Friday, December 23, 2022

Glory Days

These are the glory days. I hold Wylie to my chest. I stare at her profile. I peer into her eyes. I clasp her plump feet and toes in my hands. I kiss her cheeks. I kiss her hair. I kiss her forehead. I kiss her knees. I kiss her hands. I take and take and take her in over and over and over. Time with her is so precious. 

Because I know. I read the posts and see. There are so many moms just like me who held their children in adoring affection and now cannot hold them in their arms. Graves are filled by the most terrible, vicious enemy and the victims survive robbed and maimed. 

I pause sometimes. I know I make an assumption that she will die before any of the rest of us. I cannot know that, so I correct myself and remember that not one of us know how long we will have on earth. We do not know the end. We certainly and truly only have the present. 

So I look into all their eyes. I touch their hair. I give big hugs. I pray and pray for mercy. Time is fleeting, but real things happen in it. Things that when remembered bring courage and comfort and happiness. And so many of the real things are so ordinary. I cannot despise the ordinary.

She is here. She is fulfilling her purpose and we get to be here for it together.




Wednesday, September 21, 2022

Time to Think



Thinking. We say, "Give me a minute to think about it," and "What was I thinking?!" As I have aged, I have noticed that thinking takes longer than a minute and I ask the second question much more frequently than ever before. I cannot multitask at all, and at times, single-tasking is quite the challenge!

That is why I am so thankful for God's wisdom, which my friend Rich pointed out to me once, is always practical. As you can imagine, learning to live our new normal with Wylie is new and not normal, so I have noticed my ineptitude and weakness everywhere! Do not pity or try to reassure me about this, though. All that I am NOT has paved the way to dependence, trust, and reliance on God who IS a worthy Support.

I have asked Him about Wylie's schedule. I have asked Him about homeschooling Neva. I have asked him about going to Bible study. I have asked him about my college and college-bound children. His answers have surprised me almost every time. 

We deferred school services for Wylie this year since she already has five therapy sessions a week and is homeschooling with me. For Neva, rather than sending her to a cottage school we thought would be perfect, He provided a saintly fellow homeschool mom who has invited Neva into their home two days each week. To a Bible study outside the home I have done for years, He said no. For my older children, He has given me the grace to be present and to pray. All these answers, though, have culminated in one over-arching way--having more time to think.

There are many quiet moments. I am not rushing or hurrying. I can consider, ponder, and wonder. This is a pleasure to me. I am thankful to God for this gift--an answer to a promise Jesus makes in an invitation I hope you have heard. If not, let me share it here:  "Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me; for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light" (Matthew 11:28-30).

At our recent Simple Church retreat, we considered how being the church is really about following Jesus which is ultimately a way of life. One aspect we concentrated on the most was pace. We watched a short documentary called, "Godspeed." N.T. Wright is featured and he posited, "Sometimes we have to slow down to catch up to God." 

God's answers have slowed me and given me time to think and to pray. You can come to Him and ask, too. His invitation is for everyone!


Friday, July 15, 2022

A Friend Loves at All Times

Friends, the breeze is gentle these days. I watch the backyard leaves flutter and loop in the air's caress. Their green is shiny and playful as they tumble back and forth tethered by their slender stems--all that life on one limb.

Under the shade of those trees, Wylie welcomed two friends--ones we've heard about her whole life and who have encouraged us in our journey with Trisomy-18 but had never met in person.  Amazingly, that changed! 

Our three little miracles checked each other out on the play mat (a Trisomy-18 favorite) and even splashed together in a tepid hot tub. What a sight!  Their moms and I shared stories, laughed, and enjoyed the time. They were so kind and gracious to accept the invitation, make the trip, and get their sweet kids out to meet! 

Trisomy-18 automatically gives us so much in common. We know the juggle of appointments, therapies, advocacy for our special-need child alongside the balance of caring for other children, spouse, household responsibilities, and getting SLEEP. We have endured crisis situations many times and have scars that remind us of those battles. So time together, a little break from the work and norms of life, matched those balmy breezes. How refreshing and pleasant! 

