Saturday, September 26, 2009

Another anniversary

One year ago today we were told that Ben had Cerebral Palsy. It was exactly one week after his 1st birthday. I gave the details of that day in an earlier post.

As I look back now, I would say that we were pretty blind-sided when the neurologist asked if we knew that Ben had CP. Being accountants and not medical-professionals, we didn’t even know what CP was. We knew that Ben was very delayed but I really think we thought it was just a lingering preemie issue that would eventually resolve.

The first few months were filled with anger, sadness and an overwhelming need for more information. I felt like I was a hamster in a cage going round and round on a wheel. I would go online and read everything I could about CP, its effects and its treatments. This would usually result in severe crying displays or outbursts of anger and “why-me’s”. The only thing that would have any sort of calming effect was seeing Ben himself. He is such a happy child that to see him would automatically lift my spirits.

The next stage for me was one of denial. Ben seemed to be making progress. And I went back to MY original diagnosis of “this is a just a lingering preemie issue”. Ben had his first MRI in January and I thought for sure that it would show nothing. Alas, I was wrong, It showed that Ben has PVL. A very large percentage of infants with PVL will develop Cerebral Palsy. I think this brought me out of the denial and back into reality.

After this, I think followed acceptance. I was still often sad. Especially when seeing other children (especially twins) around the same age as the boys. I was still bitter. And I still felt “jipped” out of the normal baby experience and even the normal twin experience.

But this is slowing getting better. Mostly likely because Ben in doing so well. He now crawls on all fours, can get in and out of sitting, can pull to stand and even cruise (with help). I think maybe the hardest part of getting the diagnosis last year was that we still didn’t know much of what Ben would eventually be able to do. We didn’t know if he had speech or what cognitive delays (if any) we could expect. We didn’t know where he fit on the severity scale.
We now know that he does have speech (I think he now has over 70 words). We also know that he's pretty smart too. And on the severity scale, he's not exactly mild but not moderate either. If I was describing a steak, I'd say he's medium-rare. And even though we'd love it if we could say his CP was mild, we're pretty happy about where he is.


  1. I often think that the worst part is the not-knowing. Really, I thought I could deal with anything if I just knew what it was. I think Charlie is a clear-cut case of moderate CP and for the most part I'm just fine with that. I do wish he had a little more in the way of speech, but I believe it will come--it's just going to take time.

  2. Hi, I found you via the I heart Multiples site, and I've been lurking for a while now. I just wanted to say that I can totally identify with this post, although for us, the "official" diagnosis came several weeks back. (we have known for some time that this diagnosis was coming, so it wasn't a shock exactly, but still no one wants to hear those two words in connection with her baby) Anyway, I just wanted to say I hear you and I can understand. Hugs.

    Stacie--mom to twin boys born at 28w3d: both with hydrocephalus and shunts due to IVH's, one with CP, both the joy of my life :-)

  3. Hi Stacie - Welcome! It's great to see you. Hopefully I'll see you often.

    Katy - Usually I'd agree but for us, we really had NO IDEA that there was any possibility of a diagnosis at all. We saw the ped. neurologist because of some strange episodes that Daniel was having and ended up finding out that Ben had CP.

  4. I can relate to this a lot. I just wrote a blog post and mentioned our "anniversary" of hearing CP as well. It was Sept. 17.

    Our issue is that Al.ex's dx is still unclear. I'm coming more to terms with that, because, really the label only matters to us for services. Whether it's CP or not, in our case, doesn't seem to change the treatment/therapy plan.

    Not knowing the future is hard for any parent with *typical* kids. It's even harder for special needs parents because we're constantly tweaking our expectations.