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

Tuesday, December 2, 2014

Give Sorrow Words

Give sorrow words, the grief that does not speak whispers the o'er fraught heart and bids it break. 
-William Shakespeare

The quote above was shared with me by a mom who lives in South Africa, who follows my blog and who has also lost a child.  It is those words that compelled me to keep writing after Jack died. I felt like I needed to continue to write because to silence my grief would most certainly cause my heart to break. 

But the reality is, my heart is broken. Period. Regardless of whether I write or not. And lately, I haven't felt much like writing. I've done a considerable amount of reading about loss and grief over the last several months. Much of what I've read has been helpful and comforting, however, I've also discovered that much of what is written on the subject is an attempt to get others to understand the grief of losing a child. And the fact is, no one can ever truly understand who hasn't lost a child. I believe it's impossible for a parent's mind to even conceive of the pain of losing a child because the pain is incomprehensible. Therefore, it's not even in the realm of possibilities for others to understand our loss. I was holding Jack in my arms after his heart stopped beating and I still didn't comprehend that he was gone. It simply wasn't conceivable in that moment. 

I'm not suggesting that people shouldn't write about their grief or that people shouldn't try and understand as best they can. But, for me, I'm becoming weary of reading about grief and I don't feel that documenting my grief is the direction my writing is supposed to take. Yes, I still need to deal with, work through and talk about my grief. If I've heard it once, I've heard it a hundred times - grief is a process. You can't shut it down or put it on hold. You must allow yourself to experience it to survive it. And experiencing grief, I am. Profoundly and intensely. 

So, what exactly is the point of this post? I suppose, in part, to offer an explanation to those who follow the blog as to why my writings have been few and far between and why they will likely continue to be few and far between. That being said, I'm not finished writing. I started writing on this public forum over eight years ago because of a beautiful little boy named Jack. I shared not only Jack's journey, but also the many life lessons that little boy taught me as we journeyed fifteen remarkable years together. I believe it's what Jack taught me (and so many others) that needs to be shared. 

I pray daily for guidance and clarity and the strength to "switch from the fixing, fully understanding, and controlling mode to the trusting, listening, and allowing mode."  During this time of allowing myself to simply "be" and to trust and listen, I was recently asked about collaborating on a book by one of Jack's former doctors. This book idea is in the very preliminary stages - as in, it's just an idea at this point. But we plan to meet after the first of the year to discuss the details and I'm excited about the prospect. I'm trusting that I've been given the clarity and direction I prayed for. Stay tuned.

Rather than give my sorrow words, I'd prefer instead to give words to the wisdom and lessons of Jack's life.

Onward it is. 

Wednesday, November 5, 2014

Jack's 16th Birthday

Yesterday was Jack's 16th birthday. Here are pictures of how we celebrated this special, yet difficult day.

Birthday balloons

We hiked the same trail we hiked in January for Jack's memorial hike

and we released 16 butterflies in honor of Jack's 16th birthday

this butterfly hung around for awhile before he flew away 

A birthday cake to celebrate the 16th year of my beautiful boy's birth

Good night sweet prince. We miss you and love you always 

Sunday, November 2, 2014

For Everything There Is A Season

For everything there is a season,
and a time for every matter under heaven.
A time to be born and a time to die. 

Thursday, October 16, 2014

How This Feels

Willow tree sighting sent by my friend Karen from somewhere near Seattle

Last week while we were sitting at Eric's swim meet, Mark said to me "I can't do this anymore". I asked him if he meant he couldn't sit through another swim meet anymore and he said, "No, I can't live without Jack anymore".

That's how this feels. 

Every day you wake up wishing you could die. Not because you don't want to live, but because you are so desperate to see your child again. As another grieving mom stated so perfectly:

"I have the hope of heaven, and like many bereaved moms, I operate with one foot here and one foot there. Death holds no sting or fear for me at all anymore."

I have three other children to love and care for, so I have to keep living because I need to be here for them. I also know that the gift of Jack didn't end with Jack and I believe there is something more I'm supposed to do with the lessons and the love that Jack gave me. Yet, the torment of wanting so desperately to be with Jack while recognizing that my work here is not finished can be unbearable at times. 

That's how this feels. 

I've been able to talk with other moms who have lost children and what I'm learning is that there is no right way, no wrong way and no easy way through this. There is no survival guide. There is only our own unique way to press on, to get up each day and put one foot in front of the other. There's no moving on, no getting over it, no putting this behind you. There's only living through it. You can't think too far ahead because imaging another twenty or thirty years without Jack is inconceivable. My biggest fear is that people will forget Jack. And the reality is, people will forget Jack. Five years from now, it's possible I will have friends who won't know me as Jack's mom, who will have never known Jack. When I imagine a time when people won't remember or know Jack, it takes my breath away, literally.

