More Good Days than Bad

Once again, I'm remiss in updating the blog.  Most of my updating takes place on Facebook - it's quick and easy to update.

Jack has had a run of mostly good days.  He's been feeling and looking better than he has since we transitioned him to hospice. Which means ... we have his pain under control.  He's getting a decent amount of morphine round the clock and it seems to be working.  It's not to say there haven't been some rough days.  After one particularly difficult day, Jack ended up sleeping for almost 24 hours straight.  It scared me. If I had to describe what this "ride" is like, it is very much like those first months of Jack's life when he lived in the pediatric intensive care unit.  The intensity and stress of the unknown on any given day is much the same. What's different is that I'm 15 years older and much more worn down.  I don't have the stamina for this.  I seriously worry about my own health these days.

I want to comment on my post before the birthday post.  I realized after the fact how very raw my words were.  At the time I wrote it, I just sat down and let the words flow.  Interestingly, I heard from several moms who told me that they could relate to much of what I wrote because of what they are dealing with in their own lives with their children, but they hadn't yet been able to put their feeling into words. I spoke for them as much as for myself. And that is why I write, and why I keep it brutally honest most of the time.  I speak from a place that very few can understand, but for those who do, there is a connection that reaches across the miles and forms an inexplicable bond between people who've never even met in person.

Despite Jack's run of good days, I'm still beyond tired because of the round-the-clock meds we have to give him. So, this update is going to be short and sweet.

The sweet part is that we had family pictures taken last weekend and, thankfully, Jack had a good day.  I think the pictures turned out great.  For those not on FB, here are a few of the pictures and at the end of this post is a link to the album of pictures (which will only be available online for a short time).

(I got the idea for this picture from another blog I read. Cool, huh?)

Stay tuned ... I have another very raw blog thought just waiting to be written.

xo

Birthday Notes

On Jack’s 5^th birthday, I sent out my first email to family and friends sharing my thoughts about Jack, myself, and this journey we are on.  I’ve continued this tradition every year since, having moved to sharing my birthday messages on Facebook the last few years.  Jack’s birthdays are always a time of great retrospection, soul searching and emotion and each year’s birthday message has its own unique tone, largely a reflection of the events of the prior year. 

Today, on Jack’s 15^th birthday, there is so much I could share.  However, this year, my words will be shared solely with Jack. 

For everyone else, here is a compilation of my birthday notes from the last ten years.

Jack’s 5^th 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.

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.

Jack’s 6^th Birthday

(after Jack disconnected himself from his ventilator and suffered an anoxic event)

Hi Everyone;

Jack celebrates his 6^th 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.

Jack’s 7^th Birthday

Dear Friends,

Today is Jack’s 7^th 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 8^th Birthday

Dear Friends,

Jack is celebrating his 8^th 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.

(Video “8 Years of Jack’s Jack’s Journey” under Montages – left sidebar)

Jack’s 9^th 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 do take some affirmative action or whether it is as simple as  recognizing and accepting that this is as good as it gets for Jack.  Here is a passage I recently came across in my favorite book that 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 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.  I must now look for Jack’s successes in retrospect; I survey the events of the last year and try to identify those things in Jack’s life that can be considered a success.  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. 

Jack’s 10^th Birthday

Today we celebrate 10 years of Jack.  That’s a lot of years in “Jack” years!  As I reflect on this somewhat of a milestone 10^th birthday for Jack and think about where we started and where we are today, it’s tough to acknowledge that not much has changed in ten years for Jack.  Yet, if I allow myself to stand back and look at the whole picture and not simply focus on Jack’s progress, I recognize that despite all the difficult times and lack of progress over the last ten years, I really am very fortunate.  Jack has spent minimal time in the hospital since his discharge from the PICU in 1999; we continue to have good health insurance; we have nurses who are dependable and who truly care about Jack; Jack is happy; I have three other seemingly well adjusted and happy children; I am still employed and I am still married. Yes, I have much to be grateful for.  Ten years into this journey and I can finally declare . . .  it.is.okay.  Not easy, not a life I would have chosen, but definitely okay. 

