walking by faith...

(delayed in posting...this was written in February)

 "We walk by faith, not by sight." 2 Corinthians 5:7

 

Little man has begun a new venture... He's a big boy now, for certain. The day before Valentine's Day, Jude joyfully began to walk independently at nineteen months!

 

From the beginning, we've reluctantly held our breath regarding Jude walking and talking. These have been the two most significant obstacles that we've hoped for our little guy to accomplish.

 

In October we began a twelve week break from therapy so I could heal from Guinevere's birth enough to resume lugging this hefty boy to and from his appointments. It's often physically consuming to tote a boy who doesn't offer much help, and the third row back in our family van isn't the most convenient place for a car seat. The "time out" also proved a welcome relief emotionally from this "issue" and helped me to gain a new perspective for the days ahead.

 

 

Despite his diagnosis, his wobbling is surprisingly similar to any other toddler in this beginner's phase. While uncertain how smoothly his ability to navigate this coarse will be,  we are grateful for his desire, motivation, and ability to begin the process. We are also elated he doesn't require expensive equipment!  

 

His therapist, Ms. Nicole, hasn't missed a beat as she has faithfully and tirelessly worked with him this past year. Her selfless knowledge and skill in teaching us what to work on and how to acquire the optimal results have been such a necessary tool in this process. 

 

Walking may soon become a physical relief for Jude. His knuckles have sores from crawling on his fist and he has a nasty blister under the pointer finger of "righty." But he's delighted about his new undertaking. This morning upon wakening, one of our littles cheerfully announced he was strolling from one side of his crib to the other, clapping for himself all the way!  

 

Besides his brilliant aptitude, he's a clever little fellow. He's becoming quite the signer, using sign language as his most reliable form of communication since we've yet to cross over the "language hurdle." 

 

The best day of Jude's life happened several weeks ago when frigid January unexpectedly delivered a 75 degree day. We packed up his new Radio Flyer tricycle and headed straight to the park. We strapped him in, adjusted the tray, and made use of the grown-up handle by pushing him around the track for a good part of the morning. Then we sat him in the toddler swing and a little bit of heaven shined through those blue-gray eyes. He jabbered about it all the way home.    

 

Because of the history of tubes down his throat, he still chokes quite often. We've performed the Heimlich on Jude more than all the seven others combined. Still, the smallest of bites become easily lodged. This keeps me a bit on edge with each meal.  
 

 

Guinevere is beginning to recognize her big brother. She smiles with delight when he is near. He's exceptionally gentle, often patting her dark hair with "lefty." It's sweet beyond words to witness the budding of faithful friends between siblings. This, by far, has been the most joyous thing to witness in all our children. 

 

Over the last several months during the late night hours spent with a newborn, I've often pondered what the continual "letting go" of our lives and our rights has rendered. It's become a far greater blessing, a greater purpose than I could have ever anticipated. Around every corner, amidst the hard stuff, we continue to find a new level of joy, of purpose, as our faith is increased by His goodness. It most certainly isn't about losing anything. Instead, through the voyage, I feel as though I'm gaining everything.  ~Jen  

 

      

a baby sister...

 

 "Let everything that has breath praise the Lord."

Psalm 150:6 

Sweet Guinevere Pearl has arrived safely.  Weighing in at 7 pounds, 8 ounces, she is simply precious, very sturdy, and quite the noisemaker throughout the night. But, she is here. Praise the Lord!

We sincerely thank you for your prayers during this challenging journey of bringing her to term.

 

As many of you know, Jude's delivery was extraordinarily difficult as circumstances quickly turned, leaving him in critical condition. I too struggled as my heart gave us quite a scare. The lengthy recovery was also somewhat taxing. We made the grim decision that Jude would be the Olson caboose.

But the Lord had a different plan...and for me, it can be challenging at times to surrender and trust Him fully.

 

The early news of my pregnancy left me speechless as we were struggling over the threshold to digest Jude's recent diagnosis. There was deep concern if I would be able to  carry her to term after being conceived so soon following Jude's birth. There were countless prayers anticipating her arrival.  
 

Days before Gwenny's debut, she suddenly turned transverse. We were concerned because somewhere in that timeframe, Jude did the same. 
 

The night prior to her arrival, I was unable to feel her move so we went in to have her monitored. She was still in a transverse position but the monitor thankfully showed movement.   

 

Upon returning home and unable to sleep, I  spent the night making last minute preparations, writing notes to the kiddos, and praying, asking God to move this baby. He did. The following morning, just before surgery, her location was once again "head down."

