New Year

I’ve been thinking a lot about what to write as we go into this new year.  2011 brought us so much joy and yet so many tears.  I read another blog the other day from a dad who has a son with Down Syndrome.  His son was also being tested for a fatal metabolic disease.  He wrote that his prayer to God was that his son would “Just” have down syndrome.  That really hit home with me.  I remember my dad coming to pick me up at the hospital the morning after PJ was born.  David had followed the ambulance from our hospital down to Children’s and my mom was home getting the other boys off to school.  As my dad and I drove down to Children’s I cried a lot and did quite a bit of babbling.  I remember saying over and over that I could handle Down syndrome (if that test came back positive) but I wasn’t sure I could handle the health stuff we were looking at.  I too remember praying to God to please let Patrick have JUST Down Syndrome.  Down Syndrome really doesn’t seem that scary when placed next to serious health concerns.

The next two weeks were quite a blur for David and I.  But the day we got to bring our baby boy home from the hospital was the best day ever.  It was Mother’s Day and I had been given the perfect present.  I had all of the joys of having a new baby, late night feedings, baths, spitting up, getting peed on, crying, sleeping on your chest (my personal favorite).  I also had many more things with this new baby; wound care, colostomy care, surgeries, anal dilations, abdominal yeast infections, breathing treatments, speech therapy, physical therapy, tons of doctor appointments.  I’m glad I didn’t have a crystal ball to see into the future because when taken in its entirety it would have been overwhelming.  But day by day it wasn’t so bad.  I actually got quite a bit of enjoyment out of caring for this baby that God entrusted to me.

So here we are facing a new year. We started out a bit rocky.  PJ was having trouble breathing last week and was coughing quite a bit.  We were in Michigan visiting family and I took him to see our old pediatrician.  He was diagnosed with RSV.  You never want to see your baby sick, but I was grateful it happened while we were there.  Our old pediatric practice has two doctors that specialize in special needs children.  I had been wanting to get their eyes on him for a while.  They really gave him the once over and gave me a lot of great advice to go forward.  I left realizing that although I like our pediatrician here, I really need to find Patrick a doctor who really knows Down Syndrome.

On January 17 Patrick will have his colostomy reversal surgery.  We will have a lot of wound care and skin breakdown on his bottom after the surgery.  But then all of this terrible health stuff should be behind us.  We will go forward with our sweet little baby, down syndrome and all.   And that seems like the best thing to look forward to this year!!!!

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6 Comments (+add yours?)

  1. Kerry Weber
    Jan 03, 2012 @ 21:03:04

    That’s really beautiful Lisa. You are such a gifted writer! you are so blessed! I am and will be praying for PJ’s surgery! I know he’ll be just fine and with his super strong and loving family, he will recover in no time.
    Love you!

    Reply

  2. Megan McComrick
    Jan 03, 2012 @ 22:27:49

    Lisa- as always such beautiful writings! I agree- I look at Liam and Finnian’s medical binderS so huge, so overwhelming, I feel like all of that is a blur, it must be God’s way of keeping us moms moving forward. If someone had shown me the medical stuff that each of them would deal with I doubt I could have faced the future, but plugging away with one day at a time makes it not so bad.

    I will be praying hard for all the surgery business to go smoothly, that any bumps get smoothed quickly and that you feel all the prayers around you as you go through this journey with PJ.

    Happy New Year-

    Reply

  3. Kristen weber
    Jan 03, 2012 @ 22:50:59

    I am sorry to hear that baby PJ was diagnosed with RSV. I think at the shower we both knew it deep down. I hope he is feeling better!
    Thank you for sharing PJ with me at the shower! I just love him so much. He is nothing short of awesome.
    I will be waiting to hear how the 17th goes. We will praying! Kiss my boyfriend for me!!! Xoxo

    Reply

  4. Catherine Ward
    Jan 04, 2012 @ 07:36:32

    So beautiful, Lisa. You have such a beautiful family and it’s so evident that Patrick has blessed your family greatly. I share that blessing by knowing you. A very joyous 2012 to the Kocabs!

    Reply

  5. Susan Chrysler
    Jan 04, 2012 @ 09:02:46

    My dearest Lisa, how very wise you are. None of us can look ahead too far or we wouldn’t want to get up in the morning. For as long as I can remember, my mother treasured a small prayer book which held her favorite meditation – “One Little Secret of a Happy Life”. The secret “is learning to live by the day. It is the long stretches that tire us…anyone can carry his burden, however heavy, till nightfall. Anyone can do his work, however hard, for one day. Anyone can live sweetly, patiently, lovingly, purely, until the sun goes down.”

    Reply

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