Appreciate the Mess

Big sister dressed me up as a princess!

Even though Lily's situation started out very serious and negative, she is a blossoming 15 and a half month old today!  She has finally learned to crawl which was accomplished with great effort and many hours with her physical therapist.  I was quite worried that she might not ever be able to use her muscles in a coordinated way because of the neurological damage. 

When we started the process of teaching her how to crawl we noticed she had a lot of muscle weakness on the left side of her body and that her torso muscles in general were weak.  So, various exercises were given to us as homework.  My husband and I used every available moment helping Lily build strength.  Ah, how I fondly remember doing choo-choo trains around the living room floor.  We even got the older siblings in on the act.  Time was also spent tackling obstacles which were painful physically for her and emotionally for us. 

Just like with any type of physical training, there is some amount of muscle stress and pain involved.  Lily would cry quite a bit during these sessions and so did I.  It is very frustrating having to force your child to approach tasks that hurt her, but also strengthen her.  And there were many times that I just wanted to quite, but quiting is not an option for us. 

To keep going I often reminded myself of Jeremiah 29:11: " 'For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future.'"  Even though I could not understand it at the time, I knew that from this pain would come great rejoicing because this was part of the plan.  Sweetest Lily has things to do here for the Lord and her story is meant to encourage others. The best way for her to be a true witness of the healing power of prayer is for her to do everything the doctors said she would not.  

When my other two children were small, I complained about the messes they made and the things they would get into and how they never would stay still.  And I often hear others complain about the perils of parenthood in the same manner.  "My house is never clean because of my kids," or "Where did that kid go now?  I am always chasing after him," are common gripes.  I have changed my view of parenting complaints.  Instead I think to myself, "What a wonderful blessing to chase after Lily Pad down the hall!" and "Look what Lily Pad has dragged out now! Isn't it wonderful?"  I GET to "complain" about the mess she makes and the fact she plays with the door stoppers and is pulling at the curtains and attempting to climb up the stairs.  These small messes are what I appreciate now because they were never promised to me.   

This was FOR me.

Coping daily with Infant Stoke...

Over the past few weeks, our pastor has been preaching a new series called I Want to Change.  So, last week he illustrated how it feels to be bogged down in your "baggage", how certain circumstances can weigh you down, by calling forward to the stage a rather tall, muscular young man.  The pastor then jumped onto the man's back.  At first we started laughing at his attempt to dramatize his message. But then the figurative weight of what he was literally doing shook my heart. 

As soon as Lily's devastating diagnosis was given to me, a large boulder was placed on my chest and I felt as though crushed under its weight.  I have never experienced such a feeling in my whole life.  And not only did the tonnage of the news pull me down, it also hovered in the air, choked the life out of my lungs, clouded the thoughts in my mind, and incapacitated me with fear.  It is hard to describe, but suddenly I was a small child crouched in a corner and ominously closing in on me was a ferocious beast, one bent on ripping me apart.  This is how the news of the diagnosis settled into my life.  And I it took away my ability to function.  It was a daily struggle to put one foot in front of the other.  I shut down.  And this was not depression in that I felt hopeless about life.  This was different.  This choked and suffocated and blinded and hurt.

When the pastor jumped on that man's back, I immediately felt the suffocation I had felt during those dark days shortly after Lily's diagnosis was delivered.  I began crying.  It was a horrible memory for me to relive, but it was necessary because the Lord showed me that this whole situation was not about me and how I felt.  This was about Him.  He did not do this to me, but for me, to change me and to change others.  God specifically planned for this to happen to Lily so she could be a testament to His glory, prove that man does not know everything, and provide encouragement to His people. 

Periodically, I experience the blinding hurt of those days.  But it's ok.  It's over now and God has His testimony and His glory.  And the best part is that it is not over. He has more work to do and I know Lily is going to help Him!

Poem about Perspective

WELCOME TO HOLLAND

by

Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 c1987 by Emily Perl Kingsley. All rights reserved

Lily Pad's Place: Research

Lily Pad's Place: Research: I have been doing much research on Neonatal Stroke, causes, and prognosis. From the scholarly articles and studies I have read, the followi...

Is there something wrong with me???

