And when great souls die, after a period peace blooms, slowly and always irregularly. Our senses, restored, never to be the same, whisper to us. They existed. They existed. We can be. Be and be better. For they existed.
-Maya Angelou

Saturday, November 4, 2017

Birthday Notes

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

Below are the birthday notes I wrote - from Jack's 5th Birthday to his 15th (and last) 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.

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 6th Birthday

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



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.

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.  Enjoy the ride.

VIDEO: 
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 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 10th 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 10th 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:

Jack’s 11th 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 12th 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 13th 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 words, I share a song that perfectly expresses how I feel thirteen years into this journey.

VIDEO:

Jack’s 14th 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. 




Jack's 15th Birthday (Jack's last earthly birthday)

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

*Jack died two months after his 15th birthday.

___________________

The music therapist from Hospice of the Valley came to our house on Jack's 15th birthday. She knew Jack from Ryan House and she knew that Jack loved the Beatles. She came with her repertoire of Beatles' songs for him. We all sang along with her when she sang "I Can't Help Falling In Love With You". There were tears in all of our eyes, including Jack's, by the end of the song.

Here is a short (1 min) video of us singing the song. (Jack was very drugged up on morphine and ativan, which is why he looks so out of it.)

VIDEO:
I Can't Help Falling In Love With You



Sunday, August 6, 2017

Grief (Three Years Later)



Three years ago, my grief felt like this.   

Today, my grief is tempered. It doesn't feel as desperate or insurmountable. I no longer wake up each day wanting to die so that I can be with Jack. I now wake up every day and think to myself, "Today is another opportunity to give it my best shot. Another opportunity to be a reflection of all Jack was and all he taught me". Most days I fall short, but every new day that I'm given is another day to try and get it right. 

I recently had lunch with a friend who I hadn't seen in a couple of years. She asked me what I thought about Jack dying. (This friend is an emergency department physician who has seen more than her fair share of death. She is also the parent of a child with a congenital muscular dystrophy.) I thought about it briefly and then answered, pragmatically, "Jack was always going to die." It shouldn't be news to any of us that we are all going to die. Jack dying wasn't something that wasn't going to happen. I just wasn't chosen to be one of the fortunate parents who gets to live long enough to see their child grow up and then gets to die before their child dies.

I can now see and accept that Jack's earthly journey was perfectly born and perfectly completed. He earned the right to lay down his sword and rest. When the guilt starts to creep in and the "what ifs" surface, I take a deep breath and remind myself that none of us gets to live forever. I also remind myself that I'm not and never was in control. 

This is not to say that I don't miss Jack. I desperately miss Jack and I'm certain I always will. There are some who say Jack is not gone, he's still with me. He's in my heart and in the signs I receive. And while that may be true, there are many days when that's just not enough. I miss his physical presence tremendously. I miss looking into those soulful eyes. I miss running my fingers through his awesome head of hair. I miss holding his soft hand and wrapping my fingers around his strong and crooked fingers. I miss making him laugh. I miss his smile. I will always mourn the loss of Jack's physical presence.

I still cry almost every day when I think of Jack. I have Jack's picture on my phone and every time I look at his beautiful face, I get tears in my eyes. But as my good friend tells me, tears are holy water. They heal, they restore, they give strength. I hope I never stop crying when I think of Jack.

Today, I welcome life, but I do not fear death. I survive on the hope of heaven. The belief that one day I will see Jack again. I pray every day, "please God, let heaven be for real because I absolutely have to see my sweet boy again." I need the hope of heaven more than I need earthly signs and I hold on to that hope with every ounce of my being.

Today, I still grieve. But I find joy, and light, and love in life too.

Today, I hope Onward!

Saturday, April 15, 2017

I Loved Him Home



Last weekend I attended a retreat for mothers whose children have died from congenital heart disease and other chronic illnesses. I didn't search out this retreat, you could say it found me and I said "Yes". The Restoring a Mother's Heart retreat is put on by the Ethan M. Lindberg Foundation, a foundation established by Jessica and Erik Lindberg to honor the life of their son, Ethan. Ethan was born with congenital heart disease and he died on June 12, 2012 at the age of seven. Jessica and Erik have four sons. Ethan is their oldest son. Last December, Jessica contacted me via Facebook to share with me that she had read my blog and was touched by Jack's story and understood the grief of living with the death of a child. Jessica also shared with me that her youngest son, Bodey, who is two years old, was born with a Congenital Muscular Dystrophy. I never asked Jessica how she found Jack's blog, but I'm guessing it was from the Cure CMD website. After Jessica and I connected via Facebook, I discovered the link to her Foundation and read every page on the website. I clicked on the tab titled "Retreat" and found these words:

During our time together we will encourage you to cultivate your infinite relationship with your child. We will ask our hearts' deep questions and share practical tools to navigate this journey. This retreat is an invitation to continue your infinite relationship with your child. As a participant, you will be reminded that your story, while painful, is certainly not over. And in fact, it has great purpose. Come share, learn, care for yourself and feel the support of a community of women who understand. 

