Sunday, February 24, 2013

5 years

My dearest Nathan,

You laid in your bed snuggled up beside your stuffed Mario, Stingy the sting ray, Oreo the black and white cat, your little gator, and several other stuffed animals that made their way to sleep next to you.

"I love you all the way to Publix and back" you said, starting the nightly ritual I love so much.
"Well, I love you all the way to Target and back" was my reply to this sweet little game we often play.
"I love you all the way to Mario Kart land and back!"
"Hmmmm, I love you all the way to Texas and back."
"Oh, that is a long way!" you said, thinking hard about your next answer to trump the distance to Texas that you are all too familiar with. "I love you all the way to heaven and back!!"

This year has been quite incredible as you have flourished in both health and personality. You have been blessed with an amazing gift, my son...the gift of making a positive impact and changing the lives of those you encounter. Through the unusual and often difficult adversities of your life, you can show others how to live happily and joyfully through intense hardships. Your actions and attitude speak volumes to those around you. Your bright smile and immature humor often brightens the lives of each person you meet. You have been given a gift from God, my dear Nathan...the gift of the ability to triumph through trials.

You have always had quite a charming and magnetic personality, but it seemed to grow even more this year...probably due to the fact that you have consistently felt so much better this year than in previous years. Participating in quite a few public fundraisers and venues through Children's Miracle Network lately, your father and I often marvel at the fact that you seem to know when to turn on the charm. You do not seem to have a shy bone in your body, and your timing is often impeccable with various waves, smiles, sayings and jokes. The impact you make with your exuberant personality is quite incredible to watch from a parental standpoint.

But the aspect of your life that I have enjoyed watching grow the most as you have grown older is your depth of love for those around you. Due to the fact that you have endured more painful tests, annoying exams, and being poked and prodded by seemingly hundreds of strangers through the first few years of your life, I honestly totally expected you to be leery and stand-offish when it came to meeting new individuals. However, the contrary is true. You are not at all afraid of new people...much to my amazement. You fall in love with others quickly and deeply. You have a "wife", many best friends who are much older than you, and you are constantly trying to figure out how to interact with kids your own age (something I hope will continue to develop when you enter kindergarten and are actually around kids your own age). You hug freely and genuinely love most everyone you meet.

And I hope you are aware that you are loved by countless others, my Natey boy. I feel so incredibly blessed and fortunate to be your mother. The amount of people who have been touched by your life is simply amazing, and I am quite humbled by the fact that I am the one who gets to help you dress in the morning, help you with whatever you need through the day, and tuck you in at night. You know that I love you with all of my heart, but I hope you also know that there are so many others in this world that love you...think of you often...and pray for you. My son, your life is an incredible blessing to so many.

I love you all the way to heaven and back, my precious Nathan Andrew. Happy 5th Birthday!

Saturday, February 2, 2013

Overwhelming Peace

We stood in the cul-de-sac several feet from one another as we took turns helping start and balance the new spiderman bike. "Pedal, pedal, pedal!! Keep your eyes straight ahead!! Keep pedaling!!" were the repetitive pleas being shouted through the crisp air of the winter morning.
My thoughts were almost instantly transported to the days when we would sit in the livingroom floor with just a few short feet in between us. With our arms stretched out in anticipation and with gentle encouragements of "Come on. You can do it. Walk to Daddy.", we would cheer on with pure excitement at the unsteady and drunken-like gait of the little guy. It seems that when you are presented with reason to question your child's limitations in life when they are just a few weeks old, the elation you experience while witnessing these monumental milestones is much more intense than usual.

It wasn't until a little over 6 months ago that Nate was finally able to ride his tricycle. Having enough strength, stamina, and coordination to master that task just took a bit longer for him. Once he received a "big boy bike" for Christmas, he instantly wanted to try to learn to ride it without training wheels and has been hounding us to teach him ever since. Standing in that cul-de-sac with him this morning as he tried so bravely to learn this new skill was a little surreal. He still has a long road of practice before learning balance and his little legs wore out very quickly, but the skill is there. I have no doubt he will be able to ride just like his sisters someday soon. I never imagined he would be where he is now.
We sat in a room with a long conference table the other day, across from educators and a nurse, and discussed what will be needed to make Nathan's introduction to public school and kindergarten possible in just a few short months. I explained that yes, we did realize there was significant risk involved in this move. But at this time when he is more prepared for success and healthier than he has ever been, it is a risk we are willing to take. My baby school. I never imagined he would be where he is now.

I sat with his physical therapist yesterday as she conducted routine strength and agility tests on the little man. We have been marveling at the incredible surge of strength and energy he has had over the past year, but it was even more amazing to see it in black and white from the test's interpretations. Nate has been receiving physical therapy about once a week since he was 6 weeks old. Yesterday was the very first time we have been able to say that he is finally "age-appropriate" and caught up on his gross motor skills. I never imagined he would be where he is now.
This past year has been simply incredible. I believe that the combination of his gastric stimulator and adequate nutrition, the starting of a medication to help control his symptoms of dysautonomia, and the introduction of subcutaneous immunoglobulin therapy have all been extremely instrumental in the amazing changes we have seen in Nathan. Sure, there are still little tweaks needed here and there, troubling symptoms popping up periodically, and days where his body struggles greatly. But those times have been significantly less over the past year than in previous years, and these longer periods of respite have given way to so much positive growth in every aspect.

Raising a child with this disease is exceedingly difficult at times. The unknown aspects of the future often weigh quite heavily on our minds, and we constantly struggle with the knowledge that things can take a dramatic turn for the worse at any time. This often causes any periods of growth or even a good plateau to be secretly overshadowed with the "waiting for the other shoe to drop" feeling.

But sometimes...just sometimes...the positive feelings push aside most all of the worry you have lived with through the entirety of their life. And all you can do is rejoice in these days of overwhelming peace.

I never imagined he would be where he is now.

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