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".