Raising a child with special needs is one of the most difficult realities that I have ever faced. The future is daunting, the days are often gloomy, the inchstone moments are frequently fleeting… But, this post is not intended to be like Eeyore, so I will move on. Most days though, I do choose joy and look for the smallest miracles in the most unexpected places. Today’s example was just this morning. We have transitioned our “toddler” into her big girl car seat and have been learning a new routine. Getting a non-mobile child in and out of a car seat with no assistance can be a difficult task. She doesn’t climb in, she doesn’t adjust her legs, she doesn’t help buckle (or unbuckle for that matter) the chest or hip clips..you get the point. But today, in front of Grandma Cheryl‘s house I asked Alexandra to “help mama, raise your arms….” and whad’ya know? The little critter RAISED HER ARMS SO HIGH! Boom! Straight up in the air! It was the first time she actually did it with determination! Sure, she’s helped us before by moving her elbows away from her sides, but nothing like what she did today. It was beautiful.
My mind knows full well the challenges that are in store for us. It has learned of the uphill battle our baby girl will face. It understands the daunting medical journal reports about Pitt Hopkins Syndrome and how desperately she needs a cure. It knows her life will be a special journey, taking a path a bit different than that of her peers. But I choose to follow my heart, as my heart will take a lot longer to accept this unexpected life. It will battle obstacles and ride an emotional roller coaster that eventually will lead to only making it stronger. It will beat harder for my baby, fuel my passion to be an advocate and fight for what is right in this world.
“No one else will ever know the strength of my love for you. After all, you’re the only one who knows what my heart sounds like from the inside.”