As soon as I read those words, my heart said "you need to do this."  

The weekend was spent in the presence of beautiful mothers from all across the country. We shared our children with each other, we laughed, we cried, we meditated, we listened, we reflected, and we ate (a lot!) We were students and we were teachers. I came away from the weekend feeling validated and honored. I also came away with work to do. One of the messages that resounded with me is that while Jack's story may be over, mine is not. Three years after Jack's death and I still struggle with "who am I and what am I supposed to do with the rest of my life?" That's where I need to put in my work. I need to find and focus on my purpose and that's not easy when it doesn't include Jack - at least not in the way it included Jack for the 15 years of our lives together. 

The speakers were all incredible and spoke from experience and with love. One of the speakers was Tom Zuba. Shortly after Jack died, I bought Tom's book Permission to Mourn. A New Way to Do Grief. When I first read it, I had a hard time connecting to his words. When I found out that Tom was speaking at the retreat, I pulled out the book and read it again. The second time around, so much of what Tom wrote resonated with me. I was in a much different place three months after Jack died than I am now - three years later. Tom has experienced incredible loss in his life and he knows of what he speaks. It was a privilege to listen and learn from him.

On the second day of the retreat, one of the sessions lead by Tom dealt with God (or Spirit or Light or whatever you may believe) and how He was present (or not) when our child died. The answers to this question were as varied as the experiences we each had surrounding our child's death. I came away from this session with my most profound takeaway from the retreat.

When I think back over Jack's life, I don't think there was ever a time I was angry with God. In those first few months of Jack's life, I prayed fervently that Jack would be strong enough to get off the ventilator. When my prayers weren't answered, I wasn't angry, I was resigned. By the time Jack was born, I was well beyond Plan B for my life, so it wasn't a big surprise that I didn't get what I prayed for. I wasn't happy about the hand that Jack and I (and our family) had been dealt, but it never rose to the level of being angry with God. Instead, for the majority of Jack's life I decided that I'd just "take it from here" since God clearly wasn't going to help out (how very wrong I was in this belief!) I was under the illusion that I was in control and that I'd just have to get Jack walking, talking, eating and breathing without the ventilator all on my own. This illusion of control most certainly preserved my sanity. Then in 2012 Jack began suffering from kidney stones and the downward spiral began. I still had my "I'm in control" hat on as I navigated Jack's care and talked with doctors in St. Louis, doctors in Phoenix, former doctors, current doctors and made sure that Jack had the best care possible. But it wasn't enough. Jack continued to suffer and I couldn't stop it. I reached the point where I literally fell to my knees begging God for guidance and to release Jack from his pain. I never felt compelled to ask God to "fix" Jack because I knew it wasn't possible. Jack was born with a devastating neuromuscular disease, he wasn't going to get better. I needed God's guidance as Mark and I made the most difficult decisions any parents should have to make for their child. I believe that those difficult decisions were God-driven decisions. Jack was suffering and when he died I felt with all my heart that God was with us every step of the way

When I shared my thoughts on this question as it pertained to my experiences with Jack, I heard the words "you loved him home." Those words touched me to my core. Yes, with God's grace and guidance, I did love Jack Home. Three years after Jack died, I finally heard the words that give me peace. I didn't choose to let Jack die; I chose to LOVE HIM HOME. 

Thank you Jessica. Thank you Tom, Lexi and Sara. And thank you to each and every brave mother who had the courage to show up and share her heart, her words, her pain and her love. Our stories are not over. Indeed, they are not.

Onward. 





Thursday, March 2, 2017

Onward




"Onward"

I use that word a lot. I had a friend tell me that he doesn't like that word. He doesn't want to push onward, he wants to stay in the present and feel deeply and fully the emotions of the moment. To me, "onward" doesn't mean to not be in the present or to move on or to get over it. Rather, it means to Get.Up. and Put.One.Foot.In.Front.Of.The.Other. If I didn't encourage myself to push onward, I don't think I'd ever get out of bed.

