On October 2 I took our sweet little guy to the pediatrician for his 4 month well child check. I’d been having some concerns about his development- namely his lack of head control, no movement towards rolling and disinterest in “standing” when held up. Daisy was a very active baby very early on, so I thought maybe Ezra was just moving along at his own pace. Our doctor assessed Ezra and felt that something more was going on. He referred us to a neurologist and although he was careful not to name anything specific, he did allude to concerns in the neighborhood of muscular dystrophy. Holy shit. I could barely hold it together in the appointment- would our little guy ever walk? What would his life be like? What would our lives be like? I was overwhelmed and terrified…
I called Ethan and immediately felt so grateful to have such a wonderful partner. Life can be hard enough as it is, but to have such a strong, loving partner will make this new challenge bearable. We were able to get in to the neurologist on Thursday- just 2 days later. After a short assessment, the neurologist agreed with our pediatrician’s hunch that something is going on. He was also careful not to get too specific, but did introduce us to the term “congenital neuromuscular disorder”. Googling this term (which I have only done once- and won’t again until we get a more specific idea of what is going on) brings up lots of information on muscular dystrophy, scary images of people on ventilators and of course, wheelchair bound adults and children. The internet will be an invaluable tool to us once we find out exactly which disorder we are dealing with, but until then- I am doing my best to not do too much research. Ezra had a bunch of blood drawn and it is being sent out to various hospitals around the country to be analyzed. This process takes 3 weeks… so now it’s a waiting game. If the blood work comes back inconclusive, they will have to biopsy his muscle to get some answers. We are really hoping this does not have to happen.
I was debating whether or not to do this blog… it is a private family matter, but we are so fortunately to have family and friends that want to be supportive. I have also seen the power of networking and you never know who might know someone who knows someone who can help us- physical therapy ideas, treatments, support groups. We aren’t the first family to have our lives turned upside down like this- and we are open to all suggestions for how to make our lives as “normal” as possible. Whatever normal is. I figure this will also be a way for us to disseminate information and updates more efficiently to our support system. Today I feel strong- like whatever the outcome, we can handle it and make our son’s life full of joy and love. A few days ago, I felt less strength and more fear- I’m sure it will fluctuate depending on the day.
So here is what we know.
Ezra is an incredibly happy, bright eyed baby. His smile will make you melt and he’s got the most adorable little dimple. The preliminary blood work shows elevated enzyme levels, which indicates a problem. Now we wait. And hope for the best.
I wish I had some wisdom to share, but instead I’ll send love for you all and gratitude for Ezra that he has two capable, wonderful parents to guide him through whatever steps come next. Definitely hoping for the best for this beautiful boy. xoxo
Emily,
I had no idea you were dealing with this. Keep your head up and please let me know if there is anything I can do to help. I will talk to the medical professionals I know here at Maine medical center, but rest assured I will maintain your family’s confidentiality. Stay strong, you and Ethan are an unbeatable resilient team!
Much love,
Bryn
Even though it may feel scary to share something so personal with the world on a blog you will find amazing support through this format. People come together to form communities here and you can access so much support and information you may not otherwise have.
I hope and pray that Ezra the happy little guy he is regardless of what the future holds. He is beautiful and you are too!
Emily,
I admire you for creating this blog; I think it is the way to go for many reasons, one being to receive support and love from your admirers. We only shared a brief time together AND you were able to impact me with your maternal knowledge/wisdom, open mind, and vast life experience. I know Ezra is surrounded by love and nurture by one of the best mom’s I have encountered, seriously! My heart is with you on this journey.
Oh my dear, I’m so so sorry!! I know from my own experience that writing out your thoughts and feelings can be incredibly therapeutic and enlightening, so I am glad you’re doing this – and selfishly, I’m glad to know there’s somewhere I can go to stay informed. Ezra is in good hands with you and Ethan and your medical team. Remember, one second/minute/day at a time. Much love to you all!
I was half-asleep when I first read your blog post this morning and thought I might not be processing what I was reading. I imagine you know this feeling, but on a much, much grander scale. I am not a religious person, Emily, but I do have all the faith in the world that you and your incredible family will face any challenge set before you. You don’t know yet how difficult that challenge will be, and I hope more than anything the doctors will soon tell you it is not nearly as bad as your worst fears. I know that I will be waiting, along with countless others, for news. Good news. Hopeful news. And I will be thinking of all of you in my quiet times, more often than you know.
Hi, I am Lindsay’s aunt , read your story, based on my own experience, get yourself to a top flight children’s hospital in Boston, don’t waste time with local drs, they do not see enough cases, something associated with Harvard
Hi Emily!
I’m so sorry to hear about Ezra’s medical issue. The unknown is so hard to sit with. I’m glad you’re reaching out for support. I know a lot of people in Boston, so if you decide to go there (probably a very good idea), and you need a place to land, let me know. In the meantime, I’ll be keeping your family in my thoughts!
All the best,
Gray
The Behrs ❤ The Besseys. Although I can't think of any tangible way to help right now, please know we are thinking so much about you and sending our love.
he’s a sweet, handsome little man who’s lucky to have you as a momma…It’s these tests in life that make you the amazing person you are Emily!! I hope for the best and stay strong lady:D
Hello Emily – I am thinking of you and Ethan and Ezra and Daisy and sending warm wishes and prayers your way. You are clearly a loving and attentive mom to notice the signs, and to be proactive about it. I hope you all can put the worry aside for a little while and just enjoy each day. – Love, Meredith
and I hope with you. Sending you all peace and love.
Thoughts and prayers to your whole family. The Good Lord will be with you all the way on this journey.
Sending prayers and strength to the entire Bessey family. I made a donation on the fsma.iorg site and hope everyone will.
Ezra sounds like a true fighter and sweet child. Stay strong.
My thoughts are with you. Will share the donation link, as well.