Birthday Letter to Jordan

Happy 5th birthday Jordan!

Thank you for the best, the hardest, the happiest, the saddest, the toughest and the most incredible five years of my life. You show me every day that life is not just black or white – it is colored with every shade of the rainbow. When you feel, you feel deeply and when you give love, you give with your whole heart. I often find myself staring into your steel blue eyes, getting lost looking into your soul. I see so much hope, strength, love, compassion and happiness – please don’t ever lose that fire!

This past week was full of so many remarkable firsts for you, it was only fitting for all of them to take place in the days leading up to your fifth birthday. You performed in your first ever school show – for Thanksgiving, in front of a church full of parents and friends. There was no one more thankful and proud there that day than your mama. Seeing you on stage, singing, participating and beaming of happiness made me so thankful for being part of your journey. Thankful for being your mama!

The next day you had a follow up cardiology appointment, which was our first since our favorite cardiologist moved out of state. These appointments always make me nervous, and especially because we now have to learn to relate to a different doctor. They ran their tests and the doctor was thrilled when he told me that everything looked “great and normal”. Those words almost stung, because how could he know what was “great and normal” for you? Granted he had access to your five year old file, but still – we did not have the report established where he could just use subjective terms like that. I immediately asked him for specific measurements and numbers, to which he replied that he would send me a copy of the report. I received the report the next day – and realized quickly that his “great and normal” really truly meant GREAT AND NORMAL! Your tests were normal – not just for you – but for anyone… all your measurements and numbers were WITHIN the range for NORMAL. The report did not mention “mildly” or “significantly” anything… things were just the way they were suppose to be!

Getting a report like that was truly a first, and what a beautiful thing to receive days before your five year birthday. Statistics and projections of outcome for children with your particular diagnosis are measured in increments of five years of life. The numbers, the cold hard facts, the percentages, the chances and the hopes for someone diagnosed during infancy as you were, are not anything you would ever want attached to your child – but here we are, at the five year milestone – not only beating the odds, but doing so with a “great and normal” report! Just another testament to your fiery zest for life.

This weekend you finished your second season of soccer and received your first trophy. The golden piece of molded plastic stands nearly two feet tall. It does not just symbolize that you completed ten soccer practices and games. It is a reminder of the season where your coach deemed you the “most improved player”. But more importantly, it is a reminder to me of the year you were able to keep up with your peers, when you made friends, followed most of the coaches’ instructions and had a great time. Watching you receive this trophy today brought tears to my eyes, because you truly deserve a trophy just for living life the way you do! I welcome this two foot tall dust collector into our home – and any others you will receive throughout the years!

Jordan, thank you for showing me that although life isn’t always perfect, it is always worth living to its fullest. You savor life in a way I have not seen in any of your brothers. When given a present, you don’t just tear the paper off to reveal its content. You examine the gift, shake it, feel it – take in everything about the occasion. Then you scan your surroundings to determine if you have a captive audience, because it is not as much fun opening a present without sharing the excitement with others. You have several times waited days to open a present, just to ensure that the time was perfectly right.

You are the one who inspired me to look for happiness in unusual situations. You proved to me that happiness is truly in the eyes of the beholder – and not for anyone else to judge. I vividly remember when you were three years old, a distant relative met you for the first time. She knew vague details of your medical journey and asked me in all seriousness “so will he live a full life?”. The very moment she uttered those words, you were running around in the grass with your brother, laughing and playing. I looked over at you being truly happy and having fun, and replied “it looks to me like he’s living a full life!”.

Jordan, it is my sincere hope and prayer that this next year is full of happiness for you. Opportunities for you to grow and shine, chances for you to take and succeed, and moments for you to embrace and cherish. Thank you for being my happiness!