Nothing Else to Lose

Me, just one week before Lily's arrival.

Prenatal Diagnosis of Fetal Stroke

The next step in our journey involved a trip to Wilmington, North Carolina to see a specialist where we would get a more detailed sonogram and blood testing.  I had a bad feeling about this place from the moment I stepped in the door. First, they do not allow children in their office AT ALL. Then, there was soft, soothing music being played in the waiting room which was dimly lit and smelled of lavender and disinfectant. The two women already in the waiting room were obviously pregnant with multiples. I have never seen such huge baby bumps! Once you are called back, you get your own private nurse and your own private waiting room. And every room was equipped with a box of tissues as if crying fits would ensue at any moment. It was just creepy.

After seeing the sonogram technician we were whisked into our waiting room. And we could hear NOTHING! No footsteps down the hall, no quiet chatting in the next room, no flushing toilet, no overly soothing music, nada. It was unsettling because we were anxious to hear about Lily Pad. 

Finally, our nurse took us to a conference room in the very rear of the building. This should have given us a clue as to what we were about to hear, but it never registered with us until months later.  We were joined by a Genetics Counselor and Obstetrician, both whom we barely knew, and one of those boxes of sandpaper Kleenexes was unceremoniously placed in front of us. Another clue unregistered. What came out of their mouths next would haunt us for months to come.

They told us that Lily had several bleeds, strokes, in her brain and the sonogram revealed her brain ventricles were filled with blood. They did not know why this had happened or how to help her.  In addition, to the bleeding, Lily was also missing part of her brain, she had a cleft palate, and had a heart malformation.  It was theorized she had Dandy Walker Syndrome. In short, Lily would not live. On the slim chance she did live, she would probably be a vegetable. They suggested we have an abortion. Unfortunately, this would not be the last time abortion would be recommended to us. The doctors told us they could send us to another specialist to see if they could help us, but the Wilmington doctors could offer us no other assistance. They recommended The Children's Hospital of Philadelphia, Houston Children's Hospital, and Duke University.

My husband and I literally felt we had been hit by a Mack truck. I absolutely could not believe what I was hearing. This is the kind of thing you watch on Discovery Health or some other medical show.  Things like this did not happen to our family! What emotions were we experiencing at the time? Anger, frustration, disbelief, grief, sorrow, fear, desperation, depression, hopelessness.

Abortion: when faced with this option it actually seemed a feasible possibility given Lily's prognosis. Perhaps the greatest test of my Christianity came at this moment. Would God want me to carry a child to term only to watch it die anyway? Would God want Lily to suffer? Would God want me to suffer? Surely the Lord would condone such a heinous act as abortion when unavoidable suffering was involved? It seemed like the "right" thing to do and I was tempted.

Sweet Lily Pad is just a few weeks old.

But God loves us from the womb. We are fearfully and wonderfully made. And life begins the moment sperm and egg are joined. I knew this, have always known it and so I said no to abortion. Whatever suffering was ahead of our family, I had to let go and trust that it was indeed part of God's plan for Lily.

So, we asked to be referred to Duke University to see if their doctors could help us. But before leaving they sent us home with literature about the abortion option and a book to read to Lorelei and Lucas in the event Lily died. This was a completely sobering moment and it nauseated us to the core. We were then whisked out the back door of the medical office for fear our tears would upset those in the front waiting room. This is the only time I have ever been asked to leave by the back door of a doctor's office.

Bo and I said nothing the entire hour trip back to Jacksonville. Our friends and neighbors were waiting for us when we got home and we broke the news to them. They prayed for us and for Lily. After the prayer, Bo and I threw away the literature given to us by the doctors because we did not want to focus on man's prognosis for Lily, but God's. Even though it seemed absolutely hopeless, we held on to our faith and God's promises to give us a hope and a future. After all, we had nothing else to lose...

Divine Appointment

"The first time I saw your face..."

It started as Hydrocephalus

In the "Our Story" section of the blog, I sort of glazed over a lot of details about our prenatal visits and I would like to give an account of our experiences mainly because so many parents get such dire prognoses that it is hard to find hope in the middle of such bad news.  Many doctors have poor bedside manners and others take the time to explain difficult medical technology.  I just want others who are going through this to know they are not alone in their experiences so, I will be chronicling a few of the appointments and experiences.

