Ilse was born with Smith-Lemli-Opitz Syndrome. She was a beautiful surprise, six weeks early and pretty much like a bump on a log. She didn’t do much at all, except cuddle, which was all I needed her to do. I expected others to see her with the rose LOVE colored glasses I did, or at least, to see her with positivity and acceptance. My family was a dream, and people from church brought meals and prayed for us because of the special needs world we’d been thrown into.
What I didn’t expect was to get negativity and rudeness from the medical community. I guess I was naive. We had mostly negative encounters with drs during Ilse’s early life… from the dr who told my husband, dad, and brother-in-law that Ilse’s issues were from my obesity, and that I better get it figured out before getting pregnant again (ex-CUSE me?); to the dr who felt me up while telling me that Ilse had SLOS; to the dr who insinuated that I’d taken too much Mucinex during my pregnancy and that’s why Ilse was the way she was.
But the one who took the cake, for me at least, was the first pediatrician Ilse was a patient of. I’d chosen this dr on the advice of my sister, not that it is her fault it turned out the way it did. My sister had no experience with special needs kids and who WHO would have thought that a nice pediatrician would be so horrendous. I think it was Ilse’s 2 month check up where it happened. The nurse casually mentioned the milestones checklist that the front desk lady had given me and that I hadn’t even looked at yet. She said, “Dr X said don’t even fill that out, Ilse can’t do those things anyway.”
Oh my poor baby. Poor me! The negativity from the dr and conveyed by the nurse hit me right in the heart. How dare she be so negative about my child? The precious little girl who was gifted to me by God and who could do some of those dang things on that list! Some, not all, but not none, either! I don’t remember what I said. I wish I’d said something amazing. I wish I’d educated her in a kind but snappy way. I wish I’d interviewed the pediatrician before ever allowing her to examine my precious blessing. I wish I’d walked out of the office and never gone back. I wish I’d never been in that situation at all! I wish lots of things had been different in those early days.
Now we have a great pediatrician. Dr. Menchaca loves Ilse and treats her like a precious jewel! I interviewed her before we switched to the new practice and told her how important positivity was to me. I think she was surprised I even had to say that. And now I know how to keep Ilse away from people who don’t value her and who don’t think she’s an awesome creation by a loving God. I’m so thankful she’s surrounded by caring therapists, drs., and nurses. And her family couldn’t love her more.