Nov 1

Nov 1 IOU Kelly

This summer, Kelly asked a simple favor of me....actually, it wasn't a favor, it was an honor...to write a guest blog post. Others had done it---her mother, her father, her brother in law, Miguel. I said yes, and intended to, I really did. I was touched to be asked. But, I just never quite got to it.

I sure wish I had now, because doing this after Adelaide has left us is just too damned hard. I have read, and re-read Kelly's letter to Adelaide. Not one time could I get through it without tearing up. I keep hoping that somehow time's passage will help me make sense of this. I had hoped that maybe once Adelaide's Celebration of Life ceremony---that oh-so-beautiful service that had Miguel and Kelly's golden touches on every single aspect of it--was behind us, I'd find some solace. And that I would be able to find some healing words.

But no. Not yet.

IOU Kelly. IOU this guest post and so much more. Your friendship, your courage, your words in their breath-taking honesty that inspire me to my core. My words aren't anywhere near as eloquent and powerful as yours. But I promised, and at least I can finally try.

Here goes....

Dear Kelly,

Yesterday, I saw your Instagram photo of sweet Adelaide when she was just a few weeks old. Bright eyed, full of possibilities and brimming with all the dreams we mothers have for our daughters. You had it all then. A marriage to a great man, an incredible son. A beautiful new daughter, with a future filled with everything girly -- old-fashioned as that sounds -- adorable dresses (yes, I know you love to shop), dancing together, girlfriends, boyfriends, graduations, a wedding. Maybe you even envisioned watching your little girl become a mom herself.

These past years, those dreams have been slowly and cruelly snuffed out. And yet you've continued to put yourself out in the world in ways I can't imagine doing. You've shared the most personal, raw feelings and experiences. Through that you have shed so much light on Adelaide's struggles and journey. and so very much more. You've taught us that we are not alone---no matter how hard the journey. You've taught us the value of community and caring. Most importantly, you've now taught us how to know when to keep up the fight and when to put down our swords because it is absolutely, without equivocation, the time to do so. Because there is a greater and kinder good. You have been the North Star for your family and, now, for so many of us. You are one special gift, girlfriend.

For over twenty years, I've also been sharing my story. Talking about that wicked, nightmarish cold January day in 1982 when our lives changed forever. When I found our daughter, Lauren, blue and limp in her crib after what we soon found out, was a night filled with seizures. She was seven months old, just like Adelaide. Twenty different medications, brain stimulation, special diets, uncountable visits to ERs, months and months in hospitals. Nothing stopped her seizures. The gap between her and her peers grew and grew. In addition to the medical world, special education, therapies and heartache became our existence.....

No. Wait......STOP.......rewind......

Kelly, you've made me realize that, after all these years, it is Lauren's story I've been sharing, not mine. I played a central role in it, of course. But it's her story. I've never had the courage to do what you do. To share my own story. You have done it to perfection. While some of us have not dared to 'go there', it's what you have done so boldly and creatively. You've shared what mothering this special child has done to your life, to your relationships, to your family. You've shared the shattered dreams and expectations, and yet you've also sparkled light and revealed hidden blessings. We cry and we laugh with you.

This morning, I've vowed to finish this letter to you. It's both a love letter and a thank you letter and it's been insanely hard to write. But, it's 3:00 am. and this is getting ridiculous. So forgive my ramblings please.

I can't help but wonder if you're also awake on the other side of town, grieving the enormous void in your life. Of course you are. How can you not be? Four non-stop years of caregiving, loving and giving that ladybug of yours the best of yourself and what the world had to offer her. And now, her empty bed, the absence of medications, equipment, nurses, therapists. I can't stand the image, but I can't get it out of my mind. It's just been two weeks today, but feels like an eternity.

I look forward to watching you flourish, find new parts of yourself and new paths forward that will benefit from your unique Kelly energy and passion. It will be awesome, I am certain, because you are awesome. And you will have Adelaide, your family and this amazing community you have built, behind you all the way.

I can't know how totally numbing this must feel. The moment I saw you emerge from the car at Adelaide's Celebration I saw a palpable change. I could see it in your posture, the color in your face. I can hear it in your voice and in your (temporary) retreat from writing. I've known too many moms---including my own---who carry that 'look'. It's something none of us ever, ever, ever should have to do.

I hope that in the time ahead you can prioritize taking care of yourself, that you will allow yourself to retreat whenever you feel you need to. To cry freely--in public or private. To call on friends when you want to-----and tell us to go away when you don't. I'm looking forward to times together with wine, laughter and memories. But on your terms. You've earned that, times a million.

My hugest regret is that, in the words I've so often heard you say, "the science just didn't catch up in time for Adelaide." In her honor and yours, we pledge to keep up the fight for the next Adelaide and the next Kelly and generations to come. I'm just so painfully sorry we didn't get it done in time.

With so much appreciation and love I can't possibly put it into words,

Susan