Sunday, April 28, 2013

The official banner raising for schizencephaly awareness

Yesterday we raised the banner that will in from St Augustine's post to Halifax Canada and them to race in the tall ship challenge.  The banner will also be seen in Washington d c. And new York and ports all across the united states

Saturday, April 27, 2013

Dan marino

Today at our official banner raising in St Augustine Florida Dan Marino got wind of our special little man and stopped to meet him and give him a donation for his wheelchair van. What an amazing man and so sweet to take the time to get to know up and our company

Friday, April 26, 2013

Th pirate adventure

We had an amazing fundraiser and we are awaiting the pirate ship now so we can hoist the Schiz banner.

Sunday, April 21, 2013

Noah Makes the Paper!

I am so happy with the amount of awareness happening. Noah is my hero


Tuesday, April 16, 2013

Stress

It's something most of us parents never address. But it's spoken in personal emails and discussed privately.  Most of us hear a lot that we are blessed and this was a chose path.  I get that but the stress especially as our kids get older takes a toll. On the entire family. Other sibling become adults much faster because they face a reality others their age could never imagine.
My son river is 15, he should be getting ready for games and playing with his friends. I did. I had a childhood. But it's not the same for him. He spends his days helping me. He is in charge of responsibilities that I could have never handled in my selfish teen age years. For that I feel both grateful and sad for what he is missing.
  He has mentioned many times he will never leave home. That makes me sad. He has already planned to go to college close by to be available to help. That is a wise and compassionate decision for someone his age.

But still more and more parents going through stress right now are talking. And there is much to talk about. We try to stay positive for one another. But we deserve meltdowns. I have them. Fears of the unknown, Noah sleeps in my bed every Night for fear something could happen and I would not be there to help. It's life with special needs.
  I found out today noah will be in a leg and scoliosis brace for the next four years. That is disheartening. No more tummy play. Loads of things he loves will now be constricted due to the fact I decided to prevent before things get worse. Is it worth it all?  Yes I will always choose quantity and quality and as long as this kid is smiling and giving kisses I know he is in agreement with what needs to be done.
But the stress remains. But how much is too much. My mom is falling apart. She doesn't understand why he has to go through so much. I just keep thinking what we do today only makes his life better down the road.
Tomorrow he goes under for the fourth time in 6 months. By far that is the scariest part. But it must be done. Still the heart is such a mess when you give your child's life to strangers and trust them to understand both the fear and anxiety it puts on the family and on a little boys body.
The good news? We areclose to the end of the surgeries. And for that I am grateful

Thursday, April 11, 2013

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 


Friday, April 5, 2013

Awards of excellence

Yesterday noahscart was presented with an award of excellence from a local neurology team for efforts in raising awareness and support for schizencephaly through our non profit. I am so extremely proud of our team!!