Sunday, May 3, 2015

Milestones... Parker's 16th Birthday

16 years ago today you came into my world.  I wasn't sure I was ready, some days I’m still not sure I am.  I wasn't the expecting mom who couldn't wait to have this child.  I was the expecting mom who loved knowing where you were, always with me, safely tucked inside my protruding belly. I was worried if I could keep you safe, if I could raise you to be a kind, thoughtful man in a world so filled with evil. I was worried about a million things which, as it turned out, none of needed to cross my mind. I had no way of knowing the worries I would have would be far greater than I could ever imagine.

You came into this world with struggle yet so perfectly.  With your head caught on my pelvic bone, an emergency c-section was ordered.  A surgery that you breezed through, scoring perfectly on your apgar scores, yet leaving me hemorrhaging on the table at risk of losing my uterus. I am incredibly thankful to the medical team who saved my uterus (allowing us to welcome your sister to this world 3 years later) and who with family and friends took wonderful care of you while was I given unit after unit of blood during those first 48 hours. While it makes me sad that I am unable to remember those first 48 hours, visitors, phone calls, first cries and diaper changes I remember clearly not wanting you to ever leave my room.

Some people say that if you can’t bond with your newborn child immediately during the very beginning of life, that bond is not as strong as others - or is lacking. Our beginning bond was not ideal. We were together, you nursed, you were laid in my arms and on my chest, I simply was not stable enough from the blood loss to do anything on my own or welcome you the way I had imagined into this world. Our bond, however, was clear from the start, you made all of my dreams come true and our bond was – and still is – undeniably strong. We have a way of proving the world wrong.

Over the years, we've spent a lot of time celebrating the inchstones in your life.  While other children your age were saying first words, learning to ride bikes, or picking classes for school… we were celebrating in our own way, our own goals.  Through therapy, early intervention, and school you continued to grow and we continued to celebrate things others take for granted, things that come easily or natural to some are incredible struggles for you. Yet, we never lose hope or faith.

Your birthday is always a little difficult for me, as your mom watching you grow up into an incredible young man is beyond expression – I am so proud.  It’s difficult because time is going too fast and I need it to slow down. Not just because I don’t want you to grow up (although that’s part of it!) but because we don’t have the answers we need yet and I know each day that goes by is a day we've lost from your future.

I've struggled with incredible guilt over the years since your diagnosis of Fragile X. I struggle with the fact that I didn't know, I had never heard of this genetic condition that I have inside of me and that I would pass along to you… and your sister.  I didn't know. I am so sorry, I didn't know – while I never, ever want to even think of what my world would be like without you, I am so sorry that you have missed out on the life that could have been if you did not have Fragile X Syndrome.

It’s not often that I let myself go to this place in my heart and mind. It’s an incredibly difficult place to leave once my mind is here.  Sometimes, I simply can’t help myself – the world around us has a way of triggering my mind and emotions to visit this spot. Sometimes it’s seeing kids your age playing at the baseball diamond, football field or basketball court… seeing them independent and now dating, driving, working, preparing for college and the next steps in life.

It also happens often around your birthday.

During one of my favorite days of the year, the day to celebrate you even more than I do every day, a cloud of guilt tends to hover over.  Another year without an effective treatment for you, another year without a cure, another year of incredible accomplishments and mountainous hurdles… another year where you are trapped inside of this neurological disorder that stops you from living a life of unlimited possibilities. This year your birthday has hit me harder than ever before.

Today you turn 16.  16!!  Putting aside for a moment that I’m way too young to have a 16 year old son, even one as incredibly handsome and wonderful as you… 16 is an incredible milestone for every one.

In our buzzing world of social media, I can’t simply hide my way through this year away from the reality of watching your friends learn to drive, flashing the picture of them with their driver’s license, and proudly showing off their new (or new to them) car. It’s there, daily as I log into Facebook, Instagram or Twitter.  I love your friends dearly, my heart is filled with excitement for them and pride in who they have become.  I cherish those who have never left your side and include you on this journey of life through grade school, middle school and now in high school.  I am, happy for them.  I also hurt, deeply, for you and for me for the experiences we don't get to share.

This (driving) is a milestone we likely will never meet. There was a time I believed we would, I was told “we will have a cure before he reaches puberty”.  They tried, they really did and they continue to.  We've participated in research and continue to. I know it will happen, however, I also know it is too late in your life for you to have a “cure”.  There will be an effective treatment in your lifetime, I believe with my entire heart, it will cure those not yet born or those still very young… but it’s too late for a “cure” for you.  It’s ok. An effective treatment will be amazing and life changing – and you will continue to shine.  I just have no idea when it will happen which leaves me to focus on today.

