Wednesday, February 20, 2013

Live in the moment

February 24, 2012 is the day that Rett Syndrome officially entered our lives. That was the day we sat down with Oaklynn's doctor and were told the news. That was the day I felt my life was over and there was no way I could go on living. I remember trying to sleep that night but every time I closed my eyes, I kept picturing my sweet little girl grown up and in a wheel chair. I kept picturing her lying there helpless and would just start sobbing. I just didn't understand how she could go from where she was now and continue to get worse. I kept trying to convince myself that she would be the one exception to the rule and she wouldn't regress like all the other girls do with Rett Syndrome. She would be a miracle and astound everyone. I didn't get any sleep that night and I laid there crying all night. That feeling that I had was one that I have never felt before. I literally felt like my life was over. I didn't know how I could pick myself up and go about my day. I didn't eat much for a few days but forced myself because I was 35 weeks pregnant. I would sit there all day watching Oaklynn crawl around and play with her toys and just cry and cry and cry all day long. How can you sit and watch your little girl who was born so perfect and know that every day was going to be worse than the last. That she may wake up the next day and stop standing, stop crawling, stop playing, stop breathing... and every day could be the last time you see her do something that she loves. It just didn't make sense to me and hurt. My heart hurt so incredibly bad that I can't even begin to describe the pain. I just had to sit and watch my daughter regress and loose skills and there was NOTHING that could be done about it. 

That whole week was a nightmare. Anything anyone said (even if I just heard someone talking and they weren't talking to me) would make me cry. I tried so hard to go out in public and get my life back together, but I couldn't do it. I didn't see how it was possible. I have a niece that is just a few months older than Oaklynn, and being around her was SO HARD. Being around any kids her age, for that matter, was heart wrenching. 

Finally, it clicked. I was sitting there playing with Oaklynn and I realized that I had to snap out of it. Oaklynn needs me and she can't get through life without me. I realized that I needed to focus on her right here and right now. I couldn't cry about what would happen or could happen to her because if I did that, she would regress and I wouldn't get to enjoy the things she was able to do. So I let myself have that week to mourn the child I had lost. I cried and I let myself be sad. Once that week was up, I stopped reading about what could happen to her and thinking about what I would have to do for her as she got older. Instead, I started living in the moment and enjoying all that she was able to do that day. I still to this day have my moments of weakness where I sob uncontrollably... and that's OK. I think I still have the right to cry! 

When Oaklynn was born, I signed up on a website that would send me weekly emails about her growth and development. I am still currently getting those emails and I am no longer able to open them. I use to open them and cry every time they would talk about how your child should now be saying so many words. How your child will start asking lots of questions... It was heart breaking to read so I decided to stop opening them.

Our most difficult moments now are watching her have "Rett Fits". These are fits that are thrown for no reason and there is nothing you can do about it. It's a bloodcurdling scream that can't be described. It's followed by her grinding her teeth really hard, throwing her body around, hitting herself in the head, biting her hands, scratching herself... and we can't do anything to stop it. Austin and I still both have a hard time when these happen because It's hard to watch your sweet girl go through this. There is a blog that was written by a girl with Rett Syndrome. She talks about how she understands it all and how she is literally trapped and how she feels about it. I came across a blog post she wrote about taking a medication for seizures and the side effects. This is from her blog

"I got so afraid and had so much breath holding and hyperventilating that I could hardly breathe all day.  I became so angry that I couldn’t be around people.  I was so agitated that I couldn’t sit still.  I felt like I wanted to leave my body, but I couldn’t!  The only peace I had was when I was sleeping.  I couldn’t even urinate.  It stopped that too.  I was afraid to be around people because my arms were swinging and I couldn’t stop chewing or grabbing.  I even remember throwing myself backwards.  It has been horrible for me."

I often think of this and how Oaklynn is inside her body crying for it to please stop. How she doesn't have control over what it does and how she wishes so bad that she could just leave her body.

When I was in my moment of denial, I kept thinking that she would be a miracle and break the rules and astound everyone. Well, she for sure astounds us! She is the most amazing little girl I have met. She may not be able to walk/talk/play like the kids her age. BUT, there are things that Oaklynn can do that most kids her age can't...

**Oaklynn can light up a room with her smile. She doesn't have to say anything... just smile. We have had people comment about how they love being around her because of that. If you have met her, you would agree**

**Oaklynn can smile with her eyes. She has this twinkle in her eyes that makes you smile**

**Oaklynn can communicate with her eyes. She understands what her abilities are and what she needs to do in order to get us to understand her**

**Oaklynn has more determination and drive than any other 2 year old I know. She wants to walk so bad and I believe that one day she will**

These are some of my favorite moments over the past year that Oaklynn use to love doing...

 She loved to crawl up to her sister and laugh with her.

She was always so curious about her.
She loved to pull to stand in her crib and bounce up and down and swing back and forth.
 She would always crawl under the desk while I was sitting at it and growl at me.
She loved to rock in the rocking chair my dad made for her.
 She loved to pull to stand at her baby stroller and walk with it.
 She loved to pull all her movies down
She always thought Mickey Mouse looked better the closer she was to the TV.

She can no longer to any of these things as she has lost the ability to get around.

This journey has been incredibly hard. I have lost many friends through this journey because they just don't understand what we are going through. There are weeks where we don't leave the house because Oaklynn has been "off" and I am working on trying to figure her out again and get her back on schedule. I have to admit... This isn't the life I pictured for myself!

I am grateful for it though because I'm happy to still have Oaklynn. I'm happy I can hold her in my arms and kiss her whenever I want to. I am grateful for what she has taught me about life and for the better person she has made me. I am grateful that researchers are SO CLOSE to a cure for these sweet girls (

We are so grateful for those that still include Oaklynn like any other child her age. For inviting her to birthday parties and to play with their kids. We may not be able to go, but that isn't because we don't want to. Life is always last minute with Oaklynn. There are many times we plan to go somewhere and are about to walk out the door and we now have to stay home because something happened (which is typical). So please don't stop inviting.  It means more to us than you know!

If there is anything I want you to get from this, it is to live in the present and enjoy your life one day at a time. You never know when things may change and never be the same. You can not go back in time to re live a moment. So just remember each day, to enjoy it and spend time with the ones you love!

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." -Christopher Reeves


Camille said...

Beautiful post! Oaklynn is so precious and you and Austin are such great parents. I can't imagine how difficult it must be, but your attitude is inspiring. I definitely agree that you have to live life in the moment, and to the fullest, because you never know what might happen. Love you!

Erica said...

so beautiful. I believe I have written this exact post! :) Living with rett definitely teaches us to go with the flow. Oaklynn is lucky to have you and Austin as her parents! and yes, she lights up a room!

Tanis said...

I love reading your blog Whitney- You write how i feel, how I felt, and everything so eloquently! I love that you will be running for our girls on Oaklynn's one year mark- what a great way to honour her and to show Rett Syndrome who is boss!!
I can't wait to finally meet you and give you a giant hug!!!

MommaChelle said...

Your pure love for her as her mother is so perfect. It brought tears to my eyes as I read it. I tried to imagine what it would be like if one day something in Kaylie just switched like it did with Oaklynn and there wasn't anything you could do to stop it, so heart wrenching. You are a great example!

mom4jules said...

I have felt many of these emotions and am touched by this tender post. Something I have had to learn these past 3 years is that our "plan" may not be His plan. Hugs from one special needs mommy to another!

Brittany ( Brooke's mom)