I’m giddy about this post. I think I’m starting a series that is important and interesting and unique and inspiring. And I’m giddy about starting it off with this mom in particular.
I have a very strong belief that everyone has a story and that their story is important and should be shared with the world. Especially those who’s stories are hard to hear. Who’s stories aren’t all unicorns and rainbows and who’s stories are difficult and frustrating and challenging. Because, here’s the thing: everyone’s story has something to offer the world. Beautiful stories make us happy. Difficult struggles make us think. Frustrating stories can help us to reflect and problem solve. I think by listening to people’s stories, we learn what we are doing wrong. We learn more than we thought we might. And we can change the way we view others. And maybe, little by little, we can help fix the world.
Let me introduce you to:
She’s tall and thin and the word ‘model’ comes to mind.
She has the palate of a 4-year-old and loves mashed potatoes and simple foods. (dude. I love her.)
She was born is Florida, but grew up here in the PNW.
She doesn’t watch a lot of tv, reads like crazy and loves a good TED talk.
Oh…..and she has:
Noah is 8 and has the very rare “18p Deletion Syndrome.” But life with Noah is amazing.
We knew that there was something going on before he was born. His ultrasounds showed that his bones were measuring smaller than they should and he only had one kidney. My doctor warned us that it could possibly be Down Syndrome, but we had to wait until he was born and even then it took a few more weeks of waiting forthe blood work to come back to get his actual diagnosis. So I had time to prepare myself and I had already grieved in a sense. When the results were back we went tosee Noah’s doctor. He told us it was called 18p Deletion Syndrome and that it was very rare. He printed off information from the internet to help us understand. This isn’t a diagnosis you learn about in medical school. Most doctors will never see a patient with this, so he was learning right along with us. I felt fear. Many questions ran through my head. Would he ever talk? Would he walk? And the main one, would he live? My love for him was so deep and this was scary stuff that I had never even heard of. But I also felt determined and immediately started researching and getting him set up with all of the services he would need. That is usually how I work. I feel deep, paralyzing fear and need to just sit with that for a while and then I go into action.
My labor was difficult. Noah had a lot of birth trauma and difficulty breathing. He didn’t cry when he was born, but made these heartbreaking, tiny grunting noises. He was taken from me very quickly. Because of the difficulty of my labor I wasn’t allowed to move until the next day and he couldn’t leave the NICU to come see me. That was difficult. I made my Mom stay with him at all times. She would peek in andgive me updates and then go right back to him. When I finally got to see him he wasunder an incubator that was helping him breathe. His head was swollen and half of his face was paralyzed from a forceps delivery and his body was very still. Noah stared at me with the one eye he could open and he gripped my finger. That grip told me he was going to make it and it made me stronger too. He still grips fiercely. This boy has very strong hands and they radiate his feelings. I felt love and tremendous fear. It was then that I got a glimpse of the journey ahead of us and our bond was instant.
Hiis sweet face. He has a smile that makes his eyes crinkle and I swear they sparkle.I can tell instantly by looking at him how he is feeling. He wears his emotions on his sleeve. I also love his giggle. It is infectious and makes everyone around him laugh.We will often be out and about and something will make him giggle and whoever is around will turn and watch him and start laughing with him because his laugh is so awesome.
His curiosity for the world and everything and everyone in it. He is a chatterbox and has many questions. His soul is deep and wise and he soaks in everything around him. He can sense when someone needs an, “I love you” and he offers it instantly. He is rarely bored and wakes up every day with a big smile and raring to go. He putsit all in perspective. Noah has had more than his share of bumps in the road yet laughs and loves his way through each day.
Yes, his school day is different from a typical school day. He arrives earlier than the other kids. That way he has time to put his stuff away and get ready for the day without the chaos of a lot of children and noise around him. He has pull-outs throughout the day so he can focus with one on one attention from an adult. For example, certain subjects are more difficult for him, so he will work on that with a special education aide or one of the assistants. He has one aide that is assigned to him who is with him on and off throughout the day. She is always with him at recess,as he has motor delays and can fall more easily than other kiddos. He also receivesSpeech Therapy and Occupational Therapy at school. The majority of the time he is in the classroom with his peers, but he has extra assistance when he needs it. His days follow a consistent routine so he knows what to expect.
