Sadness...

I haven't posted in a while. Sadness sometimes drains a person of words. Thankfully, my sister-in-law, who is actually experiencing much more intense grief than I am, was able to put her thoughts to words. Here is a beautiful tribute of what has taken place in our family in the last couple weeks. The following was written by my sister-in-law about her 4-month-old daughter, Selah...

To Everyone We Love...

We're not sure what exactly everyone knows about this last week for our family and Selah, but we wanted to share a little about the last ten days with you.

Last Wed. when we went in for Selah's 4 month check up, we told our doctor that my dad (a family doctor) was concerned about her low muscle tone and had mentioned running a series of blood tests. Up to that point, we had expressed some concern about her slow/poor weight gain, but besides that, she was doing so well--constantly happy, always smiling, interacting, and sleeping really well. We could only take half of the blood needed for the tests because of her small size, so they asked us to return on Friday to complete the lab work. We tried to take blood on Friday, but they couldn't get what they needed, so sent us up to the hospital. On my way driving there, our doctor called because he had just reviewed the labs from Wednesday and three were abnormal so he told us to go up to children's hospital. From there we were admitted and the process of piecing together what was going on in Selah's little body began.

It soon became clear that for some reason, almost every organ and muscle they checked in her body was abnormal. We also learned that because of the affected muscles, she had been aspirating every time she had a bottle. The doctors were amazed that she had never had pneumonia nor any other major symptoms. Her heart was very enlarged and was causing her left lung to collapse. The doctors narrowed their predictions down to a genetic disease called Pompe. It is a very rare disease and the metabolic specialist from the medical school had only seen 7 patients with it before, world-wide there are 5,000-10,000. Basically there is no real proved treatment. There is an enzyme replacement that has shown possibilities of making a difference, but there isn't solid evidence of a restorative nature. Many of the doctors and nurses we came in contact with had never heard of it and had to look it up. This week, Monday through Thursday, it just seemed that Selah spiraled downwards with difficulties feeding (even with her NG feeding tube) and especially with breathing. She started running a temperature and by Thursday night, it was painful to watch her try to get a solid breath of air. She became completely limp and almost unresponsive. This morning, she really was starting to struggle and after talking with our pediatric team, we made the decision to give Selah medicine to keep her comfortable, but not to continue with extensive life-saving measures. Really, her little body made that decision for us. As a family we had time with Selah. They took out all of her tubes/wires except for the nasal oxygen and we just enjoyed holding her and cuddling her. Around noon, her breathing slowed down and then peacefully stopped while she was in Daddy's arms....and the doctors confirmed that Selah's life here was over.

Those are kind of the facts of what has been going on....but when we look back on this last week....there just is so much more. It's hard to adequately describe the pain and sadness we are feeling right now. It is a deep ache that hurts worse that anything we've felt before. At the hospital there was a sense of relief because it was so hard to watch her struggle to breath, but when we walked in the house, we were overwhelmed by grief....the empty crib, the piles of baby clothes, her favorite toys, and the photos of her everywhere, thinking of our other kiddos and their sadness. I weep as I write this...the pain is very deep and very real and the ache will probably be there for a while. C just said to me, "I miss Selah" and really that's what it is...Selah was such a complete joy to us...we already miss her.

In the midst of all the sad though, we have seen and felt such evidence of God's presence. There's no pretending that this week wasn't hard or that every bad test result wasn't crushing, but as we poured out our hearts to God, He gave us strength that doesn't even make sense and an overwhelming sense of His love. He gave us an amazing, consistent day nurse named Denise who showed us such love. He brought us a night nurse named Katie who is a Christian and she had her church praying for us. When we were overwhelmed by upcoming decisions about trying treatment or not, we prayed and that very morning, He brought along the head pediatrician, who helped walk us through the thought process and mainly just listened in a way that gave us strength to realize we had options and didn't necessarily have to choose treatment if it meant Selah's suffering would just be extended. We even prayed that He would take the decision about treatment out of our hands, and He allowed events to progress in such a way that even the research/metabolic doctors clearly saw where things were headed and we didn't feel pressured in any direction.

The whole week we felt such love at the hospital. The nurses and doctors wept with us and were so much more than medical professionals. We couldn't believe the kindness every doctor and specialist showed to us. After Selah died, the pediatric team even came back to our room to say goodbye and asked us to tell them when her memorial will be, so that they can possibly attend. Our family made sure our other three kiddos were doing okay and our dear friends picked up all the loose ends and took care of so many details, besides just being around to cry with us.

And God even answered our unspoken prayer. We were feeling a bit anxious and sad that our adoption of Selah was not yet finalized. It is a real process to terminate parental rights, even if the biological parent shows no resistance. May 8th was supposed to be our date for parental rights termination and then there is a waiting time before you usually can finalize. When our lawyer, Scott and friend/former social worker, Cathy saw where things were going, they worked together and Scott pulled some major strings talking to both adoption agencies, DHS and a judge so that one hour before Selah died, they delivered to the hospital our completed adoption papers and Selah officially became Selah ____. It was such a gift, something we hadn't even imagined would be possible.

When we officially decided to adopt, we sent out a letter in which we quoted John Piper as he wrote: "God is graciously involved in adoptions. He has done it Himself. He knows what it costs. And He stands ready to support us all the way to the end." So many times in life, you think you know what you believe, but you wonder if it will really hold true. This week we lived in God's gracious strength and love. We chose Selah's name because it means "to pause and value". In the Psalms it means that something coming up or something that was just said is very meaningful and worth pausing to reflect on. This week we felt like He gave us Psalm 62: 5-8 which starts and ends with Selah.

Selah

For God alone, O my soul, wait in silence,

for my hope is from Him.

He only is my rock and my salvation,

my fortress;

I shall not be shaken.

On God rests my salvation and my glory;

my mighty rock, my refuge is God.

Trust in Him at all times, O people;

Pour out your heart before Him.

God is a refuge for us.

Selah

The sadness is so deep right now that it's hard to even read her name without weeping. We miss her. But we have felt so much love from you all and we know without a shadow of a doubt that God loves us and He loves little Selah. We know she is with Him in heaven now and we have no doubts or regrets. In our letter announcing adoption we also mentioned Randy Alcorn's book about Heaven. God providencially put it on our hearts to focus on Heaven with the kids last summer and fall. Our grief would be unbearable if we thought this was the end, but we truly believe that Selah is with Jesus in Heaven now.

My friend Rose received this from a friend and shared it with me:

The Japanese cherish the cherry tree for one simple fact; it's blossoms last for very brief moments each year. It is the brevity of the blossom that is celebrated. Some years the blossoms only last an hour or two because of wind or rain or because they are too fragile, yet often the glorious blossoms will last for up to six days. Regardless of the amount of time they last, life literally stops, in all aspects in all of Japan, to view these blossoms. Families gather together under the cherry trees in full bloom to bask in their beauty and joy. In literally every park, there is not one spare square inch of grass or dirt left, because each family reserves space by setting out their blankets and celebratory foods underneath these beautiful, fleeting blooms. Everyone here knows the blossoms, like all life, will not last; that their time is brief, that their beauty, grace, and joy they bring will soon be a cherished memory and one to celebrate with each passing year.

That truly is how these past months with Selah have been. She has been such a beautiful gift, a treasure to us. We know that Selah was chosen for our family and we were chosen for her. She brought so much joy and added so much meaning to our family. She will always be a part of our family.

Thank you for loving her with us and for weeping with us right now.