That's how this feels.

What saves me in this moment is that I can talk about Jack and about my grief and there are people who will listen. It also helps to write. I don't know who all is reading, but I'm going to believe that despite how repetitive and uninspiring my writing is these days, there are people who are reading and listening. It's what gives me the strength to carry on. That, and the hope of heaven.

The four most important words you can say to a grieving parent are "How are you doing?" and then be willing to simply listen to the raw truth about how this feels.

Inching Onward by the grace of those who ask and then listen.

Sunday, September 28, 2014


To say the last nine months have been tough is an understatement. Some days I wonder if I'm going to survive this. But consistently, on those days when life feels the most unbearable, at just the right moment, I'll receive a text from a friend letting me know they are thinking of me. Other times, a picture of a willow tree shows up on Facebook or my phone with the note "made me think of you and Jack". The notes, pictures and reminders of Jack - what I like to call "Jack-Winks", are without question what have carried me through this last year. Thank you for sharing your Jack-Winks and please keep them coming. I'm really going to need a lot of Jack-Winks to carry me through the upcoming months that include Jack's birthday, the holidays and the first anniversary of Jack's death. 

Here are some of the Jack-Winks that have been shared with me over this last year:

South Dakota willow tree from my friend Katie.
(beautiful picture!)

Austin, Texas willow tree from my friend Barb.

Atlanta, Georgia - shared by my friend Erica.

Sedona cairn - from Erica

My friend Jean traveled to Spain to walk the Camino de Santiago. 
She placed Jack's stone along the Camino.

Jean shared this willow tree - Astorga, Spain.

Willow tree and my friend Ben at Eckerts Apple Orchard in Illinois (I think).

On a day when I was having a rough morning at work and had just walked out of the office because I couldn't get the tears under control, a text message came across my phone with this picture and the message "thinking of you and Jack" from my friend Ali in St. Louis. When I told her that her timing was perfect, she responded with "I believe I was prompted by an angel."  A definite Jack-Wink!

From the campus of Washington University Medical School/St. Louis Children's Hospital - my friend Jenny sent me this picture and asked, "Is this Jack's tree?" Yes, this is unofficially Jack's Tree at Wash U/SLCH!

Connecticut willow tree - thanks Christina!

Bethesda, Maryland "Jack banner" from my friend Diane. 

Inching Onward with the help of all the shared Jack-Winks. xo

Sunday, September 21, 2014

My Daily Stop

I still go by the cemetery almost every day. Oftentimes, more than once a day. I stop by on my way to work in the morning, on my way home from work in the evening and always on the weekends. Being at the cemetery doesn't make me feel close to Jack. I don't feel Jack's presence sitting by his grave and I don't talk to him when I'm there - except to say "I love you and I miss you Jack" when I leave. Why do I feel so drawn to spend time at the cemetery then? Because it gives me something to do for Jack. Well, not really for Jack - but the only tangible thing left of him - his final resting place. How does one go from providing the extreme day to day care Jack required for fifteen years to doing nothing? I was always doing something for Jack and I haven't yet figured out what to do with my empty hands and unfilled time. My heart and my hands want to do something for Jack. So instead of caring for Jack, I care for the little plot of land where what remains of him physically rests. I water the grass, I pull weeds, I keep his marker clean, and I change out his flowers every few months. I've even taken to caring for the neglected grave sites of an elderly couple who rest next to Jack. It was not lost on me that the husband's name was also Jack. No, I'm not crazy, at least not yet. My daily stops at the cemetery help fill the massive hole carved by Jack's absence and I'll continue to go for as long as I'm drawn to do so.

On another note, Jack's permanent grave marker will be ready the first part of October. I think it will be beautiful and reflect the great soul our sweet Jack was. I'll be sure and share once it's been placed.

I want to answer a couple of questions that I get asked all the time. The most asked question I get from people is "What are you going to do with Jack's room?" Jack's room was the gathering place of our family for so many years. Today, the room sits silent and unoccupied. With great strength, we are able to keep the door to his room open. We see into Jack's room every time we walk into the house from the garage. There's no avoiding the "in your face" void of the centerpiece of our home. So, what are we going to do with Jack's room? We've tossed around the idea of selling our house and moving. It would certainly be easier to move than to try and recapture the light we lost when we lost Jack. If we do move, it won't be for a few years yet. In the meantime, what I would like to do is take Jack's bed out of his room and put a desk in its place. A desk where I could sit and write. I could shut Jack's door - not to shut out the pain, but to shut myself in and surround myself with all the love and memories Jack's room holds. Mark is not yet ready to start dismantling Jack's room so I'm not pushing it. Maybe after the first of the year he'll be in a place to make the change.

