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.

Dad loves you Scarlett

Mandi has done a wonderful job putting her thoughts and feelings about Scarlett over the last couple of months on the blog.  I just wanted to put a few words down to tell you of my special little Scarlett from my prospective.


We have been blessed in many ways as we have gone through the last couple of months with Scarlett.

My wonderful wife Mandi has been a great strength to me throughout this time.  It is so good to have her.  She has gone through the same things I have, and only she knows what it is like to be me.  I love her and couldn't have gotten through this without her support.  She is an amazing and strong woman, who I am blessed enough to call my wife.

Our neighbors, family, and friends have been so very helpful and served us in so many ways.  My words can't express the gratitude I have for such wonderful people who have served us so selflessly and been so generous with us.  I hope that none of them have to go through this, but if (or when :) ) they have trials, I hope to be able to repay them in some small part by serving them as they have served us.

From the beginning, things felt temporary with little Scarlett.  I remember on the second or third day of her life looking at her as she struggled to breathe and the words coming to my mind, "She will rise in the morning of the first resurrection".  At the time, the words were confusing to me because I wanted every blessing possible for her.  I wanted her to be fixed.  What else would any father want for a beautiful and precious little daughter?  I asked for these things in prayer many times, but I soon realized that having faith in the Lord meant to trust in Him and know that His will would be done for my little Scarlett.  I knew that I would understand better with time what the Lord wanted for her.

As time went by, Mandi and I tried to spend as much time as possible with little Scarlett because we wanted her to feel loved by us as much as she could.  Scarlett always had a special spirit about her.  I always felt better when I was with her.  I felt peace and love.  She was ever patient with her difficulties and seemed to always be happy.

Later after learning Scarlett's diagnosis of Pontocerebellar hypoplasia type 1, I didn't want to believe it.  It was very sad for us to accept that our precious little girl was going to get worse and worse, instead of better.  We continued on spending as much time as we could with her to enjoy her as much as possible while we still had her.  As I continued to visit little Scarlett and hold her and kiss her little forehead time after time over those days and weeks, I felt humbled to be in her presence.  She was a valiant and noble little one who had proven herself before she was born and would not have to suffer through the trials and difficulties of this mortal life.  I knew that she was too precious and too pure.  She was sent to earth to obtain a body and be allowed a short time to be with her earthly parents, Mandi and I.

Not too long after getting her diagnosis, Scarlett did begin to get worse.  She started having irregular breathing patterns and sleeping all day long apart for maybe a few minutes here and there when she would wake up.  She later got to the point where she wasn't breathing at all on her own, and was just being supported by the ventilator.  She passed away on September 19th in her mother's loving arms.

I am so thankful for the time we had with Scarlett.  It was a great blessing to me in my life and allowed me to get to know Scarlett and love her even more.  It allowed me time to learn important lessons from her.  This experience with Scarlett has definitely been the hardest thing I have ever gone through in my life, but it has also been the greatest blessing I have ever been given.  I have learned so much from little Scarlett that I could never repay her for what she has given me.  She is a tremendous blessing to me in my life and has changed me forever.

When I think of how to describe the things I have learned through my precious little Scarlett, the words to the hymn 'More Holiness Give Me' come to mind:

More holiness give me, more strivings within.

More patience in suffering, more sorrow for sin.

More faith in my Savior, more sense of His care.

More joy in His service, more purpose in prayer.

More gratitude give me, more trust in the Lord.

More pride in His glory, more hope in His Word.

More tears for His sorrows, more pain at His grief.

More meekness in trial, more praise for relief.

More purity give me, more strength to o'ercome,

More freedom from earth-stains, more longing for home.

More fit for the kingdom, more used would I be,

More blessèd and holy, more, Savior, like Thee.

I am not the man I was before Scarlett was born.  I have grown in faith, hope, and charity.  I have learned to have patience in my trials.  I have learned that the Lord will be there for us in our most difficult times, if we but ask in faith.  I have a greater love, understanding, and empathy for those who suffer through trials.  I have a greater hope for life after death.  I have greater faith in our Heavenly Father's plan.  I know that our Heavenly Father is there and truly loves us.  I have a better understanding of the suffering of the Savior, and the love He and Heavenly Father have for us.  As I have suffered through this trial, I have felt the Lord lift from me the heavy weight I have felt as soon as the thought of the Savior's suffering has entered my mind.

How great a lesson I have learned.  The only way I can show Scarlett my gratitude will be to go throughout my life trying to be a better person each day.  I will serve others better.  I will rely more on the Lord.  For me, this scripture has been the theme of our short time with Scarlett.  It is even more meaningful to me because it came to Mandi's mind just before Scarlett was delivered.  It has helped me to know what to do many times throughout the time with Scarlett and even now.  It is Proverbs chapter 3, verses 5 and 6:

Trust in the Lord with all thine heart; and lean not unto thine own understanding.

In all thy ways acknowledge him, and he shall direct thy paths.

Thank you my sweet, innocent, little Scarlett for what you have taught me.  I love and miss you more than I can express.  I know you are safe and happy where you are now, free from your little body and in a state of rest and peace.  You are in a place more beautiful than I can even imagine.  I have felt your love and the Savior's love for me and Mandi over the last few days, and that has strengthened me.  I know through the great Plan of Happiness that Mandi and I will be with you again on some not too distant day.  This separation from you is only for time, but we will be able to be together forever through the atonement of our Savior once this time has passed.  Goodbye for now my precious and noble little daughter, I love you and will never forget you, I will always have a place for you in my heart.
Your Dad.