The Diagnosis

One of the main reasons I decided to start writing a blog is to help me articulate my feelings about Caleb’s recent cerebral palsy diagnosis. It’s still so fresh, and most days I feel positive and optimistic; but lately, the littlest thing can turn my day around quickly. I’ve come to realize these feelings probably will never go away.

A few months ago, we were so excited when Wyatt starting sitting up on his own. It was such a fun milestone to see him sitting there playing with toys, eventually flopping one way or the other. We assumed Caleb would start to sit soon thereafter. Weeks turned to months and still no sitting, so I brought it up to the pediatrician. He referred me to our county’s early intervention program. Additionally, the doctor recommended we see a pediatric ophthalmologist for Caleb’s occasional cross-eye. At the eye doctor, we found out that he was incredibly far-sighted. That was a sad day for me, because I had mommy-guilt over the fact that he hadn’t been able to see properly for his whole life. I realized I was being silly because it’s just glasses, for God’s sake! I wear glasses, lots of people wear glasses… no sense in getting all bent out of shape. It helps that he looks just so darn cute in those glasses, and they fog up when he cries – which is heartbreakingly adorable!

Ma! I can’t see!

A week later, two therapists from the early intervention program came to assess Caleb at our house. They determined he has high muscle tone in his legs and low muscle tone in his core, which makes it difficult for him to sit. They recommended daily stretches, weekly physical therapy and a visit to a neurologist. The last suggestion really didn’t sit well with me. I did what every mom in the internet-era does… I googled the shit out of “high muscle tone.”  I kept getting results that mentioned cerebral palsy and I thought, “This is why I shouldn’t play Dr. Google, I’m getting all worked up over probably nothing.” The next day the boys had another doctor’s appointment for a vaccine.  When I mentioned the neurologist recommendation, the doctor started to talk about cerebral palsy and that it shouldn’t be ruled out; the neurologist will be able to tell us more definitively. This is where I fell apart for the first time (of many times that week).  I thought she was just prepping me for the absolute very worst, but a few days later, his diagnosis was confirmed by the neurologist. Caleb has a type of cerebral palsy called spastic diplegia, which basically means he has high muscle tone in the lower extremities. We know that this is caused by a brain injury when Caleb was in utero, during or shortly after childbirth. It’s usually unknown as to what causes this injury, but fortunately it’s not progressive and won’t get worse over time.  We don’t know where on the CP spectrum Caleb falls. He’s able to make eye contact, babble and smile like crazy so the hope is that it’s not affecting any of his cognitive abilities. We just won’t have any clear answers for a while. It’s a big wait-and-see game.

The day we found out was rough, I’m not going to lie. Shane and I took turns breaking down crying and tried our best to wrap our heads around what the future will bring. Even now, a couple weeks later as I try to describe it, a familiar lump rises in my throat. It’s hard hearing that your son will struggle to meet milestones, will probably always have an awkward gait and will need therapy for the foreseeable future.  It’s even harder to think a 10-month old baby already has such a tough road ahead of him. My husband said it best when he explained that he just wanted to take that burden on ourselves and spare Caleb the struggles he’ll inevitably face. What breaks my heart is the thought of Caleb being bullied because of his differences. I want so desperately to protect him from that but I know, cerebal palsy or not, you can’t shield your kids from bullies, no matter how much of a helicopter-parent you are. Luckily for me, I’ll be sending him to school with his best friend and protector, Wyatt!

This new life will take some getting used to but I have every confidence in our doctors, therapists, and of course little Caleb. I have faith that he’s going to meet every goal we set for him and will grow up to be an independent adult with a family of his own someday. Whenever I catch myself feeling down about our situation I just hang out with my boys and am instantly reminded how truly lucky I am. Caleb is still his smiley, sweet self and Wyatt is doing something new and daredevil-ish every day.

When we found out we were pregnant with twins, I heard this phrase a lot: “God doesn’t give you what you can’t handle.” I took that to be a compliment, that I’d be able to handle twins and do a good job raising them.  I think this phrase applies now more than ever. We are lucky to be insured, and to have access to the best resources and doctors. Not to mention, Shane and I are 100% committed to learning and doing all we can to help our son. For the time being, aside from therapy and doctor’s visits, we’re doing the only thing we can… we’re taking it one day at a time.

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I'm a working mom of three fantastic boys: Caleb, Wyatt and Parker. My husband, Shane, and I live in the Washington DC suburbs where we enjoy playgrounds, pools and never getting to sleep in. This blog is a journal of our day-to-day lives as well as a chronicle of Caleb's progress after a recent spinal surgery to alleviate the effects of his cerebral palsy.

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7 comments on “The Diagnosis
  1. Uncle Ross says:

    Hej Allison, Shane, Wyatt and Caleb,
    Wow this was a powerful blog entry. I am sorry about Caleb having CP, but of course I am really happy that he has a wonderfully strong and supportive family. I recognize a lot of the feelings you have discribed. It absolutely gets easier, but it can also be really hard to deal with at other times. If any of you ever want to talk, or get some advice, or have someone listen or whatever; get in touch. Linda, the kids and I will be back this summer for a long time, so we will definitely meet up then. One thing we would like to mention to you guys to look into is a type of training called Conductive Therapy. It is a specially designed muscle training program for kids with CP. Alicia has been doing the exercises with an incredible trainer twice a week and she has been getting so much stronger.
    We are thinking about all of you. Remember that you Allison and Shane did not get to choose to have Caleb and Wyatt. They chose that they wanted to have you two as parents. They made the right choice!
    Love,
    Ross and Linda

  2. Kat says:

    Hi there – I am sorry about all the things that you have to handle, but you seem to be doing well (from one post…so I hope I’m not off). I look forward to following along and learning more about CP (which I’m not off to google) and to watch your two adorable boys grow. ps- the glasses really give him the best geek-chick look ever.

  3. Lucille says:

    Thinking of you.

  4. Sharon Arnold says:

    Allison I’m reading your blog & hope that’s ok w/ you. You may not remember me but I know you & have been a friend of the family all my life. I am so proud of you & know that you & your family will always be in my thoughts & in my prayers..

    • Of course you’re welcome to read it and I encourage you to share our story! It’s going to be a long road ahead, but knowing that I have so much support gives me lots of strength! Thanks for reading/commenting!

      • Bonnie (Cyr) Lyford says:

        I’m so proud of you Alison. I’m so proud of you for all the hard work and committment you are putting into your children. I’m a special education teacher (highly certified for birth – 5 years, however, my main focus the last several years have been with ages 3 – 5). I’ve witnessed children come through our schools who have a diagnosis of CP and I can tell you right off that unconditional love and continued parental support is the best thing you can offer them. It’s been very obvious over the years in this field whose parents are behind them 100%. You both are obviously amazing parents and I want you to know I got your back anytime you want to scream or cry. I’m only a click away 🙂 Hugs!

  5. […] years and our twin boys are 14 months old. I started this blog when we found out one of my sons was diagnosed with cerebral palsy this past spring. This blog is about Caleb’s progress and our life in general. Thanks so much […]

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