Father, Son, Holy Spirit, Prader willi

Made for Another World

Have you ever stared at the mountains and wondered how they got there? Or watched the waves of the ocean crash on the sand as if they were speaking to you? Maybe I’m a little crazy, but I think this world is screaming to tell us something.

It was still midnight black outside as David and I sat on the chairs overlooking the ocean. The sound of soft waves came trickling into the quiet house before the boys were awake. After our first cup of coffee we finally started to talk to each other. David spoke of a sermon he heard on his way to work describing the fall of creation. If you don’t know your bible text, Genesis 1 through 3 describes our less than perfect record here on earth as humans.

David went on to talk about the way the pastor described the fall of creation. Adam and Eve, the first people created by God, sinned in disobedience by eating from the tree of life and began to know good and evil.  Because God is holy and without sin, he could no longer be in the presence of his creation that had sinned against him. There was separation between man and God. God, in his love, sent Adam and Eve out of the garden of Eden. In the garden there was complete peace between animal and man. The psalms tell us the trees and mountains speak of their creator. As sin entered the world, man was put against animal, toiled the ground for food, and no longer heard the groans of the earth crying out to God. 

Tears filled my eyes as David continued to walk me through the sermon he heard. Have you ever felt the weight of your sin? Have you ever wondered why we have to live like this? Why does it hurt so much? Then my mind turned to Elsa. She is only six months old, born with a defective chromosome and yet she can not even escape this world of sin, her sin. My heart hurt for us in that moment. The whole world is just longing with heavy anticipation for a rescuer. But who could be enough?

If we, as humans, are all separated from God through our own sinfulness than who is good enough? If you thinking you’re good enough, take a hard look. Are you really? Can you really do enough? Can I really do enough for Elsa, teach her, make her stronger, give her the right medications? No. It’s all just a chasing after the wind.

Psalm 14:3b says “there is none who does good, not even one.”  Romans 3:23 repeats this. “for all have sinned and fall short of the glory of God.”  

My mind went to think of Elsa and her intellectual abilities. We do not know what she can do or cannot do. She might be just as smart as her peers or she might have a lower IQ. Either way she still has the ability to know who God is and what he did for us. I thought more about why God would put a child like mine here on earth. Why would he make a child with so many complications, needs and attention, help and support here with us when he could have made a perfectly normal child? My heart was heavy again. My chest clinched with sadness for Elsa and sadness for our separation from our perfect creator. I looked out at the mountains now showing a whisper of clouds reaching up to an inch of light over the horizon. 

Can I just say here how amazed I am that the old and new testaments all point to Jesus? In my sadness over sin I read back into Nehemiah 8. After returning from exile in Babylon, the Israelites returned to Jerusalem to hear the Book of the Law. Verse 9  says Ezra read to them and they all wept. The Israelites felt the weight of their sin. I could relate. As David spoke and I looked out our window I felt like my sin was as tall and wide and deep as the mountains staring back at me. 

Nehemiah 8:9-11 continues. (Just a tip. Don’t take one scripture verse out of context. You will miss the big picture.) Verse 9 says Nehemiah told the people to stop mourning! He told them to eat, drink wine, share their food with the less fortunate, and rejoice. “And do not be grieved, for the joy of the Lord is your strength.” 

Let’s go back to the new testament. Romans 3 doesn’t stop at verse 23 either! It says, “for all have sinned and fall short of the glory of God”. You have to first feel your sin. Just like the Israelites did in the old testament. Verse 24, “and are justified by his grace as a gift, through the redemption that is in Christ Jesus.” We are declared righteous in the sight of God through the action of being saved by Jesus. Verse 25, “whom God put forward as a propitiation by his blood, to be received by faith.” And God put Jesus forth as an atoning sacrifice through Jesus death and resurrection for our sin to be made right with God. This is all done for us if we receive it in faith in Jesus. WOW!!

Okay if I lost you don’t worry. I have been mulling this over in my head for quite some time. I don’t always feel the weight of my errors in life. Mostly I don’t and I think mostly you don’t either. That’s why we are born in our sin. It keeps us from seeing our misdirected ways. Thankfully as scripture continues to tell us in both the old and new testaments that Jesus was born into this world to die on the cross to make atonement and be our payment for sin. This is how we can be right with God. This is why Nehemiah says we can rejoice. We know that even though we see our sin clearly we have joy. Our joy is in the Lord.

I may not be happy all the time, but my soul is joyful because I can rest in the Lord. He is my strength. Even in the fallen world that we live, I have joy. Even as I take Elsa to therapy, specialty appointments, and sleep studies, I have joy because I know this world is sinful but there is always more. There is more for me and there is more for Elsa. This world of sin is not our home. We were made in the image of God to be with him forever, in a new home without sin. This gives us hope. This gives me joy when I’m not happy or Elsa is having a bad day. She was not made for this world. She was made for heaven. And she will be perfect when she meets her creator. Oh what a glorious day!

“For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. For the creation waits with eager longing for the revealing of the sons of God. For the creation was subjected to futility, not willingly, but because of him who subjected it, in hope that the creation itself will be set free from its bondage to corruption and obtain the freedom of the glory of the children of God. For we know that the whole creation has been groaning together in the pains of childbirth until now. And not only the creation, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies. For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience.”  Romans 8:18-25

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Prader willi, Uncategorized

Which one is not like the others?

