Spring Break!

This past week has been spring break for the kids and me, and even though we didn’t get to go on vacation this time, a lot has happened! First, Liam got his first ever haircut! He has very thin and light-colored hair, so some of you might be thinking, “why would you cut his hair when he hardly has any??” But really, it was a lot of hair that was growing in all kinds of funky ways and driving me crazy. So, we got it tidied up at one of Nell’s favorite places, Kool Kutz 4 Kids. He did great and liked sitting in the car. This is a “before” picture. (I realize now that I don’t have a good “after” picture yet. Oh well.)

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A couple days later, the kids and I joined my mom (Mimi) for a staycation in Fort Worth on Monday and Tuesday! We had a blast, especially Nell— she LOVED every thing that we did, which included a train ride through Forest park, the National Cowgirl Museum, playing at the fountains and water gardens downtown, and riding in a horse and carriage at the Stockyards. It was chilly weather the whole time, but the kids didn’t seem to mind as much as my mom and me ūüėÄ

We had a great time with Mimi, and later in the week Liam made a huge accomplishment: he pushed up into sitting position from the ground ALL BY HIMSELF!! This is something we’ve been working on for a long time in physical therapy, but he had no interest in doing it because he hates using his arm and leg muscles in that way. But I showed him a new way to do it one morning, and a couple hours later, he was suddenly sitting up by himself! I was shocked and excited, but now I’m feeling worried because he gets all around the floor now with his army crawl, and since he can sit up by himself now, that means he can fall back and bang his head anywhere now too ūüė¶ Liam has trouble with balance, and even though he’s been sitting independently for ten months now, he still sometimes falls backwards on his head. I’m not sure when that balance is going to get better, but I hope it does soon so that I don’t always have to worry about his head getting hurt (we did go out and buy a bigger, thicker rug to help in that area, since our other rug was so thin it basically gave no padding at all). If you want to see him mastering that skill, click here for a video. Now he’s scooting over to the couch, sitting up and pulling up on the couch all by himself. This really is a game changer for us, people!!

We’ve had a great spring break, and it’s back to work and school for Nell and me this week, but first I’ll leave you with this video of Liam enjoying himself on the swings at Parr Park a few days ago.¬†There’s just something about a baby’s laughter that can brighten your day, don’t you think?

A new perspective

We’ve known that Liam has 18p- for almost five months now, and while there are still days that it’s difficult to accept and be okay with it, it IS getting easier to embrace it. In the beginning, Will (husband/daddy) and I couldn’t stop thinking about the far future and what it might hold for Liam. Will he be able to have a conversation with us as he gets older? Will he be able to read? Will he ever have close friends, and is it possible that he could fall in love and get married? Is going to college completely out of the question for him? Questions about the future like these began to take over our minds, and it wasn’t good for any of us. I think that this type of reaction is normal when finding out such life-changing news, but every little thing that Liam did or didn’t do ended up having repercussions in our minds about¬†some huge step in the future, and that wasn’t fair to him or to us.

The thing about 18p deletion is that it’s hard to find anecdotes online about people that have it, because it is very rare. 1 in 50,000 people are born with it, and that means there isn’t a large online presence of people posting about either themselves or their children with it. (Which is one of the reasons that I wanted to start this blog.) But we were able to find some important information about it from his geneticist, and then from The Chromosome 18 Registry and Society, and other various resources online. One of the most common challenges that people with this deletion face is trouble with speech– that seemed almost a given when it came to any story we read about or video we found of people with it. We are lucky to know that Liam has it at such a young age, because he has already begun speech therapy services at one year old and they are already making a difference after only a couple of months! But he will likely still have trouble articulating his thoughts and forming words clearly in his life, and that’s okay. One of the major things that I have learned in doing my research is this: we have no idea what Liam’s potential is! I’ve read blog posts written BY adults with 18p-, telling their stories and sharing their accomplishments. One such lady was in her twenties and engaged to marry a man named Liam (ha!); another one was accepted into a university in the UK and about to attend college; other information is often provided by the parents of children with it, and I’ve seen varying degrees of challenges and accomplishments there, too. The point is this: we just don’t know what Liam will be able to achieve in his lifetime, and we can’t use this label¬†of having “special needs” as a box that will stifle him. I want him to reach HIS fullest potential and achieve HIS personal goals as grows up, not mine or Will’s, and not the school system’s. I want to work with him in areas of physical and mental development as much as I possibly can and then see where HE¬†goes from there.

