Re: I am a wreck- sorry to rant

[Guest guest]

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Just Keep Swimming! I love that. I know Bex will have a beautiful life, I do fear his strong will disliking the brace when he's older, but for now, I can't think about that. I'm Swimming as fast as I can ; ) Heidi, Bexon's Mama

To: infantile_scoliosis Sent: Thu, December 17, 2009 6:19:47 AMSubject: Re: I am a wreck- sorry to rant

Heidi,

I can understand your grief. I've been in that place many times with my little boy not only with the scoliosis, but he was born 3 months premature and there were lots of medical things that went on the first couple of years and many, many times when I wondered what exactly the future would hold for our little boy. My son went to a preschool that was half special needs children and I learned from watching the parents and children there that you can still find plenty of happiness. I can imagine how upsetting it is to think about your son having to wear a brace for such a long time, but in the grand scheme of life, this will be just a small part of it. He can still have a very happy, active childhood. And even though the doctor is preparing you for what he thinks is the most likely scenario, Bex might still prove him wrong One of my friends with two autistic boys

quotes Dory from Finding Nemo - "Just Keep Swimming". So, Just Keep Swimming, Heidi! And know that we are all here to support you and will be praying for Bex.

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Wed, December 16, 2009 6:50:28 PMSubject: [infantile_scoliosi s] I am a wreck- sorry to rant

Hi,

Well, it's been only about 24 hours since we left the hospital yesterday, and I am a wreck emotionally. I am so appreciative of all of your messages and supportive emails, but I am so sad right now. I know I have to grieve this new information, not just the number that went up and not down, but the fact that our Doc said that Bex might likely be in some kind of brace until he is fully grown. We have a very strong willed boy, and he is not going to like it one bit. Nick did not have his last growth spurt until he was 15-16 years old!!! If Bex is like his Dad, we could have fourteen more years of casts and braces to go. My heart is breaking for my boy going through that. My heart is breaking.

We had to go to the airport today and get on a plane, and I tried not to cry, until we got into the cab in L.A. and I cried the whole ride home. I think maybe I have been too optimistic. I get my hopes up, I keep thinking Bex will be the exception. I get so full of anxiety the whole week before travelling. It is such a build up, and I feel like I just pushed myself off a cliff. I am so sorry to be so pessimistic and ungrateful sounding, because I am so grateful for all of the positives, and you cannot go to a Shriners Hospital and not see so many kids with very difficult conditions, and feel lucky for what you have.

I still think we have the greatest doctor. We love our hospital and the whole staff, they are so wonderful to us. It is just that it is one week before we are supposed to travel to NY to have a happy Christmas with my family, and they will not really understand what it is like to go through this. They are loving and supportive, but now I just don't want to go. I don't have time to grieve this before then.

I ordered Christmas cards weeks ago with a positive message about Bex's health on them. I feel like throwing them away. I know I need to pull it together. It's just that the wound is still fresh. And we have to go back in 10 weeks again for another cast and an MRI for Bex's spinal cyst (syrinx). I just feel like I can't handle it. Just like in the beginning, with the diagnosis. I feel like a terrible mother because I am so depressed. Maybe I need to take anti-depressants. I can't stop eating, it feels like I am going down for the count and I can't get back up. I can't stop crying. I feel so helpless. My heart is so heavy. I'm so sorry, I am so sorry that I am not stronger. Heidi, Bexon's Mama, (2 years old, in 5th cast from Salt Lake City Shriners)