Friday, March 25, 2011

Part of His Journey

When Cheney Alan was born, I feared that God would take him from me.  It was not a fear I had felt when either of my girls were born.  At some point in my life, there was a nagging fear in my head, that if I had more children, they would not all be healthy.  When Davin was born, things seemed perfect.  Too perfect.  I remember looking over the side of his crib and thinking that everything was too perfect.  Something was not right.  Davin had some trouble eating and I spoke to the nurse several times about it and she told me I had a good baby and to enjoy him.  Oh, I did enjoy him. 

For some reason, that year, getting Christmas pictures was extremely important to me.  All of the kids had to have coordinating outfits.  I think somehow I knew that this picture was going to be "my perfect life".  That brief moment in time when I thought everything was the way I wanted it to be.  Four beautiful, healthy children. 

Davin went to his 2 month check-up and his 4 month check-up and passed with flying colors.  Soon after that, I started wondering when Davin was going to "uncurl".  You know how newborns are very curled up like they are in the womb, but then they start stretching out?  I began noticing that Davin did not move his arms.  They were basically stuck to his sides.  I started moving them up every single night and praying. 

Davin went for his 6 month check-up and I asked some questions.  I voiced concerns about his arms.  The doctor told me that it would not be anything neurological since his legs appeared to be fine, so I should just take him home and watch him for a few weeks.  I believe I made it for one week and then called and asked to see my pediatrician.  (We had seen a different pediatrician for Davin's 6 month.) 

My pediatrician examined Davin and referred us to Easter Seals.  He told me he did not think it was neurological, but if I was offered the chance to have Davin see a neurologist, I should take that opportunity.  We had our first evaluation with a PT.  We were brand new to this world and I did not want much to do with it!  Now I realize that our PT, Jane, knew exactly what the problem was with Davin, but she could not tell us.  She told me that Davin needed to see a neurologist and my pediatrician's office helped us set up an appointment so we could get in earlier.  We met with a social worker who told me he was sure Davin just needed some arm exercises and he would be fine. 

What happened next is to me the day that changed my life.  But, it really wasn't the day that changed my life.  It was just the day that my perception of my life changed. 

On June 11, 1993, my mother-in-law drove Davin and I to Jefferson Hospital in Philadelphia.  We met with a neurologist there.  He examined Davin and kept saying good, good, good.  I figured it must be going well!  He asked me lots of questions.  (Later I would know I will be answering those SAME questions for forever!)  At the end of the exam (which I thought was going well), he looked at me and asked if anyone had ever put a name to this for us.  I said no.  He told me that Davin had cerebral palsy and did I have any questions.  He said it that flatly.  Just the facts.  I had only one question for him at the time.  I asked if Davin would be able to walk and the doctor told me that he probably would.  I kept myself together, paid my bill and walked out of there. 

I remember getting to the elevator and having a really hard time holding it together.  I am not a big crier, so I did not care to be sobbing in the doctor's office (although I would later be sobbing all kinds of places:-).  I was able to keep it together as long as my MIL didn't say anything to me.  We got to her truck and she asked how I was doing.  That was it!!  I lost it.  I put my baby boy in his car seat.  My MIL prayed with me and off we went.  I now had to go tell my husband that our baby boy probably had CP.  (There was no specific test for CP, so we had to have some other tests done to rule out anything else.)

My MIL drove me to Alan's office and I went upstairs.  His secretary saw me and asked how the baby was.  Remember the sobbing I was about to do?  Of course, it is much better to have a hysterical crying fit in a business office than in a neurologist's office;-)  The secretary quickly went to get Alan and I remember him coming out and me just barely getting the words out and Alan suggesting we go somewhere else.  He held me and I cried and cried.  We then went and picked up our other children from friends' houses. 

I remember being at our home and just feeling crushed.  My everything felt shattered.  Nothing was the same.  Nothing.  I had to call my Mom.  She had a feeling it was going to be that.  I had to call my sister.  She cried with me.  My MIL called my SIL.  She handed me the phone and told me she thought I would want to tell her, but I had had enough. 

Alan and I sat on the couch together.  We were just absorbing.  How could our world be rocked this much?  Then, Alan said the wisest thing he has ever said.  It changed everything for me.  Well, it started to, anyway.  Alan asked me if Davin was any different today than he was yesterday.  Brilliant.  No, he wasn't.  Yesterday, Davin had CP, but I just didn't know it.  Today he has CP and I know it now.  He was still my baby.  He was still the same baby that we had brought home from the hospital and loved and loved. 
Looking back, I can remember God bringing so many things in my way to make me think about people with disabilities.  It seemed like there was something on the subject on television if I watched, if I went to hear a speaker...everywhere!!  I was turning off channels, walking out of rooms, and just saying no.  If God was preparing me, I was not hearing it!!  I would not.  That had nothing to do with my life.  I also did not know it at the time, but God would not let my Mom pray for Davin to be a healthy baby any longer.  She was still able to pray for him, of course, but not that he would be "healthy".

I have learned so much since then.  Not about CP.  About me.  About Davin.  About my God.  About a brother who thought his little brother might be faking so he would get toys from the therapists.  About sisters who were willing to get into a fight on the bus to defend their little brother and who fought over who was going to hold him until he was probably 10.  About a husband who adores a boy who isn't perfect by the world's standards.  About perfection.


Martha said...

I love your honesty, and I have always loved Alan's response. Wisdom from your Father as well as your husband. Davin is the most loved and adored kid I know!

Tina said...

This is so beautiful. I just want to hug you!! Your family us such a wonderful reflection of how Jesus lives so perfectly in our imperfect world!! I love, love, LOVE how Alan had just the thing to say! Wise indeed! I hate that I cannot adequately convey my emotions in writing .... I am so very blessed to have you as a friend !

Because of Him,

Kelli said...

your such a strong woman and great mother. I remember our day. Not CP but heart and kidney problems. funny how those days are stuck with us.

Betsy said...

Oh, you know so much of this sounds familiar..just insert 'autism' in place of "CP".

Big hugs!

Sherri said...

We are a better family for having known Davin (by blog for three years and in person a few months). I have to say when I met him in person I thougt, "he is as great as they say :)." Thank you for telling us parts of your story.

Natasha said...

Heather, I read this yesterday over my lunch hour at work, and I sat there, sobbing...oh, how many of these words sound so familiar! I swear doctors can be totally clueless at times. I remember getting into our car after one of those appointments and just loosing it - I was lucky Erik came with me for that one... You want to know something else? Erik would say the same thing! Gotta love those guys. But honestly, he's been my steady rock, when I felt so numb to it all at times...