I wonder sometimes how many times my heart can be broken? It is broken every time Noah has a seizure. It is broken when I learn how far behind he is developmentally. It is broken when Avry looks into my eyes so deeply and I remember what it felt like when Noah made good eye contact – something we seldom see because of his vision issues. It is broken when a neurologist muddles vocabulary or speaks his mind freely, giving rise not just to heartache but to anxiety so intense my body temperature soars. In the midst of arranging admission to Johns Hopkins’ Keto Clinic, the neurologist there suggested that Noah might have Infantile Spasms, a form of epilepsy that can often result in mental retardation if it is not treated quickly, though it is notoriously difficult to treat. This didn’t make sense. After frantic calls and emails, I finally got a hold of our neurologist. He viewed Noah differently but could see where the other neurologist was coming from. To him, it was just a matter of terminology. To me, it’s a matter of a mental state, something that is always at the forefront of my mind. I will always wonder – until it’s clear I guess – whether Noah is going to be mentally challenged.
“It is such a grim prognosis,” I said to our current neurologist.
“Noah’s prognosis is already grim,” he said, “because of his massive head injury.”
Oh? I sat down on the wet pavement. I had never thought of it that way. No one had ever been so bold to explain it that way, except for Dr. House a year ago, and he was consequently barred from our hospital room.
This was an attempt by our neurologist, I believe, to calm me, to quell the beast of fear who was sharpening her claws in my chest. Though I suppose he has a point. The neurologists who saw Noah’s MRI in the hospital were certain he might not walk, that one side of his body would be stiff, and frankly, I’m not sure what dark future they believed Noah might have mentally. But within weeks Noah was obliterating the preconceived ideas doctors had about his improvement. Noah is now 19 months and just tested out of physical therapy. He is, for his physical therapist, Debi, the very first shaken baby she has treated who has walked. And now he is learning to run.
And so I try to step over the lines that have been drawn by all the doctors, their tests and their statistics. I try to see the miracle Noah is. I fight so hard to continue to hold faith in his recovery. But it is hard. Every day is a battle, and it begins in the first minutes after Noah is awake, as I watch him like a hawk, waiting for his head to drop, waiting for the first seizure to step up. And then the second. And then the third. As I mark them off in Noah’s notebook, as I feed him his special food full with fat, I try to maintain some semblance of a belief that someday Noah’s seizures will be gone. On a good day I can even imagine a future that is filled with more mundane normal than heartache. I can see a day when friends and family don’t hold their breath after asking how we are.
I’m sorry to say, my friends, that today is not that day. In our life great news always takes a beating; bad news gets her way. I’m hoping that for all of you who still follow us and who still pray for Noah, that you will continue your prayers for him. He is magical and he deserves so much more than this cruel world has given him so far.
I want you to know that I’ve followed you from the beginning, and haven’t stopped praying since.
I, too, am still following, reading, and praying. Bless your family and may God continue to provide strength and hope. I was told for 20 years I would never be able to conceive. My OB told me Dr’s don’t know everything, they are only human too. My miracle will be 4 in December. Trust in God’s plan.
Hello Erin, Mike, Noah, and Avry,
I’ve read your blog ever since it was first started and announced to the OT moms group. I too have a developmentally delayed young son and it is heartbreaking to hear the grim prognosis, to see for yourself how different your son is from all the other little boys and girls, and how utterly alone you still feel despite the support and hope from others. The love is what keeps you going, keeps you hopeful, and reminds you that no matter what, your child is your special angel.
We are also in Alexandria and would be happy to offer some of our resources – our books, toys, and experiences. Your family is always in our thoughts and prayers.
Jenny and little Nick
I too read often, and much like the other posters here have never posted here and have not met you or your family but feel tied to your story. I came across your website late one night last April, up with my then 18 month old son who was just coming off of a two week hospital stay. I check in often for updates and continue to offer your precious Noah and your family in prayer.
Jen
I have followed your blog for sometime and will continue to pray for Noah. I am inspired that Noah is doing so well but can understand how overwhelmed you must feel regarding his seizures and other medical issues. My husband is a physician who works with kids and I often get angry with him when I hear him being negative with parents. He has always told me that his job is not to fill people with hope – it is his job to give them facts and possible worst case scenarios. As an OT I always try to be hopeful and encouraging – very different.
I have no advice or words of wisdom but wanted to let you know that I pray for your son and your family.
I’ve never posted before, but I have been following your blog from the beginning. I was about 7 months pregnant when I came across your page and I just remember hugging my belly and sobbing. I hope you know what an amazing mother you are. Your strength is truly an inspiration. Noah is such a beautiful little boy and he doesn’t deserve the lot that was handed to him, but I believe that with the two amazing parents like you guys, he will overcome his hardships. I pray for Noah often. I pray that he continues to defy the odds; I pray that you and your husband have strength to fight his battles, and I pray that things will get easier. Even though I have never met you and our paths have never crossed, your family is in my heart and my prayers. I will continue to follow your blog until the day that your life will become the mundane craziness of taking care of two toddlers and you’ll have no reason to post. I hope that day will come soon.