This peaceful playdate experience occurred on the same day and served as a backdrop for the handing down of the SCOTUS decision. Imagining us like leaves on the backyard trees makes me think that our political climate along with inflation are like storms shaking our branches. The wind seems like it's going to rip us right off the branch. Our loss of control and the swirling can terrify us soul-deep. I'm thinking of you in this, friends. 

Are you holding on okay? Would you let me know if you aren't? 

In the same way that the Trisomy-18 friends’ camaraderie strengthened and encouraged our hearts, being present for each other as fellow human beings making our way in the world meets a need we all have no matter our politics. 

We can be in this together. Each of us being a person automatically gives us a lot in common. We can sit on the back porch and talk. We can share our stories and remember that we are not alone at all. 



Monday, June 6, 2022

In Celebration of the Berry Bush (And Other Important Things)

Note: I meant to publish this in November of 2021 but apparently I never hit the "publish" button. I thought I would still share it.

As you can imagine, my life is very full--like a river overflowing its banks full. I love that my days are filled with people--such special people. I am really amazed by all of them. Gavin and the children, Wylie's caring nurses, her skillful therapists and doctors, our friends, the people at co-ops, schools, basketball--I am RICH in relationship. 

I do not want to miss them. I don't want to be distracted, hurried, haggard, and burned out. I can see myself often choosing the small, the safe, the least risk. While boundaries are important for wholeness and wellness, walls of self-protection and control can shut real life right out.

So, I asked my friend Ellen Martin to coach me. She is a life coach. (Link here). Wow can she get to the heart of the matter and quick. She is amazing! During our first official session, she asked for some agreements that could increase the efficacy of our meetings. One was whether I would take responsibility for my weaknesses. That was an easy one--of course. The next was not so easy. "Are you willing to celebrate your victories?"

Hmmm...why was that hard? Well, I realize that I mistakingly believe that I should not have weaknesses in the first place.  "I really should have already learned to be on time," or "Really?! Disrespectful/rude/discouraging/critical again?!" Overcoming these weaknesses is just the bare minimum; no cause for celebration here.

Well, except for the fact that I am a Christian. As a follower of Jesus Christ, I know that some stunning transactions have taken place. At one time, my spirit was dead. I was unable to know or to respond the love of God in Christ. The weight of my sin rested on my shoulders. My greatest hope was to become the best version of myself that I could produce. 

Then, I was born again. The Bible describes it as having a heart of stone removed and a heart of flesh given in its place. That heart of flesh leads me to see God, hear Him, respond to Him without the conviction of my sin sending me running to hide my shame. In fact, this transaction is so scandalous Jesus describes Himself as a lover where I can say, "My Lover is mine and I am His." 

Ellen led me to write and post the following words in places I will see: Christ in me is worth celebrating. I in Christ am worth celebrating. Then she asked me to speak the words aloud. I barely croaked them out past the lump in my throat.

With the words before me on a regular basis, I notice my resistance to jubilation. I am serious, business-like, efficient, busy, often frustrated and irritated if my goals are blocked. I do not even feel badly about being a party pooper. Every party needs a pooper! I'm fine to fulfill that role.

Yet, Thanksgiving Day added an exclamation point to my celebration lesson. Our Suburu Legacy careened off Interstate 75 after being hit in the rear by a pick-up truck. Wylie, Neva, and I found ourselves unharmed covered in red berry juice from the bush that cushioned our impact. I will never forget looking into the backseat and seeing those two precious sets of eyes looking back at me. 

"We are ok. We are ok. We are ok," I repeated to Neva as she begged to go home over and over. We got out of the car with the help of those who stopped. A state trooper arrived first, then the paramedics, police, and firefighters. The other driver and his dog were safe, too.

But you know me, I wondered, "What does it mean to be ok? What does it mean to be safe?" There is actually a lot more to life than these two measures. Would you agree?

Maybe I could have yelled truer things to Neva like, "We are loved, Neva. We are loved!" or "We have more time, Neva! We have more time!" "This is not the end, sweet girl! This is not the end!" I am seeing much more cause for celebration than not. I want to kick my humbug spirit to the curb and get on with the party. How about you?




