Better for Knowing Her

by Adriane of Our Story.


Greetings! My name is Adriane, and I am married to a wonderful guy, Nathan, who serves our country as a pilot in the Marine Corps. We have been married 8 years and lived in 5 different states during that time; we're currently calling the tar-heel state of North Carolina our home-sweet-home.

I was 26 years old when we found out that a second child would come into our family. Our first was 5 months old at that time; a pretty little baby named Sade. We were very excited at the prospect of having two little girls causing chaos and stealing hearts together. Our first daughter had been a very uncomplicated, run-of-the-mill pregnancy and delivery. I had lost a child from a previous marriage, so we felt very blessed to have her. We also foolishly thought that since I had previously undergone that painful loss, we were "in the clear", heartache-wise. I paid my life-lesson dues, right? No more sessions needed.

Although we had no reason to suspect a problem with this second pregnancy, I found myself feeling more anxious about this child's well-being. Just an under-the-surface uneasiness, so subconscious that although my husband felt the same thing, we never even brought it up. But I had a handful of sonograms done just to "make sure" that she was fine. And aside from my little peanut girl being in breech position, everything was.

Near the end of my pregnancy, we decided to have a procedure done to turn our baby - newly named Kylee - into the correct position. I was hesitant about it, but after repeated reassurances by my OB and with the thought of a dreaded c-section looming in my mind, we agreed to the plan. The version was done so quickly and seemingly-effortlessly that I laughed at myself for being so foolishly nervous.

I went into labor at 3 am on February 25, 2006. Nathan and I relaxed as the epidural took effect, chatting and dozing while we waited. We believed the labor was progressing like clockwork. Finally it was time; I cheerfully started pushing Kylee, eager to see her beautiful face for the first time. Looking back I realize that those were the last moments of what we refer to as our "former life"; a peaceful, carefree stroll through sunshine-filled days and sleep-filled nights. In an instant, everything changed. There was my OB, placing and internal monitor, pushing my bed out into the hall and shouting at nurses to prepare the OR. There were the nurses, scrambling to prep trays and equipment. There was the anesthesiologist, pushing meds and placing an oxygen mask. And there was the most horrible sensation of being ripped in half. Finally, there was Nathan, mirroring my look of shock and confusion.

"Come here, little girl" the OB said, and I expected to see a squirmy pink baby placed on the infant warmer to my right. Instead, I saw a tiny, lifeless, blue body. No, this can't be right. I watched as the pediatrician resuscitated Kylee, intubating her, and whisking her away to the NICU.



An hour or more later, when my involuntary, pain-induced tremors had stopped and I realized that indeed I would live, I visited my Kylee. My "NICU baby". As a nurse, the sight of monitors, IV's, tubes, etc was old hat. As a mother, I had also seen this before, and it wasn't a memory I had intended to relive. "She'll be fine" I told myself, although she also was racked with tremors - seizures, per the nurses.

Kylee was flown to another NICU, and stayed there for nearly 8 weeks. There we learned of the pervasive hypoxic-induced brain injury, labeled "moderately severe". More diagnoses followed shortly thereafter: hypoxic-ischemic encephalopathy, laryngomalacia, GERD, seizure disorder, dysphagia, cortical vision impairment... Still, we didn't understand the enormity of our situation. Denial, I guess. Kylee never demonstrated a suck or swallow reflex, and so had a g-tube placed along with a nissen fundoplication to stop the refluxing formula cascade from her nose and mouth. The official cause of her traumatic birth was ruled to be cord compression, although no visible evidence (knots, nuchal looping) was apparent.

We spent five days at home - five sleepless days setting up equipment (feeding pump, suction equipment, apnea monitor), meds, schedules, and moving her "room" to the living room, because there was no way she could share her older sister's bedroom now. We watched as her pale skin grew paler, and as her labored breathing grew shallower. Finally we rushed her back to the hospital to note an oxygen saturation rate of 50%, where she stopped breathing altogether and was again resuscitated by the same pediatrician that saved her life on d-day. She spent another month in yet another hospital, and was eventually released with home oxygen, an oxygen saturation monitor to replace the apnea one, and in-home nursing at night.



