Wednesday, March 24, 2010

Say It

I remember when I couldn’t say it without choking up. I couldn’t get it out without the heat rising inside of me... I couldn’t say it without feeling like I might crack wide open and my guts would fall out on the floor.

Maybe if she had been born with no heart complications, maybe if she had nursed from the start like a champ, maybe if I had been able to take her straight home to her beautiful nursery.

Maybe if someone had captured gorgeous pictures of her in fancy baby girl lace, instead of decked out in wounds, wires, and tubes...

Maybe if I could have convinced myself that she was a Rockstar, that she would be the One to break the mold, that she was going to be different... that she was more special than special. Maybe if all my friends and family had played along...

Maybe then I could have said it without shaking,

"My baby has Down syndrome."

But none of that matters anymore, because I can say it now. I can say it with ferocity. I can say it with dignity. I can say it with love.

But most importantly, I can say it with indifference.

pinwheel

16 comments:

Courtney said...

Love this post!!!!! I feel like I am in a place where I say it with exuberance and pride. No one on the "other side" can even comprehend what an amazing gift this has been!

DownTownDan said...

Indifference. Such a hard place to get to, but I think I've finally got there, too. Finally. I notice that when I go to the store or something with the family, I don't feel like all eyes are on us anymore. It just doesn't matter now, not like it did for a long while. Things feel normal again. But all of this takes time. No matter how well you deal with the initial sting, there is a process that each of us must go through, and it takes time. And anyone who doesn't admit that simple fact is not being very honest.

Wren said...

Probably not! My two and half month old didn't have any health issues, latched right on and hasn't stopped nursing since, came home 36hrs after delivery and my family and friends have been overly supportive and have treated him like any other "normal" baby. Yet, I'm dreading my first hair cut next week because I know I'm going to have to tell my hair dresser and I just don't know home I'm going to make the words Down syndrome come out! I've been dreading it since I made the appointment.I know that I'll get to the place where you are one day, but I'm not there yet!

The Sanchez Family said...

I love the place we are at now too and although our time of "grief" and "fear" was relatively quick (since the circumstances of our finding out were so unique as well)...I do love that I am so PROUD to have a child with DS and so much so that I can't wait to have another with our soon to be adopted daughter. I feel so blessed to know that an extra chromosome is nothing but just that and our babies are unique and special just like all of our children.

L.L. Barkat said...

Well, and she's just so darn cute and spunky. You can say that too, and it would be the truth. I wonder what she will someday say of you... :)

Linda said...

How long was your angel in the NICU? Lila was in for 7 weeks. She too, was covered with wires and tubes. Tubes going in, tubes coming out. We weren't even allowed to lift her out of her little NICU bed without a nurse present for fear we would rip something out. She didn't even feel like our baby. We didn't send out her birth announcement/letter for 4 months. I know what you mean. But you are there now, and that's what matters. We can't ever compare ourselves to others. We are all so different. Hugs!

Chromosomally Enhanced said...

I like this...I like this alot..you made me cry! and think! I hope I get to say it load and proud that my baby has Down Syndrome...smiles Kim

Lisa said...

This is the most beautiful place to be. And it's one of the most honest approaches I've seen. Love that baby girl of yours :)

TUC said...

Wren, I remember going to my hairdresser the first time after Kimani was born. She was pregnant with her first and so excited... Kimani was still in the NICU, pumped up on antibiotics... she had just pulled through the meningitis and we were worried about the aftereffects, the apneas... Kimani's primary nurse had begged me to go somewhere, anywhere to get away for a few hours... so I went to a place where they would make me look better than I felt. I tried so hard not to cry and to focus on my hairdresser and her excitement. It was awful and I spent the whole time terrified... obsessing that Kimani could die while I was getting my hair done. So here's to you having a better first time back in the beauty seat than I had :-)

L.L., at least I don't have to worry about her writing a tell-all.

Linda, 113 days. The hardest 113 days of my life. I have seen Lila's NICU pic and it brought that knot in my stomach right back. Seeing her now is seeing pure beauty.

CE, so we're almost even because you make me cry all the time. Thanks for being an inspiration.

amy flege said...

i love this, and i love that picture!!!

starrlife said...

Perfect.

JoAnn said...

Wonderful post...the picture is great! Thank you, TUC!

I relate to DownTownDan so well....now, when we go out with Emma, I can face the stares, the looks of shock when they look at her and register all of the obvious physical deviations from the norm, and smile at them just as proudly as I would if they were smiling at her and telling me how cute she is.

Things DO feel normal again....to me. We've found that new normal.

And she IS cute! She is herself, she is Emma!! Yes, OK....she has Thrombocytopenia-Absent Radii Syndrome, plus cerebello-trigeminal-dermal dysplasia with rhombencephalosynapsis. And I can actually say it, too! With a smile! :)

Emma is unique, she is beautiful (as is Kimani, of course!!); she is a very special gift from God, and I feel honored and humbled that He has entrusted her to us.

Kristen's mom said...

I love this post and totally get it. Rock on.

CJ said...

And the lives you touch with your posts, with your insight, with your LOVE are unmeasurable!

Shelley said...

Great post - I love that too - indifference - yep - I've not thought of it like that before but I am happy to say that yes I too can sometimes say "My daughter has DS" with indifference - and at other times it is with great pride and joy!

Anonymous said...

I can say it too. Thank God. xox

Jasmine

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