Monday, May 23, 2022

All of Life

 


Today was a poignant example of holding both things:  joy and sorrow, hope and melancholy, smiles and tears. I considered the truth of it--how we are always holding both.  I remembered the way Solomon put it, "For everything there is a season; A time for every activity under heaven," and also Dickens, "It was the best of times, it was the worst of times." Also, in the same verse, the Bible leads us to both "rejoice with those who rejoice and weep with those who weep."

Two children with Trisomy-18 died this week.  One was a four-year-old boy named Dane and the other was a seven-year-old girl named Twila.  I have found few words to describe the experience of being in a community where so many children die.  To add to this, the majority of them die suddenly.  I was rejoicing with Dane just two weeks ago as he was tolerating respiratory weans from his vent. 

At the same time as tears rolled down my face as I grieved for these families, Wylie looked at me with her little gopher teeth and a grin big enough for the whole world. I thought my fellow Trisomy-18 momma got it right when she wrote, "That's all we can do is continue taking care of God's precious diamonds, till he decides its time. We all serve great purposes bigger than we all can even imagine." This mother has an extraordinary perspective and is one of our trisomy community's biggest cheerleaders.

While there is time, there is every activity under heaven. Some day there will be no more time and no more "under heaven." Through Jesus Christ, a gate is opened into the eternal. Some activities will cease when the world as we know it comes to an end: dying, mourning, killing, warring, weeping, destroying, shaming. I can barely imagine what that will be like.

Dane and Twila have left time. They have now entered a place where suffering and illness have ceased. Mourning trisomy parents often refer to their children's death day as their "best day that became our worst day." Mothers, fathers, sisters, brothers, aunts, uncles, grandparents, friends are stuck in time and left to mourn and mourn and mourn. And how could they not? Surely, as my friend stated, Dane and Twila are God's diamonds--precious, rare, and exceedingly valuable.

What are we to do? There is one thing that we can do here that we cannot do in heaven. We cannot have faith. When time stops, we will have full sight. "We will know as we are fully known." 

The opportunity to exercise faith thrills me. "Though [I] have not seen Him, [I] love Him, and even though I do not see Him now, I believe in Him and [am] filled with a inexpressible and glorious joy." Demonstrating faith fulfills my purpose as a human. God is honored by it and I am fulfilled by it.

I lift my faith to God as a gift. He has given me an unspeakable gift in Wylie and I give Him my belief. What better way can I spend my vapor of time than to glorify Him with my trust? Though for a little while we will suffer many trials and troubles, we are on our way Home to experience uninterrupted joy with our God and one another.

Saturday, April 30, 2022

With My Girl

Something like angst visits again. I feel impossibly tired. I lie down and do not sleep. Wylie has not slept at all either today. I call her the Energizer Bunny and she grins with her whole face. 

The house is quiet as all the Duersons except Rosie, Bunny, Wylie, I are out. It's the seventh inning stretch of the Lexington Catholic baseball game as "Take Me Out to the Ball Game" plays over the speaker just over the fence of our backyard.

This place. This time. So familiar and yet, on days like these I realize that I am not home, yet. I will find no proper food, satisfying activity, or thirst-quenching beverage. The place for which I am made lies further away in time. I am left to plod on toward that Day.

Plodding is just about all I can manage these days. I have no zip in my step or twinkle in my eye. I've stopped "trying." 

The days leading up to Wylie's surgery to release her spinal cord were hard. I didn't realize it until recently. She was barely sitting at all. She wouldn't even let us hold her in our laps or arms. She must have been so uncomfortable!

I still helped her along in every appointment as the therapists and I would be creative in offering assistance in what she could do. I exhausted myself with all the trying. It wasn't until after the surgery as I witnessed Wylie healing that I learned again from the most winsome teacher God has ever made.

Wylie felt badly after surgery. She threw up. She thrashed around on her bed. She whined. She fussed. She whimpered. She let us know. She didn't hold back or "try" to be okay. We gave her meds, patted her back, prayed, problem-solved, and brought her home. She immediately fell fast asleep in her crib.

