Yesterday I spent the entire day with the boys. It was a gorgeous, sunny day. We walked, played, cuddled and loved. I felt content, in the midst of a calm. And then today the rain came. And like every ounce of happiness that seems to come into our life, it drained away.
Not only has Noah been diagnosed with epilepsy in the last couple weeks, not only is he still having seizures despite two weeks on this “last chance” drug, but now he’s considered nearly a year behind in his communication and language skills. You might think this should have been obvious to me, but it wasn’t. I talk to Noah non-stop, articulating every thing I do. I sing to him. We play videos meant to encourage language development. We work on engaging Noah in simple play. All around us his peers are saying “Mama” and “Dada”, they are pointing at objects and either jabbering or correcting saying what they see. This doesn’t happen in our house. In our house we cheer if Noah makes any sound.
I’ve known Noah is behind, but knowing that he’s at a seven-month level is more than just disappointing, it’s crushing. It’s the kind of news that, coupled with the medical diagnoses, is just too much to bear.
And yet Mike and I have the weight of doing everything we can to help Noah excel in any way he can. We have outfitted half our family room as a play and therapy zone. We have set up a tent, a ball pit, mirrors, and games. The goal is sensory integration and interactive play. Those who come in and out of our lives, those who rate Noah on a standardized scale can never understand that weight, or the heartbreak that accompanies it, or the anger that we have been unfairly thrust into this world we now live in.
But what else can we do but work off that depressing, standardized scale? What else can we do but trudge forward, our back hunched over from the sadness and frustration?
Nothing.
As I cried on the way home from therapy today, I looked into the backseat at Noah in his car seat. He has a cold, so snot was streaming from his nose, poor thing. He was looking out the window. I called his name.
He looked at me and smiled.
I waved and said, “Hi!”
He kicked his legs and said something like, “Ga!”
I squealed in return, and then I turned back to the road, to a line of highway traffic in front of me. The windshield wipers swished across the glass. I wiped my eyes and drove forward.
Regarding his seizures, you may want to try the ketogenic diet. My daughter has epilepsy for over a year and we tried seven medications to no avail. Finally received seizure control after being on the keto diet for three months. The hard part of the diet is making sure they eat everything. Its high in fats and you can check out Charlie Foundation. There are a lot of info plus you can go to Yahoo Groups about Ketogenic Diet. The AEDS are not good b/c it drugs up the child. My daughter would have about 50 or so tonic or myoclonic seizures. She had drop seizures when she started the Keto diet which you can give formula or prepare meals. We weaned her off Keppra after two months on the diet and her drop seizures are gone. If you have any questions, email me. I would be happy to share information that you can use.
God Bless,
Nicole from CA
Hi there, I have been following too, just lurking but I had to leave a comment today. The tradgedy of what happened to Noah is haunting, I’m sure. But your ability to focus on the future and remain positive is what will pull him through!
I am a teacher. I taught early childhood, K and first graders. I wanted you to know that although Noah is rated as developmentally behind he WILL reach the goals. Actually I can guarantee that Noah will EXCEL at many things. All people no matter what their circumstances, have strengths and weaknesses. You are already an amazing mother- by celebrating his accomplishments and strengths, he WILL make progress!
Also, keep praying. Never forget that God can make miracles happen…especially for faithful and devout people and an innocent little boy.
I am overjoyed to hear the verdict for all of you. I hope that it helps some in being able to move forward. I also have a son who is a victim of shaken baby. He was shaken at 10 weeks old by his own father who only received a year in jail and it is his son sho will have the life sentence.
On a happier note, you need to continue to rejoice in the small accomplishments. My son is now 6 1/2 years old. At age 2 1/2 he had a five word vocabulary. He continues to go to outside speech 2x/week and receives speech in school 5 days/week. He talks extremely well now and actually corrects others if they pronounce words wrong. I never thought I would see that day.
I battle constantly to get him what he needs but it is worth every minute because I see improvements with him all the time. So do not ever give up that battle, because I believe that Noah will prevail. I, like you and so many others never thought that this is what my life as a parent would be but have come to accept that this is my new “Normal” and have learned to accept the challenges that come my way and work through them. Believe me when I say that the challenges keep coming but they do get easier to accept and work through. Sending love and prayers to your family. If ever you want soemone to talk to, feel free to email me at pjr_55009@yahoo.com
Penny
I can’t imagine what you go through on a daily basis, but it’s been an eye opening blessing for me to be able to follow your story. Noah is a strong boy and I know it must be hard to watch him struggle. Noah may not reach milestones on the timeline that other children do, but he will reach them in his own time. (hugs)
Tena
i have read about noah for a long time. i’m so sorry that all this hits so hard on you. i read about him looking at you and kicking and saying ‘ga’. wow!
i hate dr’s appointments too. the news that lia at 14m was considered 7-9m was hard too. he is beautiful, he is yours. i know he knows you love him.
i grieve for your loss, it strikes close to us in a different way. i am glad that the one who hurt your noah got the full 10.5 years.
peace.
