Day 20: A letter to someone that changed your life

As I was car pooling home from work yesterday I was talking to my friend Weston and telling him how I couldn’t decide who to write this letter to.  He simply said “How about JD?”  It was an ah ha moment for me.  I can think of a million people who have changed my life over the years but none quite as dramatically as Deeds, so here it is.

Dear Dieter,

Do you know why we call you our miracle boy?  You were my 4th pregnancy.  I was heart-broken and daddy and I had decided to wait a while before trying to get pregnant again when we got the surprise of our lives.  YOU!  The pregnancy was not an easy one and at 27 weeks I was diagnosed with Pregnancy Associated Cardiomyopathy.  The doctors feared that if we ever got pregnant it would kill me so they told us you would be our only child, if you and I survived the rest of the pregnancy.  I cried and cried, praying that we would both be ok.  5 weeks before you were supposed to be born my heart wasn’t working well and they decided it was time to welcome you into this world.  You were born January 16, 2008.  I only got to see you for a moment before they took you away from me into the NICU.  Hours later a nurse finally let me sit in a wheel chair to go see you.  I had never felt so much love as I did for you that day, and so much concern.  Over the next week you had many problems.  There was issues with your blood and an infection quickly took hold of your little body.  I will never forget the feelings of helplessness as you lay in the NICU.  They told us you would be there for weeks, and you even had to have a spinal tap at only 1 day old!  Before they could figure out exactly what was going on you shocked everyone and started to get better!  It was a miracle and we were able to bring you home a week after you were born.

You were not a “typical” baby from day one.  But I didn’t know any better, you were our first and we were just so excited.  You were perfect.  You didn’t show a lot of emotion and we would tell people that you made easy babies look bad.  You were just heaven.  The older you got we really started to notice differences between you and your cousins.  Things we called quirks.  You were much stiffer than your cousins and never learned to crawl well.  You would flip onto your back and scoot on your head.  It was worrisome but then you learned to walk right before your first birthday so we didn’t think too much about it.  We were told to get you to stop walking and running on your toes but it was hard.  When you started to hit the age you should have been talking and babbling you didn’t and then you started to get upset if I would pick you up.  I cried many nights because you would let daddy hold and hug you but no one else.  Shortly after your second birthday we finally had you looked at by a speech therapist.  You qualified for early intervention services and it started us down the road that led to the diagnosis of Autism Spectrum Disorder. Then just a few weeks ago you were diagnosed with PVL and mild cerebral palsy.  While these caused a lot of questions for us they also answered a few.

Things have been very hard this year.  You would throw a lot of fits because you couldn’t communicate with us, and they often escalated beyond what I’d seen other children do.  It wasn’t until your baby sister (also a miracle for us) started to grow up that we realized just how different you were.  Each time we seemed to break an odd quirk you would come up with something else, sometimes worse than what you just stopped doing.   We dealt with learning about these new diagnosis and trying to educate ourselves while educating others.  Often times outings in public ended with meltdowns and comments from strangers that weren’t helpful.  The therapists urged us to keep taking you in public and into crowds no matter how hard it was for us, they said it would help you in the long run. We made it a goal to keep you active, get you out and keep working with you every day!  Things aren’t just hard, they are different in good ways too.

You have taught mommy patience beyond what she has ever known.  We have worked very hard to get you to hurdle some milestones and it has taught your dad and I how to work together much more than we did without you.  You became our common goal and taught us how to love each other more so that we could lean on each other.  Every parent is proud when their child accomplishes something new, with you it was a whole new feeling of proud.  When you hugged me for the first time I cried for 2 days.  I was so excited.  Every time you do something new that we have worked on with you for months it is a celebration for us.  Without all the struggles and hardships we wouldn’t appreciate the little things as much.  We appreciate every milestone not just with you but with Gwen as well.  We appreciate you both so much more.

You are special JD.  You are a son of God and we are humbled that he has sent you to our home.  I don’t often feel like I am doing a good job as your mom, I feel like you are such a treasure and choice spirit and I just want to do what its right for you.  Those rare times when you make eye contact with us is magical.  You are such a sweet soul, and I am honored to be your mother.  You allow us to see the world through a unique perspective, one I wish everyone could see and appreciate.  Thank you.  I look forward to growing with you and I can’t imagine life with out your quirks.  You have changed my life dramatically, and I’m thankful.

I love you,

Mommy