It occurred to me that Wylie doesn't ever "try." She just is. Her life is an expression of full trust and acceptance. There is no "be brave," "practice kindness," "pay it forward," with Wylie. How is it, then, she is so inspiring without ever "trying" to be so?

Maybe it's something like God offering invitations to experience abundance and fullness through Wylie's life. Her groans challenge, "Hey, would you like to minister to someone who may never really be able to say, 'Thank you' and find more satisfaction than you thought possible?" Her smiles exclaim, "Do you want a glimpse of pure joy? Here it is!" Her resilience proclaims, "Would you like to meet someone who rests in the love and grace of God and perseveres in the most difficult of trials?

Her life invites me to just be. Be where I am. Be who I am. It's in this place and time of being that I can truly rest. I'm with you, Wylie. Thanks, big girl. 








Thursday, December 30, 2021

Birthing Glory

As my body cycles in its feminine glory, I find my thoughts and feelings moving with its rhythm, moving me to come here and write to you. I have been on the verge of tears for days. I think my weepiness is connected to my hormones and the time of year. As I remember the best birth story, I remember other birth stories that find their place in the Christmas one.

Mild he lays his glory by
Born that man no more may die
Born to raise the sons of earth
Born to give them second birth

Sometimes my body shakes like it did when I was preparing to have Wylie with all the big emotion and questions swirling around--palpable. Her birth was alien, so different than my natural labors with her brothers and sisters. Hers was holy and shocking. 

I had never had an epidural. I had never had a c-section. I welcomed them, though, as that was her way to our arms. I panicked with the medicine and felt so badly for days from the surgery. I needed a wheelchair and used it much longer than I ever imagined I would need it.

Though so tiny, her weight was glory--God's glory all over her and in her and through her. I walked around stunned. I was dumbstruck. I still am so thankful for Kristy Wheeler's poem about the day (https://karladuerson.blogspot.com/search?q=Kristy+wheeler&m=1) because words alluded me for a long time.



Wylie spent her first Christmas in the hospital intubated and struggling for her life against RSV. One of the nurse heroines encouraged me to go home on Christmas Eve and have time with the family on Christmas morning which I did. I remembering returning that afternoon to sit beside Wylie. I had called Mom on the way to help me get there. The depth of Wylie's pain and struggle was so difficult to witness.

If you have followed me here, you know that her suffering bore her much fruit. She gained so much strength through the tumult of her first ten months. And we all are unpacking the trauma of its wake--not her wake, the wake of the promised trouble.

"In this world," Jesus announced, "you will have trouble, but take heart. I have overcome the world." What a comfort to know that Jesus is bigger than any difficulty I have, am, or will ever face. I have been taking heart these days. 



So, in thinking of Wylie's birth story, I have considered Mary's. She had been visited by angels, overshadowed by the Holy Spirit, greeted by her senior cousin's unborn baby, smeared by her out-of-wedlock pregnancy, married to the obedient Joseph, ordered to Bethlehem, and birthed her first baby surrounded by animal filth. She did not have her mother, her sister, birthing help. She and Joseph must have been terrified. Strangers appeared. Prophecies swirled. Then they had to flee.

I wonder now how the birth trauma stayed with her. As her body mirrored the moon, as she beheld her firstborn, as his birthday neared, did she shake? Did a lump take up residence in her throat as she remembered His holy entrance? Because surely when the Son of God filled her womb and left it, she was never the same.

Pondering that reminds me that I am changed, too. When a baby is born, so is a mother. Each baby's birth holds a new birth for the one birthing. It all makes sense when I consider that I am only two and half with Wylie. I am just two and half years into this change. I still shake because the weight of glory is both terrifying and wonderful.

The Kingdom of God presses and we are the wombs that give Him birth over and over. So, "we all, with open face beholding as in a glass the glory of the Lord, are changed into the same image from glory to glory, even as by the Spirit of the Lord." (2 Corinthians 2:18). Through His birth, we are born anew.

Glory to the newborn King!




Saturday, May 8, 2021

Happy Two Years Wylie



We moved two months before I found out I was pregnant with Wylie.  Our new home has been such a blessing!  Wylie has a stander, activity chair, oxygen supplies, a vent, etc. and there is room for that equipment and us!  I cherish that this home holds all that we have known of her.  

