02 December 2013

A First Birthday Letter to Baby Luke

To my dear-sweet-little-baby-boy:

It won't be long before you'll be too big for mama to call you that.  In just a few short weeks, you'll be one year old.  My, how time flies.  It's so hard for me to think back on this time last year... winding down the last few weeks of my pregnancy, anticipating what you would look like and dreaming of how full my heart would become in the moment that you, a little ball of fury kicking and bumping around in my belly, would enter my life. 

Beginning in that first moment that your little lungs took in air, you've kept us on our toes. In only twelve months, you've racked up a total of 14 days in the hospital, a 6-day NICU stay after birth, one night for observation when you were two weeks old (later we learned that your unusual breathing and chest retractions were due to you having Laryngomalacia) and another 6 days admitted to the hospital for RSV when you were a mere 6 weeks old.  When you were 4 months old, you were admitted again overnight when your cardiologists completed a heart catheterization to evaluate the timing for your upcoming open heart surgery.  You've also had 2 visits to the emergency room.  You've seen 11 specialists, had 85 doctor's appointments and have completed 86 hours of private physical therapy and about 35 hours of physical therapy through Help Me Grow.  Additionally, you've recently started speech therapy and have completed about 5 hours so far this year, for a total of 126 hours of therapy.  You've had a home heath nurse visit you 6 times so far to administer an injection called Synagis to help you from contracting RSV again (and she will continue to see you next year, too).  That same home health nurse visited you 5 additional times this summer to draw your blood as were were monitoring your blood counts to make sure you didn't have a rare blood disorder. 

Aside from sorting out the medical issues you've been evaluated and treated for this year, your mommy has spent additional time taking care of her own emotional well being over the last few months.  I've joined two support groups, one being a more formal group that meets face to face on a monthly basis and the other is an internet based group that is more informal in nature and is truly a free-for-all when it comes to seeking answers for specific questions related to Down syndrome or even more general help with raising a baby.  I've made numerous friends through both of those groups and have even made many friends in our community as I've had a new reason to connect with neighbors and breathe new life into friendships with old acquaintances.  With me being so entrenched in your medical well being, your Daddy has proven his love for us all, day after day, as he has taken full responsibility for getting you and your brother up in the mornings - dressed, bags packed and off to the sitter.  Your Daddy and I have been practicing the best teamwork we've ever experienced over the last few years in just the last 12 months and we are all better for the way we share the load!

While I can recall your medical records to quantify the number of visits we've made for certain issues, it's more difficult for me to quantify the special place you hold in your Mommy's heart.  I have to admit, you had some pretty big shoes to fill joining our family behind your big brother... Matthew is pretty darn awesome and he has been that way from day one!  He stole our hearts so completely that I secretly wondered how I could ever love another the same way... fortunately for us all, God prepared us with hearts that have incredible stretching power and because of Him, I love you both more than I can explain.  If I were forced to quantify, it would be something like "I love you infinity times ten" and even that doesn't really do it justice. 

As I think about your life and my hopes and dreams for you, it's pretty simple.  In fact, it's the same thing I hope and dream for your brother.  I pray that you are able to live a life that makes you feel good. More specifically, I hope you use your special and God-given talents to make a difference in our world.  I pray that you can lay in bed at night and reflect on a productive day's work and feel like your contributions were meaningful.  I pray that you have loyal and caring friends.  I pray that you are able to share your feelings with others, family, friends and maybe even someone special some day.  I pray that you have a passion for life - that you "show up" and through doing so, that you inspire others to be their best selves. 

As we celebrate you this month, not only will we be having a pretty wonderful party, we will also be making donations to three hospitals in your honor.  In fact, your family, friends and neighbors have donated nearly $1000 in cash and gifts for our family to supply the hospital where you spent the first six days of your life with Christmas inspired outfits for the babies who will be spending their 1st Christmas in the hospital, just as you did last year.  The outpouring of love via those donations was so strong, that we exceeded our goal of dressing babies in just one NICU and were able to extend our gift to two additional NICUs for Christmas this year.   

As we close in on the end of 12 months and I reflect on this first year of your life, there is no doubt in my mind that you've already made a profound impact on the world, especially considering that you can't even talk yet! You have great things in store for your life, and I can say with the most honest kind of honesty there is that I couldn't be more proud of who you are.  Thank you to our Father in Heaven for blessing our family with our extra special baby Luke! 

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