1st Day of a new me!!

[mommymine3]

This is my journal I had to write as an insert for Brady's website. Please tell me what you think.

So I had my first appt with a counselor and it actually went better than expected. I have been dealing with sadness, anger and a list of emotions since my Son Brady was diagnosed with Spinal Muscular Atrophy Type II, just before his 2nd Birthday. It has been so tough watching your little boy waist away everyday and knowing there is nothing you can do but LOVE him. The motor neurons that affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing are affected. Brady was born 8lbs 3 oz, 2days past his due date. He hit all his milestones on time by the book. Sat up when they said he would, crawled, pulled him self to a stand everything except taking steps by himself. When he was 15 months we took him to the Doctor and he said he was probably just lazy and to practice with him and he would be walking soon. Since he was standing and trying to walk, he didn't really see a problem. By 18 months still nothing. I knew in my heart something was wrong and made him an appt at Shriner's Childrens Hosp. And 2 weeks before his 2nd Birthday the test results came back positive for SMA Type II. The onset for children with Type II is 18 to 24 months and ever since then he has gotten worse and worse. He can't sit up without support, can't crawl anymore and gets sick with colds, respiratory things and pneumonia. I run around like a crazy women cleaning, wiping and spraying things down before he comes in contact with anything. I get chills at the 1st sign of a cold or cough and feel like it's the end of the world because I know in my heart what's at stake. My poor kids look at me like I am nuts and so do the strangers that see me spray and wipe everything down that he gets close to. But I feel that that's one thing I can do to help protect him. All I want is for him to not suffer, to not feel sad or different. We can deal with him in a wheel chair but this illness is truly awful because as of now there is no chance. I wonder everyday if he knows what's happening to him and if he's scared. I would give anything to see him walk, just once. We all take so much for granted and I wonder everyday why HIM but then I sit back and think why anybody. Sickness is not fair but  is a part of life, I just never thought it would be a part of mine or my child's. On the brighter side he is almost 9, is in a regular 3rd grade class with an aide and is extremely smart and social. With SMA it doesn't usually affect the brain so he's 100% an 8 year old little boy. I am truly grateful that God thought enough of me to give me him. With all these struggles he makes my heart melt with his smile and humor everyday and makes it so worth it. Since this illness is genetic I have a LOT of guilt and hope the counseling helps the way I feel. I go once a month until I feel I am ok without it but don't think I'll ever be 100% okay. I can't keep running and need to take care of it and find ways to deal with it. I started writing everything down and sometimes look back on how far we have come and I am truly blessed to know an amazing boy that I call my Son.

*Stacy*

 

 

[lisaeise]

May. 30, 2009 at 8:24 AM

The sign of a truly wonderful, caring mohter, is that she also makes sure to take care of ehrself.  Good for you for seeing someone to help you so that you can continue to be the strong parent your children need.

[momof3garcia]

Jul. 25, 2009 at 8:32 PM

I have chills all over my body!! I am so sorry that you have been given this situation. It is truly amazing how you are able to deal with it though. You are completely right when you say we all take advantage of what we have. I had two easy pregnancies, easy deliveries, and easy children....then I got pregnant with my third. She was born 7 weeks early and I really thought I lucked out with how "healthy" she was. She didn't have to have oxygen and she was breathing on her own and doing really well. She had failure to thrive when she was just 8 weeks old and went down almost to her birth weight. She has had stridor since she was 2 weeks old and STILL has it at 14 months old. It seems like every month brings a new obstacle. She now has anemia and they are wanting to do more tests to see why she still has the stridor and why she chokes when she eats. I am very thankful that her problems are pretty "easy" to deal with but you are an inspiration to me. If you can live on and be strong and do everything that you do then I can too. Thank you for sharing your life with us!

[Allyspry]

Jul. 26, 2009 at 3:27 PM

Stacy this is a beautiful, honest, heartwrenching journal entry and its wondeful of you to share your feelings like this. If this can help or inspire someone else than you have done a great thing by sharing. I can honestly say that you have inspired me to be a better person, and I am 100% thankful that you are my friend. You and Brady are each others angels. xoxox Ally