Recently, I realized that perhaps I have failed as a friend with a special needs child. Perhaps I have failed to communicate what life has really been like since having a daughter with Down syndrome.
I am blatantly honest on my blog. It is how I have survived the hard times and celebrated the good times. I have found a new balance in myself and that balance includes naked honesty.
Sometimes being so honest can cause people normally not touched by a special needs child to see only the negative and stare in horror, unable to look away because of the grotesque nature of the accident.
Lately I have gotten the feeling that people are carefully watching my life and praying like anything that they don't wind up like me. My first reaction is to cry and feel sorry for myself that people are pitying me in such a fashion. My second reaction is anger and hurt.
I have failed as an advocate of Down syndrome.
I have failed to convey how blessed and wonderful my life is, not in spite of, but because of Addison.
I wish that I had a friend with a child with a disability when I was pregnant with Addison. I wish I could have watched someone go through hell and see how none of it even seemed like a blimp on the radar because of the love they had for their child.
I was devastated and heartbroken when I found out that my daughter had Down syndrome because I had no idea what Down syndrome was. It sounded like a horrible defect to me. a mistake. I was so ignorant.
I wasn't trusting God in His complete sovereignty. To my way of thinking, this shouldn't happen to me. I was too good to be touched by such a trial. That was for other, less educated, less classy people. People not as deserving as myself.
I was an absolute arrogant fool.
God created my daughter perfectly. perfectly. There is nothing wrong with her. Health problems were part of her perfection. Having to work through those was part of His plan for us. He created her and has sustained her life in a miraculous fashion, turning my life upside down in a wonderful way.
In a way He gave me far more than I deserve. He gave me the most amazing baby I could never have imagined in my wildest dreams. He gave me Addison.
You have seen me this past year- open and exposed- showing my fears and my doubts, revealing my inner struggles as I faced this change in my life.
I am here to tell you that Addison is honestly the best thing that has ever happened to me. Having Addison has changed my selfish little self into a slightly less selfish version of myself (just call me a work in progress). It has made me more accepting, more loving, more human.
Loving Addison has been my favorite thing ever. Holding her close and thanking God every day for giving her to me- I didn't know what living was until she was here to show me.
I have failed as an advocate of Down syndrome when I see others around me desperately praying and pleading with God to please let them not have the life that I have.
First of all, don't you think God knows better? Don't you think God has a perfect plan for your life as well? If He has a special needs child in your future, will fretting and worrying really change that? If He has a special needs child in your womb, the unknown can be scary, but you also can know that you are about to receive the greatest blessing known to mankind. Why would you desperately plead for something other than God's perfect plan for you?
Second, how can you look at the love in our house and the joy and happiness and wish anything else for yourself? Your joy and happiness may come in another form, or it may not. Either case, don't waste your pity on me.
My Addison, my Chubbs, is my greatest blessing. God gave her to me because He is good.
I'm sorry if you look at my life and are thankful every day that you aren't me because I have a daughter with Down syndrome and a lot of health needs.
I'm sorry because you just don't get it. You don't get what life is truly about. You don't get what love is really all about. You don't get what honestly trusting God is all about.
I'm sorry that I have failed in my mission to portray that.
This past year has been difficult- surgeries, hospital stays, financial struggles because of the former-
-but I am here to tell you that I would do it all over again in a heartbeat for my Chubbs. None of that even matters because I have Chubbs. Have I not made that clear? What do I need to do to get you to hear me? I love my daughter and will fight for the rest of my life for her to have the most amazing life possible. I will diligently work alongside her so that she can reach her full potential.
And you know what? I will love every minute of it because it's another minute that I get to celebrate life with my greatest miracle.
I look in her face and my eyes well up, not because she has Down syndrome.
Tears start to fall not because she has health problems.
I cry when I look at my beautiful daughter
because I am so thankful
that she is mine.
I am so blessed.
It is my dream that those of you following Addison's amazing journey would not fear what we have for children. It is my dream that you recognize God's goodness in our life and you trust Him for goodness in yours.