It's Not About the Diagnosis

What They Didn't Tell Us

by Debbie at Finding Normal

....You made quite an entrance. You left the OR speechless, and as I laid there, open and wounded and alone on the operating table, the only thing the aenesthesiologist could say was that you had good color. He must've said that 5 times. No one else was speaking. They were probably outlining your defects and trying to diagnose you.


We had so so so many tests run in those first scary days. And while they couldn't tell us what was "wrong" with you, they did find a lot right. You had all of your organs, and most of them were working properly. And the ones that weren't, were treatable. When they finally came up with a diagnosis for your chromosomal abnormality, they told us that you might be a bit delayed, and they couldn't really tell us in what manner. I swore that as long as no one said that you wouldn't walk or talk, I'd be fine. They told us about some of the surgeries you'd need. They said you'd need a feeding tube until your suck/swallow/breathe muscles became stronger. They told us you'd need meds and oxygen and monitors. They told us you'd need early intervention and splints, OT and PT. No one mentioned life expectancy, and when we asked we were met with puzzled faces and the brutal honest truth--they just didn't know. So we chose to believe that your heart's hole would close. And it did. And that your craniosynostosis would be surgically resolved. And it was. And that you could come home and live with us without a trach. And you did.

What they didn't tell us was so much more. They didn't tell us how you would make such fast friends, and wrap people around your tiny finger as soon as they met you. They didn't tell us how your smile would light up a room, or how your hair would cause complete strangers to talk to you. They didn't tell us how everyone at your daycare would scream "Addison's here!" each morning, and how her teenage son would beam as he told me that you grabbed his hat all afternoon while he laid on the floor playing with you.

They didn't tell us how you would expand our vocabularies until we both feel like we've been through a few years of medical school. They forgot to tell us just how many specialists we'd have, or how dear a few of them would be to us. They didn't say that we'd play a little game with each resident, wagering on what year they were because we could just tell. They didn't tell us how many people you'd bring into our lives, or how having your therapists in our home each week would make us fast friends. They didn't tell us that you'd first smile on Christmas Eve at Mommy, at 6 weeks old...right on time. Or laugh a few weeks later. They didn't tell us how hard it would be to leave you alone on your first Christmas morning, or how frustrating it would be to need help to even hold you, or how devastating it would be to be a fractured family for so many months.They forgot to mention the fact that you'd look gorgeous in any color we put on you, or how you'd choose your outfits each morning from two options, usually picking pink. They didn't know you'd pick Hello Kitty over Princesses for your birthday party, or how much we'd celebrate each time you raised on your elbows and knees. They didn't say how you'd follow your brother around the house, tormenting him, or how fiercely he would love you.



They also failed to mention how you would beam each time your Daddy walks in the room, or how you would get jealous when Noah is getting some attention. They didn't tell us how you'd climb up onto any lap available, or how much you'd love to dump Noah's cars out. They didn't realize you'd love to go through the cabinets and make a mess faster than Mommy can clean up after you. They didn't tell us how your giggle makes an entire room laugh, or how quickly you can turn off the tears when picked up. They didn't tell us how much you would crack up anytime you heard your name incorporated into a song, or how fast I would cry when singing You Are My Sunshine.

They just didn't know how much you would change our lives, or how you'd bring us closer to each other and God. They didn't know you would make us even bigger believers, or that you'd teach us to just Be.

They didn't tell us how thankful we'd be each day for you and for each day with you, or how much of a blessing you would be. They didn't know how hard it would be to get to this point, or how to talk to special needs parents about what we were going through. They didn't tell us that it would just take time, and that it would all be okay.

So thank you, my sweetest baby girl, for telling us all of that. It has been an amazing 2 years. I cannot imagine my life without you. You are such a special blessing, and as I thank God for you each night while I watch you sleep, I realize what a gift He gave us and how lucky I am to be your Mommy. And may I give you a fraction of the joy and love that you've given me....

I love you to the moon and beyond.