A Year Ago

A year ago tonight we went out to dinner with the kids and my parents.  It was Easter Sunday and most of my family had come in town for the weekend but had left that afternoon.  We were sitting in the restaurant when I had a contraction that brought tears to my eyes.  My mother looked at me and said, “Oh Lisa, I just knew this would happen.”  I was scheduled for a C-section on May 7 (my birthday) and my parents had bought plane tickets to come here and stay with the kids while David and I were at the hospital.  I smiled weakly at my mom and just said, “I’m sure it’s nothing.”  We went home and I continued to have contractions all night long that would wake me out of a deep sleep.  This was all new to me.  Despite the fact that this was going to be my fifth child, I had never really gone into labor.  The next morning I called the doctor and off to the hospital we went.  I remember feeling so anxious.  David just held my hand and asked me what was wrong.  We were about two blocks away from the hospital.  I just said, “What if he has Down syndrome.”  I hadn’t wanted to do all of the testing and I knew we had a marker on our ultrasound.  He just squeezed my hand and said, “We’ll deal with it and love him anyways.”

The next few hours were just a big blur.  When he was born the nurses kept asking David, “Does he look like your other boys.”  We knew something was wrong.  But yes, he did look like our other boys.  The pediatrician said that due to his low tone and large fold on the back of his neck, it warranted genetic testing for Down syndrome.  He told us not to worry because he didn’t have the other characteristics.  At about two in the morning, after David had gone home, the nurse came in to take a rectal temp on Patrick.  He had been having difficulty maintaining his body temperature.  She couldn’t find an anus to put the thermometer in.  The pediatrician came back immediately.  He told me that this meant he most like did have Down syndrome. He told me he had already contacted Children’s Hospital and they were sending a transport team to take him there because he would need surgery.  I called David in tears.  He later told me that he couldn’t make out most of what I said except that it meant he probably did have Down syndrome.  He drove back to the hospital and followed our sweet baby boy down to Children’s.  I was released the next morning and my dad took me to be with my husband and baby.

This little baby has been through so much in this past year; four surgeries, three bouts of croup, rsv, recurring sinus infections, and all of the testing for infantile spasms (testing which came back negative, thank the Lord.)  That doesn’t include all of the many different therapies we have had on a weekly basis.  Despite it all, he has thrived.  I took him down to Children’s Hospital today to the Special Needs Clinic.  He was there six months ago and underwent developmental testing to determine how he was doing physically and cognitively.  The last time we were there, he rocked the tests!!!!  He was age appropriate for everything.  I was really nervous going into today.  I knew he was behind physically.  Before his colostomy closure he didn’t tolerate tummy time very well.  Because of that, he doesn’t have a lot of strength in his shoulders.  He scored 7 months old for gross motor skills and fine motor skills.  He scored 10 months old for cognitive abilities and 10 months old for expressive and receptive speech skills.  I was disappointed.  When the therapists left the doctor came in to talk to me about the results.  She asked me how I was feeling about his scores and was surprised at my disappointment.  I tried to explain it to her.  As a teacher I knew my now 10 year old had a learning disability.  I could tell you exactly what he was unable to do that he should be doing.  But going to an IEP for him and having other people tell me was hard.  She smiled at me and told me that of all the babies she sees with Down syndrome, PJ is way ahead of the eight ball.  She was so impressed with how well he was doing.

The more I think about it, the more I realize that we are all impressed with PJ.  Not just because he is growing and developing.  I am most impressed with how he draws people to him.  There is something so special about him that his great aunts and uncles have traveled hours just to meet him and see his smile.  He draws moms at the school parking lot into the back of my car to make baby talk with him.  He draws people who don’t ordinarily pray to pray.  And he is the best proof I know of that prayers really do get answered.

I wanted to make a video to celebrate his first year.  I happily picked out cute pictures and a great song and then made my brilliant husband figure out how to put it all together.  Happy Birthday sweet PJ.  You have blessed our family and brightened all of our lives.  Everyday you make me smile.


9 Comments (+add yours?)

  1. emcornell5
    Apr 24, 2012 @ 21:48:14

    Congratulations on making it through the first year Lisa! Here is to hoping that year two is much easier on you, and PJ! You guys have had quite the wild ride, and PJ is doing fantastic, you should be proud. Try not to get yourself down about those developmental appts, those numbers don’t mean much when, it is the whole picture that matters.


  2. Nancy Foley
    Apr 24, 2012 @ 22:24:04

    Happy BIrthday PJ !!!


  3. Megan McComrick
    Apr 25, 2012 @ 07:35:29

    Annie and I just watched the video-it’s darling but you have to really see him in person to see just how really really cute he is in person!!! What kind of creepy mom jumps into the back seat of your car to hang out with sweet PJ, you should look into a restraining order.


  4. Elaine Kocab Novosel
    Apr 25, 2012 @ 07:39:16

    Happy Birthday to a fantastic and sweet Grandson. You’re awesome and we love you very much. Grandma Kocab


  5. Susan Chrysler
    Apr 25, 2012 @ 09:38:12

    What a blessing you are, little PJ! We adore you! Happy Birthday!!!
    Papa and Dae


  6. Kimberly Chrysler
    Apr 26, 2012 @ 13:10:12

    Happy birthday PJ! Lisa, the video is awesome! Brought tears to our eyes! PJ is just so precious (all the the boys are!) and Gary and I hope to one day be able to meet them! Take care!


    • lisa
      May 15, 2012 @ 23:38:05

      we’d love to meet you too Kim!!! maybe next time we’re in Northern Michigan we can all meet up. My boys have been asking about the Sleeping Bear
      Dunes lately. Might have to road trip this summer.


  7. Carol McDonald
    Apr 28, 2012 @ 11:44:23

    God blessed you with the best family, irthday, PJ


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