and attention she gets from the kids. It has also been nice not having any appointments or therapies for a week!
This next week we will be back to all the work. We even have our first appointment to get botox (for Molly - no me). It will hopefully relax some of her tone.
Thank you all for the continued prayers!

Wednesday, March 10, 2010

Making more noise

MOlly has been having a good week. She seems to be "talking" more, which we love. She also seems to be doing better in therapy. We will take every good day that we get!
My mother only has a couple more days of radiation therapy left and then she is hopefully done with all of the therapy that she will ever need for her cancer. She had a set of clear scans last week and we do not have to go back until July!
My mother-in-law is still getting treatments but doing well!
Thank you all for the prayers - they are working!
PS - Pray that my dad decides that it would be great to move to McKinney. He gets mad anytime anyone suggest it, but I can't help but believe this is where they should be. They will keep their trailer down here and split their time between Amarillo as long as Molly still needs help with her care.

Sunday, March 7, 2010

laughing baby

There is nothing in the world as wonderful as a child laughing. We have found that we can now get Molly to laugh when we bounce her on a knee or lay her on her back and move her legs quickly but gently. We gather around her and laugh with her.

Thursday, March 4, 2010

Bottle time

One last prayer request - please pray that Molly will start taking and loving the bottle! We are weak and she wins when we try to be tough and switch her over.

Prayer list

So several of you have asked lately what to pray for - first of all, thank you for every prayer.
For Molly - We need that miracle, modern medicine has no answers for us, so it is totally in God's hands. I know that it would be so easy for him to do this, but I don't know if it is his plan. Please pray that no matter what his plan, that she will be comfortable and happy. We ask him to help her grow and develop.
For us (Kelly, Brighton and me) - pray for strength. Please pray that we can joyfully accept his plan and see how he provides. Please pray for healing of our hearts. My heart still breaks so many times each day and I continue to struggle with the why - I know that I will never understand while I am on this side of heaven, but he does say that he will make things work for good. I do also find joy each day when I see her smile and hear her make sweet little sounds.
Thank you all! We love you and we are so thankful for our friends.

Sunday, February 28, 2010

A wonderful smile

This morning is a beautiful sunny day and the little girl is happy. She was smiling this morning while her brother was enjoying holding her. She even laughed a bit - which is such a sweet sound. A great start to the week.

Saturday, February 27, 2010

My Sweet Girl

Well it has been another week. Good in that we did not have any doctor appointments, but hard because we are now officially on the MDCP program. What does that mean. MDCP - medically disable children program, a great program, but I never thought that I would have a child that needed it. I did not even know about such programs 6 months ago. It has been alot of work and so many hoops and then the final realization that your child qualifies for it. It is so hard to think about the future and how it will be so different for her than what I had planned. I only hope that she will be happier soon and that we can keep her comfortable. I think that this is one of the things that bothers me most. She is not happy so much of the time and I so want her to be. I want to make sure that she is not hurting. The more seizures that she has the more unhappy she seems - It has improved with the seizure medicine and we continue to work with the doctors and adjust things. I hold hard her and kiss her, as does my husband, her brother, along with the rest of our family and friends. She is so loved. I pray everyday that it would be me and not her. I know that our wonderful Lord has great plans and can do great things, and I also see that we are all being refined, but there are times when I can only beg for mercy. Thank you all for continuing to pray, it is what helps me make it through each day.
Next week should be better! We have two more weeks till spring break - a week to see family and a week with no therapy, a week with no appointments or schedules.

Thursday, February 18, 2010

Wednesday, February 17, 2010

Warm cake is so wonderful

On a happy note, today was the boys bible study for the 90 day bible. They have completed 1/3 of the Bibile so far and it is so great to hear them discuss what they have read and some of the lessons learned. For this weeks snack - cake! Right out of the oven with warm icing. The whole thing was gone in less than 15 minutes and it was so wonderful. It has been through the fire of the past 9 months that some of the simple things seem even more wonderful. We all need to live our life more like that of a 10 year old! Enjoy the moment and take it a day at a time. We don't know what tomorrow may bring, but God will provide - and it is all better with warm cake.
Love you all and I am so thankful for our many friends.

it keeps getting harder

Every doctor visit seems to bring more pain and heartache. Yesterday we spent over 2 hours with thew neurologist. He was wonderfully patient and went through scans, called consulting doctors, completely reviewed our entire case. The conclusion is that all of her brain injury was caused by some stupid, random infection that affected her while I was pregnant. This is slightly better in the long run when thinking that it was from a genetic cause, which is what the neurosurgeon was concerned about. The end result is still devastating - this beautiful little girl has a brain that does not work and the tissue is very abnormal. We have been told that her seizures will continue to get worse over time and change. Even the best doctors in the world would not be able to control then, but we will do the as much as we can while keeping her as alert as possible. He does not expect that she will ever be able to walk or talk. Her vision will probably remain extremely limited. She is going to continue to have problems with her tone, her hips will not grow right due to these issues and her case will remain extremely complicated. He expects that she will be severely mentally handicapped. it is wrong to have to discuss a shortened life span for your child and to think about some of the hard situations that we will be facing.
I continue to pray for guidance. I want to always make sure that we are doing what is best for her. It would be so much better if God would just go ahead and heal her.
thank you all for the prayers and notes - there are days when I just don't think I will survive and it the encouragement that comes at the right time that helps.

