Good News Again

Benjamin’s blood work came back fine… no Muscular Dystrophy. I am so, so glad as I’d rather he have Cerebral Palsy than that any day. MD is degenerative, CP is not. So, while we are grateful for the good news, things still don’t add up. We believe he is fine cognitively… we aren’t concerned that he doesn’t point for things or say Mama or Dada specifically. We don’t see a delay here but it just doesn’t add up that he is 13 months old and cannot even get into a sitting position. He’s nowhere near crawling or pulling himself up. Maybe this is developmental delay but I don’t understand it, it’s new to me. His arms work fine but his legs don’t. I like to see things add up and make sense to me… Cerebral Palsy would have explained it to me. I am glad he doesn’t have it, I just don’t understand this. If anyone has a child who is delayed physically (with no CP ) where their child could not crawl or walk like Benjamin, I’d love to hear from you. Thank you all so much for your prayers and for caring for us!

One thought on “Good News Again

  1. I waited to post after you heard the blood work results. Praising God with you!! “Disability”, “Developmental Delays” are all just words to “explain” a huge variety of possibilities.

    For example our daughter Molly had Ataxia. There is a cerebral Palsy called “ataxia” also. (it is not degenerative) But hers was genetic and it was severe, it was rapidly advancing (hers was degenerative, it is degenerative when it is genetic) showing that both parents needed to give her the gene for it to degenerate starting at birth!! (our PT and OT people accused us of neglect because of the quick degeneration) The Geneticist said it was probably a Freidrichs Ataxia due to how she presented. But there are at least 26 variations of Ataxia!! But he told us it didn’t matter if we knew which one it was, the end results were all the same. Her predicted life span was to die in her early 20s. But we had her get a gastric tube (controversial at the time) at age 15. It was dangerous in her condition. She lived to age 27.

    That being said, Benjamin is healthy, happy and just because they can’y give his delays a name- he himself is unique! We live in a County that used to be called “Stearns County Syndrome”. There was a huge population of disabled children. The government said it was in breeding of immigrant farm families. Most of those “Stearns County Syndrome” children are my age and older now. And I can see now (moving here as a teenager) that there is a huge variety of disabilities with hundreds of possible causes. In fact Drs explain its easy for any little thing to go wrong. (I think “wrong” is not the best term- but for lack of words :o) Just as it is so easy to miscarry
    early on.
    Autism is where a child can’t function socially, and you can see in Benjamin’s eyes that he is engaging with everyone beautifully!

    Well I’m trying to keep this short. We leave tomorrow for 6 weeks up north and I’m rushed. I remember a Neuro telling us Faith still needed to be treated like a “normal” child even tho she has FAS. We already knew that. We forget she has any challenges until others are around her and we realize she needs a little help. :o)

    I thought for sure Isaiah was going to have DS because our group home gal Susie who had DS (and lived 16 yrs here) died 3 months before I became pg with him! Because of my age I was sure he’d have some challenge. My oldest birth son is severely mentally ill. Both my birth daughters suffered depression. Things Tom’s and my family also have. And yet Isaiah is frighteningly “normal”. I guess frighteningly is not a good word because without God there is no fear. But you know what I mean! :o)
    God works in mysterious ways we don’t understand.
    Hold Benjamin close as you pray and stay in this moment! God is Good! I think He has big plans for Benjamin!
    (((((((HUGS))))))))) and prayers

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