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.