Two days ago we were able to visit with Miss Paula, our Case Manager and favorite person at Randall's. We delivered Zoe's presents from her first birthday party, including the stuffed penguin that was almost as big as Londyn.
In a strange way, the hospital has become a second home and Paula helped make us comfortable from day one. I remember the very first time we met her. We had an appointment scheduled to tour the hospital just a few weeks before Zoe was born. Our connection with Paula was instant. She always laughed at Andrew's cheesy humor and with her son being a Marine, we were a match made in heaven. This was the third time seeing Paula since Zoe died. It is always a bittersweet reunion because each time seems so familiar, as if Zoe is still here with us being monitored in one of the rooms. Paula always helped the time pass during our lengthy hospital stays. She always kept us in the loop with Zoe's plan and even came in on her day off to check on Zoe after her first stroke. She is a kindred spirit and someone our family will cherish forever.
Today was not as lovely of a visit to Randall's. We visited our friends the Wormer's and their beautiful little girl Delylah. Delylah was diagnosed at just a few months old with SMA (Spinal Muscular Atrophy). SMA is a disease that causes the muscles of the body to weaken and deteriorate. Delylah and the Wormer family have been fighting for her life ever since she was diagnosed.
Doctors never thought she would make it to her first birthday and there we were, celebrating with them on a beautiful sunshiney Saturday. Even though she was struggling on many different devices and tubes to make her comfortable, she was there in an adorable tutu allowing us to see the light in her wide eyes.
This past Wednesday, Delylah's condition worsened drastically and she was rushed to the hospital while unresponsive. After monitoring and tests, Delylah's brain shows little activity. This has led Erin and Jasmine to make the excruciating decision to take her off of life support this upcoming Tuesday.
When Erin called Andrew late Friday night to give him the news, we were both in shock that this was happening to them. We knew it was in their future, but that doesn't make it any easier or less painful.
My heart broke for them, for us and each family that experiences the tragedy of losing a child. Every possible thought ran through my mind and I had to ask, WHY? Why does this happen? Why do children have to die? Why do some parents find themselves holding their children and feeling them take their last breath? Why do we have to say goodbye? I prayed that night for peace. Not for answers because I know those answers are beyond my comprehension and it is far too dangerous to dwell on the Why.
Heavenly Father answered my prayers today through the topics that were discussed in church. The messages that I heard were made so clear to me that I knew He was sending me comfort through the words of others. A friend of ours spoke on his experience in losing some close friends to an avalanche and how the grieving families struggled greatly without the comfort of knowing that they would reunite with their loved ones again. It was then that I knew that my purpose wasn't to question Why? or What if? But to have faith and exercise my ability to share the peace that I felt when we prayed to know if it was Zoe's time and was blessed with the painful assurance that her work here was done. Although it will never have been enough time with her, the sacred peace that we felt was without a doubt the most powerful gift I have ever received from my Father in Heaven.
In Sunday School, my brother Kevin taught a lesson on the Plan of Salvation, in which he reviewed the plan that our Heavenly Father has created for each and every one of us to return to Him and those that have gone before us. I have learned about this Plan many times in my life but today it was made much clearer. I know that I am a daughter of God and that he sent me here to learn and become more like Him. I know that I can and will return to Him and our sweet Zoe. Londyn has told me many times, "but Mom... it's taking SO long to see Zoe again." Some days this feels more true than others, but I know that Zoe was ready and worthy to return to Him. I am not there yet. I still have so much to do and so much more to learn.
All throughout church today, I knew we were going to go visit the Wormer's and see Delylah one last time. It didn't really cross my mind that this visit might be difficult. Entering the same floor where we last stayed with Zoe, smelled and felt so wonderfully familiar. It's odd but that PICU was our home and those nurses were an extension of our family. As we walked down the hallway to Delylah's room, we saw several of Zoe's nurses. Bonnie was one of our nurse's after Zoe's first stroke. After many attempts, she was the only one who could get a blood draw out of Zoe's veins. She also made a memorable chirping noise that made Zoe light up. Seeing her made me smile.
We were able to visit with Jasmine and Delylah for a while. Delylah looked very tired, yet peaceful. Jasmine told us about all of the events that took place in the past week, leading them up to their decision to take her off of life support. She proceeded to tell us that they will be donating her kidneys and liver. She then told us that they plan to donate Delylah's heart, in honor of Zoe. I was overwhelmed with emotion, almost as if we were receiving her heart ourselves. The sacrifice that this family is making to make a miracle possible for another is touching beyond words. Through the pain that they are suffering, they are thinking of other suffering parents and their children fighting for a chance at life. I hope that they can find some peace in knowing the magnitude of the gifts that they are giving.
Our last moments with Delylah
Jasmine & I
On my way out, I saw our very last nurse who was with us up until we left the hospital doors for the last time. I remember being hesitant then because we hadn't ever had her as our nurse before, but she was so kind and gracious with us every step of that very difficult day. When I stopped to talk to her, she instantly remembered me and said she didn't believe what she was seeing when she first saw us. She teared up and said we were a very special family and that she will never forget Zoe.
I thought I was holding my emotions pretty well up until that point. But I hit my limit and couldn't help but break down into tears. Both visits this week brought back a lot of very wonderful and very painful memories.
I met up with Andrew and Londyn in the waiting room. They were doing a puzzle together when I walked in. I couldn't control my tears. I was just so sad for the Wormer's. I was so sad for us and that Zoe wasn't with us. In between kleenex's, I couldn't help but snap these photos of my husband and daughter together. Yes- Zoe is gone but she is the fourth member of our family and will always be with us. Looking at these two warmed my heart because in the midst of all this tragedy, there is joy in eternal families and the time we still have together in this beautifully heartbreaking life that is mine.