Unwanted reminder

As a parent of a “failure to thrive” child, weight checks are not my favorite thing. The scale taunts me as if it is the measure of how successful I am at caring for my son. It reminds me of how far we have to go. It has the ability to completely crush me. A tiny scale has the possibility of sending me home from an appointment in tears.

 
At our last appointment the nurse asked if we could get a weight check as I wheeled him to the exam room. “Yes, as soon as I undress him” was my response. His pediatrician would like very accurate weight checks so I must still undress him and lay him on the too small scale. The nurse responded as she flipped through his chart, “he’s 2 years 4 months, he can just stand at the scale in his clothes.” Insert eyes welling up with tears here. I told her “no, he can’t.” I wanted to thank her kindly for the reminder that my son does not stand. Thank you for reminding me that yes he’s over 2 years old, and he should be able to hop up on the scale with a grin to see how big he is and receive an Elmo sticker for being such a good listener. I laid him on the baby scale and she said “he can’t sit?” Keep it together. Deep breaths. Oh, thank you again for reminding me that he can’t sit either. Wow. This nurse was on a roll. I couldn’t look at her as my body warmed up from hurt and anger. I looked at my little boy crying, trying to squeeze on the infant scale and wanted to take him and leave. At this moment I didn’t care so much that the scale said 20 pounds; the average weight of a twelve month old.

 
Yes, I was disappointed at the scale but this time I was more crushed at the insensitive remarks by a medical professional. I wish she would have taken an extra minute or two to read his chart. I wish she would have had us wait a minute longer in the quiet waiting room to avoid me driving home in tears. I wish she could have jumped for joy at the scale because he actually had a gain of a few ounces. I wish she would have realized that her comments were hurtful. I don’t need a reminder that my child is 2 years 4 months and he’s behind. Far behind. I know this. Most days I choose to celebrate where he’s at and not where he should be. I choose to see him for him, but this day she reminded me of who he “could” be had he been born with different genes.

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I don’t know if these comments will always upset me. I don’t know if there’ll come a day when I don’t cry after an insensitive remark about my son. Will my skin just get thicker? Will I just blow these comments off? Will I just check them off on the list of “stupid things people say?” I don’t know, but I do know that I’m human and he’s my baby, and next time I will say something instead of silently hurting.

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He knows

“God only gives you what you can handle.”

People often say this when they don’t know what else to say. As a mom of a complex child this phrase has been uttered to me many times with a gentle smile. At first you want to believe that God hand-picked you for a rewarding task. God believes in ME more than he believes in you, which must be the case since you don’t have a medically fragile child. You were not chosen to live this life. This life of inescapable worry, beeping machines, and constant therapy. Tears in the car after an appointment, sobbing until snot runs down your face in the shower after a bad day, and grief over the child you dreamed of.

In the beginning when it seemed that we were drowning in appointments and uncovering new “gifts” that our son’s diagnosis handed us each day, I kept thinking just exactly who does God think I am?? He must not really think Johnny’s mom can “handle” this kind of stuff because they haven’t been given what we have. There were days I wanted to shake my fist and yell ARE YOU DONE YET?! One thing after another. Really God? Are you done? I’m not standing here indestructible wearing a cape; I am standing here with shaking knees swimming in uncertainty.

Then something happens. You can handle it. You DO handle it. You wake up. You show up. You go to appointment after appointment and run in the longest marathon of your life. You incorporate therapy into everyday play. You adapt your house to where your child has an environment where they will thrive. You find JOY. Expectations are thrown out the window and celebrations happen daily. Now don’t get me wrong, we aren’t all smiles at our house, there are still plenty of tears and occasional urges to kick the door. But more than anything, we are thankful. We are the lucky ones.

Today we are handling it, whether God gave it to us on purpose or not. Today. Tomorrow. We will wake up and show up. We will do what we have to do, shaking knees and all. Our grief may be greater but so are our joys. The other day I almost couldn’t contain my tears when his physical therapist said he purposefully reached his hand into a jar to grab out a toy. I simply can’t explain the feeling of pride and joy. Imagine crying simply because your child has the ability to hold an object. Sounds so simple but for him it’s not. Our son has altered our perspective. He is making us into a better family.

I don’t know if God really only gives you things He knows you can handle. I don’t know if He has a measuring tape and hands out challenge after challenge based on your measurement of strength? I don’t know if He saw something in us. I don’t know if that phrase is true, but I do know that when our son looks at us he sees our strength. He sees that we will never give up. He sees the love in our eyes. He knows. Whether God chose us or not, our son knows.


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Traffic

Raising a child with special needs is a lot like being stuck in traffic.

You’re driving along and then all of a sudden you see the brake lights illuminate on the cars in front of you. Then you slow to a stop. This is not what I planned for at all. I’m not prepared for this. I thought I did everything right and left the house with ample time but I guess not, and to be honest, I’m angry. I start to feel anxious and wonder when we’ll start moving again. I worry about being late to my destination. I try to look ahead to determine what the holdup is, but I can’t see past the truck in front of me. Great, absolutely NO IDEA what is up ahead or how long this will take. I keep seeing the minutes get added to my estimated arrival time on my GPS. I’m frustrated, worried, anxious, angry, and there is nothing I can do to make this traffic move along any faster.

I’m so angry at something I have absolutely no control over. My air conditioning isn’t working and of course it’s a sweltering 85 degrees and sunny with barely a breeze. We roll the windows down and try to cool off. My shirt is wet with sweat and I’m stuck. I can’t turn around. I can’t do anything but inch forward. I look over at the cars moving swiftly in the other direction. I’m so jealous; so jealous that they are driving along without a worry. For fleeting moments I wish I was them.

As I sat in this traffic I realized that those feelings are exactly what it felt like when we received our diagnosis. I felt stuck. Sweaty, anxious, worried, and angry. I had no idea what was up ahead of us and I had no options to turn around. As time went on in the traffic jam I started to relax. I notice the beautiful architecture and the shapes of the buildings. The wildflowers in the ditch are absolutely breathtaking. Even the sun beating down on me makes me close my eyes and thank God for this moment. I turn the radio up a little louder and sing along. I catch the eye of the driver next to me and we just laugh as I was caught singing karaoke in my car.

So, I slowly inch towards my destination. I know I’ll arrive…eventually. Raising a child with special needs will have a lot of road blocks and unexpected traffic, but we’ll get there when we get there. We will find beauty and joy. Arriving at our destinations may be much slower with added anger, frustration, and worry, but there will also be tremendous happiness upon our arrival. I still glance over at the cars moving in the other direction, but I realize that their destinations are not mine. They are not going where I’m going.

It’s not always going to be bad traffic, and it’s not always going to be smooth sailing. One thing I have learned is that you must keep going. Whether it is inches or miles. Just keep going.

 

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