It's Time...

Tonight, I laid in my hotel room snuggled up with the oldest two of my children and their Daddy. The youngest two were beyond out for the night, and so it was just the glow of the hotel television and us. We don't usually let our children stay up late. I'm one of those moms that is a stickler for a bedtime routine- not always sure if it's because it makes their lives easier or mine the next day. :-) I'd call it a mix, if I'm honest. Tonight, though, we were waiting for 20/20 to come on. Yes, if you know our family, my oldest two are 9 and 6, so why 20/20?

At the beginning of third grade, our daughter read the book "Wonder" by R.J. Palacio. She immediately fell in love with it, and a year and a half later, I cannot tell you how many times she has read it fully. The movie version of this book came out tonight, and on 20/20 there was a story entitled "Wonder Boy" about a family who had a son born with craniofacial differences...much like the main character of the book. We'd seen a commercial for this special earlier in the week, and I'd promised her if we weren't still on the road for our Thanksgiving travels, we would try to watch it. Well, we were able to.

As we listened to the story of Nathaniel, our children began asking us some hard questions about our youngest son- who is diagnosed with cerebral palsy and a myriad of other things. Most of these questions had to do with how people would treat their little brother as he got older. Did we think that people might be mean to him or stare at him as he grew? Hard question, but as has been our policy with our children, honesty matters....and so, we gently answered with, "I sure hope not, but it is possible that as he grows, people may treat him differently." My daughter was quiet and said, "Momma, they already do sometimes." I asked her to explain, and she'd already picked up on things that I wasn't sure my children noticed when we interacted with others....and honestly, I hoped they hadn't.

For people who know our story and know that our littlest has special needs, the introduction to him isn't usually too painful. They've been prepared- even if only a small amount. For people who don't know us or our son, for the stranger at the restaurant or the grocery store or anywhere really, they look at our son and see his smile first usually, but then that's followed with noticing his DAFO's (Dynamic Ankle Foot Orthoses) on his legs, the shunt on his head, and if they come close enough to rub his head (which seems to be a natural instinct lately among people), they'll quickly feel that shunt and the less than round portions on the back of his head, and as they talk to him, he won't talk back to them. It's usually at this point that you watch their face change and either they quickly excuse themselves from talking to you, or they'll ask how old he is. Honestly, it's the how old is he question that usually gets the most silent reaction and then awkwardness ensues, and they generally end the conversation and walk away as quickly as possible. That last part- that's what my daughter had picked up on- the silent reactions to my son's age. If I'm honest, on the hard days, I wish I could lie. I wish I could say- oh, he's 18 months or stretch it to 2 years old...not that he's 4. I don't feel like it's out of selfishness on my part...maybe it is, but really, I just want them to continue to interact with my amazing son and love on him because he's perfect, a miracle, and he's mine...and he deserves to be treated just like any other child.

The next questions came as the little boy, Nathaniel, in the special endured another surgery and had endured a huge number previously. My six-year-old son asked me if his little brother would have to "have any surgery ever." My husband squeezed my hand, and although we haven't faced this yet, we both know the answer is a resounding most probably....yes. Whether it's on his legs, hips, or feet- as is very common for children with cerebral palsy as they grow, or it's a cranial surgery as he continues to grow and his head doesn't 'give' or there are ever issues with his shunt, etc.

Y'all, we made it through that special with no tears and good conversations with our kids, but when they were fast asleep and the lights went out, this Momma cried. There is so much about our son's life that I don't see on a daily basis. I see my beautiful, happy, smiley little boy that is a true MIRACLE in my eyes. I see all the amazing progress that he's made since we brought him home a year and half ago. I see all the things he CAN do. I see the joy he's brought into our home- the lessons he's taught all of us- the compassion that has grown in my children's hearts for other children with any sort of 'difference' around them. BUT then there are times when life gives me the reality of his conditions, the hard spots, the unknowns, and the things I don't see when I look at him. Will he be treated unkindly as he grows up? Oh, my heart wants to say no, but the reality is yes. Why? Because people fear that which they do not understand. Will he endure more pain and more procedures as he grows? Yes. This is factual, and my heart knows it. Will he ever walk, talk in complete sentences, grow to be the size of his peers? I have no earthly idea- truly. I get the reminders of the deficits every time we have an IEP meeting or a new round of doctors comes in or when we go for a well-check and I have to check no in every single box for his age....I hate those little pieces of paper.

In our home- he's our son and I see him as my son. When we're not home- he's still my son, but the world doesn't see him like they do my other children, and my heart breaks about that. He doesn't have a severe craniofacial difference like Nathaniel in 20/20 or the main character in "Wonder," but the differences are still seen and the gap seems to widen between him and the world...and I know that as his peers grow and change much more quickly that he will...it may widen between him and them. It hurts. I don't talk about it a lot, but it hurts every single time that gap is thrown in my face.

I couldn't just go to sleep. I write when I can't sleep. It's how I process big emotions, and so here I am, sitting in the bathroom floor of a hotel room in El Paso, Texas while my family sleeps....creating this blog and typing my ramblings. I decided that between my life as a military spouse, as a mom to four, an "adoptive" mom, a 'trauma' mom, a mom to a child with special needs.....as I live my life navigating what my life is, the labels given to me, and who I am amongst all of that...I'm going to share it...the good the bad and the ugly. My hope though, is that in all of the good, bad, ugly, hard, and honest....you see that He...my God...makes beautiful things...and I am His.

Please listen to this song. I hadn't heard it until a couple of weeks ago in our church...and it has spoken to my heart so deeply... On a personal level of what God has done and is doing in my life, in the life of my family, in the life of our youngest two who came from a hard life of abuse and neglect before becoming a part of our forever family, and in the life of my youngest son. God takes all the hard, and He makes it beautiful. You Make Beautiful Things Music Video

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