10 years ago today & still several weeks from my due date, I walked into the doctor’s office for what had become a routine monitoring of a far from routine pregnancy. Everyone knew something was wrong – it looked like a problem with the baby’s digestive system, but no one could predict exactly what it was. Given that, they tried to keep me pregnant as long as possible, not wanting to complicate an intestinal problem with immature lungs. Recognizing that might be out of their ultimate control, though, I’d already received steroid shots to hasten her lung development if delivery couldn’t be delayed.
On that fateful day, 10 years ago, steroid shots on board, I sat in an oversized chair in a small room, hooked up to monitors… I drank juice and waited for baby to move. It had become a near daily exercise. Only on that day God had a plan. Emerson didn’t move. The doctor briskly entered the room to say it was time; “check in next door, you’re having your baby today”.
I could never have been prepared for the journey that began that day, and as I look back on the last decade of life, it feels surreal. The range of emotions has been vast and the decisions I’ve had to make, accompanied with the guilt for what those decisions took from me, has at times been insurmountable.
That being said, I’ve learned to stop blaming myself. Indeed life would be so much easier if we had a crystal ball; but we don’t. The most we can ever expect from ourselves is to make the best decision at the time a decision has to be made. And if we do that, it will ALWAYS be the right decision, regardless of the outcome. It’s easy to look back and wish we’d done things differently; it’s impossible to look forward and make a decision based on what will happen in the future. We can’t know. A decision made with careful thought and good intent at the time the decision is made is never the wrong decision. I know that is true and I’ve stopped beating myself up for time lost with my boys.
Indeed Emerson’s life has affected many. I’d be lying if I told you it’s all been positive, or that there weren’t days I wished she’d never been born. It’s ugly, but true. As we settle farther away from the firestorm, though, I can plainly see the impact her short life has had on us all.
I can hardly remember the person I was 10 years ago… it feels like yesterday and a lifetime ago all at the same time. I’m not perfect by any means, but I’ve learned a lot about myself and about life and believe I live stronger and love deeper as a result.
Emerson’s brother Collin, a high school senior, is preparing to study pre-med in college. He recently wrote, “Because of (Emerson), I have discovered a desire to help people: to impact other people’s lives in the same way that every single one of Emerson’s caretakers has impacted mine. Because of her, I am driven to make a difference in this world… to leave this world a better place for all.”
With a statement like that, it’s impossible to believe Emerson’s life and struggles didn’t carry with it great purpose. We are different people because of her and we will follow different paths in life because of hers. It’s impossible to wish she hadn’t come into our lives, when so much of who we are rests on the fact that she did. I would give anything to take the pain from her, but can never underestimate the depth of purpose she has given to all of us.
So yes – today we celebrate 10 years with Emerson. A milestone few thought she’d ever reach! And at 10 years, I’ve entered a new phase of this journey. Emerson is doing well and she spent all summer at home. Her last extended hospital stay was in the spring and the next one is (fingers crossed) nowhere in sight. Of course we know things can change very quickly, but we don’t think too far ahead. We live in each day and thank God every morning for yet another one.
It has been determined that Emerson’s intestinal graft is not working. She is on TPN, receiving 100% of her nutrition via an IV line placed in her chest. It is a painful reality but it means her transplant has failed, and with 2 transplants behind her and an impressive number of surgeries and interventions on top of that, she’s not eligible for another.
Luckily, though, she’s doing well on TPN, and aside from the hassle of having to lug around a heavy backpack and spend days tangled in tubes, she’s happy and enjoying life. She can’t live forever on TPN, but for now she looks good.
She attends school (2nd grade) 1 day a week and we homeschool to supplement the gap. She loves her iPad, her puppy, and her friends (and her brothers, she LOVES her big brothers), and she hates bedtime and has been caught ‘running away from home’ when she doesn’t get her way– a pretty typical little girl all the way around!
And us? We are a normal family with a slightly not-so-normal daily routine. Emerson is not “sick”. I am not the mother of a sick daughter and we are not a family with a special needs or medically fragile child. Yes, we park in handicapped spots because Emerson’s bones are brittle and her muscles are weak and yes, we occasionally pull out the wheel chair when there’s a lot of walking to do. That’s about where it ends though. It’s not who we are and it doesn’t define us anymore.
I don’t know what God has planned for Emerson, but I have some idea of what he had planned for us when he put her into our lives. She has opened our hearts and our minds and forced us to think beyond ourselves… her spirit and determination have shown us that anything is possible… and the love and prayers from so many has taught us that the human spirit is generous and good – a valuable lesson in the world we live in today.
Happy Birthday Emerson! Mommy loves you forever and ever. Never stop being exactly who you are – stubborn, demanding, oh so sassy and sweet. It’s caused me more than a few grey hairs, but it’s a powerful combination that has gotten you to this day. I can’t wait to see where it takes you next!
(I’m having some computer issues at the moment, but promise to post new pictures as soon as things are resolved!)