 

The doctor  that we had asked to deliver her showed up five minutes before the scheduled surgery. We hadn't expected him because he rarely conducts C-sections. He is the chairman of the high risk maternal fetal medicine unit and travels quite a bit. We had learned the previous evening that he was in Chicago. As another doctor met us that morning to discuss the procedure, a nurse came in to inform us that our preferred doctor would be arriving minutes later. Smiles.

 

He has been referred to as a "genius" by the nurses who cared for me during my pregnancy. The measures he took to safely deliver Gwenny proved him so. His skill was remarkable and kept the other doctors and nurses occupied in awe as they attended me post surgery.

 

This time it was different. Though the surgery was extensive, the spinal went well and after the first 10 minutes or so, my heart rate returned to normal and I began to feel better during the procedure. Though I was prepped and ready, a blood transfusion proved unnecessary. Big praises.

Paul came in shortly before her arrival and this time, unlike before, we heard the sweet lullabies of our baby's first cries and just after her initial assessment, the nurse handed our swaddled little girl to him. She never left our side the entire hospital stay.
 

 

Our arrival home came much sooner than expected. The children had decorated the driveway and sidewalk in bright colors of chalk. A balloon adorned the front column as our seven other sweet blessings poured out the front door to greet their new baby sister.

Jude cackled as we introduced him, joyfully calling her "kitty." Our little guy has no idea how his life will be forever changed!   

 

I feel good. Gwenny is nursing well. We are grateful beyond words. 

 

We have much to be thankful for on this journey of learning to trust him. 

 

Many blessings,

Jen

          

you are mine...

“But now thus says the Lord, he who created you, O Jacob, he who formed you, O Israel: 'Fear not, for I have redeemed you; I have called you by your name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you; when you walk through fire you shall not be burned, and the flame shall not consume you.'” Isaiah 43:1-2

 Somebody is cruisin'! What a month!

Jude has been busy learning some new tricks. After months of sitting on his own, Jude finally learned the art of maneuvering in and out of that position. He also learned to scoot commando style which almost simultaneously led to a full crawl.

He's been super busy babbling his thoughts while his preferred treat is always a cookie! He loves airplanes and trucks with all the self-made sounds that scrumptious little boys like to make!

With a baby sister in the very close future, we're all eager to witness the new dynamics in store. We are counting down with excitement Guinevere Pearl's arrival on or near November 10th.

Thank you for your continued prayers for Jude's development and our baby's upcoming delivery. Because Jude (and mom) ran into some critical issues during his birth/C-section, Guinevere may need a bit more help with her entrance. However, it requires mama a more lengthy recovery. We covet your prayers.  ~Jen

      

 

when I am weak...

Let the weak say, "I am strong."  Joel 3:10

Today, upon arriving home, Paul told me he saw a boy riding his new tricycle. Only it wasn't just any boy. It was a 15-16 year old disabled boy. And it wasn't just any tricycle, but a special one big enough to carry such a boy. Even more special...his mama happily snapping pictures of him as he pedaled down the sidewalk for the first time.

We see them often. I'm sure just as many as before, only now, we notice them. We wave at them with big smiles of affirmation because their journey is different. These moms and dads had the expectations every parent has when they announced their pregnancy. They were just as excited as you were on the day of your baby's grand arrival.

But something goes wrong...something totally unexpected...something earth shattering. Their baby starved for oxygen that they just couldn't get. They struggled to take the breath that wasn't offered. They suffocated but remained alive. Intervention came...just too late. Too late to recover what was already lost.

Everything changes. All of the expectations of each awaited milestone fades away.

These months since his diagnosis have been challenging. I haven't met a day where I don't feel physical pain for Jude. Deep sorrow mounds up as I sit beside him during each therapy session while his better hand is being bound so that he will be forced to use the hand that doesn't work. He doesn't understand, spending more time fretting, trying to free the captive hand than attempting to use the one so severely impaired. 

Equally as tough is witnessing so many children enter the therapy gym each day whose limbs are distorted and mangled, unable to even stand. To watch a child shed tears (who so closely resembles my 10 year old son) as he tries to stand but can't even straighten his stiffened feet, simply breaks my heart.  

Then something special begins to happen. The relentless work and countless tears each child applies to attain the smallest achievement is met with such gratefulness. The 13 year old girl who learns to feed herself for the first time makes an imprint on my heart. The grandmother who faithfully brings her grandchild to every appointment tearfully buries her face into his as he embraces her after taking ten minutes to walk a few steps. Somehow, it strengthens me. 