I will celebrate this entire day with you, from the moment you wake up until the moment you lick my face and tell me goodnight… we will celebrate you to the extent that you can handle.  What you won’t see is how much my heart is breaking today, that while I have given you a life filled with love, I was not able to give you the life like your friends… the life that would put keys in your hands today.  A tiny part of me sees this as a blessing, I never have to worry about you out on the road driving, breaking curfew, drinking and driving, drag racing… that endless list of possibilities that happens when you are able to drive.  Still, I’ll always hold the guilt of never being able to give you that “typical” life – because you deserved it.  You deserve so much more than this life has handed you.  It doesn't mean you don’t have gifts, you do.  You inspire people world-wide, every single day.  The world has watched you grow up, they've laughed with you, cried with you and celebrated with you.  You will possibly positively impact more people in this world than any of your classmates. The difference is, you will likely never realize the amazing impact you have on this world, how you make it a better place.  That won’t stop me from telling you and reminding you how incredible you are and how love you are by everyone every single day.

Today, I can’t give you a car to drive (well… I could just not legally and it wouldn't end well), I can’t know what you are thinking, I can’t do many things or give you the ok to do them… but I can continue to love you more than life itself. I can promise you that today, as you celebrate your 16th birthday, that we are in this journey together.  I can honestly tell you that you have filled my life with more love, pride and inspiration that I ever knew was possible.

And while I can’t give you a car or driver’s license – I can make a promise to you and plea to those whose life you touch.

My promise to you remains the same, I will always love you unconditionally, you are my smile, my laughter, my pride, my heart and my soul.  You are my inspiration and I am better because of you.  I promise to continue to do everything I can to make a difference in this world.  I will continue to work hard so families who are diagnosed know they are supported and never alone on this journey.  I will continue to advocate for you and others on every level from the bottom to the top…our voices will be heard.  I will continue to educate others on Fragile X, raise awareness and let you inspire the world around us.  I will continue to be sure that research is supported.  I will never give up hope that the “more” that is out there for you will happen… it will, my heart believes it.


My plea to those who know you or who may have stumbled across my blog is that today (or anytime you read this blog) that you make a donation to support the National Fragile X Foundation in Parker’s honorCelebrate Parker’s 16th birthday by making a donation in his name, being a part of the support we need that the National Fragile X Foundation provides to families on this journey; providing support for families, education, advocacy, supporting research and raising awareness that impacts our every day life.  Fragile X isn't about just one thing… it’s about everything.  Research is one aspect to our lives, one aspect to our future.  We still need to get through today, tomorrow and the weeks and years that lead up to that life changing answers.  We can’t do that without support, awareness, education and advocacy – we need every aspect, including research, to be sure that Parker and those living with fragile x, have the daily skills and tools they need to be successful adults.  One inchstone…one milestone at a time.  You can make your online donation to celebrate Parker’s 16th birthday here. We thank you in advance and appreciate your support for this journey we are on.

Parker, 16 years ago when you came into this world, you forever changed my life making my dream of becoming a mom come true. You have taught me patience, understanding, respect, fight and determination – I am forever thankful.  There are no words to accurately describe the love a mother has for her child but I don’t think I need to.  I believe you see it each time you glance into my eyes, hear my voice and feel it with all that we are with each squeezy hug. I’m sorry this isn't the life we had planned, a part of me will always hurt over the experiences that will be out of your reach but I am not sorry that you are my son.  I cannot imagine my life without you and pray that I never know. Whether we are celebrating an inchstone being met, a milestone, or just that it’s another day together – every day I celebrate you.  You and Allison are the most amazing gifts I've ever been given, the two of you complete me, inspire me and leave me bursting with love and pride.

Happy 16th Birthday, Parker.  Mommy loves you most of all…and has a ridiculous amount of Cubs themed gifts for you today!!  :-)

For our friends… please celebrate Parker’s 16th birthday by donating here.  It all adds up, no amount is too large or too small, it all – just like each one of usmakes a difference.







2 comments:

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  2. Happy birthday to parker!! Your article is really heart touching. Best part is donation. I would love to donate some money. My sister is turning 16 next month and I am looking for some sweet 16 venues nyc. If you know any party venue please share.

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