I remember when I first held the secret of being pregnant.  After three miscarriages, I could barely hope that we would care for baby on this earth again.  Then when we learned that Wylie had trisomy-18, the hope became almost unbearable.  I imagined walking into the entrance of the Lexington Cemetery much more easily than seeing a baby wear the small bundle of clothes we had gathered, or kicking in the little crib Devan gave us.  Impossible.  It all seems so impossible.  Even now.  

But she did come home.  She has filled the clothes, outgrown the mini crib, bobs in the bathtub, gets lots of snuggles from her siblings, and can move room to room without her oxygen tubing trailing behind. Now First Steps therapists are visiting weekly coaching us as she grows and developed.  Now she has two wonderful nurses that come alongside us during the weekdays, so Gavin and I can also attend to the other children and responsibilities.  

Now Wylie is two!  One thing has not changed.  We celebrate the now.  We honor her two years of peril and victories--her quiet warrior spirit that has slowly and steadily gained strength for her body.  We are grateful to have all this time at home.  Not a day passes that I don't remember how we got here--got home.

For Wylie's second birthday, we would like to share about the Pediatric Advanced Care Team (PACT) at UK KY Children's Hospital.  They have walked beside us every step of the way from my first high-risk OB appointment, to a recent photo shoot arranged by a partnership with PACT and Walden photography.  

In the beginning, I did not understand how exceptional PACT is.  Now that I am more acquainted with other Trisomy 18 families, I realize that we have amazing advocates in them.  Many families shoulder the burden of having to navigate the medical system and trying diagnoses alone.  The doctor, nurse practitioners, chaplain, and social worker with PACT showed up for us (every admission often as soon as we came to the ER), explained procedures (the benefits of the G-tube surgery and her heart repair), stood beside us (that night she had three chest tubes without a clear path forward), solved problems (securing a vent for BiPAP at home, helping with hospital bills, and applying for a medical waiver), held our pain, our hands, and hope. 

PACT is such a crucial group to have at the hospital for families like ours.  As you can imagine in these trying times, they could be considered a step away from "essential."  They are not actually administering medicine, or completing medical procedures, but they are doing something that is so very necessary:  serving as mediators between patients with their families and medical staff.  They are spectacular!

Please consider making a donation to PACT in honor of Wylie and the ways they helped her get home!  Follow this link and clink "DONATE TO PACT."  Thank you, Warriors, for considering blessing families in need of PACT's help in Wylie's honor.

https://uky.networkforgood.com/projects?utf8=✓&search_string=PACT#

 We give thanks to God for Wylie and we praise Him for being the author of all that is good!

"Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change," (James 1:17, ESV).



Monday, December 14, 2020

Terror in Darkness

Emma started an Instagram page for Wylie aptly named Wylie's Warriors if you are interested in following her.  Upon the first post, a woman reached out who is pregnant with a son who has trisomy 18 like Wylie.  In an instant, I can remember being pregnant.  The waiting and wondering are seared into my memory. I sympathize with this mother's desire to connect with parents who understand the wait and the weight.

This, of course, points us to the season through which we now travel--Advent which means "coming." We wait because there is Someone on His way, something getting ready to happen. Pregnancy and Advent have a lot in common.

Three years ago, I purchased Cindy's Rollins' Hallelujah: A Journey through Advent with Handel's Messiah, and I will never be the same.  Her little book guides an observant through the Scriptures of the Messiah. Through her guidance, I have begun listening to the Messiah each Christmas time.  

As I have listened, two paradoxes have stirred my thoughts.  One, the God of peace terrorizes people and two, the God of light emerges from darkness.  

    Behold, I will send my messenger, and he shall prepare the way before me: and the Lord, whom ye seek, shall suddenly come to his temple, even the messenger of the covenant, whom ye delight in: behold, he shall come, saith the Lord of hosts.

    But who may abide the day of his coming? and who shall stand when he appeareth? for He is like a refiner's fire...

