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.

 

 

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Prader willi, Uncategorized

To: Friends and Family From: Mom of a Special Needs Child

This isn’t the way I intended life with kids. I didn’t think I would be traveling day six of my infant’s life. I didn’t think I would be in and out of the hospital while questioning the decision to have another baby. I didn’t think I would be running from doctor office to therapy visit to picking up a toddler from preschool all in 3 hours. It’s just not what I thought it would be.

Life used to consist of entertaining toddlers. It was park visits, gymnastics play, beach combing, and play dates. And some, if not most of life, is still made up of these special moments with toddlers. It is now intermingled with a strict feeding schedule, office visits, specialist appointments in different states, and scheduling in daily physical and occupation therapy for their special needs sibling.20180731_080344.jpg

Please give me grace. Please excuse the unanswered text messages, phone calls, and emails. Please excuse the tardiness and slight inattentiveness. I’m working with multiple calendars of a child’s school, family events, church activities, doctor appointments, therapy visits, work schedules, and a small amount of “me” time. My plate is overflowing.

My head space is usually filled with the “what next”. It’s constantly looking at the clock. It’s thinking of every small move my baby makes, looking for cues of discomfort, happiness, any emotion she can barely muster the strength to express. My mind is anxious more often than not. Am I doing enough? Could I be using the awake hours more effectively to help her more? Did I pay that bill? Did I pack him a lunch? Did I brush my teeth?

I would love to have time for play dates, baby showers, church small groups, and coffee with new friends. It’s just not my seasIMG_20180602_085310_930on of life. Instead, I entertain toddlers in doctor offices. My coffee cup is still in the microwave, and chatting with friends is more like chatting with my new bestie, the doctor’s office manager.

When you do see me, please take the initiative. I’m tired. My mind is usually racing from task to task. I want to catch up, but sometimes I’m lacking the energy. Please say hello. Even if it’s only for 30 seconds of conversation. It reminds me that I’m still me, that I still have friends even when I don’t visit much. A small gesture goes a long way in my world of little people.

Thank you to those wading the swift waters with me. Thank you to the Facebook group of friends I’ve never met in person who lock arms with me. And to the mothers who email from around the country to give hope. You truly are inspirational. Together it’s easier to walk against the current. Together it’s easier to grieve, support one another, and celebrate small victory.

Although the day to day is not what I imagined, I couldn’t have asked for more. My house is full. It’s full of love, hope, and yes craziness. Everything has its season. It’s just a stepping stone to another change around the corner. So friends, I’m still here. I’m just in this space. Be patient with me.

 

For everything there is a season, and a time for every matter under the heavens.” Ecclesiastes 3:1

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.

Uncategorized

A Hidden Gem

 

The curl of your eyelashes,

Ringlets of red hair at your ears.

The corners of your mouth turning up to smile,

The eyebrow lift of intention.

 

The glow in your eyes when discovery hits

Your pinky finger, no longer than an inch.

The soft quick breaths of air rising from your chest,

A big sigh of effort when trying your best.

Chunky thighs etched with needle pricks,

And growing toes making big steps.

 

Small movements yet, your eyes show me a bigger world.

You’re going to move mountains my dear.

A force of nature, strength beyond compare.

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Uncategorized

Life Lesson 1057…Self-Care

5:58AM, eyes half open to search for my glasses, I can hear silly giggles and stomping feet coming up the stairs. The boys are awake and that means the day has begun, full steam ahead. They are already asking for breakfast and looking for the Lego bin. Elsa is back to sleep after her 4am feed. David is getting ready for work so I subconsciously get a cup of coffee and begin working on breakfast for the boys. By the time it’s 7:30am everyone is fed, dressed, backpacks ready and I’m about to feed Elsa again before we head out the door. Oh but wait…I forgot my shoes, didn’t eat breakfast, didn’t brush my teeth or comb my hair. Somewhere in all the hustle and bustle, the crying, the throwing of toys, and kiss the husband goodbye, the mother is forgotten.