I check for updates often.
I am a home daycare provider and it just makes me sick to know that someone you trusted could/would hurt your baby. I am so sorry.
That said, I want you to know that Noah and your family remain in my prayers. I am so very hopeful that he will fully recover and be free to walk down his road, full of joy and laughter.
Erin,
I’ve never posted before, but I have followed the story almost from the beginning. I have a grandson very close to your son, in age. I think this made it all the more real to me, reading about yours and Mike’s challenges as well as Noah’s challenges and imagining myself in your situation.
Please don’t doubt that Noah’s Road is still being read and you and your family are being daily bathed in prayers.
May God continue to bless you and yours in a myriad of unexpected (good) ways.
I have not written before, though I have followed your story for over a year. I want you to know that people do still think of and pray for your precious Noah and his Mom and Dad. I am sure the despair may feel overwhelming sometimes but I pray God’s peace and strength for you both. I pray you feel HIS presence and know that He is walking this road with you. I will continue to pray for your sweet Noah and his battle. I will continue to intercede and pray for you both as his parents, that you would not be anxious but be able to present all your requests to God and His peace, which transcends all understanding (both yours and the Dr’s) would guard your hearts and minds (so that you would not have thoughts or emotions that are not of God) in Christ Jesus. This is paraphrased from Phillipians 4:6-10. Prayers will continue and your Noah has not been forgotten.
I check in almost daily. If there is a new entry, I pray. If there isn’t a new entry, I pray. I keep you, your sweet family and your precious Noah in my thoughts and prayers…and so wish that things could be different. And I so wish there was more I could do…
Your post really brought tears to my eyes today and put a huge lump in my throat. It’s not possible for you to always be positive. Please don’t expect that of yourself. Will was shaken over 3 years ago. The past 2 weeks have been terrible ones for me. Not so much for Will, but for me. I’m also beginning to face some realities that could possibly be that I’ve never really been willing to accept before.
I’m sorry things are so difficult and I want you to know that we do still follow Noah’s Road. Will & I pray for him at night often and will continue to do so.
All we can do is love these precious little boys who, like you said, didn’t deserve any of this. We will have good days and we will have down right terrible, heartbreaking days. We will stand beside them and be their biggest cheerleaders. We’ll be their advocate. We’ll be their rock.
Pls know that you’re in our prayers.
Vickie Smith
Georgia
Just want you to know that there are those of us still following and praying that there will be more good days. Noah definitely deserves more. Sending continued prayers for less and, eventually no seizures. God Bless you!
I’m continuing to pray for Noah and all of you. Hang in there, the mundane will come one day!
Still following, still praying! Will continue to pray for the best for your magical boy and his family! So very sorry that your road is so incredibly difficult. Noah is so blessed to have a mom like you!
I don’t think I have ever posted on here, but your last few words made me want to. We are still here and we’re still praying. Some like me, don’t even know you, but something about your story touched us and we keep checking, keep hoping and keep praying.
Prayers are said for you daily
Beth and Melinda in Herndon
Though I have never met Noah, I feel as though I know him. I send my love and prayers both to Noah and his family.
Praying for you all!
Remember not to place your faith in the doctors…you said they did not expect him to walk and now he is learning to run!!! How amazing is that…our GOd is bigger than this! He has a plan for Noah and He will be beside you guys every step of the way! Hold on to that truth, stand against the enemy when he tries to bring you down and stand in the truth that the God you serve is able through His Mighty Power at work within us, is able to accomplish INFINITELY more than we might ask or imagine! Glory to Him!!!! (Eph. 3:20-21)
It’s inspiring to hear that Noah is walking! I’ve read your blog for about a year now. I am filled with so many emotions. Please know that many of us are still praying for Noah, and for you and the rest of your family. Hugs to all of you.
I still read, I still pray, I still love you and your wonderful family even though we’ve never met. Your children are the same ages as my two youngest. I wake up sad and happy for you every day. Sad because no parent should have to go through what you have to endue on a daily basis and happy because you still have your precious Noah, and he is defying the odds every day.
I guess in this utterly litigious society the doctors think it is better to dash your hopes and have him do well than to give you hope and Noah not live up to their words.
Your strength is inspiring and Noah is a blessed baby. May you feel the presence of G-d in your weakest moments holding you tight. I wish I had the words to heal your wounded heart.
Just so you know- there still are people following. And praying. And hoping. And believing. And just know that no matter what the outcome is you will have a son who loves and is loved and that is what is really important. And the obstacles that he has already overcome are so inspiring to so many of us out here in cyberspace. And don’t forget your role in that miracle. From what I read here you and your husband put 110% of your hearts and souls into his recovery and I thank God that he has parents who truly are his best advocates. God Bless you all.
Noah can keep on running right over those lines. My heart is with you…