We survived several appointments this week, in addition to Brady’s regular scheduled therapies 1 to 2 times per day.
Honestly just the thought of a doctor’s appointment makes me tired because it’s like packing up for a newborn every time we leave the house.
Even though he is seven years old, we still need diapers and wipes and changes of clothes and bibs and food and the water pump and water and emergency meds and the list goes on… So just leaving the house seems like a production. And that’s not to complain, it’s just a reality for most parents of kids with special needs.
So many things have gotten easier over the years. Brady is much more medically stable now and there are much fewer trips to the hospital. Some of this is attributed to having nursing help at home or just knowing his signs and symptoms better. Some may be attributed to our regular routine that we have become much more efficient with. Emotionally speaking, some things get much more difficult.
For example, when Brady was a baby or toddler, at first glance, he didn’t seem to have visible abnormalities. I could push him around in a store and everyone would smile at him. Kids would point to the baby and smile, no big deal. Now as a young boy, I see the stares and wondering of why this kid is being pushed around in a stroller instead of walking. I hear the kids asking questions or staring at the drool as Brady chews on his chewy tube or toy.
At one point I started taking his wheel chair shopping, just so others would immediately know he has special needs, in hopes to reduce the long stares.
But that chair is heavy, especially if you are loading and unloading multiple times, so now I just deal with the stares.
The fact is, the world needs to see more kids like Brady out and about, but the time and energy it takes to pack up just to go to the park, keeps us away from a lot of events, retail shops or even the grocery store. He definitely helps me save money though. There is no impulse shopping because when Brady is with me, he does not like his stroller to stop. We are always on a mission to grab and go. Not to mention, most public bathrooms do not have a large enough changing table for Brady. I’m so thankful for our van. We have a mat in the back to change Brady on… another reason we get stares in public, but poop happens and when it does, you need ample space to change your child.
Kid’s birthday parties are also a challenge. We don’t get invited often anymore, which is ok, because it is really just awkward at times when we do go. We end up in the corner, putting Brady on a mat to roll around on, talking to ourselves. When Brady was a baby, I could still hang out with the parents and we had things in common. Most boys Brady’s age now are trying sports or doing other boy things that I really have no clue about. (I have 3 sisters, so I didn’t even grow up with boys.) So I can’t even relate to the conversations. If you start talking about Medicaid, or therapy, or the brain, or seizures, I can talk for hours. And cake is not part of the Keto diet, so he can’t even take part in one of the best parts. Of course, I am always happy to eat his piece. I wouldn’t want it to go to waste.
Some days it doesn’t bother me. Other days, depending on my emotional state at the time and usually how much sleep I have had, I want to yell, “It isn’t fair!” or “Stop staring!”
I can’t say I would be any different if roles were reversed. Generally, I believe people are not trying to offend you. Some just don’t know how to respond. I know the staring does not come from a judgmental perspective most of the time, but curiosity. Maybe even sympathy. But the truth is, I don’t want sympathy and I don’t want my child to ever feel the stares or even feel different. As a mom, I want to protect him from any unkind look or hurtful word ever spoken about him. However, he is different. We all are, but some differences are more visible than others. In any case, Brady is a true testament to God’s love and grace and deserves to be shared with the world. Every stare is just an opportunity to share God’s handiwork with someone else. Lord, help me remember that on the tough days!
I also need a constant reminder that God never promised this world would be easy. In fact, He said in this world we would have trouble (John 16:33). But He gave us the hope of heaven. And on my tough days, I have to remember, others need grace too. Just like most don’t understand what it’s like to parent a child with special needs, I don’t understand what they are going through in this moment. That stare could be that Brady reminds them of another child they loved or lost, or maybe they have dreamt for so long of having a child, any child, that their heart hurts too. Maybe they are just so tired from life, they don’t even realize they are staring. Most aren’t trying to offend, they are just trying to get through their day.