Life can throw us curve balls. Just when you think everything will line up smoothly and all the ducks are in a row behind your marching orders, here comes life with a gust of wind to undue your hard work. Maybe, just maybe that gust of wind is a breath of fresh air.
Jeremiah 29:11 “For I know the plans I have for you, declares the Lord, plans for welfare[b] and not for evil, to give you a future and a hope.“
Well that just makes me think. Were all these hard days planned? Were they all leading up to something good, a future, a hope? Yes and no. God does not say here that he plans our Christian lives to be without suffering or without sorrow. He does say, if we look just a verse or two after Jeremiah 29:11 that if we seek Him we will find Him. God’s plan seems to be that we find Him, our future, our hope. It seems in the suffering we see Him more clearly. And God takes the hard days, molding them into experiences for His glory.
Proverbs 37:4 “Delight yourself in the Lord, and he will give you the desires of your heart.” Proverbs 37:3 says “trust in the Lord.” Proverbs 37:5 says “commit your way to the Lord.” When we trust the Lord and have a relationship with Jesus, our desires become His desires. Our wills start to align.
No more than three days after our week long stay at Seattle Children’s Hospital did the phone ring. Her familiar voice, now on the phone, gave me the results of the final genetic blood work. Honestly, my emotions were a bit dull when I spoke with her. In my heart I knew what she was going to say. I was ready for an official diagnosis.
“It was what you thought. Her test was positive for prader-willi syndrome. Now this is what we can do.”
I sat down to give the neurologist my full attention. I deliberately calmed myself with a few deep breaths so I could focus on logistics. There was a prader-willi clinic at the children’s hospital where a multi-disciplinary team of doctors would see children and follow their care. The clinic was in high demand and space was limited. Appointments were four to five hours long. The next opening would not be for another five months. I did not care how long we needed to wait for the clinic, so we were placed on the list and told we would meet with the neurologist again in three months when she traveled to Juneau.
Relief, sadness, guilt, shame and a dozen questions filled my heart and head. Relief for a diagnosis. Sadness my daughter would not have the future I envisioned. Guilt that there was something I could have done to make her normal. Shame that I now have a special needs child. Questions of what the future would hold, how will she hit her milestones, if she will have a normal IQ, if she will have behavioral issues, and the list continues. I remember grieving her future. I still grieve but it looks different. The grief still stings deep within my chest. What I had planned for my daughter would likely not be her future. Even with grief clinging to my heart, sitting beside it were arms wrapped tight with providential hands yielding trust, hope, and a new direction for myself and for Elsa.
It was Monday morning in a familiar doctor’s office. My pediatrician, David, and I sat together talking about our plan for Elsa. She was now gaining weight appropriately, although not yet on a normal growth chart. David and I were now ready to press on with Elsa’s treatment and organize doctors for her care. My pediatrician left the room to answer a phone call. The neurologist was on the other end. There was a cancellation for the prader-willi clinic at Seattle Children’s Hospital on Wednesday. David and I looked at each other, our eyes a little wider and jumped at the opportunity. She explained there was a possibility of her being seen but we would not know until the next day for a conformation. We were on stand-by and I was quickly planning arrangements for the boys and looking at flights. My doctor was shocked!
Tuesday. The phone rang again. They could see Elsa at 1pm the next day. Of course I said yes even though it was less than 24 hours notice. We set plans in motion with day and night babysitters. Thank you Shelley and Hannah! The boys had their best Juneau Aunties to watch them for two days. David and I left at 4am for the airport with Elsa planning on a one night stay in Seattle. As we enjoyed the time just with Elsa, we talked about her future. We talked about our marriage, our need to be a team more than ever. We needed to press into our faith with more determination and focus.
I was always nervous and anxious when the nurse took her measurements. It was like she was measuring me and my ability to feed and care for my child. The first to come in was a nurse coordinator. She was so excited to meet us and hold Elsa. It was the first time someone looked at Elsa like she was a normal child. She gave us resources for PWS and websites to look up. Next was the geneticist. She explained the process of mutations and deletions and exactly what kind of PWS Elsa has, which is maternal UPD. Next was the endocrinologist. She had information on needed blood work, hormone regulation and a plan for growth hormone. A baseline sleep study would need to be done before administering growth hormone. The third was our pediatric neuro-developmentalist. She explained early intervention with PT/OT/SP which we luckily already had in place. Fourth was the Nutritionist. I handed her our notebook of every feeding time, amount taken, calorie counts, and weekly weight checks. She confirmed Elsa was doing well and frankly a little surprised she did not need a feeding tube. Next was the cardiopulmonary doctor. We talked about labored breathing and the need for oxygen at night. We spoke with a sleep specialist. Little kiddos with PWS tend to have obstructive sleep apnea due to low muscle tone. So far, Elsa was not on oxygen.
David, being my husband who jumps at opportunities and thinks outside of the box blurted into the conversation. “Well, can we get a sleep study for apnea tonight? We only scheduled our trip for one night.” The two doctors looked at each other and said it was far fetched to find anything on a few hours notice. The clinic is booked months out in advance but they would call and ask if there was anything available.
I was a bit overwhelmed. We had seen six doctors in four hours and drawn multiple veils of blood. We waited in the office to hear back from the sleep center. The nurse coordinator came in laughing. There was a cancellation and we had the spot for Elsa. David and I quickly arranged for transportation to the sleep center and to the hotel to grab his belongings. There was only room for one parent to sleep. David would go with Elsa and I would stay at the hotel. We kissed each other goodbye in the hotel lobby and said we would see each other at the airport in the morning.
I’m chuckling to myself as I write this post. It was a whirlwind, not a gust, that took a long six month or longer process to have Elsa on growth hormone. It took less than a week for us to find a team of providers to care for her. It took another two weeks for insurance to deny, then approve growth hormone. A week later, the result of the sleep study came back. Elsa was in the clear to start growth hormone and she would not need oxygen!
My pediatrician, physical therapist, occupational therapist, and speech therapist all said the same thing. Someone must have been working this all out. And yes, someone was working all these hard days into something good. God was showing His glory to our providers. He was showing us His glory in taking Elsa into his hands. He was answering prayers. We trust in the Lord, even when we suffer. We commit ourselves to the Lord, even when it seems unclear and questions fill our heads. And like a breath of fresh air, our wills align, to bring Him glory.