We have been sick in my house, first Gabby, then Andy and now me. Right now I am feeling my worst, plus Andy is very irritable today, I think from teething. He is crying a lot, and trying to touch a back tooth that hasn't broken through. To make matters worse, my daughter cries almost every time that Andy cries. She says it annoys her, and she is tired of hearing him cry, which is understandable. So, I have both of them crying, and I am really sick, achey, can't breathe, lightheaded, horrible.
By the grace of God, I get both of them to take a nap, and I too get to rest for 40 minutes or so. Then the lady from the Michigan Children's Special Health Care calls me. She tells me that the doctor has reviewed Andy's records, and although the microcephaly and Corpus callosum underdevelopment are there, they just don't cover developmental delays. I responded "Andy isn't simply just a typical kid who is a year behind and will soon catch up, he is severely impaired" and started crying. She explained that they only cover "medical needs", such as if he needed medication for something. They don't cover therapy, because of problems with the brain, which is leading to developmental delays. She says downs syndrome isn't covered, but a heart defect from the downs would be covered. The heart defect is a medical reason for coverage, whereas severe physical and cognitive impairment isn't a medical enough reason.
I am still so angry and am crying about this. When my husband got home, all I could do was cry. He was kind enough to take the kids to grandma's so I could get some rest. This is such a difficult time in my life. I for the most part enjoy it, but I feel so sad today. I shouldn't have gotten my hopes up about them helping us. Them not wanting to help Andy just breaks my heart. I feel like he deserves so much, and I want him to have the best shot possible at having a normal life.
He's been so frustrated lately, and can't communicate with me. It is so painful to watch him struggling so hard all the time. Amidst all this pain and sorrow, I feel so lucky to have my husband. He is being really good to me and our family. He is working really hard for us, working two jobs and busting his ass, so that I can stay home with Andy.
I continue to pray for Andy's advanced development and happiness. His birthday is approaching, and that is hard as well, because he will be two, but is still so helpless. I really feel like we can still be a happy family, and find ways to make Andy's life enjoyable, but some days are more overwhelming than others I guess.
I just became a registered nurse, and my ten-year-old son is infant-like, has frequent meltdowns, and cannot stand without support. He is missing a piece of DNA (chromosome 9q22.2) but we are unsure if it made him disabled. He has a diagnosis of severely multiply impaired, paucity of white brain matter, partial agenesis of the corpus callosum, microcephaly, deformities of the ankle and foot, and Autism.
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