Dear Me- Your Prayers Have Been Answered

 

 

Dear Mama,

 

You prayed that he'd be healthy. You prayed that he'd be a happy, inquisitive, adventurous little boy who loved being outdoors, learning, reading books, meeting people and animals, and music. You prayed that he'd be compassionate, loving and kind. You prayed that he'd have friends and find fulfillment and happiness as he grew up. 

 

Your prayers have been answered. 

 

Despite a diagnosis that most of the world thinks would limit him, he's thriving. He's everything you prayed he would be and more (oh, so much more. You always knew somehow you'd have a headstrong, rowdy little boy and you got way more than you bargained for!). 

 

Your world will change, just like it would for any new mama. Within a couple years, the new normal will be preschool and therapies and you'll be a master scheduler and come to know a little bit about lots of things. You'll be an expert on your own child, even when you feel like you don't know what you're doing. The days are long but the years are short, as they say; babies don't keep. 

 

And yes, today as you face this news from a geneticist and a high-risk OB-Gyn you're anxious and a little sad---not because your love for this little unborn boy could ever change, but because you know the world can be unkind to those who are a bit different. Your heart will break when you read about countries bragging that they've eradicated Down syndrome and you know that they don't see the value of the life of a child with that magic extra chromosome. You will face struggles that other parents may never even consider. One day you may sit at the table at an IEP meeting, fighting for your child to have their educational needs met. In years to come surely you will have to advocate for him to pursue meaningful work and independence. In the very near future you will certainly be faced with the obligation to stand up for your child and the Down syndrome community when you make the mistake of reading the comments section and find "extra chromosome" being thrown around as a casual insult. Never read the comments section.

 

But you will have the very best girl gang behind you every step of the way. Because in addition to your husband and family and the professionals who are on your side, you need an army of mamas who share your hopes and fears for your kids. Soon your Facebook feed will be filled with parents celebrating what many take for granted---kids feeding themselves Cheerios or having no tears during a blood draw; and you'll celebrate right along with them. And with the highs come some of the lowest lows: parents in the PICU with their child who's struggling after heart surgery, or who are facing discrimination at school. Somehow your heart will grow to make room for these kids you may never meet, and you'll share in their joy and pain. But the joy is joy multiplied, sharing in the sorrow brings comfort and above all, you are grateful for this life of a special needs mama; and soon you will rock it. 

 

Your darling boy may not live exactly the life you would have pictured for him, but he will LIVE and love and learn and grow. He will love the outdoors and be a dirt magnet. He will know the words to his favorite books and "read" along even before he can really talk. He will adore music---how does he know exactly which song is coming on within the first couple of beats? He will have adventures. He will be kind and compassionate and give the best hugs. He will be handsome like his daddy but have those unmistakable almond-shaped eyes. He will make strangers smile at the grocery store and make his great-grandparents proud. He will bring more joy to everyone he meets than you could imagine. He will teach you as much---probably more---than you teach him. And he will open up your world to people who give you faith and hope for the future. 

 

Because even now, in the minutes and days and weeks following this new diagnosis, as you adjust to this new vision of your future, you know---you wouldn't change him for the world, but you will work like hell to change the world for him. 

 

With love and a fire within,

Leila

 

Leila is a stay-at-home mom to 2.5-year old Milo. He has his daddy's smile and his mama's stubborn streak. Despite a diagnosis of metastatic breast cancer when Milo was nine months old, Leila plans to be behind Milo every step of the way as he takes on the world.

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