Why This One Question on My Child’s Preschool Form Gives Me Anxiety


Well, it is that time of year again: back-to-school time. The shopping, the preparing, the excitement… and the forms. While I’m pretty sure no parent looks forward to filling out forms, there’s one question that always gives me anxiety. When the question is asked on a preschool get-to-know-you form, it looks like this: “Medical information you should know about me…” It sounds like an easy question, right? For most, perhaps so. Not in this situation.

How can I explain my daughter’s medical history on two lines? Her file at Children’s Hospital is well over 400 pages long — and I need to summarize that on two lines? Furthermore, what happens when the teacher finds out she has this extensive history? Will they be intimidated? Will they treat her differently? Will they be afraid to have her in their classroom?

The truth is, her medical history is scary. She had open-heart surgery at 7 days old. She was diagnosed with DiGeorge syndrome (otherwise known as 22q11 deletion or VCFS) around 11 days old. She had a tracheotomy at 2 weeks old and feeding tube soon after. She qualified for in-home nursing. She was hospitalized at 7 months old for a flu-like illness, and watching a non-pediatric doctor try to place an IV in her tiny body was one of the worst things I have ever seen. Just shy of a year, she had trachea reconstructive surgery and decannulation (meaning the trach came out).

But that was not the magical end of everything. She has low calcium levels and, due to a compromised immune system, catches illnesses easier and has a harder time getting over them. She also has low muscle mass and has issues with clumsiness. This last part is not medical — I believe it’s just who she is. She has developmental delays that have led to weekly PT, OT and speech therapy appointments and has qualified for early childhood special education courses. Oh, and did I mention the sensory issues?

Sounds scary, right? But what her medical history doesn’t show is that she is the first one of her siblings to give her parents a hug every morning. She cries easily when hurt and feels bad for others when they are hurt. She tries so hard to learn concepts, and she does get there — it just takes her a little longer. She is a people-pleaser and gets upset when she feels she has failed in this. She will do almost anything for bubbles or a sticker (something her therapists know well). She is so excited to start school at her big brother’s school that she has brought it up at least once a week this whole summer. She loves being a big sister. But will all this be ignored because of her medical history?

Tonight, we will meet her teacher. I will most likely stay late to be sure she can meet her teacher. I will try to tell her all these amazing things about my daughter that cannot possibly fit on a form. I will try to stress the importance of her medical history without letting it overshadow who my daughter is — because she is not her medical history. I will walk out of that room and pray and hope and dream for a good school year for my baby girl… because isn’t that what all parents do?

Follow this journey on Life as a Mom.

JOIN THE CONVERSATION

Related to DiGeorge Syndrome (22q11.2 Deletion Syndrome)

To the Doctor Who Performed Open-Heart Surgery on My Baby Son

Dear Doctor, I didn’t want to meet you. In fact, I was angry on the two-and-a-half hour drive to your office. See, I was told the heart defect of my son, Anderson, would most likely not require open-heart surgery. Then, all of a sudden, it felt like a bomb went off and the explosion sent [...]

20-Year-Old Quadriplegic Woman Prepares to Summit Kilimanjaro

Chaeli Mycroft is looking to make history by becoming the first female quadriplegic to summit Mount Kilimanjaro in Tanzania, and she’s inviting the world along with her. Image courtesy of The Chaeli Campaign Mycroft, who was diagnosed with cerebral palsy at 11 months old, will begin her adventure on Thursday, August 27, according to CNN. The University of Cape [...]

Mom Outraged After GoFundMe Removes Photos of Her Son Deemed 'Graphic'

One mom is on a mission to have her son’s story told after a popular crowdfunding site removed photos of her him. Oakley, 4, has Prune-Belly syndrome, which is a rare disorder characterized by partial or complete absence of abdominal  muscles, failure of both testes to descend into the scrotum, and/or urinary tract malformations, according [...]

I’m an Adult on the Spectrum, so Please Stop Treating Me Like a Child

So many times I have been treated differently because people have heard the word autism associated with me. Sometimes people even treat me like they would a child — speaking in a soft, slow voice, or poking me over and over again or behaving in some other sort of way they never would with any [...]