When Time Stands Still

1825+ days. Praying, advocating, fighting, trusting, tearful begging, consumed with papers and books and research. And then the moment comes… I finally scoop up a beautiful and precious baby girl up and out of her NICU bed and into my arms. Her eyes meet mine. Time stands still. The noise around us goes completely silent. It is just me and her, and in that instant, we are a family. Every ache and pain, all the paperwork, every tear, every single prayer prayed… in that moment becomes absolutely priceless. I would do it all over again for this moment, and the many moments to come.

As much as I wanted more friends and family to meet Lucy, I wouldn’t wish our first weeks together to be any different. Once she was discharged from the NICU, it began to snow. Due to the paperwork that needed to be processed, I knew we would need a couple a days in the hotel before heading home. What we didn’t expect was getting snowed into the hotel we were staying in, but it was a beautiful time together. (thankfully we had a very gracious hotel that was very excited about her adoption and worked with us – we were booked for three days and ended up staying over two weeks!)

A gift during this time, also, was to do something I had waited so long to do, announce that she had arrived! I had dreamed and imagined what this would look like and what they might say, but this was more than I could have ever asked for, dreamed of or imagined! There were so many people who had been praying for this day! And I could not take one single bit of credit, it absolutely-positively, without-a-single-doubt was ALL JESUS!

So the announcement of her arrival, after five years, had to be a little booklet 😉 I couldn’t just choose one picture. I couldn’t just announce her name, date of birth, weight and height. Although those things are swell! Not to mention miracles! I had to share our story. His story!

For Mother’s Day that year, I received her announcement framed. This would also be the same week her adoption was finalized! The family that owns the framing shop in town, that we love, made sure I received it by mother’s day. They also have a heart for foster care and adoption, and we all have prayed for each other and His will for each of our families. You never know how He will weave lives together! (Their son was my Paw-Paw’s PT at Heart Track for a short time – my Paw-Paw talked about him all the time! We didn’t make the connection until after my Paw-Paw passed away, one day when we were in the shop getting something framed!)

Needless to say, I was at an all time high! Celebrating my first mother’s day and on the way to finalizing her adoption! We were nearing the end of the legal paperwork process!

Six weeks later… time stood still in a whole different way. One moment I am second guessing my “mom gut.” One moment we are in the doctor’s office talking about seeing some specialists. One moment I am on the phone with the doctor, her telling me, let’s be on the safe side of things and go get an ultrasound at the ER. One moment I am packing a hospital bag. One moment I am laying beside my screaming little one getting an IV placed. One moment there is jelly all in her hair and nothing but a brain stem showing on the ultrasound machine. One moment we are getting a CT scan. One moment a neurosurgeon comes and says there is nothing he can do. One moment I look at the CT scan on the screen and it confirms what I thought the ultrasound showed- nothing but a brain stem. One moment she is being admitted. One moment the specialty IV team is trying to place her IV again, because she pretty much got so angry the first one was no longer in her vein. One moment there is silence – total stillness – and it all comes crashing – but there is no definite answers or diagnosis yet. One moment I try to close my eyes, but now we are off to MRI. And back again. My Lucy is tired, upset, confused, just wanting to be held. I hold her tight. Then one moment comes that I was expecting, but never wanted to come… the answer, the diagnosis. In a room full of doctors, nurses, PT, OT, specialties of all sorts, the world and time stops and starts spinning faster than I have ever experienced. She is a medical miracle. She has survived this long with basically only her brain stem. I have two weeks to savor the moments. In that moment, I literally excused myself to go be with my little girl. As I walked/ran down the hallway my vision was literally spinning like you see in the movies, and it continued for a long while after.

Absolutely NOTHING can prepare you for the moment when the questions of how would you like to proceed, are asked of you about your child. I cannot deny that it was Jesus through me that made these decisions! I just remember turning away PT and OT, because of the clarity He had given me about the pain she was in and it was about her need, not mine. As hard as it is to look back in order to see His faithfulness, I must, we must. And having to do home studies will prepare you to think through many things. One thing that you must have is a will that has everything written out – guardianship, power of attorney, money/assets, etc. So that in the case of sickness or death, your child will be taken care of and there will not be any misunderstandings in what your wishes are. Well, that sets up your child well. But what about when the end-of-life questions are about your child? Then what? This is where I see His faithfulness, I had the honor and privilege of being able to help out with all four of my grandparents who all passed peacefully with the help of hospice. So the decisions that are abruptly presented to you at a time of passing were not at all foreign to me. However, Lucy is my little girl, tiny little girl. So I knew the questions that had to be answered, but I far from thinking about what I would want for her until I was begging the palliative team at Duke to not discharge her until we had KidsPath with hospice set up to meet us at our home. And then the decisions flooded in: burial or cremation? funeral or no funeral? what does comfort and hospice care look like for her? What does this involve when she is facing a matter of weeks, days, moments? Truth is you feel like your overtaken by a fog and just hope your making sense and choosing what you will want long-term.

Pause: If you are a parent, this is hard to think about, but I would suggest you to think through this. Write it down- I really hope you will never have to come face to face with this reality, but if you do, you will be grateful for the advanced clarity!

Decision time. Her body was literally skin and bones. She had held on for two weeks – no food, no bottles. I personally couldn’t place her in the ground, she loved her birds and squirrels and deer, do she is spread out among them. No newspaper, simply because I just sent announcements and her birth certificate came the day we went to the hospital. No funeral- just didn’t feel right. I needed to just be still for a while.

A couple weeks later I decided on a celebration of her life, but nothing formal. I needed to see and be with children. So we celebrated her life with arts and crafts, Chick-Fil-A, donuts, and playing! I believe she would have loved it!

The same frame shop framed her celebration invitation 😊

And they framed her footprints too! I see this everyday when I wake up and when I go to sleep. She walked home faster than I would have liked her to, but she also taught us we are all walking home as well.

Walk on my friends!

Book of the Week: Virginia Wouldn’t Slow Down: The Unstoppable Dr. Apgar and Her Life-Saving Invention, by Carrie A Pearson. If you have had a baby you probably are familiar with the Apgar score at birth. An amazing miracle about Lucy’s birth, she had almost a perfect score- only God – with her diagnosis (according to science) she should not have survived, and of course, she should not have had any reaction to the outside world!