one week

It has been one week since Scarlett returned to our Heavenly Father. I think about those last moments we had with her several times each day and wonder what she is doing right now in heaven.

Scarlett's funeral was beautiful. My friends made a beautiful arrangement of all our favorite pictures, little outfits and blankets and tiny footprints of Scarlett's and Jon's dad and our Bishop spoke many words of comfort. The harp medley made me feel like I was in heaven with Scarlett. Everything was so perfect even though I felt so numb throughout the day. I am so grateful for all the friends and family and neighbors that have helped us over these past couple months. The Lord truly does bless us through the service of others.

These last couple of months have been somewhat of a dream for me and Jon. From the moment of Scarlett's silent birth to the moment she quietly passed away, my life was stuck on the slow motion button. I remember the exact moment life sped up again to its normal pace. I was holding Scarlett just moments before she died, and all of a sudden I could hear all the background noises again that had once been silenced. It was like I had awoken from a deep sleep.

It has been very difficult for Jon and I this last week. We have cried so many times and prayed for comfort and peace and understanding, and Heavenly Father has blessed us with it.

 This experience with Scarlett has been very special and sacred to me and Jon, but I wanted to share a few thoughts I've had these last few weeks and wanted you to know a bit of the struggles we've had in deciding to let Scarlett go.

When we learned of Scarlett's diagnosis over a month ago, Dr. Swoboda gave us a couple of options of what we could do. We could either take her home and set up our own little NICU in our family room and watch her progressively get worse or we could "withdraw support" meaning we would remove her breathing tube and let her pass away peacefully. I remember being quite horrified that the doctor would even suggest that to us. I wanted to do all we could at that time to get her home. Scarlett was still only needing a little support from the ventilator and I totally thought we could just sacrifice our time and energy until she passed on her own, meaning she would most likely get a respiratory infection that she couldn't fight off and eventually succumb to it. Not a pleasant thought, though.

As the weeks went by, we learned more about Scarlett's disease and Scarlett taught us through her gentle demeanor and we also learned that bringing her home was really not the best idea for our family, but mostly it wasn't good for Scarlett. It was quite apparent that the doctors and nurses thought that withdrawing support was the best decision, but Jon and I just couldn't bare to make that final call. We went to the temple and fasted and prayed, but still we couldn't bring ourselves to let Scarlett go even thought we knew it was probably the best decision for her. I couldn't let her go when she was still looking us in the eye when we'd talk to her. 

Then one day a few weeks ago, Scarlett started sleeping more than she usually did. She woke only for a few minutes while her diaper was being changed, but then she'd fall right back to sleep. I remember those last couple of weeks of her life walking into the NICU and seeing her peacefully sleeping in her little hospital crib. As I'd watch her, my heart would break because even though she looked so perfect and still as she slept, I knew her body was really struggling to stay alive.

After praying for weeks about what to do, Scarlett began doing Cheyne-Stokes breathing patterns meaning her brain was beginning to deteriorate. Jon and I feel so strongly that having Scarlett sleeping more and her breathing changing were signs to help us make our decision.

Then two Saturdays ago, the doctor pulled us aside and told us we needed to make a decision soon. We couldn't keep her at Primary Children's hospital any longer because it is a place for babies to get better. We could either do a trachiostomy and send her to a long term care facility where she would sleep all day with a ventilator breathing for her or we had to let her go. In that moment, Jon and I knew exactly what we needed to do. We had enjoyed two wonderful months with Scarlett and loved her as much as we possibly could, but now it was time to let her go. If my heart wasn't completely broken, it finally did at that point, but despite knowing we had to let our baby go, it was going to be okay. I just remember feeling that is was going to be okay.

We set the date that we would remove her breathing tube that following Wednesday. It's really surreal planning a funeral and wondering how you'll make the most of every moment with your loved one when you know they are going to die soon. I absolutely hated the feeling, but was grateful every day up to that point that I had one more day with her.

All our family came to see her Tuesday night which was so amazing. I loved watching all my nieces and nephews touching and starring at Scarlett.

We had slept over at Primary's with Scarlett that night. It was the longest night of my life. I remember waking up and walking over to her crib in the glow of her ventilator monitor to change her diaper and then waking again when she got hiccups. I remember staring at her monitor and watching the breathing marks peak each time she'd hiccup. She just lay there sleeping so peacefully, I wanted to just watch her and never forget her sweet little face.

I feel like I'll get too personal if I go on, but all I want to say now is that it was the most difficult, yet most amazing experience to watch our baby pass away. I thought I would be afraid, but I wasn't. She looked so beautiful and so peaceful- even more peaceful than she looked when she was sleeping. I felt this overwhelming sense of peace that Scarlett was free and happy.

I love Scarlett so much. She is a part of my heart and sometimes I wonder how I can even go on living without her here. I often feel like this whole experience was so unfair, but when I pray for peace and understanding, Heavenly Father blesses me with it. I know he is hearing my prayers and is crying with me. He too knows how it is to watch your child pass away and not do anything about it. I feel like I had a tiny glimpse of what it must have been like for Him to watch our Savior die upon the cross, although it is nothing to compare. One moment I will never forget with Scarlett was a few weeks ago when I was holding and rocking her and thinking about how much I love her. And all of a sudden I finally understood our Savior's love and I understood the Atonement. I know our Savior died for us so we can be with our families forever. He knows that we love them that much.

I will never forget my beautiful Scarlett. When I think about how happy she must be to be free from her little body, it makes life a little more bearable. I know I will see her again and have the chance to hold her once more, but until then, I will have to keep holding on and trying my best so I can be with her forever.