Prelude to the Birthday

Jack’s 9th birthday is this weekend. Every year since Jack’s 5th birthday, I’ve sent out a birthday email letter to friends and family sharing my thoughts about Jack, about myself and about this journey we are on. I’ve shared my thoughts through words, through pictures and through videos. The weeks leading up to Jack’s birthdays are always a time of great retrospection, soul searching and emotion and each year’s birthday letter has its own unique tone, largely a reflection of the events of the prior year. So, I share with you my birthday letters of past, as well as my thoughts and reflections as Jack prepares to celebrate his 9th birthday.

Jack's 5th Birthday

Hi Everyone:

I just want to share with you that Jack celebrates his 5th birthday today. If you had told me five years ago that Jack wouldn't walk, talk, eat or breathe on his own at the age of five, I think I would have crawled into the nearest hole and died. In the beginning of this journey, we all had so much hope. I, along with Jack's doctors, nurses and therapists worked so hard to achieve independence for Jack. Independence from the wheelchair, the feeding tube and most of all, independence from that damn ventilator. But, despite all our hard work . . . it's not to be.

Today, I have new hopes for Jack. I hope that every morning when he wakes up and every night before he closes his eyes, he feels safe and knows that he is loved. I hope that his days on this earth are lived without pain. I hope he achieves a way to communicate his feelings and desires to others. I hope he stays healthy. I hope he accomplishes all that he is capable of.

As for me, my idea of happiness has changed considerably. I'm happy to only have to suction Jack 10 times a day, rather than 100. I'm happy if he only pukes once a week, instead of every day. I'm happy when the DME company gets my supply order right the first time. I'm happy to never see the inside of a PICU again. I'm happy to see his contagious, beautiful smile. I'm happy to hear him laugh. I'm happy if he's happy.

It has taken many years, a lot of tears (and an occasional Xanax), but I have finally come to accept that Jack will always be who he is today - wheelchair, feeding tube, vent and all. With this acceptance, comes freedom. Freedom from always pushing him to do what he isn't physically capable of doing (he's so thankful for that). Freedom from always having to be in control (well, most of the time). Freedom from wanting to have an answer to everything and, most importantly, freedom from having to know Why? With freedom, comes peace.

Well, this is getting entirely too profound. On a lighter note, it has been said:

"Life may not be the party we hoped for,
but while we are here we might as well dance"

So, Jack and I are going to dance the day away ~

The last five years have not been easy for sure, yet, I consider myself lucky because I've met so many remarkable people along the way. I feel truly honored to be the mom of such an amazing and inspiring little boy. Thanks to each of you for being part of our journey these last five years.

Love,
Ann


Jack's 6th Birthday
(after he suffered an anoxic event – see Jack’s Story for details)

Hi Everyone;

Jack celebrates his 6th birthday today. As you may remember, last year on Jack’s birthday I shared with you that I had finally achieved acceptance with regard to Jack’s limitations and challenges. What a difference a year can make. A year ago, Jack was chasing his little brother around the park in his wheelchair. Today, it takes all he can give just to get his hand to the controls of his wheelchair. I am renewed in my struggle to understand and accept why Jack must now work harder to achieve even less than he could accomplish a year ago. Yet, despite his new challenges, Jack still manages to face each day with his trademark smile. I suppose it’s not fair to ask for anything more. I want to thank each of you for helping Jack, and for helping me, get through this most difficult year. Jack and I are forever indebted to you for your continued and unwavering support and encouragement. Together, Jack and I will tackle another year of challenges and, hopefully, manage a few successes along the way. Thank you for allowing me to share with you my little hero’s very special day.

