Posts Tagged ‘fragile x syndrome’
Finding The Ones Who Understand
When I was pregnant for the first time, so were a bunch of my friends. We had plans. Our kids were going to be best friends and grow up together. We would watch them meet milestones together and bring them to the park for playdates. It was going to be the, let’s be honest, the somewhat unrealistic expectation most first time moms have, but I have seen it happen, the pictures posted online to prove it. Some best friends do get to extend those deep connections to their children and…
Read MoreLetting Go of the Things Beyond our Control
We all know mothers can be portrayed as being a bit dramatic. I am not saying I agree with that, but I do think moms, particularly new moms, put an enormous amount of pressure on themselves to raise perfect children. Something that is completely unattainable, especially when you are a new mom trying to figure out why your child is so different than all your friends’ kids. This was me 4 years ago, and I, of course, tried to come up with a way to “solve” these differences. What is…
Read MorePlease Make Room For Us
Last Tuesday started like every other day. I woke up way too early, tried to coax my son Ben back to sleep for an hour and lost that battle. Then, I gave in, got up and got ready while trying to keep him entertained. I woke up Caleb and shuffled both boys off to daycare. It’s the story most working moms could tell every single day. It was my usual stress, the usual morning hustle, but then someone stopped me in my tracks, both figuratively and literally. The boys’ daycare…
Read MoreDiscovering Fragile X Syndrome
I feel like most of us could all tell similar tales of when we found out about our children’s diagnoses. Some of us were thrown for a loop, others were somewhat grateful to finally have answers, and some of us knew there was something there from day one. Maybe you were like me and were somewhere in the middle. There are some things I look back on from the day my oldest was born and remember thinking something seemed different, and then there were the thousands of times I told…
Read MoreYou Boys have made my Heart Whole
Caleb and Ben, my sweet little boys, you both mean the world to me. You’ll never even know. You wake up each day with big smiley grins. Those smiles melt my heart, and I live for them. You both have fragile x syndrome; there’s no denying it runs our household. And although it’s been quite far our biggest challenge, it’s shown me the most amazing abilities you both hold within. When some say they’ve worked hard for everything in their life, they have no idea. You two have and will…
Read MoreTo my Son’s School District
I registered my son for school today. I drove five minutes from my house on this cold winter morning and walked into the office with all of our forms: his birth certificate, our utility bills, his physical. This school is a large part of our community. It’s the only school in town, and it’s a one school district. It’s where I always envisioned my son starting school. But today, when I walked into that office, I knew I wouldn’t be coming back and that my son will probably never even…
Read MoreCall Baapa
“Call Baapa. Call Baapa. Call Baapa. Call Baapa. Call Baapa.” Conor repeated this over and over and over (and over and over) while he paged through a book on the living room floor. He was stuck. This has started happening more lately and it always breaks me. As I stood there silent I couldn’t stop the tears from rolling down my cheeks again. I just wish his brain worked right, the thought swept over me again for the 100th time that week. Conor was diagnosed with Fragile X Syndrome shortly after his second…
Read MoreHusband, It Might Always Be This Hard
My husband and I are, in a sense, new to this role of being special needs parents. Both of our children have fragile x syndrome and although our boys were born with this genetic condition, we didn’t know how significant our 2 year old son’s delays were until this past summer when Caleb’s genetic results came back. A few months after receiving Caleb’s results, we got news of Ben’s diagnosis as well. Both of our boys have full mutations of fragile x syndrome which causes them to have significant developmental…
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