Not everyone’s milestones are exactly the same.
When I graduated from High School my mom gave me a book. She wasn’t the first mom to do so, and she wont be the last. It’s sort of become a tradition, a standard gift to give a young lad or lass about to begin their journey into a sometimes dark and dangerous world. The book wasn’t about winning friends or influencing people, it wasn’t about making money, or achieving fame. It was a little book by Dr. Suess called “Oh the Places You’ll Go.”
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Loneliness. Fear. Guilt. Hope. Anxiety. Anger. Bitterness. Despair.
All of these are emotions a family goes through when trying to be an active part of a church family. It's even worse if they are coming in as visitors. Depending on the severity and type of the disability, the emotions are different.
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I've written a ton of emails, updates and blog posts about Brynna and how she has touched our lives; about how we've learned some great lessons; about how amazing she is. This one is different.
Tonight we took the little boys to see Wonder, a story of a boy with Treacher Collins Syndrome which causes major craniofacial deformities. As the parent of a child born with a serious and profound facial deformity, I fully expected to identify with this movie and with Auggie, the main character, which I did. I cried the whole movie, literally. Big, ugly crying sometimes. But not for the reasons I expected.
As it started, I cried in the opening scene, I won't spoil it for you, but we've done exactly what happened there. I recovered, and did ok until the story focused in Via, the big sister.
The point of the film that touched me the most was how it addressed the impact Auggie had on his sister. Suffer me a few minutes to indulge.
Tammy and I are very familiar with the impact the stares of others have on parents. Before her lip repair we've had people run up to the baby carrier in Wal-Mart only to recoil in horror. We've fielded awkward comments, condescension, and gawking. We forget that our other kids have endured it too.
It's true that the child with the needs is the sun, and everyone else are the planets. There have been so many times our kids have necessarily been served the leftovers of our time and attention, yet they march on like champs. We can't go to restaurants like others, jump in the car on a whim and do things, and let's not get started about how many nights they've spent with others while we've been in the hospital.
Then there was that time Austin got in a fight at school because a classmate made fun of her. Erika is far and away the best nurse we've ever had (and we've always had GREAT nurses). She's even taken Brynna on dates!
They can give meds, do tube feedings, and know when we need a break. They've never complained, ever. Seriously. They have embraced her differences and grown as a result. They love her, and love others better because of how she loves them.
Parents of special needs kids are often called superheroes. The real superheroes are their siblings. I love you guys, you rock. Here's my shout out to Austin, Erika, Eli, Shaun, and even the littles. I love you guys for loving Brynna the way you do.
I think the hardest part about Brynna's surgeries is the fact that we can't explain to her what is about to happen, why and what is going on afterwards. She will have no idea why she woke up happy, went back to sleep then woke up again feeling like a horse trampled her face and kicked her in the hip. She will have no idea why she can't eat a French fry for three months, but she will certainly be angry about that. She will have no idea that this is for her good, for her health and that it is really hard for us.While this is the hard part for us, it may be a blessing for her. You see, she will have no idea of what it means to have days of dread and fear. She knows something is going on, but she won't lay awake at night and wonder needlessly about how it will be. She will wake up unhappy and in pain, but every day will be better and every day will bring her that much closer to her beloved French fries.
The happy juice is almost here. Here we go again. She has no idea.
If you have children you remember the times. You know the ones, when they were little and everything was fun? Every experience was new. Snowflakes, raindrops, blanket forts, you know, milestones. The first time they took a step, when they started eating food for real, the first day of school, and birthday parties. These were good times.
When Brynna was born we weren’t sure about any of these things. Would she even live to see these milestones, to have all these experiences? Who knew. Life with Brynna is hard for sure. She is 7 now.
She has never run through the park, or really run at all. She doesn’t speak to us with words, but, like Dory, speaks fluent whale. She doesn’t really eat anything by mouth, except French fries, Doritos, and Cheddar Popcorn. Her med list looks like CVS exploded and she pokes me in my eye when I'm not paying attention. Sometimes we wake up to poop-ocalypse early in the morning.
However, for all the hardship and all the struggles, every single day seems like another milestone. Another chance to celebrate God’s goodness, mercy, and provision. She is 7 now.
Last May she began attending a special school near our home. A school built for kids like her. She is 7 now and last week she used the potty. (I still use the word potty because my wife teaches 3 and 4 year olds. It’s part of our vocabulary). She used the potty for the FIRST TIME! We were elated. Remember, she is 7 now.
She is 7 now and about a month ago she proved to us at parent’s day she could now match things; bowl to bowl, cup to cup. Every. Single. Time.
She is 7 now and is finally walking unassisted, most of the time.
She is 7 now and asks for popcorn using an iPad that has pictures on it.
She is 7 now and still sleeps like an infant, bottom hiked in the air and covers all over the place.
She is 7 now and cuddles with me every morning when I wake her up. She loves hugs, too.
She is 7 now and plays with her See ‘N Say for hours. Surely they can make these things silent, right?
For all the hardship and all the stress, we are privy to some unforeseen joy. We have set our shoulders for a lifetime of caring for an adult child … a real adult child. Not a child who has become an adult, but an adult-sized child, that’s different.
The unforeseen joy is this: when she is 25, who knows what advances she will have made? Who knows what she will be able to do? It is likely we will be blessed to have an adult child who still marvels at the Fresh Beat Band, who loves reruns of Blues Clues, who wants hugs every morning, who loves to spin in circles outside in the sun, and who continues to achieve milestones other people stop celebrating after a few years.
It will be hard, but will also be joyful.
She is 7 now and the good news is she may be 7 forever. God is good.