I know that you never get over or move on from the grief of losing a child (or anyone you love deeply, for that matter). But lately I feel like I'm spending so much of my time looking back instead of looking to the future. This fourth year without Jack has been a particularly tough year so far - it seems more difficult than last year was. I've been going back and reviewing the last years of Jack's life - the difficult years. (The history detailed in Jack's blog is both a blessing and a curse.) I haven't felt much like marching onward.

If you follow me on Facebook you know that almost everything I post has to do with Jack. I share pictures of the good years, the good memories, the happy Jack. It's as if I'm trying to remind myself that, yes, there were good years. Why is it that I can only focus on the hard stuff and question everything I did and didn't do instead of focusing on the good stuff? I guess because my child died. Because when your child dies you can't help but wonder what you did wrong or could have done differently. Because when you spend fifteen years giving every fiber of your mind, body and soul to keep your child alive, he's not supposed to die.

I think the obvious reason I spend so much time in the past is because that's where Jack is. Old pictures and memories are all I have of him. You have no idea how much I wish I could share current pictures of Jack. I know he's still with me - he's in my heart and his spirit drives me in everything I do each and every day. But sometimes that's not enough. I ache to touch him and look into those beautiful, soulful eyes. And because I can't touch him, I have to settle with seeing him in pictures. In the past. It's all I've got.

For all of you who continue to share Jack with me, who enjoy looking back with me and who continue to let me know how much he touched you and how much you miss him - I cannot thank you enough. You truly give me the strength to continue to Get.Up. and Put.One.Foot.In.Front.Of.The.Other.

There are times I wish that "onward" did mean moving on and getting over it. I'd love to stop hurting. But that's not the case and never will be the case. I will never get over, move on or stop hurting from the loss of Jack.

But with the love and support of friends, and by the grace of God and the hope of heaven . . .

Onward it is.

Sunday, October 16, 2016

I Planted Flowers Today (and an Update of Sorts)


(my serenity garden in the back yard)

It's starting to cool off here in the Southwest. The mornings are cool, which is about as close as we get to Fall weather here. The crisp mornings and the store displays usher in the impending holiday season. Since Jack died, November 4th (Jack's Birthday) through January 5th (Jack's death day) has been a time to simply get through. My heart could barely acknowledge the holiday season, let alone celebrate it.

But today, I planted flowers. Well, technically, I potted flowers. And, I bought two pumpkins and I decorated our front entry way. My heart feels ready to acknowledge and celebrate the holidays this year. While it's a rare day that the tears don't fall because I miss Jack so very much, I am now able to balance grief with joy and recognize that it's okay to feel both.

Life is hard and life is good.

And, for the first time in almost three years, I planted flowers today.


**********************************************


Update of Sorts:

The Book. 

Early September, I handed off my parent stories to my co-author and he's now working on his part. I still have work to do and more stories to gather, but the pressure to get the bulk of my part done is off. The book is a work in progress and we are still tossing around ideas of what all will be included. But it will definitely include stories of physician encounters from the parents perspective and stories of encounters with families/patients from the physicians perspective. I'm excited for the finished project, although we are still a ways out from that point. Stay tuned. 

Jack's 18th Birthday. 

Hard as it is to believe, this November 4th is Jack's 18th birthday. I remember thinking about all the things I'd need to get in place once Jack turned 18 (guardianship paperwork, SSI). I never really imagined Jack wouldn't be here. While my first instinct is to escape out of town on Jack's birthday, what I'm going to do instead is honor his birthday by hosting The Willow Tree Foundation's second Mom's Day Retreat. In addition to local moms, several out-of-state  moms will be joining us. This year's retreat is truly representative of the many beautiful parent connections Jack has gifted me with through the years. I can honestly say that I'm looking forward to November 4th this year.

Grand Canyon Rim To Rim.

For those not on Facebook, we did get our permit and I did hike the Grand Canyon down the North Rim and out the South Rim, with a two day stay at the bottom of the Canyon before we hiked out. It was beautiful and it was hard. I hiked with friends from St. Louis, Colorado and Minnesota. It involved teamwork and patience and perseverance. We were told that only 1% of the visitors to the Grand Canyon ever hike Rim to Rim. I'm glad I did it, but I don't feel compelled to ever do it again! 

Here are some pictures.

North Rim - tents set up for the night
The North Rim is beautiful - we wish we could have spent more time there



Ready to set out 


Starting point - North Kaibab Trailhead


Heading down North Kaibab


miles and miles of switchbacks 


first of several bridges we encountered


narrow trail - kind of important to stay focused on where you are going



Canyon Willow


Botton of the Canyon - Bright Angel Creek (our campground was just a few yards from the creek - so relaxing to listen to the creek at night)



Onward!


view from my tent 


this is how I spent our day of rest - resting with my feet in the creek! 


crossing the Colorado River on the way out Bright Angel Trail




At the finish! 