It is by divine appointment that we found out about Lily's condition. I went to the doctor for a normal check-up at around 28 weeks of pregnancy and as I waited to see the doctor my friend (who is also the sonogram technician at my doctor's office) stopped in the waiting room to see how I was doing.  She asked if I had had my 3D sonogram yet and I told her no, that I thought it would be scheduled for much later on in the pregnancy.  She then checked her appointment calendar and discovered that she could do the 3D right then! So, I called my husband and he rushed over to the doctor's office with our two other children. 

Sweetest baby feet!

We all crowded around the monitor as my friend scanned pictures of Lily and pointed out her features.  We watched her suck her thumb and grab her feet.  Lorelei and Lucas were extremely excited to see their baby sister!  I did notice that during scans of the head that my friend took sometime to measure dark spots in the head area, but she never let on that anything was out of the ordinary.  In talking to her later, she said she saw the enlarged ventricles, but tried her absolute best not to become alarmed or attempt to scare us.  She was holding out hope that what she saw and measured was a mistake.  What incredible courage she had to treat the situation with dignity and professionalism!  She calmly printed pictures of the concerning areas and escorted us to the exam room so we could meet with the doctor.  The whole time she remained positive and did not cry, although she later expressed her desire to come into the room with us and hold my hand. 

In the exam room, our doctor explained that something concerning showed up on the scans and that he felt we should go see a specialist to get more information on the images.  He readily admitted that he did not have enough knowledge about enlarged ventricles to make a diagnosis, prognosis, and treatment plan.  He encouraged us not to worry and that we would find more answers at the specialist's office. 

Both of these medical professionals explained the situation with courtesy and concern, making sure not to worry us.  I felt they truly cared about our situation and encouraged us to call them if we had anymore questions.  My friend told me everything would be fine and that worrying would not be good for me or the baby.  She said many times poor image quality was often to blame for misdiagnosis. They both said they would be praying for good news and a continued healthy pregnancy. 

What is even more amazing to me about the whole experience is the divine intervention of it all.   If not for His intervention,  we might never have known anything was wrong and been unable to help her and prepare for her arrival.  Lily certainly would have had cerebral palsy if she had been delivered vaginally and if she had not been taken to the NICU shortly after birth she might have died. The Lord purposefully placed me in that doctor's office on the day my friend was working.  He skillfully arranged for her to conveniently walk past the waiting room, notice me, and sit down for a short conversation.  He slyly cleared her normally packed schedule to allow for the sonogram.  And He predestined my husband to be home from work on that very day.  The Lord had this planned for my life and knew what my husband and I would need to accept his will - a good friend and an excellent physician with Christ-centered, compassionate hearts.  What others see as coincidence, we see as divine appointment.

It Takes a Village

Splish splash in the tub!

Physical Therapy for a Child with Disabilites

This week, Lily has started wearing "Big Girl Shoes". And while her progress is slow, it is still so very exciting! There are so many things she can do now and her personality is blossoming.  She has quite a temper and doesn't mind letting you know when she is unhappy.  Not only will she tell you "no", but she will also tell you to "stop".  And her favorite people to boss around are her physical therapists.

Twice a week Lily has physical therapy.  Her therapist works with her at the day care facility she attends and in our home. This can be quite a scheduling mess as my husband and I try to fit in the activities of our other two children, church, work, doctor appointments, community responsibilities, and time for ourselves.  But our physical therapist is wonderful about working with us and accommodating our extremely hectic schedule.  And with this many visits, it is easy to see how Lily is able to easily recognize the face and voice of her therapist.  Sometimes Lily reacts to her with excitement and playfulness, while other times she reacts with anger and frustration.  Unfortunately, the physical therapist is used to these reactions from all her patients because she is tasked with the responsibility of forcing the children to do what is not natural or comfortable for them.  And Lily is no different.  Because of muscle weakness, Lily has an extremely hard time using her lower body and left hand.  She is easily tired and frustrated, often crying out in anger and pain.  But her physical therapist continues to push Lily and us.  She encourages us to continue to fight the weakness and the exhaustion and the frustration.  Lily not only needs her loving family in her corner, cheering her on, but she also needs the therapist, challenging her abilities.  The physical therapist has shown me the intricate, tender art of tough-love for the special needs child.

Lily playing with her Daddy!