Thursday, February 4, 2010

Another hard visit

We were at Children's medical center bright and early for Molly's MRI. She was not happy at all with being bound up and the loud noise of the test. I was very hopeful as we finished the test and I could see some of the images on the computer screen. I knew from looking at her prior test that this one was better. The shunt was working and there was more brain tissue. We left the hospital to kill some time before our appointment with the neurosurgeon (he would read the scan before we would see him). I was so sure that we had made a major turn for the better and he was going to give us great news.

When we arrived to see him, he was not filled with good news. He had always been our very upbeat doctor, but not today. He came in quite serious and wanted to know how she was doing developmentally. I suddenly felt sick, realizing that this visit was already not going the way I wanted. He said that he had some good and bad news. The good news was that the ventricles are smaller, the shunt is working and that there is some brain regrowth. Then came the kick in the gut. The brain that was regrowing is very abnormal looking and the the fact that she is having seizures is a bad sign. He thinks that it was not what we originally thought it was that caused this, but some other issue that happened at a critical point in development. He is not sure if any of the regrowth that she will have will look normal and that the neurologist has the best picture of her future. I let him know that I don't like that outlook, and he returned to his kind disposition that we have seen before. He says that our neurologist is one of the best and is right most of the time, but not to lose hope - there are always those kids that really surprise us.

I know that there are miracles, and I am ready to see one! We love her no matter what. She is our angel and I know that God can work everything for good. I do wish that he would let us in on his plan. I am ready to hear from the burning bush or have one of those amazing experiences that we read about in the Bible. Until this past year, my path was always so clear. I did not have doubts on the direction that I should go. This year has been the hardest in our lives, but we will get through and we will get through together.

Thank you again for the calls and notes. It all matters.

Wednesday, February 3, 2010

Thursday - the big day

Well - Thursday is the day that we have our next MRI of the brain and see the neurosurgeon. We are hoping that the brain has grown and the fluid is decreasing. This is always a stressful visit and I am sure that I will not sleep tonight.
The good news is that she is making more noise and even laughing on the rare, sweet occasion. I want everything for this sweet little girl - I want her to be able to walk and crawl. I want for her to be able to look at my face and see me smiling at her. I want to hear her giggle as we play. These are the things I pray for each day. I know, one day at a time.
Thank you all again for all the prayers. We love you all!

Monday, January 25, 2010

A week without any scheduled doctor appts

It is great to start the week without having any doctor visits on the books. We only have vision therapy, physical therapy and OT scheduled for this week, along with a weight check and a visit for the developmental specialist with early childhood intervention. This is a slow week for us, hopefully it will stay this way! I even cancelled one of our appts with the eye doctor next week (I decided that he doesn't do anything that helps her, he just makes her cry and says to come back in a few months). My goal is to make sure that she gets great care, but that we weed out the things that just waste of our time or will make no difference in the long term. Another example of this is some of these doctors suggesting that we do a big run down blood work to try and discover what type of infection caused all this. This would be wonderful if we could time travel and treat it, but that is not an option. When I ask if it will change anything (treatment plan wise) if we knew, the answer is always no. So no sticks for the sweet baby! Life is too short for the things we don't need.
We hope to have a great week and just enjoy some great Texas weather.

Sunday, January 24, 2010

God provides the people you need

One of my regular prayers is to provide the people that I need, when I need them. So far, God has been wonderful about doing this in my life. I have some of the most amazing friends and have met some of the most incredible mothers. The mothers that I have met have been so great at directing me to the resources that I need and preparing me for the things that the doctors have told me. I know that it is God that has put these people in my life and that he will continue to provide in many ways.
These past several months have been so hard and I know that many times people do not know what to say to make it better, but by them just leting me know that they are on the journey with me. By just sending me a note or a call saying that they have been thinking about us, it keeps me going. Kind words, saying I love you, I am praying for you, I am thinking about you mean so much. I am still so perplexed by the journey that we are on, but I am sure that there is a reason and that God will give us all that we need. I know that I will also continue to meet amazing mothers on this journey and that I cannot imagine how we will be changed.

Friday, January 22, 2010

Little boys are the best

I am so lucky to live in an area that has a number of other great christian families.
Brighton and I have started reading the 90 day Bible and about a week into the adventure, I decided that it would be great to have some of Brighton's other friends to join in on the challenge. I have 3 other little boys that are now committed to read the entire bible in 3 months. We are meeting once a week at my house and discussing each weeks readings. It is so great to see these 10 year olds doing what many adults will not even try. I can hardly wait to hear what they will say each week!
Brighton read over half of the Bible last year, and I love some of the questions that he asked. I know that even if the boys do not understand everything they read, they will be impacted for the rest of their lives!

