Friday, August 13, 2010

how kelly does it...

I've never met Kelly. Until today. And you have no idea how excited I am. And a little nervous. This morning I leave for Las Vegas on a getaway with 9 other amazing moms {Kelly included} who also have daughters with Rett Syndrome. It's moms like Kelly who make me believe I really can get through this.

Here's how Kelly does it...

{Rett Syndrome} I went through a whirlwind of emotions, never imagining how heart-wrenching it would be to watch our child slowly lose most of the abilities she had learned during her first two years of life. I went through the grieving process over and over. I remember being sad and crying for days following Brooklyn’s diagnosis on May 21, 2005. Also, I was angry. Why was this happening to our sweet little girl? I felt a loss of the dreams I had for Brooklyn since the moment I found out I was pregnant and heard that sweet heartbeat on the ultrasound. Why does she have to suffer? Why can’t my daughter speak, or go for walks, or even talk back to me? I was like a toddler with nothing but “why” questions.

{Down Syndrome} September 12, 2009. Boston entered this crazy world ten weeks early weighing 2 lbs. 3 oz. and fighting for his life. I, again, was asked to be stronger than I ever thought I was capable of being. The first time I held his tiny body in my hands I felt love like I had never felt before….he was a fighter….he was MY fighter. Despite surgery, multiple infections, and other mild complications he was going to be fine! It was not until seven weeks later that there were concerns that something was “just not right.” Genetic testing was completed and Down Syndrome confirmed. Again, my heart was breaking for my child. Why is this happening? Why do MY kids have to struggle in life? He was supposed to be Brooklyn’s protector. What now?

I know the percentage of failed marriages increases within families that have a special needs child. Make that two special needs kiddos and I suppose the number is staggering, but I knew that I would NEVER be one of those statistics! Maybe since my ex also was dealing with his own rare disease it added additional stress as well but the sad truth is, I have now increased the strength of that very statistic I vowed never to become part of. I prefer to not share the gritty details of why it ended. There was unfaithfulness that continued over and over and promises that continued to be broken. In turn, I too was left broken and again asking, “Why?”

When Maren asked the question, “How do you do it?” It made me look at life and the past three years. I have been thinking about this blog post for weeks now and three words continue to come to mind: faith, family, and friends.

{Faith} I have always considered myself to be strong in my faith, but have asked over and over: Why is all of this happening? Why does it have to be me? I would not say that I have ever doubted whether or not God is still there, but I confess that this is the closest I have ever come to wondering. I do believe, though, that without God, this time in my life would have been a much darker place for me. My hope in Him and in His love for me and my kids gets me through.

{Family} I know many people love their family and depend on their support, but I can, without a doubt, say that I would not be the mother I am today without them. My sister Kristin is my best friend. She is my strength when I feel like I can’t be strong anymore. She wipes my tears and holds my hand and even sleeps over and gets up with the kids when all I need is to just sleep through the night. She reminds me that it is ok to cry but helps me remember how to smile too.

My mom and dad moved to town when Brooklyn received her diagnosis and now through the divorce have moved in with me to help financially, emotionally, and physically with the kids. They are a constant support of love and encouragement to me and to Boston and Brooklyn. I am so glad that Grammy and Pappy are able to play a daily part in our lives!

{Friends} I have found that often times my most supportive friends are people that I have never even met! I do not know how moms dealt with special needs (especially rare ones like Rett Syndrome) before the internet! Blogs, facebook, chats, and email have allowed me to connect with other mommies that “get it.” My friends locally love me and want to support and help me and I love them for that! However, they do not deal with Rett Syndrome or Down Syndrome on a daily basis. They do not wonder if their child will ever walk, or talk, or start struggling with seizures. They do not dream of hearing the words “I love you” come from the lips of their children. I do. The mommies I meet online do. Amazing moms who are raising amazing daughters. Daughters that are my inspiration, my motivation, my encouragement to make a difference!

I am blessed to work from home as the program director of Girl Power 2 Cure and help raise money and awareness for Rett research. I am thankful to have a job I am passionate about, a job that one day might play a role in finding our cure for Rett Syndrome!

I am thankful that my faith, family and friends have allowed me to not only “do it” but do it in a way that I can hopefully touch lives and make a difference.


ed and kelli said...

i am in tears. wow. now that's a strong momma!

Karen Hauley said...

Kelly, thank you for your words of inspiration. You are an amazing mom with more strength and courage than most will ever need to demonstrate.

Molly said...

Seriously amazing. Thanks for the post.

Rach said...

Wow. I have no words...just wow.
What an inspirational mom! I hope I can be like that!

Jenny said...

You are an amazing woman. Thank you for sharing this...and thank you for fighting every single day. I'm so impressed, and a bit overwhelmed, with your circumstances -- but you have prevailed...or at least keep fighting to do so everyday. Thank you for your example...and thank you for your kids. They are blessed with one great mom.

Kelly said...

Thanks ladies for all of your comments and thanks Maren for posting "my story" LOVE YA girl!!

Erin said...

Maren what a great idea to do this!

And Kelly I would say you have most definitely touched lives and made a difference! Great post!!

Rhea said...

kelly - i feel so blessed to know you, even though we have never met. thank you for the support that you have given me, especially the last couple of months. i know that someday there will be a cure for our girls. you are seriously the strongest person that i have ever known. hugs!!!!!!

Anonymous said...

I am proud to be your friend and sister in the fight for a cure!
Lori Moorehead

Shannon said...

What a courageous battle you fight. And I can tell, that your children are SO very worth it. Thank you for sharing your love and your story with us.