Some of you are probably wondering, who is this person?  I’ve been told by more than one person this last year that I have “mellowed”. To quote one person, I have “mellowed beyond description”.  Initially, I wasn’t sure this was a good thing.  Does my lack of intensity mean that I have given up on Jack?  Should I be pushing him harder or doing more?  Yet, I can say with confidence that “no” I have not given up on Jack, and “no” there isn’t more that I need to be doing.  I finally get that all Jack ever needed from me was to be loved.  I recognize that my relentless pursuit of progress was never really about Jack, it was about me.  It was about what I wanted, not what Jack needed.  I’m done pushing Jack to be anything other than who he is.  It’s no longer about where I can lead Jack; it’s about where Jack is leading me.  And, oh the places we are going!

Jack and I approach the next decade with the resolve to use what we’ve learned these last ten years to reach out to more parents of medically fragile children through The Willow Tree Foundation, and to reach out to our future physicians through a new project - Touchstones of Compassionate Care.  What a privilege it is to make a small difference in this world together with one special little boy by my side.  A little boy who leads me well without ever uttering a word. 

Finally, to those of you who have been in the trenches with us over these last ten years, keeping Jack healthy and keeping me sane …. THANK YOU! We couldn’t have made it this far without each and every one of you.

In closing, I share with you a short montage of “Jack and Mom” over the last ten years. Enjoy!

(Video “10 Years of Jack and Mom” under Montages – left sidebar)

Jack’s 11^th Birthday

Eleven years ago today, Jack and I began our journey down a road on which I spent many years desperately searching for a U-Turn.  I never found that U-Turn, but I discovered so much more along the way: courage, hope, patience, perseverance, acceptance and abundant friendships.  What a privilege it is to be Jack’s mom.

Jack’s 12^th Birthday

As I sit at my computer poised to share my thoughts on this, Jack’s 12th birthday, the word that most predominately comes to my mind is “AWE”.  I’m in awe that it’s been twelve years since this journey began.  I’m in awe of all that has transpired over the last twelve years.  I’m in awe that Jack and I are both still here to talk about it.  Mostly, I’m in awe of the love of life that Jack exudes every day despite all that has been stolen from him by the insidious disease that has riddled his body.  This child who cannot purposefully move any part of his body, save a few fingers; who cannot sustain his breathing without the assistance of a machine; who has never enjoyed the experience of eating food; and who has never spoken the words his mind so clearly holds - this child wakes up every morning with a smile on his face and eyes that sparkle with the anticipation of a new day.  I am in awe of this child. 

My greatest wish for Jack this birthday is that more of the people who cross his path would acknowledge his presence and take a moment to appreciate what he has to say.  Jack may not speak with words, but his face and eyes speak volumes.  If you’d just stop and speak to him and then look (really look) into those eyes, I promise that you will get a response that will assuredly warm your heart and put a smile on your face.  There is a person inside that silent body who has a profound awareness of all that surrounds him.  Take the risk to get to know Jack.  He is so worth it.

Jack’s 13^th Birthday

Jack is 13 years old today. A teenager!  Thirteen years ago I could never have imagined the journey that Jack and I would travel.  Even today, I stand back and still can’t quite wrap my head around where we started and where we are today. Who would have thought?  In the beginning, not many of us, that’s for sure.

Jack is loved, Jack is happy, and Jack doesn’t know any different.  Today, we celebrate all of those things.

Rather than share a bunch of superfluous words, I share a song that perfectly expresses how I feel thirteen years into this journey.

(Video “Jack's 13th Birthday Video” under Montages – left sidebar)

Jack’s 14^th Birthday

Happy 14th Birthday Jack!  Every time I think I have this gig called life figured out, you remind me that life is a journey, not a destination.  For all you’ve given to enrich my life, I wouldn’t change a thing.  For all you’ve had to endure, I’d change everything.  You face the hardships of this life with unprecedented joy and grace and you challenge me to do the same.  To say you are my inspiration does not begin to express how profoundly you guide me in all that I do.  Thank you for the last 14 years, my son.  May this next year bring an abundance of good days and be filled with more smiles and less tears.