That was not how I envisioned my first week of motherhood going

Before we adopted our daughter Reagan, I remember asking my husband, “But what if she has special needs?” There was fear in my voice because I thought I couldn’t handle having a child with special needs. And in trying to calm my fears, he’d say, “All kids have special needs, Anne-Marie,” meaning that parenting is hard and children are needy to begin with.

To give you some background, our daughter Reagan was born with ten fingers, ten toes, and miraculously looked just like us. You’d never know from looking at her that her DNA had a serious problem. On day four of her life, we got a call from the state of Florida saying her newborn screening results were abnormal. She was believed to have a rare, metabolic genetic disorder called Glutaric Acidemia Type 1, or GA-1 for short. The woman on the phone kept saying: “I’m so sorry, I’m so sorry. Please, do not Google this.”

Wow, OK. That was not how I envisioned my first week of motherhood going.

After seeing a genetics specialist, they confirmed she had the disorder, but told us with a special diet, and us tracking every milligram of lysine (an amino acid found in every single food) that she put in her mouth, she could live a normal life. Oh and one more teeny tiny detail, we had to try not to let her get sick. Tall task, yes.

For thirteen months, Reagan never got sick, but in March of 2014, she got RSV and we were in the hospital for eight days. She had an NG tube to ensure she got all the nutrients needed to combat her sickness, as well as received enough calories so that her body’s genetic disorder wouldn’t work against her as she tried to recover. Remember our friend lysine above? When our bodies get sick, we break down protein and release amino acids. Lysine is toxic to our brain if it doesn’t move out of our bodies fast enough, and this is what her body needs help getting rid of.

After eight days in the hospital we were discharged, but two days later we were back for something much worse. Reagan collapsed into my arms after taking some of her very first steps on her own. We were admitted back to the hospital and within minutes of being in a room, she began to have seizures, three in total. An MRI revealed that her entire Basal Ganglia was damaged, this is the portion of the brain her genetic disorder targets, it’s also the part of the brain that controls movement. Every milestone she had was lost. Our typically developing child was now fighting for her life and fighting to regain those milestones from scratch. Reagan came home with a G-tube, low muscle tone, and the inability to hold her head up or control her movements. Her body flailed uncontrollably and if she was in our lap, it was common to get a whack to the head by a rogue arm flail.

We cried a lot of tears. And if you’re a special needs parent, please hear this: It is normal to cry over a diagnosis. The dreams you’ve had for decades, have had to do a life shift. But also hear this: You can do this, and you will dream for your child again. You may not be in that place now; it took my husband and I almost a year and a half to get there. We still have our days, like any parent, but with God’s help we are doing this special needs parenting thing. The thing I was most afraid to do in life, we are doing it, and rocking it quite frankly.

What I learned from all the time in the hospital, and a lot of reflection, is that anyone of us is just one hospital visit away from having a special needs child. I don’t say that to scare you, I say it to help you empathize, so that when you see a special needs family out and about you can engage them. I used to see parents with special needs kids and think, “Oh man, that stinks, that must be so hard” and go on my way. But now, I try not to see the “special need” but the child. A great way to interact would be to start by asking the child’s name and asking the parent to tell you about them. People are often too scared to approach a special needs family. I’d understand that if you saw me working the floor at a hospital (mamma bear here), but not at the mall. I’m shopping like you with my uncontrollable, tantrum prone, strong willed toddler. I’m just trying to make it, like you. You get it, because you’re a mom, we have that in common.

What I’d like to tell other moms is we want to be included too, even though our kids are different. I want you to teach your child that all children matter, and that even though my daughter walks funny now, the fact that she walks, on her own, is a total miracle from God. If you asked me to tell you about Reagan, I’d tell you she had a traumatic brain injury when she was 13 months old and that the doctors told us she would never walk or do anything in life, so what you are witnessing is a walking miracle!! How often do you see that? #daymade

I’m hoping that by sharing our story, when you see a child with special needs, you can have compassion, and realize we’re just trying to make it as a family, like you are. The biggest difference is we are fighting for typical milestones as often as we fight hospitals and insurance companies. We fit blood draws and therapy appointments in between preschool and having a date. We want to feel included in this world, we want our children to make friends and do great things. We are part of the special needs community, but we also want our kids to be accepted amongst all of their peers with open arms.