Monday, June 29, 2015

The Next Step for My Bear

I have had many reach out to me wondering if Laynee has made any progress since returning home from our week long clinic to Nationwide Children's Hospital last month. I cannot tell you how much it means to me that so many of you have thought about her & prayed for her.

However, unfortunately, we were only traveling backwards in our trial of the medicine regimen. My little bear was getting frustrated & mom was a stressed mess as there seemed to be not one single step forward no matter how hard we tried. We worked daily with our Nurse Practitioner from the clinic making daily adjustments, however, we knew when the time came to call it quits as this was not going to work for Laynee's body.

So, after another team meeting there of the clinic staff, I received a phone call with the next step. I knew already in my heart for weeks that the Malone procedure was probably in her future. But, I was shocked over the phone of the additional step they wanted to make. As much as I really did not want to send my baby back in for another surgery, I knew we were just at dead ends & there really was not a choice.

Laynee's colon is extra long & extra curvy; especially in that tiny body of hers. Some people can live with a colon like hers with no issues; others cannot. The medicine regimen told her doctors just how much of an issue her colon was possibly causing. So, even though it felt like we just went backwards over the past few weeks, it did give us some needed information in which I have to be thankful for.

The last week of July, we will head back to Nationwide Children's Hospital for surgery. They will be removing part of her colon & putting in a Malone. For the Malone, they will connect her appendix to her abdominal wall & then create a valve mechanism through her belly button. This tube is how we will be able to give her daily medicine & in time, Laynee will eventually be able to do this all on her own in her own privacy! She will be in the hospital for at least 6 days after her surgery & we will need to stay a few more days in Ohio for daily checks before they will allow us to return back home.

This is the next step for Laynee. This does not "fix" her. There is still thought that her sacral nerves do not send messages to her brain either. This is basically a step that will make her lifestyle somewhat easier, definitely less private for her. Her medicine regimen will take about an hour out of her day but this will allow her a life with a lot less fear as she travels through her days & will help her confidence which at times has been a bit of a struggle.

I still have just under 30 days left before this occurs & I cannot deny that when I stop & think about it, I cry. I cry because surgery is scary & they are doing some pretty crazy & invasive stuff in that tiny stomach of hers. I cry because I hate that she is going through another surgery. I cry because it has been such a long journey for the past almost 4 years of so many trial & error stages with non-stop dead ends with no answers & no progress. We have tried every road, taken every turn we were given or could find; I've spent hours researching & tracking every part of her day. So I pray now this is going to help her live a better lifestyle. I prayed for years for her to "be fixed" and although that is not a true option, I feel we have been led in the right timing to the right doctors with a chance for an easier lifestyle for her. So, I cry because maybe, just maybe, her road will get a little easier & her daily frustrations & struggles will diminish.

Either way, she comments about this being the way God made her body & although she doesn't understand or like it she has to accept it, but I will tell you that maybe her body struggles functioning correctly, but He certainly blessed her with an amazing athletic talent.

Until Next Time~

Monday, June 22, 2015

It Is My Choice

I have started a blog post a handful of times in the past few weeks but always left unfinished. I have felt like I was hanging on by a thread for this entire month of June & although I had words I wanted to write, nothing was there. 

Yesterday I was home alone again & had been on an emotional ledge for weeks now & suddenly felt like I was about to leap off that ledge. I had to get out of my house for a bit. I needed to go some place else where I could just think, just be, just enjoy a beautiful surrounding. A place I could be alone, yet not feel lonely. 

So, I got in the car & drove. 

I ended up on the beach of Lake Michigan. 

I walked the pier taking in the fresh air. Enjoying the beauty of the water, although it was a very hazy day out. I sat at the end of the pier for some time just alone in my thoughts, in my memories, in my dreams, in my fears, in my hopes, in my prayers & in my heart. 

The truth is that sometimes change is hard. Even when you know change is coming or that a chapter is ending sometimes the reality of it all strikes you out of nowhere & what you have known to be your normal for years is no longer your reality. 

Maybe it is more like that thread you were barely holding on by to get through the days finally broke you free. It allowed you to step back & look at the big picture again. 

I have struggled lately feeling pulled in a million directions, all taking every ounce of energy out of me. Some days simply running my one single mile for my run streak feels like the hardest thing in the world to do. 

Right now, I have struggled accepting my new "normal." Maybe it comes down to even when you know it is time to start a new chapter, that first page can be hard to begin. 

As I sat on the pier I realized  how different each wave was. Some big, some small. Some weak & some strong. Some you could walk right through, while others you would have to fight with everything you have to stay above the water. 

The waves are just like the pages in our book. Each page can be different, each page has different words. Some deep, some simple. Some filled with love, some filled with tears. But, each page can be beautiful, just like every wave. We have the choice to scribe them full of love, beauty, faith, hope and our dreams and spread a positive energy for those around us. 

As I walked back towards the beach, I could feel the negative me that had been crying on & off for days was left behind. I could feel the strength coming back that I will need to embrace my new normal. 

No doubt I have struggles ahead, especially in the next month & a half, but I will fight to keep focus on the positives. I want to focus my energy on the blessings in my life & inspire me & hopefully others around me. 

It is my choice to focus on the positive & let go of the negative. I am not perfect. There will be days, but I will fight. This is how I want to live my life; shining a positive energy.  

So here I go. New chapter. New pages to scribe. New words to use. New adventures to travel. 

Until Next Time~

Thursday, June 4, 2015

Why I Get Tears...

This picture. 

I have looked at it so many times since it was taken by my daughter.

I get tears. 

Every time.


You have no idea what that picture means to me.

When I look at it I see a woman celebrating life. I see a mama playing with her kids. I see a woman participating in life. I see a mama spreading fun & joy. I see a woman who isn't afraid to be herself. I see a mama showing an example of self-confidence & self-love. 

I did not used to be her. 

I used to be standing on the sidelines of life. I used to not love who I was or my body. I used to not be the confident one running around like one of the kids. 

This picture shows the mama & the woman I want to be. 

This picture was from a field trip to the sand dunes with my daughter & her fourth grade classmates. My Jacee, who is my biggest fan, told me she had informed her classmates that I would definitely be running on the dunes "because my mom works out a lot & runs marathons." I cannot even put into words how amazing it felt to be literally running up & down the dunes racing my daughter & her friends & even racing some of the boys who wanted a challenge. I was just like one of the kids. 

A few years ago, this field trip would not have been this way. I would have stood & watched the kids have fun. I was weak then, overweight, tired, and physically unhealthy. 

I also got in a few pictures with my daughter and her BFF who is like a daughter to me as well. I captured the memory for all of us; Jacee will look back & see her mom on this trip. Again, a few years ago, I would have stayed behind the camera not wanting to be seen.

It took me some years. It took some major failings. It took some tears. But, I have grown into the woman I have always wanted to be. I am exactly who I am & I am proud of that. 

This picture. 

Will always give me tears reminding me of the journey I have traveled & the path ahead filled with many more wonderful memories. 

Until Next Time~