So, I must be honest here.  When I found out we were expecting baby #3 I wasn't exactly thrilled.  Shortly before I found out I was pregnant, life had become predictable, safe, and routine, all things I adore.  Lorelei and Lucas were old enough that they didn’t need me to feed them and soothe them every minute of the day.  Diaper duty was done and baby food was over.  The idea of starting over with a new baby truly frightened me.  For many years I had struggled with anxiety and child-rearing brought out my worst fears.  Fears of sleep deprivation, potentially fussy baby, and lack of predictable routine crept into my mind and choked out the happiness I shared with my husband and two children.  But so far I had learned to cope and manage my anxiety and life being utterly “normal” helped.  This new pregnancy, though, certainly began testing my coping skills from the very beginning.  I dreaded starting over, disrupting my life, tangling my plans, and up-heaving my household.  Tears of worry flooded my eyes and anxiety strangled my heart.  I was an old dog of thirty-five and I did not want to learn any new tricks. 

Over the next several days I spent a great deal of time hashing out my worries with my friends, my family, and my husband.  Talking about my fears helped me cope and I soon realized that the fearfulness I felt in my heart was shared by my girlfriends who had faced a similar situation.  The third “surprise” baby is common in a military town where large families of three or more children were commonplace.  Mothers with multiple children often commented how two-kid moms, rare in our town, had it so "easy".

     

Unfortunately my anxiety and fear did not go away.  It attacked my heart and mind, completely consuming my thoughts and emotions.  And, to be honest, it scared me greatly.  What kind of woman is frightened of her unborn child?  Is this not the mark of a bad mother?   Guilt plagued me because I literally could not get happy about having baby three.  I was certain something must be wrong with me.  Did other women feel this way? Is this normal?  What do I do about this? My husband continued to encourage me daily, assuring me that all would be fine; it was just another special blessing God had given to us.  He and I were good parents.  Lorelei and Lucas turned out great and they were wonderful babies and Bo was confident Baby Three would be the same.  Still the anxiety and fear stayed with me throughout my pregnancy.  I slept little and smiled even less.

The guilt at not feeling happiness in my new pregnancy was demoralizing and it only fueled the vicious cycle of anxiety.  Still, prayer and thanksgiving became part of my daily lexicon.  Daily devotions were often used to calm my restless spirit and my emotions.  Spending quite time in the presence of God allowed me to focus on the blessings in my life instead of the future worries I harbored; worries about circumstances I could not control or predict.  How foolish we can be when we consider all that God has given us! People spend time worrying instead of living in the comfort and security of God’s embrace and loving will for our lives. 

Pictures from the NICU

Lily, the day she was born, October 19, 2010

Lots of monitors and tubes :(

Our first picture with Lily a few days after she was born.

Our Story...

At 28 weeks of pregnancy, my baby girl, Lily (nicknamed Lily Pad) had several strokes in the linings of her brain called Intraventricular Hemorrhages (IVH). Approximately five blood clots resulted because of the bleeding and were blocking the flow of cerebral spinal fluid (CSF).  She developed Acquired Hydrocephalus because of the blockages.  Initially, my husband and I were told that, in addition to Hydrocephalus and IVH, Lily had a heart defect, cleft palate, and Dandy Walker Syndrome.  The prognosis was death or severe handicaps and we should consider abortion.

After much prayer, my husband and I decided to go through with the pregnancy, confident that the Lord had other plans for our daughter. Subsequent MRIs and CT scans confirmed IVH, blood clots, and Hydrocephalus.  As evidence of miraculous healing, the cleft palate, heart defect, and Dandy Walker Syndrome were not evident on the test results and those diagnoses were ruled invalid.  To minimize head trauma, she was delivered by scheduled C-section at Duke University Hospital and rushed to the NICU.

The doctors did not expect much out of Lily and predicted poor Apgar scores, seizures, and poor sucking reflex.  In fact, death was the most likely outcome given to us.  However, Lily Pad proved to be a fighter.  Her Apgar scores were normal, no seizures were evident, and she could eat just fine.  The doctors could not explain her recovery, but my husband and I are CONVINCED she is a miracle of Lord! 
At four months old, Lily received a VP shunt to alleviate the accumulation of CSF in her brain ventricles.  At five months old she underwent another surgery to replace the first VP shunt because of infection.  Her Hydrocephalus is currently under control, her brain has increased in size and development, and she is making developmental strides weekly. 

Today, Lily is fifteen months old and is healthy and happy. She struggles daily with physical handicaps which require three therapists visit her each week. Her therapy sessions can be intense because she cries a lot from the pain and stress of the physical tasks she is put through. I do a lot of crying because she cries, but my husband and I refuse to give up! Lily does suffer from some weakness on the left side of her body and overall muscle weakness.  Cognitively, Lily behaves like a normal child, with normal intelligence.  She began crawling at fourteen months old and we are confident that one day she will walk.

We ask for the Lord's strength as we learn a new way of life, a new sense of normal. Lily will do everything that other kids do, but only in God's timing.