Hiking out was a lot more challenging (obviously) than hiking down, so I didn't get many pictures of the hike out. 
__________________________________


Well, that's the update of sorts. I realize I don't write much anymore, but I'm not one to write just to write. (Although this post might be pushing it as far as being of any substance.) I have three other children and there's a lot going on in my life that keeps me busy and stressed, but it's not all that exciting or appropriate to write about. Jack was and will always be my inspiration for writing. For the last year and a half, he's been my inspiration as I've focused on writing my book. I'm not sure if I'll ever get back to real blogging again. I guess that will be up to Jack! 

Inching Onward! 


Saturday, July 9, 2016

Hope Matters

I've secluded myself in a hotel room this weekend to work on writing stories for our book. Today I wrote one of my own stories. As I sit here reading it, it makes me cry. It makes me cry not only because of the importance of the message, but because I realize how incredibly fortunate we were to have some of the most amazing doctors care for Jack. They are not just amazing clinicians, they are amazing human beings. 

I really miss them. 

I want to share with you what I wrote today because, no matter the situation, hope matters.















I was sitting at my desk at work when my cell phone rang. I knew I had to answer it because my six-month old son, Jack, was in the Pediatric ICU (PICU) at our Children’s Hospital, where he had been for the last two months. The doctors didn’t know what was wrong with him or why he couldn’t wean off the hospital ventilator and breathe on his own. They were in the process of conducting a series of tests and, at the moment, he was stable, which made it possible for me to work a few hours each day.

I answered my phone fearful it might be a call from the hospital. On the line was the neurologist who was caring for Jack in the PICU. A week prior, a muscle biopsy was taken from Jack’s thigh to test for various known neuromuscular diseases. One of the diseases they were testing for was called Merosin Deficient Congenital Muscular Dystrophy (MDC1A). I was told up front by the neurologist that we did not want Jack to be positive for MDC1A because it was a devastating disease that would confine Jack to a wheelchair.

In a genuinely relieved voice, the neurologist told me that Jack did not have MDC1A. She was happy. I was happy. Although, I wasn’t convinced Jack had a muscle disease at all. He had a rough start to life – born seven weeks premature and then, when he was two months old, he had surgery to correct a congenital cardiac anomaly. He just needed time to grow and get stronger. The suggestion that he had a muscle disease wasn’t in my realm of possibilities.

After the neurologist shared the good news, I pushed her to give me answers I wanted to hear regarding Jack’s prognosis. Knowing now that Jack didn’t have MDC1A, I boldly said to her, “You can’t tell me that Jack won’t ever walk.”

This neurologist has years of experience specializing in neuromuscular diseases at one of the top medical institutions in the country. I suspect she had a good idea about Jack’s prognosis based on her evaluation of him, even if his specific disease was not yet identified. However, rather than tell me it was unlikely Jack would ever walk, she said to me, “I can tell you that I don’t have another patient exactly like Jack.” And she left it at that.

The impact of that simple statement was profound. What the neurologist gave me that day was hope. By not laying out all the possible negative scenarios for what Jack’s future might hold, she didn’t steal my hope that day.

Jack was ultimately diagnosed with a rare form of congenital muscular dystrophy when he was seven years old. Jack never walked. He never breathed on his own without the support of a ventilator and he never ate food by mouth. However, on that day I made my bold proclamation to the neurologist, had I been told that Jack would never walk, talk, eat or breathe on his own, I don’t know that I would have been able to get myself out of bed every day. By not taking away my hope, this doctor allowed me to believe that everything I did with Jack during his early years – trialing him off the ventilator, putting him in his stander, trying to get him to eat by mouth – were all worth the effort. She allowed me to accept Jack’s ultimate destiny in my own time and on my own terms. And in doing so, she allowed me to give Jack every possible chance to reach his full potential within his limitations.

The importance of hope cannot be overstated. Having hope does not mean having an unrealistic understanding of your child’s prognosis. We live the truth day in and day out. Parents are able to distinguish between hope and wishful thinking. Hope is what allows you to take a chance on the future. It’s what gave me, as the parent of a child with a devastating life-limiting disease, the strength to get up each day and “keep on keeping on.”

How information is conveyed by a physician can go a long way in preserving hope. By choosing words that didn’t steal my hope when Jack was six months old, Jack’s neurologist was instrumental in ensuring that Jack had the best quality of life for the fifteen years that he lived.


Hope matters.