Thursday, July 18, 2013
Schizencephaly Families we're going to attempt a monumental feat. And we need every family in every state to help with this coming years awareness day. We want to include every family possible this year without them having to travel out of state. For next years Schiz awareness day we're going to going worldwide!!! We want to include any family that wants to participate... yes even those NOT in the USA!! Here is the 'general' idea. Every family that wants to participate should be on the schiz awareness map. Email Lori Barrett firstname.lastname@example.org or send her a message on FB to get added. If you're already on the map make sure you let us know you want to participate. The 'plan' ... two flags, one goal, raise awareness!! Two flags will start in Florida. They will be carried by, get this, as many motorcyclists as we can muster to the next 'stop' where it will be passed to the next riders. This will go from family to family until they reach their final destinations. The idea is to have the flags come to your town by motorcycle where you can possibly plan some type of parade or something special as the flag visits YOUR family!!! We need to start early since we will have to be contacting motorcyclists and figuring a route and an official start date for the flags' journeys.
Monday, July 15, 2013
I wake up to the crisp summer sunlight peeking through the window and the birds singing good morning. Noah is snuggled up next to me and as I look down a big smile spreads across his face as he twists my hair in his two fingers. "what do you want to do today little man?" Noah smiles and leaps out of bed he runs to the kitchen and pulls open the doors pointing to fresh fruit on the top shelf. I pick him up and help him reach it as he takes a sweet plum and puts it up to his mouth and says "delicious."
After breakfast he places his hand on my shoulder and yells "you're it!', as he bolts out the door. I stand there watching as he finds a yellow butterfly shooting by and he begins chasing all around the garden. Finally I run up to him whisk him into my arms high in the air and say "now you're it."
Noah smiles mischievously as he slips from my grip and runs towards the garden pool. He squeals with happiness as he jumps feet first splashing me from the edge of the pool. We play mermaids and pretend we are deep sea divers exploring the treasures below the surface until the sun begins to align with the shade trees.
We decide to take a walk and pretend to get lost in the very familiar yard and we make a map to find our way back to the castle for a bit of lunch. Noah has decided today will be a pizza day so we put on our fake mustaches and make a pizza from scratch in our best Italian accents. "Mama Mia, this is the best" Noah says as he picks the last pepperoni from the remaining slice.
We build a fort in the living room and make believe there is an evil dragon just in the hallway and we are ever so quiet to not wake him. But then Noah jumps up like the brave knight he is and slays the dragon forever keeping our fortress safe.
As the sun begins to fall behind the tall pines we sit on the hammock and talk about our adventures. I listen as he tells me all his dreams for the future and we watch as the moon begins to make it's appearance. One day Noah says he will be an astronaut. I tell him how my worried mother heart would miss him so as he flew into space and he tells me he will write our names in the moon sand when he lands.
As night creeps in I chase Noah around his bed while he fights me to not put on his jammies but finally we both end up laughing and jumping on the bed until we collapse into one another's arms and just smile at one another and take a deep much needed breath.
We talk of or dreams and what we will do the next day. What adventures we will have in store slaying dragons and visiting the tallest buildings that ever existed. He whispers to me " I love you mommy." As I watch him drift to sleep. His tiny fingers twisting my hair in his small hands.
I wake up. Noah is laying snuggling close to me, twisting my hair I whisper " I love you Noah." He just smiles. I take his tiny hand and kiss it and tell him all about the day we will have and what is planned for us. He just looks at me smiling ,content to look into my eyes and in his own way saying I love you.
The day is full of appointments and therapy. Last week Noah tried with all his might to say I love you. One day he will. I pick him up and place him in his wheelchair and spin him around in circles making him giggle and snort in laughter. And we start our day. Today Noah will have botox in his right arm to help release some of the tightness he has. We hope it will allow his scoliosis regress if he gets a little botox in the right shoulder. His day is filled with shots and car rides to his dr's.
As we walk out the door I notice a yellow butterfly pass right by Noah's face but he never saw it. I place him in the car and our day begins. There is no talk of dragons and astronauts. there is only the language he and I have created to understand one another. Mostly cooing and smiles and lots of hugs.
At the end of the day I snuggle up to him and kiss his forehead. "I love you Noah," I whisper as he takes his little fingers and grabs my hair and twists it as he smiles looking into my eyes. And he drifts to sleep.
My biggest dreams are the ones where Noah runs around in this world leaving tiny footprints and echoes of laughter but more importantly my realistic dreams are that he never forgets to smile and twist my hair at night. I tell Noah about the man in the moon as he closes his eyes and drifts to sleep.
I wonder as I watch him sleeping does he know what the moon really looks like? I dream for Noah. I dream of lazy days and long talks. I dream of running and screaming as loud as we can just because we can. In my dreams we chase each other around all day and sing and dance to every song on the radio and in my dreams Noah tells me his dreams. But for now, I dream for him. And the little boy he has yet had the chance to be.
Sunday, July 7, 2013
Even when Noah was seizing daily and we could not control them did I ever once think about death the way I do now. A silent fear that is my last thought each night. It is gripping.
