Today has been a tough day for my mommy heart. Today, I received a phone call from a lovely woman named Renee. She works for medicaid and called to help guide me. I am so thankful for her help. She informed me that JT needed a referral to get approved for medicaid and provided me with the number to the Medicaid waiver office. I called Tawana. Tawana was not so kind. She informed me that their was a 6 year wait list for Justin to receive any services from them. She then told me that if I wanted to bypass the list I could put JT in a nursing home for no less than 30 days. I instantly began to cry. I got SO sad and so angry. I consider myself a strong person, but this, this broke me. I began to tell her through my tears that I understood it wasn't her fault but that I was disgusted and appalled at the fact that they would tell me, to get my child help I would first need to abandon him in a nursing home! I am still so angry about it. What kind of system is this?!?? I broke down into tears, JT and Caleb both rubbing my shoulder "what's wrong mommy?" "Are you okay mommy?" Trying to pull myself together I got JT ready for school. As we waited for the bus to come I broke down again. How are we going to pay for his therapy? Not everyone is as gracious as his therapists in DC. Not everyone will allow us time to come up with the money. How will he ever get a new stroller? His stroller right now is an $8,000 stroller! How will he ever get the equipment he needs to continue to grow and strengthen and walk?? We can't afford any of this! I then thought, if we had stayed in VA, we might be living in a tiny little home that hardly holds us but at least JT's needs would be met.
After asking for prayers, which I thank you for I then decided to write the governor. I wrote him and told him how disgusted I was at this system. How the state isn't taking care of children with special needs. (I was much more polite and articulate in my email.)
Every time I look at JT my heart breaks. We do all we can for him, so many people do. You can't understand what it's like to have a child with special needs unless you have one. That may sound harsh but it's true. You can have sympathy or compassion but you don't know what it's like. We don't get to go to a park b/c I can't watch C and E and help JT and watch the twins. I don't have 3 little boys running and playing. You don't know what it's like to watch him sit, watch and listen to his brothers play and want to be apart of it. You don't know how challenging it is for us to take the boys out to do anything special. We want to take E ice skating. How do we do that? We can't take JT. What is he suppose to do? Life with a child with special needs is difficult. Why do people make it more difficult. The system should work but it's broken. It's more broken than my sweet, amazing, kind, loving little man!
When you come across a person who has a child with special needs, you should know that when you have a child with special needs there are times of anger, sadness, joy, delight, happiness, mourning. It may sound crazy. How do you mourn a child who is with you. You mourn milestones. We delight in him. He is incredible! He is a blessing! He brings joy to everyone he meets!! I wouldn't trade him for the world, yet still, we look and wonder, what would he be like if he didn't have CP? Let these people mourn. They don't need a pick me up, they need a shoulder, a strong shoulder to say "it's okay" "I am here for you". We don't need a "you are great" or "well, at least he's here." We need people to come along side of us and say "it's okay to be sad and angry right now." "it's oaky to wish your child could sit up by himself."
Moving along... After a few moments I decided to call our lawyer back in VA. I began to weep a little on the phone with her explaining our situation. She said she was going to file JTs suit this week. Please pray that she does. Please pray that JT gets the VBIF. (Virginia birth injury fund) If JT gets the fund then they will pay for his every need! We won't have to worry about his therapies, surgeries, procedures, equipment... He is covered and this wretched world of medicaid can go away! They will also backpay for all of the years of therapy and equipment.
I sometimes lose sight of God, of how big he is, of how much he loves us. I know he loves me, I know JT is a man after his own heart. Every morning JT wakes up and is literally singing songs of praise! He teaches me a thing or two more often than I like to admit. God is going to take care of JT and not in my way or in my timing, much to my chagrin. God pretty much NEVER does it my way, but I guess that's a good thing. I am laying this down at his feet. You are my witnesses and have the right to call me out on it. If I give it to God, I give it to God. I will do my part, I will do what I need to do to help JT. But I will not stress (that's super hard for me!) I will not get angry with those I come across. I will trust in God and seek his guidance. (I am having a hard time writing this, guess that means I am doing the right thing.) Pray for me, pray for peace, guidance, peace, love and peace :-) Pray for JT too. He is really making such incredible progress. Pray nothing stunts that progress!
Thanks friends!!
No comments:
Post a Comment