Yes, certainly!  When the Lord of Hosts announced the good news of Jesus' birth, the shepherds fell down in terror!  The idea of a furnace is fitting.  Who could stand up to the searing blast of a smelter's flame?  No one, not one could stand upright in the face of such blistering heat.  

He is terrifying this One announced, "Savior, Christ the Lord."  He upends kingdoms. He confounds earthly rulers.  A baby born among animal filth, dreams of fleeing, and a whole town of slaughtered little boys mocks "Silent Night."

More...

For, behold, the darkness shall cover the earth, and gross darkness the people: but the Lord shall arise upon thee, and his glory shall be seen upon thee. And the Gentiles shall come to thy light, and kings to the brightness of thy rising.

Out of darkness, gross darkness, comes Light.  He functions in the darkness.  His Spirit hovered over the darkness when there was no world yet.  He came to Abram in the darkness, pointed to the heaven's stars to exhibit the extent of His blessing, and sealed His promise while Abram slept. He rescued the families with the lamb's blood over their doorframe during the night of the first Passover.  When Jesus hung on the cross, a thick darkness rolled over the witnesses.  Here, in this birth, darkness, gross darkness, but Light!

In this birth story, I can learn to embrace the terrifying One who comes in peace.  Though He is fierce and fiery, He is Peace.  When I am uncomfortable about facing the truth about myself, people around me, Peace has come.  Jesus is moving me toward reconciling the pieces to restore the whole. 

When darkness looms and even engulfs, I know Light is coming because even darkness is light to Jesus.  I say to the one who knows Jesus that you do not need to be terrified of His movement, His upending, or the darkness in which He works.  Embrace these paradoxes of our Peace and Light.  His way results in new birth.  Who need fear a baby? 


Wednesday, November 25, 2020

Basement Isolation Reflection




    “When [insert a certain circumstance] then [I will be happy, fulfilled, satisfied...]”

    “If only [insert a certain circumstance] then [I could live meaningfully...]”

These subtle whispers can rob reality right out in front of my nose.  Life is happening right now.  That’s it.  Yet, the zest and spice of life are allusive.  The mundane quotidian lulls me.  Sometimes I want to shirk responsibilities.  I back away from complexities and challenges. 
    
    “If only he would stop antagonizing his sister…”

I work a lot.  I do a lot.  I think a lot.  I take care of a lot of people.  I get tired.  I daydream sometimes about being alone.  
    
    “When all the kids are gone…”

Well, now COVID has brought me closer to aloneness than I have been in a long time.  No one is talking to me.  No one is interrupting me.  I have very few tasks to complete.  Strange.

The strangest COVID symptoms are those that have robbed my senses.  I cannot taste coffee.  I cannot smell chocolate chip cookies.  I cannot touch my children.  My vision was even affected for a day.

My friend said, “Taste, smell, touch--God gave us these to enjoy life.  When one or all are gone it really is a wake up to His goodness.

Well-put, my friend.  This world is an explosion of God’s breathtaking artistry--tree-lined mountaintop paths, a home-cooked meal, gifted flowers in a pretty vase, Wylie’s round little cheeks, and Neva’s brown silky hair. The world above in space, the world below in the sea, the world all around us on the terrain is remarkably beautiful.

How can I stay awake to that splendor?  How can I ward away dullness, ingratitude, and boredom?  One of our young participants on our Simple Church Zoom call suggested the end of Paul’s letter to the Philippians:

Rejoice in the Lord always. I will say it again: Rejoice!  Let your gentleness be evident to all. The Lord is near.  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 

Well, sitting in the bed for the fourth day in a row while listening to the hustle and bustle from above, concerning myself about everyone’s well-being without being able to lift a finger, and longing to cuddle and comfort my people, this brought me to tears.  I love it when children share.  

Even more, Gavin reminded us of the next part of the letter:

I rejoiced greatly in the Lord that at last you renewed your concern for me. Indeed, you were concerned, but you had no opportunity to show it.  I am not saying this because I am in need, for I have learned to be content whatever the circumstances.  I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.  I can do all this through him who gives me strength.