Love,
Ann


Jack's 7th Birthday

Dear Friends,

Today is Jack’s 7th birthday . . . simply, amazing to me. Jack’s birthday is always a time of reflection for me. I think to myself . . . another year of “THIS” . . . we’ve actually made it through another year. There was a time when I hoped that each passing year meant we were that much closer to the end of “THIS” and we could then get on with living the life we had planned for Jack. Obviously, “THIS” is here to stay and, over the years, I’ve learned to appreciate and enjoy this life with Jack. Jack is such a gift. He defines what is important in life – patience, persistence, contentment, simplicity and unconditional love. He challenges me on so many levels, he keeps me grounded and he gives my life such purpose and direction. A little boy who can speak no words, speaks volumes by the way he lives each day. So, on his special day, I share with you the one thing that defines Jack, the one thing that has remained consistent through all of “THIS” . . . . . . . . “THAT SMILE”!



Jack's 8th Birthday

Dear Friends,

Jack is celebrating his 8th birthday. What a ride this last year has been. It has been a rough year for Jack from a health standpoint – with many respiratory illnesses and a difficult recovery from his spinal fusion surgery. Yet, Jack managed to get through it all with his amazing spirit and incredible resilience. This year on Jack’s birthday, rather than share with you my words, I share the words written by a dear friend regarding her reflections on Jack – as someone from the outside looking in:

Jack's existence has meaning and opportunity for every person who meets him. Jack is no genetic mistake, his life on earth gives multitudes the chance to be awed by their own good fortune, to be humbled by Jack's patience and strength, and the opportunity to really matter, by being there for him and his family.

I thank each one of you for embracing the opportunity to share in Jack’s life and for being there for Jack and his family - you matter more than you’ll ever know.

I also share with you a short video I put together which includes pictures of Jack’s journey over the last 8 years. Click on the link and make sure you have your speakers on. Enjoy the ride . . .

8 years of Jack’s journey

Ann


Jack's 9th Birthday

Several weeks ago, I told a friend of mine that this year on Jack’s birthday, I won’t be sending out a birthday letter – there will be no profound words or entertaining video because I’m just not up for it. While it’s true that I haven’t prepared the traditional birthday letter and I won’t be sending out a email on Jack’s birthday . . . you’ve got to know me well enough by now, to know that I couldn’t let Jack’s birthday pass without saying something.

This year, I don’t feel particularly happy or optimistic, nor do I feel sad or disappointed. I do feel like there should be something more in life for Jack – I just don’t know what it is. I don’t know if that something more requires me to take some affirmative action or whether it is as simple as me recognizing and accepting that this is as good as it gets for Jack. This passage I recently came across in my favorite book really hit home with me:

It is true that we must experience some successes if we are going to keep on trying things for our children. Sooner or later we have got to get a hit or, yes, we will quit batting. But we might not get one right away. We might not get one for quite a while. We are going to miss. We are going to strike out. We are going to have slumps, but we will never get a hit if we don’t get up to bat.

The first few years of Jack’s life, I got up each day ready to go to bat. I took a swing at anything and everything I could reach to help Jack achieve success. The problem was that I defined success to mean no vent, no trach, no feeding tube and no wheelchair. I struck out on all accounts. With each passing year, it is exceedingly more difficult to get up to bat because the hits are few and far between. I no longer approach each new year with a set of pre-determined goals to help Jack work towards. I can’t define Jack’s successes in terms of measurable progress because then there would be none. It has come to the point where I have to measure Jack’s success on a very primitive level. Is he happy? Does he feel safe? Loved? Without pain? Yet, isn’t feeling happy, safe, loved and without pain success enough . . . for any of us?

So, as I reflect on this last year, I find successes in Jack’s smile and his laughter, in a year without surgery or pain and a year of good health. I find success in the knowledge that Jack is loved and feels the love of many. Yet, I still wonder … is there more out there? Is there something else I should be going to bat for? Nine years into this journey, I recognize that it’s unlikely I will ever accept that this is as good as it gets for Jack. I suppose it’s my struggle with the reality that is and the reality I want that forces me to step up to the plate and take another swing. I don’t always know what I’m swinging at, but I have to keep on trying.