We were given hopeless prognoses and told to enjoy our life with our baby as long as we could. But what followed was not death, it was a new life. A life of doctors' visits, therapy schedules, and hospital stays - 20, to date - and of more diagnoses; chronic pneumonia, infantile spasms, hip dysplasia, osteopenia, reactive airway disease. A life of learning about cerebral palsy - Kylee's "umbrella" diagnosis, about what kind of child she would be, and about the new world we had joined. Many had joined it before, and it helped to know that although this place was less populated, there were still friends there.

After Kylee's birth, we felt like we had literally fallen into a black hole; the deepest abyss on Earth. I prayed but felt nothing but sadness and despair, and I wondered why Heavenly Father had left us.

On one occasion, I found myself sitting alone in my car. I had just kissed Kylee goodbye in the large Children's hospital where she was staying, and prepared to pick up Sade from her Grandma's house. Nathan was in our hometown as he had to return to work and school. I realized as I sat there, that each of us had been separated by this event, and that the attempts to be with my two girls in their two separate places was killing me. This wasn't how families were supposed to be. I admittedly cried - that kind of heart-broken, unrestrained cry that comes from weeks of suffering.

No sooner had my emotions overcome me than I instantly felt at peace. I felt like some unseen force had practically touched me and taken away my sadness, bringing me instant comfort and drying my tears. I realized that this was Heavenly Father's comfort, and that He was indeed with us. He hadn't left; I just hadn't been able to see Him from where I was standing. Slowly our understanding grew, as well as our ability to acclimate to our new life. We realized that our daughter was injured very severely - unable to reach out even one arm, unable to play with a toy, unable to hold up her own head. I admit that ever milestone she missed, every evaluation that ranked her as a "newborn" despite her progressing age, was very hard to note. But I also started to see Kylee for who she really was - not a medical creature to be diagnosed and tested and treated, but a perfect, innocent, angelic spirit. My frequent prayers that she be able to communicate were answered, as Kylee can express herself in her own ways - smiling, crying, making some verbal sounds, and providing minute changes in facial expression or posture that let us glimpse into her thoughts.

Kylee loves being held. She loves being snuggled and kissed. She adores watching other kids - most especially her older sister, who enjoys a very typical affectionate/jealous relationship with her younger sibling.



Kylee demands attention and entertainment; boring as easily as any other four year old. Swimming, swinging in the hammock, going to special-ed preschool, listening to favorite songs, getting tickled, bath time, and bedtime massages are favored activities. Yes, she is a lot of work. But we realize that "where much is given, much is required" - and that in order to be blessed with such a beautiful, beloved child we have to put in a little more effort for the privilege.



Life is "normal" for us now. I really don't even remember what life in that former world was like. I know I wouldn't trade Kylee for it; I wouldn't trade her for anything in existence. I think of what happened in comparison to riding on a train. We had been quietly riding along on our passenger train of life, taking in the scenery, when BAM! The whole darn thing derailed. That train received some significant damage, and the repairs took some time. But month by month, and year by year, it again started to head for the previous destination. And pretty soon, the people on board were chatting and carrying on nearly as before, practically as if they had forgotten the mishap. Except for the fact that they were all wearing bandages. And that this time, we refused to ride. We drove.

I will never know if I could have prevented her injury by having a scheduled c-section instead of a version. I will never know if her cord was pinched by her shoulder, squeezed by her fist, or pinned somewhere else by her body. I will never know if turning Kylee moved that cord into a compromising position or set up the chain of future events that unfolded. I will never know if having a different medical course early on - infant cooling, cord blood reinfusion, or earlier at-
home oxygen - would have caused a more favorable outcome in her abilities today. But I do know without one shred of doubt, that Kylee is living the life that was intended for her, that I love her more than could be imagined, that we are blessed to have her, and that she is making each of us, individually, a better person for knowing her.

odd girl out...?

A compilation of writings by Beth Grebe of Odd Girl Out...?

I married my high school sweetheart and the best man ever, in the whole world, Jake, in 2000.

We have been married for almost 9 years, and in that time, have created 4 wonderful beings:

Jake II (7 1/2), Pete (6), Betsy (4 1/2), and Rosie (2). What can I say? We work fast! I had very typical pregnancies with the boys. A little morning sickness, a little back ache, a little leg cramps, just the usual stuff. I had beautiful, natural deliveries with them. Things were wonderful. In November 2003, I got pregnant for the third time, just as planned. Almost as soon as I found out I was expecting, I was pounded with horrible morning sickness. It got so bad, and lasted for so long that I got IV fluids and was offered a Zofran pump if the oral variety didn't work. Luckily, it did, well, at least so I could function on some level. About 4 weeks before my due date, I found out that my little peanut was breech. I did not want to try a version due to the risks involved to the baby, so, a c-section was scheduled. I was very nervous.