I will learn the secret that Paul did because just like my BSF notes stated this past week, "God intends hardships to draw us closer to Him, so we become content with His presence and provisions." So, “whether in plenty or want,” I will learn to be content and that I can do “all things through Christ who gives me strength.” I am in want in the basement.  Topside, I am in plenty.  Either way, I have Christ who empowers me to see, to touch, to taste, to hear, to smell His wonder-filled world, to truly live.

- Karla Duerson






Thursday, June 11, 2020

Beyond the First Year

Wylie's birthday celebrations were perfect.  We thank each and every one of you who made our joy complete.  The Zoom call and the drive-by party were amazing and fun.  You know our jaws are permanently dropped when it comes to our baby girl and the love she's been given by her Warriors.

We were able to have a family get-away immediately after her birthday with her physicians' blessings.  This was another dream-come-true for Daddy.  We all loved it, actually.  We began our drive with a prayer and the one on my heart was, "What now?"

We had dreamt about his milestone.  We had longed for it.  Imagined it.  Believed it impossible at times.  Yet, here we are on the other side of it.  Wylie is one year old.

The statistics...do you remember the statistics?  Only about 10% of children with Trisomy-18 who are born will live for one year.  Because of this, statistics for those who live beyond a year are not readily available.  The medical advisor for the Support Organization for Trisomy 18, 13, an
d Related Disorders stated that "once a child's age is great than a year there is a 60% chance to live beyond age 5 years," (SOFT Care Book for Families, pg. 11).

I remember when we were given this manual in the NICU at the time that Wylie's genetic disorder was officially diagnosed.  I opened it and saw the pictures of all the little faces with birth and death dates.  It was so overwhelming.  I was a puddle of tears and couldn't even speak to the geneticist.  I kept the manual but decided to open it only if I had a specific question. We would keep looking at Wylie rather than the black and white words about her diagnosis.

So, now what?  We are still in the middle of figuring out COVID-19 and have realized through her first year that most germs (especially the respiratory kind including even the common cold) have debilitating consequences for her.  What do we do?

On our trip, Gavin was out with the other kids.  Wylie and I were enjoying peace and quiet.  I love to be able to just sit and think, to ponder and wonder.  In this space, a heard God's whisper.  "She's living, not dying."

Yes, this has started to sink in even before those words.  We have been home for almost 3 months since Wylie's last admission.  We made adjustments for LIFE at home and LIFE with Wylie.  Gavin and I alternate nights taking care of Wylie and waking up to give her meds and first feed of the day.  The children all have household jobs that disperse the burden of chores.  We have a schedule for cleaning her equipment.  Someone is always by her side.  We are adjusting to caring for her LIFE.

Later, I was reading the Message paraphrase of the Bible.  I've really enjoyed that lately.  I'm reading in the book of Matthew and came to this story:

                 "Another follower [of Jesus] said [to Him], 'Master, excuse me for a couple of days,                        please.  I have my father's funeral to take care of.'
                 Jesus refused.  'First things first.  Your business is life, not death.  Follow me.  Pursue                      life.'" (Matthew 8:21-22)

So, with this whisper and these Words, the next step is life.  We are planning for life with Wylie.  We have signed up with a nursing agency to try in-home nursing three days a week in preparation for homeschooling next year.  We are working with an OT and PT to help Wylie get stronger.  Her pulmonologist and complex care doctor have a close eye on her to see what gains she can make before the next respiratory season.  We are still having to be very careful of all germs to protect her LIFE.

I think it's important that I admit to you, Warriors, that I feel tired, worried, overwhelmed, lonely, and put-out at times.  Here it is, though:  I don't stay tired, worried, overwhelmed, lonely, or put-out.  That's your prayers.  That's your love.  That's God.

Certainly, all these emotions are a normal and expected part of LIFE, but who wants to have them all the time?  Not me!  I am so happy that LIFE with Wylie is full in the most real, and best ways that we can hope for.

"Without oxen, the stable stays clean..." (Proverbs 14:4).

You know that that means?  With oxen, the stable is dirty.  With LIFE comes mess.  Bring it on, Guy Lewis, Emma Katherine, Kendall Marie, Beau Vincent, Geneva Lee, and Margaret Wylie.  Bring it on!












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