At the park

I had an experience at the park recently where I didn’t share. Yep, you heard me right.

This felt so foreign to me as I am always reminding our 6 year old to take turns and share. I tell him that others need to use the equipment too and to step out of the way if someone needs to get by. Usually we talk about the “park rules” on our way there so they are fresh in his mind.

As he ran off to play with a friend I wheeled Christopher over to the adapted swing. Or as I heard one mom call it “the lazy swing.” Ooookaaay. That right there was enough to get my blood boiling. But that’s a different day. I hoisted him out of his stroller and propped him in the swing. I situated his feeding pump backpack to where I could comfortably push him and nothing would be in the way. He’ll never stay sitting up since he’s still small for the swing so he likes to lounge sideways and enjoy his time being pushed. After about 5 minutes on the swing I overheard a mom and a child talking about wanting the swing. The mom told the child to come and ask me when we would be finished.

Now this is where I could have answered differently, but I didn’t. I replied I don’t know when we’ll be done, since this is the only piece of equipment at the park he can use.

I received a strange look from the mother and they reluctantly walked over to the other open swings. Just so you are aware, every single other swing was open. Even the ones that require 5 arms to get your child out of since their feet get stuck in the leg holes. We were the only ones swinging and they wanted the swing we were on.

Now I am not sure what the look she gave me meant. Was it a look of discomfort? A look of confusion? I don’t know what she was thinking when she heard my honest reply. I wasn’t sharing the swing anytime very soon and I didn’t feel bad about it. There is adaptive equipment at the park for a reason. Now, if another child was there who needed the swing I most definitely would have given it up much sooner.

I cannot tell you how often I have to wait for the adapted swing at the park because an adult is sitting in it. I have waited nearly half of our park time for him to use the swing as an adult sat in it talking on her cell phone. (I didn’t interrupt her to ask for the swing..so that is my fault we waited so long.)

I actually couldn’t believe my response at the park the other day! Normally I’m a people pleaser and want everyone to be happy, but at that moment the only person’s happiness that mattered to me was Christopher’s. He can’t squeal down the slide or run on the wobbly bridge. He can’t climb the rock wall or sneak through the long wavy tube. He was so content in the swing and enjoying the park that I didn’t want it to end for him.

I really wasn’t trying to be a jerk, but I’m not sharing the swing.

 

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The thief of joy

I vividly remember a conversation I had with a friend when our son started physical therapy. He was 5 months old and still very much an infant. He couldn’t reach his arms to grasp a toy and no matter what we did he couldn’t hold his head up. I recall telling her that at his age he wasn’t too far behind and if we closed the gap early it would all be okay. Comparing him to his peers he wasn’t that too far off. At this point in his life we had no primary diagnosis, only “developmentally delayed.”

I would look at milestone charts and see where he should be. I would quickly google “what should my 5 month old be doing?” I would compare to his big brother or whomever else had a baby his age. If there was an exercise on the internet to increase neck strength you better believe I did it. As each month went by I did the same thing. I held the checklist in my hands at his well-baby check ups and I would sob. Not one. I could never check off a single thing on those lists. I still can’t. Heartbreak after heartbreak. Comparison after comparison. I wanted so badly for him to catch up.

The gap between him and his peers has progressively gotten wider. It has taken him 3 years to get to the same place a 5 month old is at. Three years of extreme hard work and dedication. Three years of immeasurable tears. He is one of the hardest working kids I know; he’d be the only one if I didn’t know other children with CDG. These kids have to work for     e v e r y t h i n g.  Giving up is not an option. I am in awe of our son and other children affected by congenital disorder of glycosylation. I can honestly say I have never worked as hard as these kids do to achieve a goal.

As I thought about the conversation with my friend I realized that the game of catch up is over. I’m done. No milestone charts for me. I’m finished comparing. I honestly couldn’t tell you what a typical 3 year old is doing because that no longer matters to me. The only thing that matters is him and who he is. It goes without saying that we will never give up. We will keep pushing forward trying to achieve more, but checking off “the list” isn’t on my list anymore. I simply want him to thrive.

Instead of focusing on how far he has to go I’m focusing on how far he has come.

Instead of sobbing at the check lists at his check ups I’m bringing my own list filled with what he CAN do.

Instead of googling milestones I’m celebrating progress.

He will continue to work harder than anyone I know. For. Every. Little. Thing.  And because of that, I can’t compare him. There is no comparison.

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Control

I’m going to admit something that isn’t particularly flattering.

I’m controlling. Especially with our youngest son.

I’m doing it all.

Please don’t roll your eyes or stop reading and think I’m turning my nose up in an I’m-better-than-you sort of way.

It is far from that.

Every morning I wake up and immediately care for him after a night of interrupted sleep. I’ve been up multiple times from the beep of his feeding pump and occasional need to be rocked at 3am. I get out of bed, lift him from his crib, and head to the kitchen to get his medications ready. We laugh and giggle as I carry him down the stairs. I kiss his neck and breathe his sweet scent in. Then I feel his skin and realize he feels a bit warm. Quickly I take his temperature and say a short prayer to the heavens to keep illness at bay. All I can think of is a recent Facebook post about another child with the same disorder who out of the blue became lethargic, seized, and then was intubated and in the hospital for days. I can’t help but recall his last 11 day hospitalization from a cold. I picture the sweet faces of CDG children that I came to love and lost over the years. Lately, all of this goes through my mind. Multiple times a day.

After taking his temperature, realizing it’s not a true fever, we are ready to head off to our usual therapy appointment. His temperature fluctuation is likely his body just being his body. We greet his therapist with a smile and tell her all about what we’ve been working on over the weekend and soon he’s off to “play” while I sneak into the observation room. While he’s in therapy I call a clinic about an insurance issue, leave a message for his social worker, and email about fundraising. I check a few things off of our list and in the process recall a few more items that need immediate attention.

The day goes on. I’m in control. I know what is happening, when it’s happening, and I’m making it happen. We hug and kiss too many times to count. There’s more therapy, more tears, and definitely more kisses.

Congenital disorder of glycosylation is extremely unpredictable. The unthinkable happens to our kids. Our son contracted a staph infection in his blood and his wound from a routine surgery when he was six months old. His surgeon said she went over and over his surgery in her mind because “that shouldn’t have happened.” But it did. It happened and the things that “don’t happen” DO. We know this. We’ve experienced this.

His disorder has no certainties. If there is anything that is certain it is that surprises lurk around every corner. I have zero control over what happens.

I am simply trying to hold onto any small spec of predictability. I am clinging to anything that I pray to God won’t all of a sudden turn into something it wasn’t. I am doing everything in my power to make sure my son is safe, healthy, and alive. I will do everything I possibly can to ensure he gets what he needs. I know it sounds dramatic, but it’s real. It’s my real life.

We live a life where the possibility of losing our child is very real. As much as I try to stuff it away, it never really leaves me. The reality is always there, haunting me.

I am controlling.

I am doing it all.

I’m not doing it all because I think I can. I’m not doing it all because my way is simply the best. To be honest, I’m doing it all because I’m terrified that if I stop and I lose him I will never forgive myself.

I will want it all back. I will want one more bedtime story. I will beg for him to wake me in the middle of the night for snuggles in the rocking chair. 3am, 4am, 5am, I will want those precious minutes back.  I will be shaking my fist at the heavens pleading for a few more kisses. I will crave the feeling of his soft warm skin on mine. I will want nothing more than to turn back time.

So, yes, I’m doing it all. Not because I can, but because my heart knows no other way. 

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