Wednesday, January 20, 2010

Sorry for the delay in updates - saw neuro on Friday

Good Morning,

Well we saw the neuro on Friday and it was a fair visit. He believes that she is having focal seizures and will continue to have more and ever changing seizures. He is not a big optimist, but hopes that meds will help. We started her on a low dose of Keppra over the weekend and will taper it up over the next few weeks and see him again in a month. We are to continue to wathc her closely to see if we see any seizure activity, espically if it is clustered together. If so, back to the hospital. This little girl sure knows how to command attention! I thought we were already watching her closely, but I guess she would like a bit more looking after. What a little pill she is and we love her for that!

Thursday, January 14, 2010

Another day, another doctor visit

The daily update-
Today we had our regular visit with our developmental doctor. This is always a hard visit, but I have to say that she is wonderful at putting the whole picture together and she really cares about Molly. These visits always last about two hour and are very detail oriented. What we know is that Molly seems to be stuck at the developmental level of a 6 wk old. She has now officially diagnosed her as having CP and many of the issues that go with that. Molly is very high tone and we are hoping that they will do botox on hips to help those muscles relax. They are very concerned that her hips are not developing as they should and if we don’t address that soon, she will have to have surgery. The next issue that they are concerned about is her growth. She has now dropped off the growth chart for her weight and almost for her height. There are two things that are going on with her growth – one is that she may not be making growth hormone and two is that she is just burning so many calories (due to the high tone) that she can’t gain. We will now go for a feeding evaluation and swallow study. We have to make sure that she is swallowing liquids well enough to supplement her with a high calorie formula (she is currently a breast baby and really does not like the bottle). We are going to wait one more month before going for an endocrine evaluation. Her head is also no growing, which may mean her brain is not growing – we have an MRI in February to look at this. Our last major concern is related to Molly having seizures. We will see the neurologist in the morning. We will have more answers then.
These past few months have been the hardest of our lives, but it has taught me I can handle anything with God’s help. It has also taught me that there is still so much to be thankful for. I love my family so much and I am glad for each day with them. I am also so thankful for all of our wonderful friends and the support they give us.

Wednesday, January 13, 2010

A bright new day

It is amazing what a bit of sleep, time on the treadmill and a bit of time in the garden can do! It is a beautiful day in Dallas and Molly has been so happy. I just love it when she smiles! She almost laughed today when we were tickling her. It is these moments that are so special.

Tuesday, January 12, 2010

Good news and bad news

Well, we spent a long night at Medical City Dallas on the Epilepsy floor with Molly hooked up to an EEG and being recorded. We had to stay in a small area with her always facing the camera. She did great, but really hated having the leads glued to her head for the test (check out Kelly's facebook to see the pics).
The good news is that she did not have any of the speicific seizures that we were worried about. The bad news is that she did have some seizure activity, but it is much more easily treated than infantile spasms. We will discuss a treatment plan on Friady morning after the doctor has had more time to look over the entire EEG.
We will go to see the developmental doctor on Thursday and will discuss her growth again along with some cardiac concerns. We have decided that we just need to get all the test done and out of the way. It seems that every couple of weeks there is a new problem and both Kelly and I are so tired. I think we have both hit bottom and are just ready for the Lord to pick us up. I know that there is a plan and he has a wonderful plan, but sometimes it is a hard road getting there.
I want to thank you all for the prayers and warm wishes. It is our friends and family that have got us this far and that will continue to help us along.
Brighton is doing the best of us all. He is becoming such a responsible helper and is such a joy! He is reading the 90 day bible along with me. It is wonderful to see him grow into such a great person (even though I know that the teenage years will derail some of the sweet factor). I know that he will have a great base for his entire life because of the trials of this past year.
We love you all

Thursday, January 7, 2010

More pics from Thanksgiving

Family Pictures from Thanksgiving

I have got to stop seeing doctors!

I have said this before, and I will say it again - I hate going to the doctor.

Today we saw the pediatric neurologist. All the neuro guys are weird to start with and that is still true. He is very nice, but different. We reviewed the EEG results from Tuesday and it was another heartbreaking visit. We were sent to the neuro man due to repeat startling that just seems to be getting worse. Her EEG shows slow activity (consistent with a major brain injury) and very chaotic, high-voltage pattern when she is sleeping. We have to go back on Monday for another longer study just to confirm, but he is 99% sure that she has a disorder called Infintile spasms. The outlook is of course bad - as with everything, and the treatment options are few. There are only two drugs that are effective and one has a 40% chance of causing blindness - which the doctor was quick to point out would not be an issue since she is already blind. I could have come across the room and kicked him for that comment, but I also understand that he does not have the same hope that we do. The hope that she will regain some of her vision.

We continue to hope for the best and pray for that miracle. Molly is still the most beautiful baby around and our job is to make sure that she gets all the love and care that we can give.