The nausea I have experienced during this current pregnancy never subsided, so I remain on anti-nausea meds that cause me to feel groggy. As I'm learning to lean on God's grace, I'm realizing that I don't have to hold to the same standard during this unchartered season. I'm also finding genuine Christ-like friendships in those who have never even walked this journey.

I have an enormous appreciation for those treasured mamas who don't require me to keep the same pace. They have become a sweet breath of fresh air. I appreciate others who support and encourage me unconditionally. 

Paul doesn't mind that we order out most suppers. He doesn't mind that I crash with  exhaustion most evenings. He has a special grace when I feel I can't meet my family's needs like I did not so long ago. He joins me on grocery shopping trips and turns in early with me after the last child is laid down each night. Our once, relaxing summer vacations have slowly turned into sweet, short visits on the back porch. 
 

At 14 months old we've yet to lower his crib setting, but Jude is making his own progress. He pointed for the first time the other day. He waved good-bye. He hollered and batted with shear joy at the bubbles his sister blew for him. He signed milk. He grabbed his toes. He swatted at a moth while sitting in the grass. He shook off a June bug as it landed on his finger. All with his better hand, of course, but it made no difference. Each long awaited task causes us to stop and take in the moment. We all celebrate the achievement. We all celebrate for Jude.
 

The majestic smiles on his face show he's fully aware of his own accomplishments. I'm not sure what we thought we might be missing by raising a special needs child. Because it feels as though, for the first time, we aren't missing a thing.

I've never walked through a season so full of business. Having a young adult, teenager, tweenager, preteen, elementary, preschooler, toddler, and an upcoming newborn stretches me like never before. And yet, by God's divine and miraculous beauty, it's proving to be one of the most joyful seasons of my life!  ~Jen
  

 

the power of the powerless...

"God chose things despised by the world,

things counted nothing at all,

and used them to bring to nothing

what the world considers important."

 1 Corinthians 1:28

Recently, a special friend encouraged me with these words; "It's a hard road to have a child with so many medical and developmental needs. But God's grace is very particular, very rich, very real, and overflowing in loving kindness for their parents. I have known the love of God in unimaginable ways through my son. Trials open the floodgates of Heaven. We are in a special club." Thank you, Cynthia, for your heartfelt and much needed words.

One year ago, our family was making final provisions to leave our home for preparation of Jude's birth in Charlottesville. It's confounding to think we were clueless of the ups and downs this past year would yield. But we are especially grateful our little man was able to come home with us.

We are blessed. We get to kiss his squishy little cheeks. We get to hear his giggles. We get to smell his sweet little head and absorb all of those delicious baby moments that are each so cherished. We...brought him home! I often gaze at him with the painful knowledge of the rigid reality that we were so close to never knowing these treasured days we've enjoyed this past year. 

I can say his name bravely. He is here. And I am his mama. I have personally come to know other mamas that have grieved the hard stuff. They said good-bye way too early. They count up the days, the years, the birthdays. I know they would give every ounce of themselves to save every ounce of their little one, one thousand times over.
 

 

We are finding a world of assistance for Jude. There is aid from aquatics to equestrian programs. Jude recently switched to private occupational and physical therapy with the intention to more aggressively approach his developmental limitations. This type of therapy is unavailable in our home, as previously, and requires a huge commitment to be away so often.

 

Since he is suddenly growing so rapidly, his frustration levels have heightened. He's certain there must be some logic to his philosophy but falls short with the ability to make it all happen. He aspires to become more mobile, rolling across the floor to better reach his destination. Often, he becomes confused, assuming by rolling  he'll acquire things located on the table. Observing his little mind troubleshoot the obstacles can be doleful, but at least he's rationalizing a conventional result even if he's incapable of obtaining it.

Grasping a string for the first time after raking his hand over it a dozen, batting at a bubble, pulling out a peg, supporting himself on all fours, are all huge thresholds of accomplishment. Six times before, we glided over these minor tasks without a thought, but for our little number seven, they've all become great hurdles to overcome! Each step has taken weeks of therapy and many tears to attain. But the cheers of gladness from all who love him are something to behold. What a blessing indeed!

Raising a disabled child renders its own challenges. Days are many when I give it my best to pull myself together and find the required strength, but sometimes things  just don't work out. Sometimes the demands appear more than one mama can relinquish. I'm often without energy to complete the day. So, I am learning to give myself grace, room to breathe, one day at a time.  
  

Years ago I read a book by Christian Overman called Assumptions That Affect Our Lives. Chapter Fifteen is titled, "The Mysterious Power of the Powerless."  It reflects a story published in The Wall Street Journal, April, 1985, written by the brother of Oliver deVink.
 