My son was born premature, not super premature, he was 8 weeks early. But I remember with such clarity our first visit to the NICU follow-up clinic. I was sure that he was “on target” that he was all caught up and that they would praise me for being an amazing mother. Well…you can see where this is going. He was quite far behind, in all areas, some that I never expected. I was crushed and frightened – what more could we do? I thought I was doing everything. No brilliant words of wisdom here; he is still behind and I feel like we are doing everything. I just wanted you to know that you are not alone. You will celebrate crazy things, things that maybe other kids do quite easily — I am so sorry it is so hard and I am sorry this was thrust upon your family. It fills me with anger and I have never met your son. I will continue to pray for your little boy.
Good on you Noah – Mum needed to hear that!!
He’ll get there Erin, in his own way and time.
But that is a great start
Love and hugs to our little mate.
Sally
Australia
Hi Erin,
I checked in on you guys today and I’m so glad to hear the full sentence was handed down to the woman who changed your lives. Justice doesn’t change anything, but I hope it helps.
I then read your post about Noah’s language skills. Boy, did it hit home. I’m not sure how much I’ve told you or how much you might remember about Will’s issues since he was shaken, but speech is one of our biggest struggles. He’s been in speech therapy 3/week for about
2-1/2 years. I know how devastating this kind of info can be about your son. I’d give anything to hear my son say “I love you”. I’ve gone down very dark roads thinking about his inability to talk…and still do. BUT he’s getting better. His approximations are getting better and better. My sister called me last week while I was at work so I could hear him sing “Itsy Bitsy Spider”. Tears hit my keyboard. I put him on speaker phone so my co-workers could hear him. They recognized the song and knew what he was singing. Amazing.
I’m a patient person, but when it comes to his speech I want him to talk NOW. His progress can’t be measured daily or even weekly. It’s been very slow, but he’s getting there. His therapist assure me he’s going to talk. It may be a few more years, but they think that he will. I BELIEVE that he will.
Never give up. Never stop believing in Noah’s miracle. It’s so hard sometimes. I wish everyday that our lives could just be normal for a day…whatever normal is. I see other mom’s being so carefree appearing as though they don’t have a worry in the world. Oh how I long for that sometimes. BUT tears don’t hit their keyboards when their son sings a song or walks up 3 steps by himself. Every milestone…just like the one you described in this post is a miracle and a moment to be celebrated. Cherish those moments. That is what will keep you going on the days when you feel like giving up.
You have my number and email address. You’re welcome to call or write anytime if you’d like someone to talk to who’s been down this road.
Take Care!
Vickie Smith
I reckon that he is receiving Early Intervention, doesn’t he?
I am so sorry for what you are going through – one step forward, two back. I’m sure you’ve heard this before, but every child progresses at his own pace. Our son did not speak a word, not even “ga” until after his second birthday. We were seeing PT specialists, we were in speech therapy, worrying about autism, and then one day, about two months after he turned two, he started talking, at first just sounds, and we were elated. Now, only 10 months later, his vocabulary is that of a four year old. Don’t despair yet, though I understand how your hope has been robbed away from you. Maybe, just maybe, all he wants to say right now is “ga”. I’ll keep praying for more words! Please keep us posted. We are all rooting for you and your family!
Oh, and in no way do I mean too minimize what you are going through. I can’t imagine. And I am so sorry that women took away your hope. I’m just hoping still for a fairy tale ending for you guys – you deserve it.
firstly, i am very happy to see so many blog updates! i love reading about noah and your family. noah is a miracle. everything he does is a milestone, and he is very lucky to have parents like you to watch him make those milestones. im having trouble finding the words to say… just be strong erin, and i mean strong like noah strong! he has more strength than anyone and he isnt even 3ft tall! noah is making it through his battle, and so can you! it will be a life long battle, but over time it will become easier. god made you noahs parents for a reason, he knew that yall could do this, and provide noah with every single thing he needs. yall are a beautiful family, and everyday is a new day. you can do this, as hard as it is, you can do it, because your strong, just like noah.
noah— ga!!!!! your growing up so fast! and so handsome! so your a big brother now huh? must be pretty cool! have fun today buddy, and give your mama, dada, and bubba lots of hugs and kisses!
-ashley cofer memphis, tn
Ga Noah Ga.
I look forward to watching him grow into a very fun boy. He is spectacular. Growing. Learning. Smiling. Snuggling. Ga-ing.