Monday, January 20, 2014

Happy 5th Birthday, Carter

5 years ago today, a hero was born.  Actually, in one hour and 6 minutes from now, to be exact.  At the time, we didn't realize that we would be mom and dad to a little boy who would one day wear a super hero cape and have endured things in his life, that most children never do.  We had no idea that he would be splashed across front pages of papers, articles on Yahoo or in the national archives and newspapers across the country.  We never knew that therapists, teachers, doctors and nurses would become our saving graces.  People that we least expected to be huge in our lives, appeared.  We have learned so many things about life, that we never dreamed possible.  We learned to take every baby step with caution and pride.  We appreciate the simple things in life and cherish every single day with this child who has blessed our life.  As hard as it is to believe that he has been with us for 5 years already, it's also just as hard to believe how much he has been through in those years.  A lifetime of memories squeezed into moments.  I've lost count of the needle pokes, hospital admissions, appointments, tests, trials and errors. But one thing is for sure, Carter is a fighter!  I am so proud of his for all that he has accomplished, over come and for smiling through all of his trials.
Over the weekend, we celebrated his birthday with close family and friends!  The show of people who love and support Carter, was amazing!  Our house was full of love!  We are always cautious of having too many people around at one time since Carter gets so overwhelmed these days, but yet again, he surprised us!  He did great and enjoyed all of the attention.  
As we start Carter's 6th year of life, my biggest hope is that it is even better than the last and that we can spend the next year surrounded by all the same wonderful friends and family.  Rock on, my little super star!  We love you to the moon and back!  Happy 5th Birthday, Carter!

Monday, January 13, 2014

Unconditional Love

For over a year, I have thought about the idea of a new tattoo.  A tattoo to signify my unconditional love for each of my children.  This is something that I wouldn't do on impulse or a whim and wanted to make sure it was absolutely perfect.  I googled thousands of images for ideas over the months.  I debated whether to get an awareness ribbon for Carter or not because Mitochondrial Disease isn't what defines him.  I also knew I wanted initials for each of my children.  While laying in bed a few weeks ago, it came to me.  I knew what I wanted.  Our family is all about music and it has become an iconic symbol for all Carter's fundraisers for research and I find myself doodling them on notes I make or grocery lists.  I was ready to schedule an appointment and have it sketched out!  And what better present for my 28th birthday!  My husband wasn't entirely on board with the idea but he knew that after months and months of talking about it, that I had made up my mind.  When I called to make the appointment, I was told that the man I requested was booked out until the end of the month, but WAIT...he had a last minute cancellation for the following evening. Without hesitation, I took it.  I was so excited, I could barely stand it and was so thankful that I wouldn't have to wait too long.  The tattoo artist drew up exactly what I wanted and even more!  Seeing it drawn out with all of the details I wanted, was surreal!  It was a piece of art that I would have on my body for the rest of my life and I couldn't imagine anything more perfect.  I decided to go ahead with the awareness ribbon because the way that the artist drew it up, it looks as though the bar of music is shooting out of the ribbon.  Carter fills our life with joy and happiness so this carries significant meaning for me.  My husband asked me if I was nervous and my answer was easy, "no." I was ready to get it done!  It took about 45 minutes, but the pain wasn't bad and before I knew it, it was time to look at it in the mirror!  Perfect.  No other words for it than that.  The hibiscus flower that I added it to needs some revamping (is 9 years old), but I will do it sometime this year.  For now, I am just so so happy with my unconditional love tattoo!  And as if it couldn't get any better, my husband absolutely loves it too!  He is thinking about getting one similar so that we have matching art!

My imperfect world is so perfect to me

On a regular basis, I hear comments along the lines of "I don't know how you do it" or "I couldn't do what you do".  Comments that all special needs parents hear a thousand times.  Phrases that I was guilty of saying before I had my sweet Carter.  I was also a person who always said, "I just want a healthy baby and that's all I care about".  Oh the ignorance and naivety of those words.  Of course every parent wants a healthy baby. Of course every human wants life to go in the order that it's naturally intended. But in the real world, life doesn't always work out like that.  As a parent to a child who is not just chronically ill, but is ALWAYS ill, I live the life that millions think they never will or hope they won't.  You never hear people say, "I will still be happy if my child is born with something that may not be considered perfect" or "I will be okay even if my child has medical problems".  I think people worry that if they say those things out loud, that they will "jinx" themselves with an unhealthy child or that they will be judged for every considering the idea of not birthing a healthy baby.  In the world we live in, everyone strives to have perfect things, perfect jobs, perfect spouses, and the perfect children.  As if their entire lives will be summed up by those things.  It's really such a sad world that we live in because this is the mentality that the majority of people live in.  Even if my life hasn't turned out the way I ever expected or planned for, it is perfect to me.  I am not special or stronger than others.  I am not a supernatural human who can handle anything that life throws at me.  4 years ago, if you asked me about Carter and the things that make him "different", I would have broke into tears and been deeply offended.  If someone asked me if he was meeting milestones, I would have lied and said he wasn't feeling well so not up to par.  I remember walking through the grocery store and having complete strangers approach me to say "your baby looks SO tired, poor baby".  I was a mommy who seen nothing but perfection in my tiny baby.  I didn't understand what others seen.  Of course, I KNEW that something wasn't quite right but I grasped on to the idea that he was just delayed and would catch up on his own time.  I was immune to the constant spit up and wobbly muscle movements.  Throughout most of my pregnancy with Carter, I was part of an online mom group.  After our babies were born, we had several meet-up's where we were all in one place with our babies who are all within a month of each other in age.  Those were the times that I felt reality crash down around me as the gap in milestones was unavoidable.  I wanted to scoop my baby up and run away.  I wanted to keep Carter in a bubble away from the harsh world. I didn't want him judged or scored on a chart of "normal" development.  I wanted to go about my life only seeing Carter as what he was; perfect.  For the first 2 years of Carter's life, I would post hundreds of pictures of him doing "typical" things.  I was great at covering up my fears or Carter's struggles.  I posted pictures of him standing, playing, sitting, and smiling.  I wasn't ready for the world to diagnose my baby.

Getting to the place I am in now where I am okay talking about Carter's medical problems and our journey did not happen over night. It wasn't something I was ready to do 4 years ago.  The biggest struggle I had through Carter's life, was letting go of all the things I had hoped for him.  I had to forget all the ideas I had for his life.  When I finally learned to let go, I could finally learn to embrace and love what he IS.