Oliver  was born with a severe brain injury that left him a blind mute with twisted legs and   little to no intelligence. He lived in a permanent state of speechless helplessness for 32 years, unable to even lift his head. It read, "My family and I fed Oliver, bathed him and changed his diapers...we listened to him laugh and we listened to him rock his arms up and down to make the bed squeak...well, I guess you could call him a vegetable. I called him Oliver. He remains the most helpless human being I ever met, the weakest human being I ever met, and yet he was one of the most powerful human beings I ever met."

 

Christopher explains how he came to know the girl who was meant to be his wife. After bringing home other girls who showed no interest for his brother, he brought home a girl named Roe. He says, "I remember sheepishly asking Roe if she'd like to see him. 'Sure,' she said, and up the stairs we went. I sat at Oliver's bedside as Roe watched over my shoulder. I gave him his first spoonful, his second. 'Can I do that?' Roe asked with ease, with freedom, with compassion, so I gave her the bowl, and she fed Oliver one spoonful at a time. The power of the powerless."

 

Oliver's life had the ability to deeply impact the life of thousands after The Wall Street Journal published that story and, over the years, Oliver has touched my life as well. I've witnessed how God uses the weak of this world to do a mighty work in us who think we're without impairment, but are more impaired than we can imagine.

 

As Jude is approaching his first birthday, we've yet to  know the lengths the Lord will allow his abilities to reach. While Jude's diagnosis pales in comparison to Oliver's, I pray that Paul, our children, and I will be greatly affected for the better through this journey. It may be in the way we reach out to others with disabilities or the worthless chaff in our own lives each one of us will learn to thresh. Jude's life might even, eventually be what the Lord uses to help shape our children's worldview, directing them to an eternal mindset established in Him.                    

Yes, our lives have been significantly rearranged this past year, but we'd do it all again a thousand times over. Unconditional love is an amazing thing. We'd give our last breath for our children. They are a valuable, priceless gift, each one of them. ~Jen    
     

 

while he lay sleeping...

"When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you."  Isaiah 43:2a

 

Jude is approaching 10 months so quickly. Rolling around the room is his preferred tool of navigation. He is a clever boy already learning to sign. Huge smiles revealing lots of big teeth often delay us from completing our chores.

Though he is still a cuddle-bug, he is now bothered by our attempts to rock him to sleep. He strongly protests until we simply put him in his crib. Listening to music and hearing his brother and sisters sing to him always delivers sheer delight.  

For now, he is just a baby. Today, he is innocent to all that is occurring around him. He is unaware of his physical limitations that accompany a lifetime of overcoming. He's unconscious to the fact that many in this world despise the disabled, the helpless, the "useless." He doesn't know that Dr. Phil, along with many Americans, advocate for the disabled to be annihilated.

And just yesterday, a routine neonatology follow-up for Jude to determine his development productivity, left me spent as it lingered into a two hour discussion regarding his future. Through a series of reflex tests and examinations, Jude was formally diagnosed at nine months with moderate hemiplegic/quadriplegic Cerebral Palsy.

We didn't anticipate it so soon. Most CP children are diagnosed around the age of two. It was a blessing however, because our share plan couldn't begin publishing his medical needs until diagnosis was affirmed. It is real. We have boarded the train.

Along with this appointment came more hard news. Jude may become deaf. I was unaware that CP children are at risk for this. Depending on the depth of the brain injury, medications administered in the NICU, and ventilation insertion in infancy, hearing loss is a possibility. Jude is a candidate.

Right now, while he lay sleeping, I wonder if, when, and how suddenly this all occurs. Would he remember the laughter of all his siblings together, joyfully frolicking around him? What about the sweet sound of his own voice as he cackles out loud with excitement when they include him in their delightful affair of singing, dancing, and playing?

Could he ever tolerate such bleak silence after knowing the sweet sound of music playing and the voices of his family singing cheerful baby lullabies throughout the day? What about the sound of peaceful hymns that bring a concentrated stillness to his spirit as he listens in awe? Or the sound of the whirling wind or springtime songbirds chirping with glee?

Will he be old enough to remember my voice and how it sounded when I whispered, "I love you, Jude?"

 

The seesaw of hope can be exhausting. Eleven months ago, we were preparing for a child with CDH. Now, that same child is dealing with a completely separate diagnosis.

Just recently, on the threshold of all that is currently happening, came the unexpected news of another baby. Despite the medical advice to terminate, we have chosen to trust God with the outcome. While we are thrilled about the hope of another baby, we have reason to be concerned about the pregnancy and delivery. 

