Eme discharged again today. She’s back up to full feeds and is as happy and as ornery (all at the same time) as ever!!
A million thanks to all who’ve shared your personal struggles on Emerson’s guestbook. I’m so touched by the words you’ve written & am humbled to think I’ve been able to help in some small way. Clearly all our individual situations are different, but the dreams we have for our children & the emotions we feel are the same. Like all others who've walked this path, I am fearful, I am sad, and I grieve – I grieve for the life I’ll never have… I grieve for the life my daughter will never have. I forge ahead, though, knowing I can’t change it. I’m learning to accept it and to live with it – not for it, not because of it, not in spite of it. It’s not easy. It’s a conscious choice I make every day.
I’ve always been careful to never “compare” our journey to others. It’s not better or worse, only different. In that sense, please remember Emerson’s particular transplant, including the underlying condition that perpetuated it, is very rare. Because things improved for another patient several years post transplant, does not mean it will for Emerson. It doesn’t mean it won’t, but it doesn’t mean it will. Frankly, no one knows what the future holds for Eme. There is no chapter in the medical manual that covers this… she’s writing history every day. She is only the 4th one here to receive a liver, small bowel, pancreas AND kidneys & she is only the 2nd to receive back to back multiple organ transplants in less than 12 months. She is the 1st to survive it all. We take every day as it comes. Today is a good day – Eme was discharged from the hospital. Tomorrow?... We’ll tackle that one when we wake up!
Of the many things I’ve experienced here in Omaha, most profoundly I’ve felt the finality of death. For me it was a blue light flashing in the hall, doctors sprinting from all directions, an overhead code announcement. I was ushered to a private room & told to prepare for the worst – my daughter’s heart had stopped beating. Had my final words to her already been spoken? But wait… I didn’t say what I wanted to say. I wasn’t allowed to watch or listen, instead I was taken away to wonder. Wonder if at that moment they were removing the machines & taking out the tubes. By the grace of God they were not. They were delivering chest compressions & pumping powerful medications into her little body - they were saving her life. I was given a second chance. Many, sadly, are not. I’ve felt the grip of death, but still have my daughter here to hold. I get to live the lessons I learned. I am so blessed. It was a defining experience in my life & one I relive every single day…
Indeed I’ve learned a lot in Omaha & much of it is applicable to everyone. We never know how long any of us have here on earth. Every day is a precious gift that can be taken at any time. Clearly, though, the likelihood of Eme departing too soon is a harsh & cruel reality I must accept. I cannot control it though – I can only control the quality of the time she has here & I vow to make it count. Thank you for being a part of our journey. Thank you for loving my little girl. Thank you for giving me the strength to face each new challenge & the encouragement to dream for a bright tomorrow. I do dream… I dream big!
P.S. - Collin & Bradley are enjoying summer at the beach in Michigan - so much so, in fact, that I rarely talk to them. They've been fishing, playing tennis, launching water balloons, skim boarding... in general, they've been having lots of fun! They've yet to spend time outpatient with Emerson in nearly a year and a half now. I'm hopeful that'll happen when they return to Omaha at the end of the month. School starts August 13th - hard to believe, the summer is slipping away.