I don’t even know where to start. But it’s always good to start with gratitude – and I’m filled with it.
It’s been 50 days. In these 50 days, our sweet Edison has seen many doctors, has had many tests, has taught a lot of nurses how to calm him, taught his momma and Nana and Papa a world of all-things-Edison and grown our hearts to sizes we didn’t know could fit in our bodies.
I have a lot of friends in this virtual world and they rooted and they prayed and they checked in and they called and they wrote and they sent meals and they picked me up when I just fell over and they loved. Oh boy did they love – from all over the globe our growing family felt the love from Team Edison. Thank you from all our hearts.
The nurses – especially Rina and Erin – were his lifeline. His LITERAL LIFELINE. When a baby all of a sudden cries and drops his oxygen to a point of turning blue, these nurses whispered, paci’ed, calmed, held, rocked, loved, fed, changed, advocated and held steady. We don’t appreciate our health care workers enough, we just don’t. (Why is it that those in charge of protecting our children – police, teachers, nurses – get paid the least when they’re the ones who should all be making 6 figures?) But they get paid with their hearts. The magical women (and one man!) who helped him these 50 days in 2 hospitals have angel wings under their scrubs. They simultaneously give the right care to babies while calming the mother’s heart as much as a NICU Mom’s heart can be calmed. Their advocacy for their tiny patients is big and loud, even if they were small and soft spoken. They will always be in my heart and gratitude.
The neonatologists, the otolaryngologists (ENTs), the pulmonologists, the cardiologists, the gastroenterologists – yeah – all the ‘ologists – they treat these little tiny babies with a fine line of “let’s see how he’ll shine” and “let’s keep him very safe and alive and flourishing.” They talked to the moms and the grandparents with respect and love for what they do and advised (not forced) on the path always letting Edison lead the way. Edison has a schedule and a path and sometimes he let us in on it and said “Got this!” and sometimes he said, “back off – not ready yet!” Everyone just had to get the message and his doctors allowed him to guide the path and not the reverse. So grateful.
And now we get to his mama…. From the moment she was born she had HER path and HER way. And this pregnancy and birth, in Jillian fashion, didn’t follow “norm”. Why we would ever expect that, who knows? But the most gratitude here goes to her. From the moment she found out about her little peanut she was “mama” in all the love and worry and neurosis that encompasses. She couldn’t have the delivery she wanted because of medical issues but she was the most unbelievable badass I’ve ever witnessed – determined and strong in her struggles, she amazed me. Then, when they took him to NICU, she felt fear, frozen, uncertainty. The only thing positive was this fierce love and protection for her boy. She paid attention, she learned the language, she asked questions, she advocated, she pumped, she cried, she panicked, she rose, she grew. She found out she’s stronger than she thought (no surprise to her mama) and more capable of hard things than even she could imagine. And NO ONE calmed Edison the way his mama could. She never thought she was a calming force to anyone – but to him she is that and more. She is his hero. And I get to witness that. How freaking lucky am I that I get to witness her heroism and my grandson loving her? Yeah – the big gratitude right there is to her.
And a friend just sent me this: It’s so hard to fathom… These weeks that started out so tenuous and worrisome. …. They will be woven into the stories about his life “Did you know you spent the first weeks of your life in the hospital?” In the course of his life these days will seem like a tiny blip.
So 50 days of tubes and monitors and desats and nurses and doctors and steps forward and steps backward and hospitals and parking and NICU baskets and volunteers and gifts and prayers and eating out and no routine and fears and hand squeezes and SO. MUCH. LOVE.
He’s home!! We’re on to the next adventure! Stay tuned.