In August of 2004, I gave birth to my third baby. A beautiful girl, our first girl. She weighed a healthy 7 lbs. 7 oz.

She had great apgar scores, all in all, a normal Cesarean delivery. She came into the world with a loud cry and pink skin. While in the hospital, we discovered that she had pretty severe reflux, and lost more weight than usual. But, all in all, nothing that required further hospitalization, and nothing we couldn't handle. We named our sweet girl, Betsy Jane. I felt high on life. Each and ever birthing experience is quite spiritual, and this was certainly no exception. I was relieved to put an end to a pregnancy riddled with severe morning sickness, complete with iv fluids because I could stomach nothing else. But it was all worth it, at that moment in August, when they placed her healthy, little butt in my arms.

Betsy was such a GREAT newborn. She ate well, slept as much as a breast fed infant sleeps, and was loved by all of us so much. A little girl was such a new experience for me, and I loved it.

The following months were a blur of nursing, two active toddler boys, nursing some more, and reflux, yet another first for us. When Betsy was not quite 4 months old, I started noticing little things that bothered me. She made no attempts to move; no head movements or rolling attempts. She also didn't appear to have reflexes that many new babies have. She would smile, but did not visually attend to anything. I said something to my husband. His response was, "Don't worry, all babies are different." I knew this all to well, being a Speech-Language Pathologist before becoming a mom, but my worries were not sitting well. I had a gut feeling something wasn't right. My mommy intuition was kicking into overdrive. I discussed it with my mom, and she agreed that there were "things" that worried her. How could this be? She was healthy, ate well, was growing. What could be wrong? What were we missing? Why had it taken so long for us to know?

At the 4 month check-up, my fears were not put to rest, but rather I was told the DOCTOR would make Betsy an appointment with a pediatric neurologist. The doctor left, after handling me with the utmost care, and when he returned I was told the neurologist would see us in 2 weeks. Fast forward through the second worst wait of my life (more on the very worst later), the neurologist confirms there is a significant delay. "I propose some initial tests that I would like done as soon as possible. Can you drive down to Children's Hospital this evening to get started?" Whoa, slow down!

What followed was months of diagnostic tests and questions about my pregnancy (including about 3,678,878,293 people asking me if I drank or used drugs while pregnant. Uh, no and no). We saw geneticists, eye doctors, orthopedic surgeons, the neurologist. It was a whirlwind to say the least. Every procedure included anesthesia because of her low tone, even her MRI. And at the end of those months of testing, Betsy had no diagnosis.

Betsy received in-home speech, occupational, visual, physical, and play therapy until she was 3. Then, she entered the St. Louis County Special School District. She goes to school four mornings a week, and gets all of her therapy there. We love all of Betsy's therapists (past and present), teachers, and doctors. They have made this journey much more bearable. Betsy wears glasses for near sightedness, wears ankle braces, has recently begun using an augmentative communication device, and, until recently, used a reverse wheeled walker. She miraculously started walking on her own in August of 2008.

It always seems that just when I am about to crawl into a hole, Betsy ups her game. I never give up on her, but often times, seem to give up on myself. I love Betsy in a way that only others with "not typical" children would understand. It is full and pure. I love all of my kids so much, I would give up my own life for them, but with Betsy, it's just a bit different, because she needs that. There are days when I feel defeated, broken, like that grieving stage is creeping back into my heart.

I did grieve when we first learned of Betsy's prognosis. It may seem selfish to some, but it's just me being honest. I grieved for the loss of the child I thought I had, I grieved for the life I thought Jake and I would lead once all of our birds left the nest, I grieved for an end to a world I had once known, and I grieved for her and all of the things she would never be able to do. Sometimes, when I think about some of my emotions back then, I think I was being so silly. God gave this wonderful gift to Jake and me, and our other children. I laugh to myself because she has impacted so many people's lives. I know my friends and family will never be the same. She has changed their internal wiring and made their hearts grow bigger and BETTER. We are all better...because of her. She works so hard to accomplish what seems like such little things to you or I.

