The not so perfect day

The challenges of a mother

Over the last few years and fighting head on with Dr's complaining about Noah's scoliosis I had to wait until he got to 51% before they would do a corrective brace for him. That was six months ago and since that day things have been moving way faster than I expected.
 First last month his left collarbone became dislocated due to the brace moving him so quickly. Today we found he is having major pain in the hip area. 
 Xray confirms that his hip is up and out for socket. Noah has severe scoliosis and as a result surgery is too hard on his lungs. The last surgery for a G-tube nearly killed him when his lungs collapsed and a three day stay ended up being In CCU for three weeks. So surgery is just not an option at this point.
 Dr and family decided on a frog like cast with a metal bar to separate the legs as that seems to pop the hip back into place. hoping that eliminates surgery down the road. 
 I won't lie. I feel let down by the medical world. I feel like as a patient Noah's dr's should be preventing not waiting. I  sometimes wish he could catch a break. This is all too much for one little body. I wont rant and rave about how grateful I am. I love schiz kids and I love who Noah is . He lights up y world. But truth be told I would take it on for him just to see his run through a field of butterflies chasing them and rolling in the grass. Those dreams died for us so early on but every now and then they come back around. This is a frustrating world at times and It is exhausting with fear and worry and just the crazy thoughts you have at night ( terrors I call them).
 It is hard for friends to understand. I seems easier for them to ignore what planning a trip to the store feels like. They forget going to the mall requires so much planning and stress. 
 I cannot remember the last time Noah sat through a movie that I didn't
 have to leave because of how uncomfortable he is now.
 The one thing he loves most is swimming and that has even become so hard for fear I will hurt his hips or collarbone or slip and fall.
 There is so much happiness to know someone that can always make me smile but so much sadness  and yes even anger when I begin to think that the things I have been warned about because I do see some bumpy roads. It's all guessing work and I always leave feeling I had to do what I think is best, There is not shot or medicine to cure anything. People abuse the system and the ones that are suffering have enough stress on their body's . there has to be an end to abuse in the SSI and state assisted programs.

 I am not saying I could ever imagine life in any other way now, But to say I don't imagine what Noah would be like if he could do the things I see in his eyes he wants to do. That is very hard to not think about. My son is smart. He is a doll and is very happy how he is. But He knows he is not like other children. He knows when I see him following with his eyes , children running and singing. I sometimes feel sad for him and leave when I see him get into deep thoughts with his mouth taught. This is a sad life at times. Nothing is all positive and blissful. There are very difficult aspects for families with special needs either siblings or child.



   
 I love the families I have met through Noah's journey but I don't think people talk enough about real fears, The stress that goes along with this lifestyle. There has to be more outlets to be open so moms like me do not feel isolated or are afraid to express fears and concerns . why cant my son run out under the stars and chase fireflies? Why was my son chosen to not be an astronaut? and why cant Noah just feel the grass crunching under his never used feet. 
 Some kids I know are Noah's size or heavier and It is very hard to get around. It surely is a very big hardship without proper vans. 

Heartbroken is an underestimate. I am grateful for getting the chance to love what I do and feel honored to be with a team doing something positive for disability but there should be a movement all over much bigger that just little fundraisers. There are 785 million disabled people in this world.

There is a great feeling is knowing a special needs child. Something other parents should envy because the love from them is the most profound in the world. 

But there is not enough help in Tax write offs ( I come out 10,000 short every year) 
Not enough outlets and prevention's. And definitely not enough support for rare disorders