Friday, November 23, 2012

Maybe One Day

I hope this comes out right, but as a disclaimer I want to say that this is in no way intended to sound angry.

I have heard 3 times in the past week alone, "God gave Ayden Jane to you because He knew you were just the right person..." or something like that.  Now, it is always meant as a compliment or at least a heart felt observation or something.  It is intended to be encouraging and supportive of the challenges we have overcome along side Ayden Jane.

I have heard such comments for so many years now and with so much time to mull it over, I believe this.  God chose our family from the beginning.  He knew that Gary and I would be blessed with 4 kids.  I do not believe that He ever intended for AJ to have PWS, but things happen.  Just like I don't believe that God chooses for people to have cancer or diabetes or Alzheimer's or any other such thing, but we live in an imperfect world. Would you say God chose your wife to have cancer because you are a good husband and you can help her through it?  God can use these awful things to bring about joys we would never be able to comprehend otherwise.  He can reveal Himself in marvelous ways in these circumstances if we allow Him to do so.

I was not chosen as AJ's mom because I am somehow special or better prepared or equipped.  If there were any logic to that then all special needs kids would be born to families who are somehow more capable than other families.  PWS, autism, down's... none of them care what the financial or educational status of the parent is.  Some families are able to withstand the strain of raising special needs kids some crumble under the added strain.  I am thrilled to say that we have withstood and in some ways become stronger as a family thanks to Ayden Jane having PWS.  We have been blessed by extended family and friends that have propped us up with prayer, encouragement and even finances when we just couldn't go it alone.

Honestly, I mostly struggle with anger that Ayden Jane has PWS.  So, often times this sentiment makes me angry.  Sort of like the reward of being a good parent with the first 3 is that our fourth has PWS.  I know, I know that is not what is meant when people say that God chose us...  I think the meaning is more along the lines that AJ is blessed to be in a family that is willing to work so hard for her.  In all honesty, watching your child struggle to do things that they should naturally, watching them daily manage a chronic life long disorder and all the while knowing that any day they may begin to feel hunger every minute of every day just makes me feel angry, not 'chosen' or blessed.  These are things I cannot fix so I often feel incapable... What parent feels adequate when their child has needs you cannot meet?

So what would I say to a friend whose child is born with PWS?  It sucks that baby has PWS but I promise you I am here for whatever you need. Then just listen.  We need to pour forth.  As the sting subsides:  I know it is rough and that neither you nor little one signed up for this but you are doing amazing.  Little One brings joy in ways I didn't know existed.  I hope you are as blessed by him as he is blessed by how much you love him.  If you don't feel that way today it's okay.  Some days you will and some days you won't.  It is a long sometimes lonely road raising a special needs kiddo but if you are able to take a moment to look around you will see God in many new ways.  You will learn what is important in life.

I hope that the day will come when I don't get angry that Ayden Jane has PWS.  That I don't get angry watching her struggle.  That I don't feel bitter about how hard it has been on our other kids.  That I stop wondering what AJ would be like without PWS.  Maybe, one day, I will be thankful for PWS.  


  1. I hear it. I'm never sure what to say when people say things like that. Like you said, I'm sure it's well-intentioned, the theology to me is all wrong. But alas, it is what it is.

    I struggle with the anger sometimes too. I wish I could say that I've put it behind me, and maybe I have to a greater extent compared to last year or the year before. But it's still there. The worst is when I get mad at Dean, which is horrible because it's not his fault. :( But generally, I just get mad that he has to struggle so much. Working on it. :/

  2. Thank you. I hear those same words (or a variation) all the time. And "You two are such GREAT parents for doing all of this for her"... like there is an option? Are there parents who don't do everything possible?

    Honestly, the anger is an on-going struggle for me. What this does to my faith in God is a daily struggle for me. My Type-A personality struggles with my inability to "fix it" on a daily basis. Sometime I wonder if I struggle with it more than Katie. She is happy, determined, smart and outgoing. I have so much to be thankful for....but still....