Betsy is now 4, and still has no diagnosis. (Well, technically, it is static encephalopathy. This is a catch-all term, much like, cerebral palsy. The good news for us is that she is healthy as a horse. She loves all kinds of music, especially, dancing music. The Ting-Tings-That's Not My Name is always a fave. She loves books and, strangely, gloves (she has a tote bag of all kinds) and snacks out of Ziploc baggys. She attends special school 4 mornings a week, and receives occupational and physical therapy (OT and PT), speech therapy, and individualized classroom instruction. More importantly, she has her family. We love her and support her, and celebrate every accomplishment, no matter how small, with her. She is special, no doubt, and we rally around her in a way that is normal to us now. She IS the odd girl out, but in the very best sense.

We are told that Betsy will always have moderate to severe physical and mental disabilities. Even now, that is a hard thing for me to write. I am not sure when I will completely be okay with that. But it gets easier and easier every day. She makes it easier and easier. She is the happiest, smiliest, huggiest, kissiest girl I have ever known. She snuggles and cuddles. She loves music, has an infectious laugh, and is kind to everyone she meets. And, we are so lucky because Betsy's body is as healthy as a horse. Other than 2 minor surgeries (eyes and ears), we have had no health concerns with our girl.

Betsy's next hurdle is to learn better communication skills. She is non-verbal and only knows a few signs. But, good gravy, she wants to communicate, and she does the best she can. Our youngest, Rosie, has been such a good addition to Betsy's learning. We struggled with the decision to have more children. Would the next baby have the same fate? In the end, we decided that it was in God's hands, and we would eagerly and lovingly accept whatever He were to bless us with. Betsy mimics Rosie and tries to do all of the things that she does. She has accomplished more in the last year, than the 3 previous years combined. Currently, she has been going pee-pee on the potty whenever Rosie does. Yea! We are amazed. I know that we will continue to be amazed by her on a daily basis. The boys love her and don't even think twice that she is "different". Her needs seem normal to them. They don't even mind when she drools on them.

This little girl has quite an impression on people. I am certainly proud of all of my children. What mother isn't? But today, I was struck with more of a "I-am-proud-overwhelmed-that-I-was-chosen-to-be-their-mother" feeling. I never, in my wildest dreams, thought that one of my kids would touch so many people's lives in such a profound way. We all have hopes and dreams for our kids, but they are who they are, and their destinies are out of our hands. An astronaut, doctor, or child actor would be nice, but who gets to say they have a 'Betsy'?

I know that God loves her. I also know that she must feel His love in a way that you and I may never know in our earthly life. He has made her special. His gift to her is LOVE. Love that knows not of judgement, or race, or bias. It is pure, unconditioned, and full. In essence, she is the most fulfilled individual I know, and she is only 4! I know that I do not need to understand God's plan. It is divine and surpasses all human understanding. It is hard for me to give up that control, but I must, and I do. That, and to love my little girl for eternity, is all I can do.

To follow is a prayer that was sent to me from my dear and beautiful cousin, Michelle, when Jake & I first learned of Betsy's condition. We were in a constant state of flux, always wondering what the future might hold for all of us, but more importantly, Betsy. I was very sad much of the time, and I said this prayer often. At the time, there were moments when I wasn't sure if I could fully surrender myself to what the words were actually saying. It was a long and difficult rite of passage for me, but I earned the badge, so to speak, and wear it with honor. Now, I say this prayer for comfort. I am faithful and know the absolute truth of the words. We do NOT need to understand everything that happens to us in this earthly life. It isn't in our job description. And quite frankly, I am glad of the not knowing. Some things are better left unknown, and some things just happen for no reason at all. It is what we take away from these crises that is the important thing. God is working through us all.

"Father God, Thank You for always being there for me no matter what I face. I know You will never fail me, even in my most intense trials. I have not always understood why I was going through certain things; however, I do not have to understand, because You are God and You are in control, in spite of my lack of understanding. I know that all You require of me is to trust You, and look to You in faith and You will come and save me, and bring me an answer. You always have, and You always will, because You are faithful. You never fail any of us who look to You. I have failed You, Lord, by my doubt and unbelief at times, but You have never failed me. Lord, please remove all the sorrow and grief I feel. Heal this pain I feel in my heart and help me to trust You more. Fill this empty place in my heart with more of Your Spirit. I ask this in Your name. Amen."