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?”

IMG_20180815_152036_878[1]
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.

IMG_20181023_061443_656[1]

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.

 

 

Advertisements
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

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.

20180727_101459.jpg

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.

rtc-snapshot-806638757.jpg_1530195069894
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.
20180720_084320
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.

 

Prader willi, Uncategorized

Survive or Thrive

The first time you meet your child is one of the best moments in life. So new, so naive, vulnerable, and reliant on innate instincts of the human condition. You would think motherhood would come naturally. You would think breastfeeding and understanding your babies every little noise would be instinct. If you’re a mother, you know this to be false.

Every child is different. I have two boys who came bursting into the world with personality and loud voices to tell me exactly what they needed. They were hungry for life. They were hungry for the world to be explored. Elsa came into the world quiet, subdued. She could barely take her first breath without assistance. She was too weak to cry, too weak to suck, too weak to tell me her needs. A doctor once told me an infant with prader-willi lacks survival skills and that was Elsa.

Back in my home it was a constant struggle to feed Elsa. Every three hours we would wake her small limp frame of 5lbs 15oz to force in her 50ml of pumped breast milk. She would barely open her eyes. She did not search for the bottle. Her small hands did not reach out in loving adoration of my touch. David and I had our techniques and skills of physical therapy to help her feed. We hold her chin and cheeks just right to increase sucking. We would stroke her neck to prompt swallowing. Tapping her bottle would promote her suck reflex. We would stimulate her with cold rags and deep massage to keep her awake. After 30 to 45 minutes she finishes a bottle and she was exhausted.

20180522_083054

I was referred to a lactation consultant for frequent weight checks and assistance with nursing. In the hospital I had a nurse try to assist me. I hated it. It was much easier with my boys who wanted to eat. They were starving from the beginning of life and have never let up! I nursed both of them for over a year. This time was so different. Elsa needed us to open her mouth for her. Even with milk dripping into her mouth she would not suck. I knew she was too weak to breastfeed. Once the nurse saw how weak and tired she was she told me I was right. My instinct with Elsa was right, yet again. I knew she would need to be bottle fed and I was very okay with that reality.

Every visit to the lactation consultant was dreaded. I knew Elsa needed to be bottle fed for her survival. She didn’t have a voice so I had to be that for her. We tried different holds. We tried a nipple shield. We tried a syringe drip on the nipple. She did nothing. She needed me to facilitate her suck. She needed me to facilitate her swallow. She lacked the coordination and motor control and patterns of suck, swallow, breath. She needed me to teach her how to eat. This was not going to be accomplished by breastfeeding.

After three visits with the lactation consultant and returning home to my husband in tears of frustration and feeling like I failed, I finally became bold. I told nurse I did not want to breastfeed. I told her I wanted to bottle feed Elsa and I was okay with this reality. I would continue to pump due to an overproduction of milk and wean from pumping after a month. I had painful plugged milk ducts every other day. I slept with pillows under my arms due to the pain. I took hot showers with deep painful massage over my breast each night. I would pump every three hours just to relieve the discomfort. I was so tired. It took over an hour to pump and feed Elsa. If not for my husband’s paternity leave I really think I would have had a mental breakdown.

I had eight gallon-sized bags of stored breast milk in the freezer by month one. From frequent travels with Elsa and stress I began to wean from pumping. After using my freezer supply, Elsa began drinking 24 kcal formula. I am so happy and relieved she is growing, not just surviving but thriving.

Breastfeeding is one of those hot topics in current affairs. Maybe because of the politics or maybe because of the push in our culture to be “all natural, clean-eating, and chemical and additive free”. I can’t tell you how ridiculous and frustrating this topic has become for a mother who has breastfed two children and bottle feeds another. We have all forgotten the purpose of breastfeeding. Is it not to sustain an infant’s life? Is it not to give our helpless and fully dependent child the food they need for survival? If one cannot produce breast milk, if one’s child cannot latch with a sufficient suck, what difference does it make if the child is breastfed? The real concern should be giving an infant food for survival. If that nourishment is from formula, then that infant will continue to thrive.

20180607_064353

Sure there is mom guilt. There is pressure from society and I know people look at me with a question in their head when they see a bottle. At this point I have learned to ignore them. I have learned that my daughter is growing and happy no matter what way she puts food in her stomach. I have also learned that I am in a better mental state not pumping daily. I am free throughout my day to enjoy my daughter. I can cuddle and play with her after she eats instead of pumping for 20 minutes. I have time to play superheroes with my sons. I can sleep for a five-hour stretch at night and partner with my husband to feed Elsa.

Not everything about motherhood is natural or instinct. Sometimes things don’t go as you planned. Mothers and infants need to learn from each other. Just as any relationship develops so does the relationship between a mother and infant. It takes time and it takes persistence.