I don’t hate the word “special” when referring to people like Liam, but it does rub me the wrong way at times. He is a special child, yes– but he would be either way, and so is my daughter, and so are your children, etc. He has special needs and will likely be in special education in school, but I don’t want him to only feel labeled as one thing. We were terrified at first of our family having to live a “special” life and go through more challenging¬†experiences than a lot of people, but we are learning to embrace it. In some ways now, I’m excited that we get the opportunity to live a unique and different life than the average family! We know that there will still be so many difficult times and hardships to face (as there are in every family), but Liam has given us an opportunity to become better people, to live a unique lifestyle, to celebrate the tiny little things in life, and to love a very special little person. We are the ones that get to raise this cool little dude,¬†and help him, and watch him grow into a man. For that, I am truly excited!

 

Baby steps

Before we¬†found out about Liam having 18 p-, we couldn’t figure out¬†why he was developmentally behind in several areas. He couldn’t sit up independently until he was over eight months old, he was always way too weak to hold his head up off of the ground (but his head is QUITE large compared to his body), he never showed any interest in learning how to clap or wave, etc. In other ways he was on track or even ahead of his age, but in so many ways he was falling behind, and it started to weigh heavily on our minds that we were doing something wrong.

When he was around seven months old he started physical therapy for the first time. They came out to our house once a week to help teach him how to sit up unassisted (really it was more about teaching me how to teach him). He actually picked up that skill really quickly in just a few sessions, but when the focus changed to crawling on hands and knees at 8.5 months old, he was just not interested in learning how to do it. This boy just HATED holding his head up off the ground, and while he has made huge strides in that area and can actually do it for fun now, he still does not want to ever be on his hands and knees. He prefers to do a semi-army crawl to get around, or even just roll all around the floor. So while we’re still working on being in the hands and knees position so that he can learn to get in and out of sitting, he has shown a lot of progress in many areas thanks to his¬†physical therapy.

From three months old, Liam has always loved standing on his own two legs. Because it was his favorite position from such a young age, he was able to build up his leg strength over the last year. He’s been playing around in his walker for several months now (this is his favorite activity, especially when big sister Nell is involved and she chases him around on her scooter),¬†and he was getting progressively better at standing on his own without assistance. The day before he turned 15 months old this past month, he decided to take his first real steps without any help!! It was right before a physical therapy session, so he was able to show off his new skill to his therapist and daddy got it on camera. I can’t post the video on here, but here’s a link to youtube so you can view it.¬†Needless to say, we were all SO thrilled that he took real steps by 15 months old, and is learning how to improve that skill each and every day. (Here’s another link to a video of him two weeks later, walking in shoes even!) We had heard that kids with 18 p- usually learn to walk between the ages of 2 to 5, so he seems to be ahead of the game in that area ūüôā He has a long way to go in building up his muscle strength all over, but we are so proud of our little man’s achievements already.

When our daughter learned how to walk a couple years ago, it was such an exciting experience for all of us. I was worried that milestones like that for a second child wouldn’t be as exciting the second time around– but I was so wrong! I am just as excited, maybe even more so, that our little boy was able to overcome his obstacles and make such a huge leap by taking a few baby steps. This is one proud mama and daddy over here, and you can see it on Liam’s face every time he walks that he’s incredibly proud of himself too.

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Stay tuned for more updates on Liam!

Life with Liam!

Welcome to my new blog about living life (and loving it, too) with 18p deletion! I am the mother of two sweet children: a little girl named Nell, who is three years old, and a little boy named Liam, who is 15 months old. My husband and I found out in October of 2016, just before Liam turned one year old, that he has a rare genetic disorder called 18p- syndrome, which is a chromosome abnormality that can cause a whole host of medical problems. The biggest commonality is that it causes both physical and mental challenges, which can present themselves in a variety of ways.

To be completely transparent, when we got the call about our little Liam, we were, well, devastated. Heartbroken. Even though we knew that he was developmentally behind in several areas, and that his physical challenges weren’t quite “normal” for his age, we never *really* thought that there could be something significantly different about our son. But when we got the call, and then began to research as much as we could about it (which was difficult, since it is quite rare), it all began to make sense to us. Over time, we began to process what this might mean for our family and our Liam, and I believe that we have now come to a place where we feel comfortable talking about it with others and exploring our lives with a special little boy that we love so dearly.

That’s why I wanted to start this blog. I’ve been thinking about it for a while, and I think I’m at a place where I can write about it and share it with you all. I want to tell you of our daily struggles and successes, our fears and our dreams, our frustrations and celebrations. And a lot of those things involve our three year old daughter, too! I hope that this blog can be a place where families who are trying to cope with the sudden news that their child has 18p- can come for information and hope, but I also want it to be a place where our own friends and family members can get a feel for what’s going on in our lives on a daily basis. 18p- is ¬†a rare genetic condition, and there needs to be more written about it. I hope that I can help others learn about it, whether it affects them directly or not, and I hope that I can help myself in this process, too.

Thanks for reading! Here’s a pic of my precious kiddos.