I Feel Free!

Today we told the world, or at least the Facebook world, all about our dear son’s struggles. The cystic PVL, the cerebral palsy, all of it. Of course, I still put my positive spin on it, but it’s out there. And now that it is, I feel free! Only a few of our close family and friends knew before this morning.

I thought this would feel like a weight had been lifted, but that is an understatement. It feels like we’ve been keeping this big secret for so long. For what reason? We’ve accepted it, we’ve even embraced it! I guess we’ve continued making excuses for so long to protect everyone else. Why?

Maybe we’ve been afraid of the sympathy – the looks, the not knowing what to say. We don’t want that. We just want everyone to continue treating M like they have been. He’s still the same little boy he was before everyone knew. Of course, we are getting lots of support and well wishes, but what I’m really looking forward to is fewer questions (hopefully).

The advantage of sharing this news with the Facebook world first is that I didn’t have to see people’s reactions as they received the news. Selfish? Maybe. I’m an easy crier and I hate it. If I can avoid having a teary conversation with someone, awesome.

Why today? I’m not totally sure about that either. M and I were having a great morning together while Daddy was out hunting. It just felt right. Most of the time I don’t think about his ‘disabilities’, I just see him for the amazing little child that he is. And that’s all I want – for everyone to just see him for that.

If you’re holding a secret for the protection of others, let it out. I bet you’ll feel better too!

Speech Evaluation Day

After a laid back weekend of taking in the beautiful colors off the season, it was back to reality for us this morning. M had his first speech therapy appointment to have an evaluation done. I pretty much knew what we were going to be told, it’s obvious he is behind, even for his ‘adjusted’ age (due to prematurity).

We have been extremely fortunate in that we have all liked almost all of M’s providers right from the start. His new speech therapist/pathologist was no exception. She was friendly and welcoming from the moment she saw M and me sitting in the waiting room. The attitude and first impressions of people go SO far! I’ve met a few providers that I hoped to never see again but largely, our experiences have been positive thus far.

For the next hour, we discussed M’s vocabulary, the noises he does and doesn’t make, his eating habits, and so much more. I struggled with some of the questions. Does he use the ‘ca’ sound? I think so……. Does he understand ‘no’? I think so…………… (if looking at me, smiling, then continuing to do what I asked him not to do is understanding, than yes, he gets ‘no’ to a tee! J) Although I ‘converse’ with him daily, I hadn’t thought a lot about the specific sounds he was and wasn’t making. I called to mind most of the words that he knows but not each specific sound. Does anyone else have a hard time answering some of the doctor/therapist evaluation questions? Even at our regular checkups sometimes I really have to stop and think about it.

The therapist concluded that M was behind, just as we knew, but she is pleased to see him trying and getting frustrated at times, seemingly due at least partially to a lack of communication. We’re all hoping the frustration will help motivate him to learn new things. She’s encouraging us to add in signs (more, done, play, etc.) along with our words to help while M works on enlarging his vocabulary. She also noted that oftentimes, kids like M, especially with cerebral palsy, are already working so hard on their motor function that the speech takes a back seat. I can definitely see this with my son. You can tell that it is physically taxing for him to sit up and concentrate on anything for more than a minute or two. I’m sure that adding more speech while he’s in that position is overwhelming.

It breaks my heart to see my M struggle with doing all of this, but I know we have to keep pushing him to find new ways to communicate and play. Sometimes I wonder how much good speech therapy (and PT and OT for that matter) does, but it’s worth a try, right? I think that it is worthwhile to have outside opinions and ideas. We’ll try anything to give M every opportunity we can!

Kind of along these lines, a friend posted a link the other day to a great blog post. My child still has a ways to go before being four years old, but I feel the article rings true for any age. http://www.huffingtonpost.com/alicia-bayer-/what-should-a-4-year-old-know_b_3931921.html. We put our children through enough without comparing them to other kids and ‘standards’. What is ‘normal’ anyway?! It’s important to remember that all children learn at different paces, it doesn’t necessarily make them more or less intelligent.

Have a great week!

Slow Going

“How old is M now?”

“Twenty months.”

“Wow, he must be running all over the place, huh?”

“Nope, not yet.”

“Oh?”

This is a conversation we are all too familiar with these days. Just yesterday we were at a birthday party for a two year old friend and we had that experience at least a few times. You could see the questioning expressions as M army crawled around and struggled to sit while the guest of honor, just four months older, ran circles around him.

A little recap for those who haven’t been following. My son, ‘M’, now twenty months old, was born about three months early at only 26 weeks gestation. I did everything right but it happened still. To add to this, he also was diagnosed with Cystic PVL, a condition that damaged some of the white matter in his brain. Seeing his MRI is super scary, but he’s still just my sweet little boy. And come to think of it, I haven’t even looked at the MRI since the day we got it!

We do pretty well with all of this most days. My husband and I work together to provide in-home physical therapy on a daily basis (really just purposeful intense playing at this age). Our therapist gives us ‘homework’ to do in between visits. M also has countless other appointments and follow-ups. There aren’t enough hours in the day to do what we want with him, but we make the best of it.

We were told when M was just a couple of months old that he may never crawl. If he crawls, he may never walk. And if he walks, he may never be able to run. This was all as he was still hospitalized in the NICU and on many meds and oxygen. Of course, we never know what will happen with any child born. Accidents happen, and things come to light as kids grow and develop.

Enter: frustration. We’re often asked about M’s progress by friends and acquaintances and most don’t know the full story and they don’t understand why he isn’t walking. Truth be told, we really don’t fully understand all of it either, but we do our best. While many parents are elated to talk about their child and the new thing they’ve mastered, we try not to encourage those conversations. Selfish? Maybe, but it has just gotten old to us. Even fairly close friends don’t all know the whole story – we’ve been reluctant to tell for fear M (and our family) will be treated differently. We don’t want him to be defined by a diagnosis that may or may not have much effect on him five years from now.

However, M recently gave us a bright glimmer of hope when he finally started army crawling recently. Up until about July, rolling was his main mode of getting around. Not anymore, though! He is a quick little bugger now! Still, the questions from others get old, and it’s tough to see friends’ kids crawling at half of M’s age. His speech isn’t where it ‘should’ be either, and he doesn’t eat as well as others his age, but we’re confident he’ll get there in his own time.

Despite it all, we know the human brain is quite amazing. By knowing what we’re up against so early on, we hope we will be able to help M ‘remap’ his brain to learn in different ways. (Check out http://www.karenpapemd.com/ for one doctor’s work in this department.) Still, it is slow going. As hurdles are cleared, new ones pop up. We find joy in the little things, and allow ourselves to break down when we have to. It’s not all rainbows and flowers but positivity goes a long way.

From day one of the diagnosis, we have refused to let it break us. We have vowed to get up every day and help M kick Cystic PVL right in the butt! We won’t let it define M or what he can and can’t do. If he wants to be a triathlete, we will support him. If he ends up wheel chair bound, he can still drive and live on his own if he wants. This is 2016 – anything is possible! While it sometimes feels that we’re moving at a snail’s pace, we’re still moving. Never give up!