Sometimes I forget that we have a child that has special needs, and to say that outloud even feels weird. The way I look at her is so different than an outsider looks at her. It’s normal for me to have a child that doesn’t walk, that hates rolling over and who gets chemotherapy. The reality is, we don’t know anything different. We don’t know what having a “normal” child is because, Brooklyn IS normal to us.
It’s hard as a parent not to have pride in everything your child does. The first time she said “mama” or the first time she said “up,”you would have thought she won a gold medal the way we cheered for Brooklyn. Watching her “helpie” hand move more and more as it relaxes on her tray at meal times or how she swats Ben out of the way with it when she’s mad is truly an exciting day at our house. We never thought she would even be able to say anything, let alone “mama”, “baba” and “up” due to the fact that she does not have a left temporal lobe.
Watching Brooklyn’s development is incredible. For everything she has going on, she is amazing. I talked a lot about the comparison game in a previous post and I notice that I’m comparing less and less. Brooklyn had three brain surgeries, THREE. Shes had two surgeries to insert medical devices to deliver her chemo. That’s FIVE surgeries, and countless MRI’s, chemotherapy and oral meds. She used to get two shots a day every day for four months, and that was torture for her and us because we had to give her those shots.
As a parent of a child with special needs- I have noticed we get looks when people ask how Brooklyn is doing, and our answer is “Good.” The looks that come with that are often of surprise, but thinking of how else we are supposed to respond always stumps me. Yes, Brooklyn gets chemo- often I might add- but literally, for the stuff she has going on, she’s doing well!! She picks up her own food and feeds herself. She is learning to drink out of an open cup, and can feed herself with her baby utensils. She is learning to sit unassisted, although we’ve had quite the time teaching her that she needs to stick her helpie hand out to catch herself. Brooklyn knows how to take her blocks out of the bucket and she knows how to put them back in. She knows how to take wipes out of the container and give them to me. Brooklyn also knows some baby sign language, like “milk”, “all done”, and “more”. She is also learning how to give high-fives, and she knows how to give kisses and who she wants to give them to. So yes she is doing well.
Comments have been made about Brooklyn’s size and it bothers me. “Why Megan?” You might ask. Well let me tell ya. Kids are like popcorn kernels. All of the kernels pop at different rates. If this isn’t the best description of why you shouldn’t compare kids… I don’t know what is. Comments have been made about her weight and they bother me because it’s comparing apples to oranges. Every kid is different and not everyone is fighting the same battles. As long as our oncologist, and nurse practitioner are happy with where she is given her situation, theres no need for anyone else to be concerned with her weight. I mean, do you walk around asking adults what they weigh?? Everyone is dealing with something so be kind, be supportive and just listen with joy.
I get asked how Brooklyn handles the chemo and some get surprised when I say she handles some of it well and one big cycle makes her very sick. The side effects of the chemo include, but aren’t limited to: nausea and vomiting, decreased appetite, constipation, diarrhea, and the list goes on. Chemo for kids may not look the same as it does for adults but she does indeed suffer some of these side effects. The chemo also tanks her counts- meaning that her ANC or immune system can be non existent, her platelet count drops and her hemoglobin decreases, causing her to need a blood transfusion at times. Cancer SUCKS.
When it comes down to it, we are so very blessed and thankful that she is with us ,that she is chatting and laughing, and continuing to learn. When the sun comes up I am blessed enough to wake up with joy in my heart, a tiny arm across my chest and a toothy grin in sight. The days can be long but the joy this tiny human brings priceless. Even when she’s not feeling 100%, she still manages a smile and an open mouth kiss.
Fearfully and Wonderfully Brave 