In addition to a physical therapist, Miss Lily Pad also requires a developmental therapist.  While the physical therapist works on Lily's muscular movement, strength, and endurance, the developmental therapist works on Lily's developmental milestones such as verbal skills, fine motor skills, language recognition, and cognitive learning.  The developmental therapist visits us once a week.  Again, this is in addition to the physical therapist and other doctor appointments Lily requires.  This, of course, adds to our busy weekly agenda, but the developmental therapist is excellent about working with our family and remaining flexible in scheduling.  And Lily recognizes the face and voice of this therapist as well, however Lily does a lot less crying during these therapy sessions.  During this time, we get to focus on the therapeutic benefits of creative play.  My husband, myself, Lily, the therapist, and sometimes our other two children get in the floor together and just play, laugh, and be silly while teaching Lily Pad.  The developmental therapist has taught me that a special needs child needs LOTS of silliness and play.

In any given week, Lily may have from one to three doctor appointments.  There are weeks when we have none, which is nice because it used to be a weekly event.  She is currently being seen by an optometrist, a pediatrician, a neurologist, a dentist, and a physical therapy evaluator.  Recently, we have dropped the hematologist from the cast because Lily has not had another stroke.  All of these physicians work in concert to provide Lily with the attention and care she requires.  And it is comforting to have loving, knowledgeable, and understanding doctors looking out for Lily.  These physicians have taught me how individual professionals can harmonize with others to bring total care for the special needs child.

During the day, Lily attends a daycare that advocates for the special needs child.  Lily is still in the infant room at her daycare because she cannot walk and because of her other physical needs.  And the daycare providers have never pressured me into advancing Lily to an older class for which she was not yet prepared.  They have been more than accommodating in allowing the physical therapist and other supporting staff to visit Lily at the daycare.  The caretakers in Lily's class have also undergone training by the physical therapist in handling, teaching, supporting, and challenging Lily.   In addition, they have helped to alleviate some of the financial burden that comes with raising a special needs child by never charging us a higher fee for her specialized care and even giving us fee forgiveness when Lily was hospitalized and recovering from her shunt surgeries.  This group even raised money to help our family.  They love Lily and spoil her and treat her the way I would treat her.  These caretakers have taught me about mercy and kindness, both which are greatly needed by the special needs child.

I guess what I am mainly reflecting on this evening is how one child can bring together an array of individuals from various backgrounds, education levels, and talents.  Each individual has a detailed role in Lily's development while also playing an integral role in the team effort approach to her care.  Raising a special needs child not only requires loving parents but it also requires a village of professionals to nurture the growth of our sweet Lily Pad. 

Tell me you love me

Lily is now doing something new.  She is talking her lips off!!! She is absolutely loving the talking thing.  She says "mama", "dada", "stop", "go", and "dog".  We are so super excited about this wonderful new boost in her language development.  And I am slowly learning something new about infant development; babies do not naturally develop in a consistent incline. 

In fact, their development is often staggered and out of order.  For example, over the past three months we have seen Lily make huge strides in her gross and fine motor skills.  Suddenly, she is able to crawl over obstacles, up the stairs, pull up on the furniture, and take a few steps with help.  However, we have seen very little language development.  And I have been extremely concerned about her inability to communicate with us.  The therapists and doctors have told us not to be concerned, that she would eventually catch up. 

So, in true over-achiever fashion, I have been talking Lily's ear off!  I am constantly pointing and naming things, faces, pictures, actions,
animals, you name it!  Perhaps she has not done much talking up until now because her mom has been talking for her.  Whatever the reason for this sudden boost, I am thankful.

 On the other side of this coin is big sister Lorelei who has recently discovered the wonderful world of the telephone call.  She will make a bag of popcorn and then spend hours on the phone with her other third grade friends, friends she had just seen a few hours ago at school!  I remember when Lorelei was a baby and it seems they grow up too fast.  In the blink of an eye they are nine years old, talking on the phone with their girlfriends.  Or, they are sixteen, heading out in the family car by themselves for the first time.  And someday, some unfortunate day, they will be grown and gone.  How I dread those days! 

And one day Lily Pad will call her friends on the phone and tell me "no" and ask for a cell phone.  Although I do not wish for her to grow up, I do pray for the day she will be able to tell me she loves me.

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