Sunday, November 7, 2010

One Year : "Holy Cow"

Hello.  It feels so good to finally be writing in Madison's blog.  I seem to be at a place right now where I need to hear from you.  Madison is doing exceptionally well and I continue to stand completely amazed at her progress.  We are trying to slip back into normal life and actually starting to feel like a normal family.  This is a new feeling... I've never felt like a normal family with all the heart stuff going on. lol  We have lived the past 2 years with many restrictions and now we have none.  That is such a weird feeling.   For the first time since Cooper and Madison were born, all four of us now attend all three meetings of church.  This includes Nursery... yikes!  But she loves it... ugh!  Madison continues to have Early Intervention two times per month.  She has graduated from physical thereapy and is currently receiving speech therapy.  She is a little behind compared to a typical 2 1/2 year old due to her old heart.  I have been reassurred over and over again that she is catching up fast and I really don't have anything to worry about.  ( but, how does a heart-mom not worry?  ha ha)
Here's why I need to hear from you... currently our family... ok, maybe just me... have been dwelling in a very surreal environment.  (please tell me this feeling has overcome others)  We are currently sitting in the one-year ago timeframe.  It was one-year ago, October that we were notified that Madison needed to be listed for a Heart Transplant.  And now it is November and November 30 is creeping up on me.  Madison is my miracle baby and she has turned out just fine.  She is absolutely beautiful with a beautiful new heart.  We have been so blessed.  Everything we prayed for and hoped for turned out perfectly, yet I am dealing with the one-year ago emotions.  I just can't believe that we went through a heart transplant.... Holy Cow!  I often want to ask, "are you serious? For real?  ... No Way!"  I think the emotions that I feel today might be because I was so strong during Madison's transplant and now that a year has gone by, I can let me guard down a little, only to find that a flood of emotions appear.  At times it seems so silly to be so emotional.  I remind myself often that Madison is just fine, but then I remember it was a heart transplant... Holy Cow!  We survived and it was so scary, but we did it. 
Below is the beginning of a post that I started to write on October 8... I never finished it  (go figure..)
     Friday, October 8 has come and gone and we didn't receive a phone call from from Dr. Everitt.  We definitely weren't expecting one, BUT then again,  we weren't expecting her phone call last year either.  October 8 marked one year since the phone call that I received from Dr. Everitt where she stated and explained to me in great detail that we needed to list Madison for a Heart Transplant.  It still gives me chills and the tears instantly come as I think about it.  I had never been so terrified in my life.  As I listened to Dr. Everitt, I stood in the hallway of my little home, with tears running down, and starred at Madison as she sat eating breakfast in her highchair.  I remember this day just as it was yesterday and I am still so terrified.  The butterflies of nervousness have never gone away.  Maybe that's just part of being a heart-mom... I don't know.  If nothing else, the terrified feeling is a great reminder of the lessons I have learned throughout this past year.  Two of the lessons include, The importance of life and the meaning of a family.


The Blanchard Family said...

I am so glad to see a post from you! I have been wondering about Miss Madison and hoping that you all are doing well! I love your post because I am currently dealing with the EXACT same emotions from 1 yr ago. It was 1 yr ago in Sept that I gave birth to my twins and lost my heart baby the same day. I was very strong during it all but all of my emotions are now uncontrollable. I think that world of you and all you have been through and I am so happy to see how well your darling girl is doing. Best wishes!

Amy said...

I LOVE your blog posts. Keep them coming, they are always so inspirational.

Andrea S. said...

I think it is only natural that you live with a little fear in your heart. I would guess it's like have post traumatic stress, because heaven knows it was traumatic!! I think that events like this change us forever. I would just try to write down the monumentally good days and post them on the fridge. Try to celebrate those days with a diet coke/ice cream party and focus on them. I loved getting to see you and we still need to plan a girls weekend and star valley :)

Shelene said...

You are amazing! All 4 of you! I don't think that surreal feeling ever goes away in any part of our lives that is, well, huge. I am often pinching myself as I look at my twins wondering how I I got two of them. And other times in my life I can't believe all that we have dealt with in the last 6 years. We just sit back and reflect on how many wonderful things we have to be grateful for.

Sherri said...

I think Andrea and Shelene are right, it will be a part of your life as you take the time to truly look at what your family has experienced. In my opinion, you are showing your healthy mental situation by expressing your wonder and ability to now emotionally "freak out" about what occurred. No one wants these experiences. But we find ourselves in the midst of them.

You are doing a wonderful job of raising these two children! Remember that! Two of Heavenly Father's children who chose to become a part of your family. You were prepared for this time. You have the capability to meet the challenges you and Mark will face.

And besides, Families Can Be Together Forever!

k.k. chamberlain said...

Michelle, your blog makes me cry, every time. I look at Isaac and think about what you went through and it just sends me! You are such an amazing family. I'm so blessed to be a "part" of the Hiles story. We love you and want to support you. We're hoping to see you on December 4. YAY!

Ryan and Hilary said...

I really do wish that there was more information out there on the emotions of going through a traumatic event like a childs illness. Reading your post was like reading my own journal. I honestly think that it is partly post traumatic stress disorder. We feel like we are in the clear as far as their health and we can feel some of the emotions and "freak" out a little bit. I also feel that because of our faith in our Savior and having a knowledge that he and his angels were watching over us constantly and now we are not in such dire need for their constant care that we are able to rely on our own strength a little more. I have asked myself more than once why I can't have that constant feeling of peace that I had while going through the wait for Daxtons transplant. I know it is because of my own shortcomings that I don't have it.

I have felt these same emotions and have talked to other transplant moms that have said the same thing. It is a step by step road. But it definitely is good to talk to others who have been there.

We are now every 3 months for checkups and it kills me. I am dying to go in and get him checked and to see everyone. When is your next checkup? Hope to see you soon.