His classmates are beyond amazing with him. They pretty much all want to take care of Noah and he so uses that to his advantage! One day I was picking him up from school and asked him where his gloves were and he yells across the room, “Hey, Olivia where are my gloves?” And she responds, “I put them in your backpack,Noah.” So yeah you could say he is well taken care of.
The word retard, retarded or using –tard as a suffix. The word derived from the words, “mental retardation.” This was the diagnoses given to individuals whose IQ fell below a certain level (the term now is Intellectual Disability). The context that the word is socially used is usually for anything that is considered stupid, crazy, dumb, etc. So yeah I hate it. I am friends with many people with disabilities who feelvery hurt when they hear that word. Saying that you didn’t mean it that way is not ascapegoat. It hurts people. Period. I also dislike it when people say, “disabled person” or “autistic person” or “Downs kid.” Putting the word first defines a person. It sounds as if that is all the individual is about. The correct terminology is, “a person with a disability” or “a person who has autism”. Yes, my son has a disability, but that is not all he is, it is actually just asmall part of him. (For more information on People First Language, click here.)
My friendsships definitely changed when I had Noah. I just don’t have the time to make the effort that I used to. We can make plans with friends and then have to cancel at the last minute because bug has had a big day, didn’t sleep the night before, or solely because we are exhausted and just need to stay home. There are social and family situations that we avoid if there is going to be a lot of noise and chaos because that is hard for him. We also tailor parts of our days around his routine. For example, if we mess with his bedtime routine then it will take him hoursto settle down and fall asleep.
As far as relationships go, having Noah definitely made me look for those key internal qualities first if I felt like I was serious about someone. Love and patience meant far more to me than money, looks, etc. Noah requires endless love and patience. I truly lucked out finding Brandon. He is the most patient, loving and kind person. And he’s also good-looking which was just icing on an already amazing cake.
While my friendships and relationships changed, they also deepened. This isn’t a journey you can take with shallow people. They are either in it with us or they are out. And we are beyond blessed to have a solid, priceless, amazing support system that surrounds us with love. Without our friends and family, I would have lost my mind a long time ago!
Like most boys Noah’s age, he loves Minecraft. I mean LOVES. He loves to just have Steve run around, find stuff and kill Creepers. He has every Minecraft toy in existence.
He equally loves the park. Any park. He would go to the park every day for hours. One of his first words was, “slide.” He loves being active and on the move. We alsotake him to the habitat reserve, which he calls the waterfall park. He enjoys nature and we find a lot of peace there.
His favorite TV show is Wipeout. He loves Wipeout, as much as Minecraft, and talks about it just as frequently. He likes to build pretend obstacle courses and play it in the living room. He makes me be Jill Wagner (super-hot model host, obvious resemblance).
I wish I could say that I go for a run. Buuuut I just read obsessively and eat a lot of chocolate. I really cherish time alone with a good book and my IPod and Brandon is great about giving me that. Having that is like having water to me.
There have been times in the past when I have regretted not going the Montessori route for Noah’s education. It was a decision I wrestled with for a long time. We hadsome struggles at his previous school and there were some really rough IEP (Individualized Education Plan) meetings. But we moved and he loves where he is atnow and they love him. While I may not agree with the Common Core or the school work that gets sent home, his teachers are all about supporting Noah and having him do what he can do and not forcing him to do more. He is happy there and that is what matters to me. If that ever changes, then I know there are other options out there, but we have been pretty blessed.
Just hanging out with him, ya know? Having long talks . I love his perspective on life and hearing what’s on his mind. He always gets me to look at things in a different way. I am curious and excited to see the young man he will be. That kid moves mountains.
A year from now you will look back and without hesitation know that you would do it all over again. Like all journeys, there will be hills and valleys, but more than anything there will be joy.
Thank you. Thank you a million times over to Suzanne for telling their story.
(Suzanne writes on her blog, here.)
I want to hear your story — and I know others do, too. Fill out the form if you have a story you’d like to tell!