Saint Paul, MN
My son was diagnosed with Fragile X Syndrome in February of this year. Fragile X is a genetic mutation that causes significant intellectual deficiencies. Chances are high that my son, Conor, will never be independent, will never drive, will never marry or have a family of his own. Some with Fragile X never even potty train. I was about 23 weeks pregnant with baby #2 when my husband and I found out about Fragile X.
We now know that I am a carrier and there is a high chance that our daughter will also be affected. We have opted to wait until after she is born to have her tested. I am due next month and would love to share more about our family and Fragile X after she is born. I am trying hard not to let Fragile X steal one iota of joy from my (now) last pregnancy or from the joy that bringing a daughter into this world creates. Maybe it is frivolous, but finding cute baby things (shoes) has helped during some very heavy, overwhelming days.
Baseball is big in our family. I had dreams that our son would pitch like my great grandfather and brother did. I even thought my brother may coach him someday and I couldn't imagine anything that would make my dad more proud. This is still a dream of mine although the details have changed quite significantly.
I saw an advertisement for the baseball moccasins and really couldn't think of anything cuter to have our daughter wear this summer while grandpa was working at the ball field. I realize this isn't what you were looking for, but I have taken on a bit of an advocacy role since finding out about my son's diagnosis and I plan to share our story where I can when I have the opportunity. I am so proud of who he is and I am trying really hard not to let his diagnosis define who he will become. I can't wait to share pictures of our daughter in her moccasins this summer.
You can find the Shellum family on Instagram at @bdholm.