As the last 5 years have passed and I have met families and mothers that have lost children facing the same disorder as Noah I cannot help but feel the thought is much more real than ever before. There is no difference in their children and mine., They are the same. Their moms love them just as much. Some are less or more complicated but none of them have some date that we know this could happen. So we just try to push it into the back of our minds. With the hope it won't happen to our family.
It is something us as parents do not talk about enough. We all have these thoughts and fears, we email each other privately but it is something we feel cannot be posted for all to see for fear it will upset other parents. For me I have recently been reaching out to my father. I talk to him every day This has all begun the last two years where I beg him to watch over us, keep us strong and the hardest of all to be there if anything were to happen. I know I cannot be the only person in my own support groups and pages worried nonstop but I think most people are too afraid to say anything.
I also may be more open with all of this because watching my fathers suicide unfold before me I have a realistic thought of how quickly people are taken away from us. Even though we know our parents will not always be here, there is nothing that can quite prepare someone for that finite moment you know there will be no more calls, no more birthday cards, no hugs and laughs. There is never enough time and I had to let go of those things long ago with dad. I waited for 2 years after his death to just appear in front of me and give me some sign there was something more out there I just could not see. Other than dreams and my own thoughts that never happened so I have to just believe in my heart somewhere my father is out there in a happier place holding a place for the rest of my family. It is all I have.
I also will say this without hesitation. I would always choose quantity and quality for Noah but I am also human, I could not allow him to suffer in this world knowing the only reason I was keeping him here was to appease my own selfishness by not wanting to let him go. I applaud parents that are so brave that they can let go even when they do not want to. It has to be the most difficult decision one ever has to make. We are not suppose to outlive our children. It is a hard pill to swallow. I cannot even imagine how some parents get through that except I would hope I would be in the same mindset. that when our children are no longer the child we remember but another human in pain and suffering that we allow ourselves to swallow our selfishness and let go. Knowing they will be at much more peace and not in pain. But still that thought is just so hard to imagine.
Is it possible that in this situation, families like mine that we are preparing for our children to leave us from the time they are born? Wow that just struck me that parents like me have to have that thought as well. I know for sure at Noah's beginning life I was told so much that he would never live 1 year I had decided to make that year one of the most amazing ever. 13 years later I still live that way. Every day is going to be the last.
I do not know if it is the many factors Noah is facing in the last couple of years or just seeing so many beautiful souls leave this world that have Noah's same disorder but I feel compelled to speak and say it is a constant worry.; Even though I do not think I myself could ever be fully prepared for in this lifetime It is something that has been in my mind since the first day I learned he would have Schizencephaly. SO technically speaking I have thought or been told to think about Noah's life ending 5 months before he was even born. I do not think there is any other way I could have lived since I have been warned since his diagnosis that this is something we must all prepare for. But still the thoughts when you lay down at night can become so intense it makes you feel sick. I cry much more than I ever did years ago. I have watched so many simple things being taken from Noah, Crawling, Casting, Broken bones, even eating. It has become a much more real feeling and one that is not as easily dismissed as it was when he was not regressing in life. Back in those days I was able to focus on all the things that he was doing and should have never been doing. I felt like we were defeating this crap disorder I have learned to hate. Instead I find now years later all those emotions return to the beginning when we are fighting tooth and nail to make strides. It is hard
I have no doubt Noah will be here a long time more and he has a good fight in him still but I cannot help but think at what point will I allow myself to let go when his fight is over. And will that day come sooner than later? And if this is what I have weighing on my heart all the time , why is it that I am the only one talking about it?
Friday, July 5, 2013
Noah's femur is healing Well according to his Dr's however from looking at his X-ray myself and showing to a few friends all in the medical field there seems to be an agreement that to us it simply does no appear to be set right.
I have to question at this point if it was set this way because the Dr's felt like this is as good as Noah's life will be or if his leg simply could not have tolerated any manipulation. At any rate I see a very long road ahead for my little man and I've decided (if He is able to travel considering How it was set) to. Get a second and third opinion.
I am disappointed to say the least. I sometimes look at Noah and question why He was chosen to have to live this way. Not just that but How much can his body handle. In just this year we've been through five surgeries. It's got to be as wearing to his body as it is to my heart.
I wonder How much longer I get to see him smile through all the pain and I worry what his future is going to be. He is already so fragile with bone issues,scoliosis and a dislocated hip.
I do have hope in myself as a parent because I truly feel the answers do not lie in the medical professionals but in my own heart. After all it was I that chose to fight for treatment and prevention of the scoliosis. I was the one to show concerns for his weight loss and I was the one that insisted to have bloodwork and X-ray to see the bone loss that not one Dr thought to look for.
For that reason and only that I know that as long as I am alive He has the best chance in this life. Because if it were left in the hands of the medical world He would have been doomed long ago.
So we keep fighting. It feels sometimes this battle is never ending. We have been at it since Noah was diagnosed inutero and I was relentless in getting answers and I fear that is what I will have to continue doing.
If there was a plan to all this I still don't understand it. There is nothing more frightening and difficult than to know your the only one fighting for your child. At the end of the day even through the smiles and hugs the fact remains worry fills my heart much more than anything these last few years. And it is my silent friend each night before I kiss him to sleep.