Your eyes are still glued shut but your ears are fully awake. It could be a mile away but a new mom has impeccable hearing for her newborn babies cry. You try to ignore the small sleepy coos. Once the babe lets out a deep throat cry bare feet hit the cold floor at 2am to soothe another helpless baby through the night.

I am all too familiar with crying needy babes at midnight. Nursing every 2 hours was what I expected when we added our third baby. I was ready for the house to be full of noise. I was ready to sit up and comfort her for hours just because she wanted to be held. I was ready for the car rides to school to be full of tears and ear piercing screams. Instead there was silence, heart pounding silence, watching for breath silence.

Elsa is not like others. Friends came to visit the first few weeks home and would ask how we were sleeping. How was she feeding? Does she keep you awake? All of my answers were not the common response from a new mom. She slept too well. She never cried. She was force fed. She was not hungry. She was not like the others.

Two physicians asked me questions that left me with a disgusted and probably rude face. I’m not sorry for my response at such on odd question after a diagnosis of prader-willi syndrome.

“Do you notice that she is different from your older boys?” The MD’s were probably asking out of respect and trying to lessen the blow of her condition with such a question. It bothered me. I’m not one to beat around the bush.

As I was trying to keep my two year old out of the office cabinet of gowns and tongue depressors I let out a scoff. “She is different in every way, in every movement, and in every life giving breath. How could she not be different?”

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Four year check up playing with equipment
We all knew what she had in those doctor offices. We all knew she was different. And I love every different part of her. With her small preemie size toes and tiny palms that can’t grip more than a woman’s pinky finger, the obvious to the unseen differences, I fully embrace with bittersweet love.

~*~

2am hit me with a cold breath of night air. That night I woke David as we listened to Elsa let out a small high pitched sound. She was trying to cry. Instead of dreading the surprise awakening we smiled at each other glad to hear she found her voice. We were thrilled she could muster enough energy and strength to express herself, even at 2am.

Most mothers in my generation feed on demand. When the baby is upset, milk is not far from its mouth. If Elsa was fed on demand she would not have survived her first two days of life. We feed on a strict schedule. No, she never breastfed. I can hear the shock and awe of some. She is bottle fed, and yes it’s all formula, a high calorie formula. There is no cry for food. There is no rooting with her mouth, just a clock that tells us her blood glucose needs food and her brain needs the calories to develop.

Elsa still sleeps in her crib by the foot of our bed. My boys were out of my room at two weeks of life. They made so much noise while sleeping I was up all night. Even my ear plugs did little to drowned out the sounds of them crying. The whole house knew the boys were awake. Elsa won’t make a sound, so much I near her crib to see her chest rise and fall with breath. She is almost 6 months old and still sleeps close by.

If left to her own devices, Elsa would lay on her back all day and all night. She would barely move her small frame. The weak muscles barely able to turn her head would not be curious enough to find a familiar face in the room. I work day and night, bath time, feedings, car rides, and sleeping to keep her stimulated and positioned appropriately to develop strength. Normal babies move with fascination of the world without excessive intervention. Elsa will look with desire in her eyes to move but jailed in a helpless frame of low muscle tone. Her emotions are freely expressed in baby blues staring you in the face, a shy smile struggling to emerge. Without the help of a gentle hand on her back she would not turn to see her brothers. Constant assistance is needed for Elsa to meet her milestones.

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We travel monthly for doctor appointments. Elsa could qualify for MVP status on our airline at 5 months of age. I carry her close to my chest through security, on the ramp to the airplane, and hold her tight as we fly into the air. Her eyes stay shut through loud announcements and the rough Alaskan landings. My friendly seatmates, without a doubt, will comment, “What a good baby you have!”. I politely smile and say yes, she is a great traveler. Inside, I chuckle to myself. Low tone babies will sleep peacefully if held. They melt into your arms with soft support allowing them to relax. She is so different than my boys. Crying on the ascent and descent of flights was typical. Lots of entertaining and snacks were necessary to keep them in the small airplane seats. Elsa really is a great flying companion.

Elsa is different. She is the odd man out. I love it this way. She reminds me we are all made with our creator in mind. A bigger than life, more diverse than our small brains can muster creator that formed us to resemble him. How big and how great is our God? Have we searched him and found him? I am reminded daily he is too big to comprehend in this life. We have all eternity to find him out, to know him more, and yet we will never get to the end of his greatness. Elsa is made in his image. She shows me and everyone else she meets a different side of our Lord. And she shows me God is working in our small, seemingly unimportant lives every minute and second of our days. With each rise and fall of her chest, she breaths the life God has given her. She is different and she is blessed. She is beautiful. And she is the Lords workmanship.

Genesis 1:26 Then God said, oLet us make man8 in our image, pafter our likeness. 27  So God created man in his own image, in the image of God he created him; rmale and female he created them. 28 And God blessed them.

 

 

Father, Son, Holy Spirit, Prader willi

Providential Hands

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! 20180723_075328

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 IMG_20180714_094133_302administering 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.