How do you do it?

howtheydoit

Lately, (maybe since it is Awareness month and I am talking about Down Syndrome and Rett Syndrome more) I have had quite a few people ask me “How do you do it?”  Which reminded me that back in 2010, I had a friend that was doing a series of blog posts about “How do you do it” – she asked several women in her life to simply complete that sentence. Sounds easy enough right? Here was my response to her a little over three years ago:

{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?

{Divorce} 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!————————————————————————————————————————————————————————————————————————————————————

Fast forward three years, as people ask me this question now I think about what has changed in my life. Would I answer this question differently now?

{Faith} I still believe, I still have faith  – I HAVE to, however – I can’t lie – actually attending church almost never happens. It is tough – really tough. BUT, I really NEED to, I need to make it a priority for me – for the kids, absolutely! Prayers are a must around here – to survive. Without God, this crazy life would be MUCH crazier!

{Family} As far as my parents and sister go – nothing has changed here – they are still a DAILY part of our lives. My mom helps out transporting Brookie to and from school everyday and helps me around the house too when the laundry is getting out of control or I haven’t made it to the grocery store :) Dad has become Boston’s “go to” guy when we are running around with appointments for Brookie – they have become the best of buddies! Kristin – well, not only is she still the best aunt in the world, she is also Brooklyn’s third grade teacher this year! Which, ROCKS! Inclusion ROCKS! She also continues to be MY rock – yes – she is my sister but has been my bet friend since birth and continues to be. I could not “do it” – do this life without her.

There has however been an addition to my family since this original post – and that is Jon. The man that God sent straight from heaven just for me and the kiddos! Three years ago as I wrote this I JUST KNEW it would be the kids and I together forever. I will not say alone because with my amazing family alone would never be an option but single – yes. Who in the world would walk into this life voluntarily? Relationships are tough enough but add in two extra special kiddos and I just assumed it would be too much for someone else to see, to love. But that is exactly what happened. If I am being honest here – I think he fell in love with Brooklyn and Boston before he actually fell in love with me (and I am ok with that!) But he did. He entered our world….and stayed. Not only stayed but filled all of our lives with more love and happiness than I ever thought possible! He is my love, my partner in this crazy life – he helps me “do this” life day in and day out…..as a team.

{Friends} My friends of course remain a stabling force in my life. I still believe that my special needs mamma friends “get me” the most. They are the ones I can call.text.facebook chat.or facetime. at all hours of the day or night and they get why tears can come over the strangest of things. Because they live it right along side me – yes they might be living it in another state – (or country even)  they are living it and we are fighting this battle together – for them – I am forever grateful. They absolutely help me “do it” – and encourage me to “do it” better! I do need to comment on a HUGE addition to this category: Brooke – she is Brooklyn’s 1:1 aide this year in school and I really can’t come up with words of thanks great enough for her and the role she plays in Brooklyn life. She is her voice everyday at school. Like I said before – At school, she is Brooklyn’s feet, hands, and voice. She is her communication partner and friend. She believes in Brooklyn – in her intelligence, her ability to make friends and be a good friend and for that, there are not enough words of thanks.

So, back to the original question – “How do you do it?” Honestly “I” don’t. If it were just me there would be no way I could. I would be failing miserably! They say it “takes a village to raise a child” and I could not agree more – thank you to each and everyone of you that are a part of my “village” – I could not do it without you!

 

3 Responses

  1. Sara October 25, 2013 at 2:24 pm | | Reply

    Seriously love this post, you are certainly part of my village. Love you xxx

  2. Peta October 25, 2013 at 4:58 pm | | Reply

    thanks for that…..thanks for keeping it real. for not sugar coating it.

  3. Terri Wenzel October 28, 2013 at 9:13 am | | Reply

    Just want you to know that I am crying like a baby right now. Kelly, your family means the world to me. I don’t hardly ever get to see you but want you to know that you are in my thoughts and PRAYERS daily!!!!!!

Leave a Reply