What My Daughter’s Disorder Should Know About Her Biggest Cheerleaders

Dear Cornelia de Lange Syndrome,

I will never forget the day we first met. Before September 5, 2014, I never even knew that you existed… that is, until you made your presence known within my sweet, new baby girl. You chose her. And you know what? I’m glad you did.

You see, when you chose my beautiful Maya, you failed to evaluate the entire scenario before jumping into her.

You completely underestimated me as her mama. You had no idea that I would run to the ends of the earth for my girl if that is what she needs. You had no clue the immense love I have for her which empowers me daily to fuel Maya into being the best that she can be.

Maybe you thought I wouldn’t be able to handle what you had in store for her? Well let it be known that I can and I will always be there, cheering her on and holding her hand, as long as I believe that God grants me breath.

You did not meet her daddy first, who loves his girls more than life itself. So each and every day, our Maya is covered in love, kisses and hugs, and wrapped in the strongest arms possible.

You failed to get to know the immediate circle of people Maya has in her life. You must have not known how much they would love her and treat her as their very own daughter, ensuring her the best physicians and therapists to learn more about you each and every day that they can.

You should never mess with a big sis, either — I know that from personal experience. Instead, her big sis, Mallory, has become her mother hen and will set anyone straight that may make fun of any characteristics you gave my Maya. But better than that? You chose a little girl with a big sis who talks to God quite often. Our Maya is showered in prayers constantly, especially from her Mallory.

I must thank you. Growing up, I always wanted to be a nurse. Although I have no degree to adorn my walls, you have enabled me to become one for my Maya. You have given me the opportunity to be a self-taught, full-time nurse, speech therapist, OT, PT, nutritionist and a stay-at-home mommy for her first seven months of her life. So thank you. You’ve given me the opportunity to become more than I ever thought I could be.

It wasn’t always this easy to say thank you to you. The constant fear and worry you introduced me to felt so unfair. The amount of sleepless nights that I experienced in the last seven months have most certainly taken their toll. And those still continue as I lie awake wondering about her future and all of the unknowns.

I have constant fears about Cornelia de Lange restricting children’s abilities to learn, eat and speak. Some children don’t have children’s fingers, hands and arms because of Cornelia de Lange syndrome. That did not happen to Maya, but Maya does need help feeding and controlling her GERD. But remember when I said I’d do anything for her? I did. And thankfully, she’s grown so much and done so well since her G tube was placed.

I still find my heart aching every day for her. I still cry enough to create an ocean. But I’m comforted in believing that God is bottling my every tear.

But I actually owe you a tremendous thanks on behalf of all the mamas with little ones whom you’ve touched. I truly believe that special children will always have a place in the Kingdom of God. So I believe that means no worries for us mamas and that they will be in Heaven some day!

You almost broke my heart, Cornelia de Lange syndrome. But… you’re just not strong enough.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.