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My boys playing while I was away with Elsa

Recently I have a few friends who are either pregnant or just had their first or second baby. Pregnancy brings a large suitcase of hormones, tickets to a fast and furious emotional roller coaster, and a puke bag in the front pocket of the seat. A first baby means you deliver not just a baby but sleepless nights, ear plugs for crying, so many diapers, and binders full of new subjects to worry over. A second baby, well you still get all of the first but you add to the bookshelf a second edition of worry and volume two of sleep deprivation. Even if you don’t have a child with special needs, motherhood is rough. With the to-do list piling up and more humans demanding your attention relying solely on your care, it’s all too easy to forget about yourself.

Self-care is so important and it is one life lesson where I am still adding knowledge and experience. Lately, I see so many moms in my cycle of friends that might just need a little extra encouragement, a little nudge in the right direction, and reassurance that this motherhood gig is tough but so rewarding. Nothing in my life has brought me closer to Jesus, brought me to tears in prayer, and yet produced so much joy. Here is a little of what I do for myself that keeps me sane, keeps my mind growing, and ultimately makes me a better mom at the end of the day.

~*~

First things first. Taking care of yourself as a mother does not need to take up time. It does not need to be away from the kids and it does not need to cost extra money. It takes creativity and exploring the subjects that are interesting to you. Take a few minutes and brainstorm the things that you love to do and work them into your day as you can.

  • Hot cup of your favorite tea or coffee beverage: Okay maybe your drink is also in a beautiful fluted glass the color of red after 3pm.
  • Nap-time: I take nap-time very seriously. All of my kids nap at the same time for at least an hour. I take full advantage of this time to nap as well. With a baby in our house, sleep is limited and stress is high. A little extra shuteye for me is just what I need most days.
    • Might as well add to this by saying some nights I just need to go to bed early. Toddlers are notorious for early rising. My kids are no exception! If I want more sleep, which makes me a happier and more effective mother, I need to go to bed early.
  • Podcasts: I am definitely not an expert in media and computers but you can find a podcast on just about anything. I’ll listen to a podcast while the kids are having free play in the afternoon, while doing dishes, or while walking on the treadmill at the gym. It’s usually a sermon or a podcast from the Village church on knowing faith, topics of Christianity and debating current topics in Christian culture.
  • Time with husband: My kids are in bed for the night by 7:30pm every night. This time leaves room in the day for us as a couple. We can talk, read together, or just watch our favorite sitcom at the end of the day. This is great self-care but it’s also great for any marriage to spend some time together without the kids around.
  • Reading the Bible: My morning time is essential to my day. Most days it’s only five minutes that I get to read through a passage of scripture and short devotional. Other mornings I get the luxury of meditating on scripture and s pending time praying through a passage. IMG_20180708_193453_131
  • Crafting: Sometimes I’m able to multitask and knit or crochet while the kids are around and sometimes I do this once they have gone to bed. Knitting for the kids is rewarding for me and they look forward to what I’m making. This is one of my favorite yarns because it’s thick, easy to work with, and fast to knit or crochet a project. Currently working on a hat to match this blanket.
  • Books: I’ve been reading a lot lately. I read while the kids are playing, at nap-time, or after they have gone to bed. Maybe I only get a page read at a time but it’s something for me that will keep my mind engaged and keeps me growing in different areas of my life. Here are a few that I am working on at the moment.
    • Disciplines of the Beautiful Woman is a rare book that speaks Gospel truth in boldness. It’s an oldie but a goodie. I highly recommend this book!
    • Gross Motor Skills for Children with Down Syndrome is the current book I’m reading for Elsa. Although she does not have Down Syndrome, she does exhibit the same hypotonia. This book is perfect to demonstrate positions to help an infant reach their milestones. Super easy to read and to follow the pictures, I’ve been using this book often during our afternoon physical therapy sessions.
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Elsa sporting a bonnet I made

I think what I have learned from motherhood and taking care of myself is that it really doesn’t take much time or effort. It can be simple or it can be extravagant. Either way, it helps me be a better mom. When I’m stressed, at my limits, nerve about to snap, I’m not at my best. When I take the time to breath, to engage my brain in the things that I love, and remind myself that I have an identity outside of my children, I can mother them with more love. Our identity as mothers should not solely lie within our children. It’s crushing for them. Find the time and space to take care of yourself to love your kids more.

~*~

What do you do for self-care? Run, sew, shop, paint, cook? I’d love to hear your way to care for yourself in the comments and share ideas with others.