The other question I get asked often is "how are the other kids doing?" The short answer is, they all seem to be doing okay. We aren't a family that talks openly about our feelings. If I was to ask Eric what he's feeling about Jack being gone, he'd cut me off real quick. He's very astute and will avoid getting into any "heavy" conversations about loss and feelings. Eric has always enjoyed and thrived in the Sibshops  offered by Ryan House. After Jack died, Ryan House kindly allowed Eric to continue to attend Sibshops even though they are geared for sibs of special needs kids who are still living. The next series of Sibshops, Eric is going to be a volunteer/helper rather than an attendee - although, he'll certainly benefit just as much in his new role. Mary is the most open about her feelings and the pain of Jack's absence. Obviously, she misses him tremendously. Hilary seems fine, but she isn't one to carry on a conversation of any sort - let alone one about the loss of Jack. We are all just trying to live life the best we can, each with our own unique feelings of loss and grief. 

Lastly, I want to share a book that I just finished reading, titled "Rare Bird" by Anna Whiston-Donaldson. Anna writes about loss and love after her 12 year old son, Jack, died in a drowning accident three years ago. So much of what Anna wrote resonated with me. Grief, faith, guilt, heaven, love, strength and finding a way to live life again. She's honest, she's real and she gives hope to a grieving parent. One thing that really touched me was when Anna reconnected with a college friend after her son died. This friend tells Anna that Jack is sending messages for Anna through her. Just as I would in the same situation, Anna struggled with reconciling her faith with the whole idea of visions and psychics, but she eventually agreed to receive the messages her friend had to share. This particular message really spoke to me:

"You will always be my mom. I don't live in the sky. 
Why does everyone look up? I'm not up. I'm here (pointing to your heart)."

As someone who spends a lot of time looking up, this made me cry because it's so true. I need to remember that like Anna's Jack, my Jack isn't in the clouds, he's in my heart. Forever and always, he'll be in my heart. 


I'll close with these words, which are directed to no one and to everyone. They are simply intended as food for thought.

For the record, I am exceptionally grateful for each and every one of my other children. 

Inching Onward.

Wednesday, September 10, 2014

So I Write Again

"It takes invincible strength to mother a child 
you can no longer hold, see, touch, or hear."
(From Mother of All Mothers by Angela Miller)

Despite saying that I was going to continue to write privately, after I signed off writing on Jack's blog I stopped writing all together. I need to write, if for no one else but myself. It's what has sustained me through the years by giving me a medium to express what's in my heart. The good, the bad, the joyful, the unbearable. It's also what connected me with the most amazing people who have become my best friends, my sorority sisters, my comrades in arms and my  village. After Jack died, instead of continuing to reach out to the very people who have supported me through the thick and thin of Jack's journey, I withdrew. I assumed that you didn't want to walk this leg of the journey with me. It's painful, unrelenting, and uncomfortable. I was wrong. Thank you to those of you who have encouraged me to keep writing, who are still with me, and who are willing to walk with me as I grieve life without Jack and search for my new path. 

I was hopeful that once I started writing again that I would be able pronounce to all of you that I'm doing better; I'm moving forward; I'm going to be okay. But the raw truth is that I'm struggling mightily. Each passing month does not temper the pain. Quite the opposite. Each passing month brings more clarity to Jack's last months, days and hours. And with clarity comes tremendous fear, panic and guilt. There are many moments when I can hardly breathe thinking about Jack and what he must have felt during his final days. Wishing so desperately that I had done things differently. The tears are many. I'm not holding it together very well. I'm not strong. 

So many times over the last fifteen years I've heard how strong I am. Yet, every ounce of strength I possessed flowed directly from Jack. His grace and soulful eyes filled me with all the strength I ever needed. People have suggested that I find strength in Jack's memory and in honoring him. But the reality is, I draw no strength from Jack's memory or in his honor. Without Jack's physical presence, I am weak. Being strong in the eyes of others is an incredible burden to bear. Part of the reason I stopped writing is because my inability to be strong was so transparent. Having to admit now that I can't walk this grief journey alone is one of the hardest things I've had to do. But I finally had to concede. 

So I write again. I ask for help and I reach out and try to connect with other parents who have traveled this journey before me and who have survived. I look to be lead instead of lead. If there was ever a time I needed my village, it is now.  

Inching Onward  . . . one breath at a time.