Tuesday, October 27, 2015

It's amazing how much a deletion can add to your life

I had the privilege at the beginning of this month to share about our crazy, busy, fun, challenging life with the women at our church.  I was a bit nervous, but after I finished I regretted not inviting other family friends to join us.  So, I thought I would share a little about my talk.  My wonderful friend Kelly and I spoke together, but I don't have all that she shared :)

As many of you already know, Annika was given a suspected diagnosis of cri du chat at a month old.  I took her in to see her primary care doctor because she just cried all the time.  He came in and checked her out, walked out of the room.  He came in again and looked at a couple of other things then walked out again.  This happened a couple more times and then he walked in with his lap top and proceeded to say, "I think she has this genetic disorder."  He didn't know much about it and was showing me web sites that said she wouldn't walk or talk and would be mentally retarded.  He showed me pictures of kids who sorta looked like Annika and then informed me he would refer us to genetics (this was November and we received and appointment in April).  I just tried to hold myself together (her doctor is not the most compassionate person, but he did give me a small hug and I wiped a tear away and said, "It's going to be ok") until I could get to the car and call Bruce.  He couldn't understand a thing I was saying, but I managed to spell the name so he could look it up at work.  

All I could think about was all that my kids was going to miss out on.

  •  walking and talking
  • playing sports
  • getting married
  • having kids
  • hearing her say "I love you"
  • sharing girl times with her sister
  • college
  • boyfriends
  • dances, graduation.....
I just kept thinking of all the things she would be "lacking" in life.  As I pulled away the song "Overcomer" was on the radio and I thought, "Yes, she is an overcomer and we will overcome this!"  We were in a bit of denial for a while.  We were able to get an earlier genetics appointment in February and he agreed with her primary doctor and said she needed testing.  We had both been in education for awhile and we were just not ready for the stamp to be placed on her.

I remember during all of this my sister kept telling me that people were praying for her.  One day I said, "What are they praying for?  They can't "fix" her, so why are they praying for us?"  Not that I didn't appreciate it I just didn't understand.  We were just going through life like we needed to.  Wiping up barf (she threw up all the time) and moving on.  I did start to understand why people were praying and I still nee prayer every day.  

As I found myself on my knees trying to make sense of everything God brought me this verse, 
" I cry out to God most high who will fulfill His purpose in me." Psalms 57:2
I began to realize that God would not only fulfill His purpose in me but also in Annika.  As I think back to all the things in life I thought she would "miss out on" I realized they are all worldly things.  Activities that the world, and even me, measure success through.  I began to realize (I mean I already knew it, but I sure was quick to forget) that His purpose is not the same as mine.  He doesn't measure a successful, happy life in the same way I do.  I am pretty sure my worldly ideas are much less fulfilling than anything He has in store.
" I have told you these things so that in me you may have peace.  In this world you will have trouble.  But take heart! I have overcome the world." John 16:33
He has overcome it all; cri du chat, the throwing up, challenges with daily living and anything else that might be difficult.  He has overcome.  

We began to meet with therapists and specialists and tried to get her to gain weight.  It took us until her 1st birthday to get her into a GI doctor.  As we sat in that appointment I heard the doctor use the term, "failure to thrive."  I am not going to lie, I wanted to punch him in the throat.  How dare he say my child "fails to thrive."  Does he even know what she goes through?  Another favorite song came to mind, Thrive by Casting Crowns, that says, "We are made for so much more than this ordinary life; we were made to thrive!"  That's my Annika right there.  She was made for so much more than I can even imagine, and this world is nothing compared to what God has waiting for her.  

It has been a battle, but we have made it to her 2nd birthday and she is doing amazingly well.  She has worked so hard during every therapy session this year, has overcome her Nissen surgery and G-tube surgery and is gaining weight and meeting her own milestones.  She touches every life she comes in contact with and makes everyone's day brighter.  Not everyday is easy but it is so worth it.  I know that we have many struggles ahead of us, but when I think of all that has been added to our life because of this deletion I can't imagine life with out that wonderful girl.  In the last 2 years I have had more joy that I ever thought was possible.  I have loved my husband and my family more deeply and clung to them a bit tighter.  We have people all over that love and support us and celebrate every tiny victory with us.  These are just a few of the ways God has filled our lives on a daily basis.