Just Be Honest

Blame it on the heat, but all I want to do these days is stay inside, put my jammies on early and snuggle with my little babe. You know you’re getting old when you are excited to have nothing to do on a Friday night except hang with your kid. Too bad it’s just after seven and my date for the evening is already asleep. Sadly…I’m probably not too far behind her!

We’ve had a good week and Lola is amazing us each and every day. She had two fantastic reports from her therapists this week where both commented on how much her hand use has improved and how attentive she was during her sessions. The days of needing continuous input through practices such as bouncing have all but diminished. Her stamina has boosted and she genuinely seems to enjoy her therapy sessions these days. She’s growing up right before our very eyes and we couldn’t be prouder.

We decided to venture out on the Fourth of July to attend a friends party. It felt good to get out of the house and actually socialize with adults although I think my best conversations are made up of words like “dada” and “baba”. We ate good food, had a summery cocktail and met some new people. Lola was particularly intrigued by the air conditioning vent and really who could blame her? It was over 100 degrees outside!

Even the dog had to see what all the excitement was about!

You know it’s interesting when you are in an intimate, yet semi-informal setting and not everyone knows about Lola. Some of the first people we met was a couple with an 11 month old little boy. The conversation began with introductions and surface questions about how old is your kid and what’s his name. She then asked if Lola talked. No. Does she walk? No. Oh. Then you see the hungry eyes looking at Lola, at me, at Rob almost begging for one of us to speak up and say why Lola’s not walking or talking. I hesitated thinking back to my “does it matter” post, but decided to just explain about Lola’s seizure disorder, her developmental delay, the CVI and much more in-between. I felt almost relieved as I shared our story because I didn’t want anyone simply thinking “what’s wrong with her?”. Even though in our eyes nothing is wrong with Lola because it’s just who she is (plus I don’t mind carrying her everywhere!). She’s delayed but that doesn’t make who she is. She’s so much more. So in telling a stranger the whys behind their questions hopefully helps them see beyond the delays as well. Later I spoke with Rob about this and his solution was “just be honest”. I was and I always will be. People don’t know any better. They expect when a kid is 18 months old, they are generally walking and talking and that’s OK. Not everyone lives in this exclusive special needs life (one I am quite proud of) so shedding light on a disorder can be not only beneficial for them, but even a bit therapeutic for me. We’ve helped a lot of people along the way and sharing Lola’s story continues to support our goal to raise awareness about Lola’s conditions. And while all of this jabbering was going on, Lola decided maybe she would give pulling up a try (or at least pulling to a good squat!).


I told her Uncle Seth to make her smile so he quickly threw her up in the air and we managed to capture this shot. She sure LOVES Uncle Seth!!

One dangerous aspect of this heat is the potential for Lola to have seizures. We were in Costa Rica last October when Lola had a small cluster of seizures due to the heat. Since then, we take extreme precautions in an effort to make sure Lola is never too hot. If your kiddo suffers from a seizure disorder you may want to consider the following:

– The less clothes the better.
– Always start your car prior to your child getting in to get it cooled down with A/C.
– Make sure the child stays hydrated.
– Try to only attend functions, stores or restaurants with A/C.
– Keep the skin lathered with sunscreen even for brief outings.
– Hats are great but they can hold in heat from the head. Be aware of your child’s sweating patterns before you put a hat on them.
– If you take your child for walks, try to do it in the morning or evening. The sun is too hot midday for our kiddos.
– If you have a girl, put her hair up!

These are just a few tips we live by during the summer months. Children tend to run a few degrees warmer than adults so try to remember this next time you are hot!

Stay cool everyone!