 

I'm reminded of Corrie ten Boom's testimony of a train ride she once took. She was very scared to take a trip due to the fear she had of trains but she traveled with her father and enjoyed the trip completely. Her father asked her, "What happened to your fear?" "Oh, I wasn't thinking about being on the train," she replied, "I was thinking about being with you."  

 

During these challenging past eleven months, God has led us to face some hard realities of life. But He alone knows where we would have been if He had not sent these trials. So, I can say without doubt that this journey is for our good and ultimately for His glory.  

 

We are grateful for your prayers during this season of uncertainty and, Lord willing, we will celebrate the precious life of another Olson the first week in November.  ~Jen

 

 

a round of applause...

"Oh clap your hands, all you peoples!
Shout to God with the voice of triumph." 

Psalm 47:1

The month began with Baby Jude graduating to his big brother's upstairs bedroom. After a huge endeavor that was long overdue, we purchased a new bed for sister so the crib, once again, was made available. Brother John had patiently waited 10 years for this event. I'm unsure if it was the particular timing, hormonal activity, or the combined circumstances of his disabilities, but Mama didn't rest easy that night. I slept in three different places, none of which were my own bed.

 

Jude survived. John rose up early to greet little brother with cheerful smiles. It took Mama three more nights to adjust to the sudden emptiness of the pack-n-play in her bedroom.
 

Physical therapy has finally begun and Jude fusses during much of each session. He strongly disapproves of "tummy time." He prefers lying on his back to play with his toys. Unable to support himself with his arms, he's unsure of what to do. No matter how many times we place him in the correct "tummy time" position with elbows bent under his chest, they quickly find their way back to his sides. The therapist stated he may not be aware that he has them. Sigh... 

 

We work with him approximately two hours daily while therapy is generally once a week for one hour. Fourteen therapy hours per week can be taxing for Jude.

 

February 17th, Jude contracted the RSV virus. It is highly contagious and appears to be the same symptoms of a bad cold but more serious. For children under the age of one, hospitalization is usually necessary. By Friday, Jude was really worn down and having trouble taking a breath. In five degree weather, we drove to the closest ER. Jude's X-rays revealed pneumonia in both lungs and RSV was confirmed. Several hours later, after drinking all of his milk, he began to perk up so we were released to come home and instructed to bring him back if he began to turn blue. (I know??)
 

Once home, however, Jude continued to struggle. He became less engaged and unwilling to eat. Though he never turned blue, by Saturday dehydration and lethargy had set in. His pediatric doctor proved little help so we switched offices that day making phone contact with a new doctor. Once we introduced Pedialyte, he began to improve quickly. Monday morning we saw the new doctor and Jude was prescribed breathing medication.  

 

I can't say we have ever worked so tirelessly to keep a baby alive. If I had to do it again, we'd go to the Children's Hospital. RSV can be very serious for kiddos with impaired lungs or compromised immune systems. Though our other children also contracted it, their symptoms weren't as serious. 

On a brighter note...
Jude's x-rays revealed that his once, extremely impaired left lung has fully developed. This wasn't expected to happen until the age of 2, so this  is entirely remarkable!   

Our therapist recommended an eye appointment to determine if Jude's tracking was off. After seeing an ophthalmologist, it was confirmed that he did not need glasses at this time. The bridge of his nose is wider than usual giving the impression that Jude's eyes turn in upon certain angles. Learning that he would not need glasses brought an indescribable heaviness as glasses would create a "quick fix" for some of his issues if they were indeed necessary. But long term, the fact that he doesn't need glasses is very good news because it indicates that Cerebral Palsy is not impairing his eye muscles. 

Just two weeks ago, upon turning 8 months, Jude at last met another milestone. He flipped from his back to his tummy several times. Out of sheer excitement, he clapped for himself for the very first time. It was so rewarding to witness his little happy hands trying to figure it out. With the brightest smile, his left hand gently patted his right fist. It was so precious to see his little mind working correctly despite his vast physical limitations.  

In that sweet moment, I had a glimpse of how the Lord must see us. We are all impaired in more ways than we are finitely aware. In our own strength, apart from our Father's will, we are all gravely handicapped. Yet, as we learn to solely rely on Him, He showers us with a waterfall of infinite grace, allowing us to overcome our obstacles for His glory.

Jude brightens our days as he joyfully discovers with triumph the abilities he has been given. We are eager to see what the Lord has in store for him in the days ahead.  ~Jen