Thankful for nurses (6 years gone)

Today an anonymous person sent us cookies with Max's picture on them. To whomever sent the cookies: Thank you. Looking at his face I feel like a Wild Thing telling Max, "I'll eat you up, I love you so."



The distractions are gone. I don't have to go to work tomorrow. Grace doesn't have school, and Margaret's pushed her grad school studies away. It's time jump into some intense grief. No point in trying to avoid it. He died on a Wednesday, the Wednesday before Thanksgiving. This year the actual date is on the holiday, but like most years, it's a matter of just getting to Friday.

Thanksgiving isn't fun. I'm not going to pretend it is. We'll be thankful again on Friday. But we aren't thankful for this anniversary.

Tonight (Tuesday night) is the anniversary of the last night we spent with our boy. We began to know then the finality that we still feel now. We chose that day to say goodbye forever, and the final night was our chance to hold him for the last times until the proceedings of the final day could be performed in the manner we best saw fit. This night we spent with the nurse who spent the most nights with Max, and it was right she was there. She had taken care of Max so carefully for so many nights, all the while keeping us up to date until we couldn't hold our eyes open any longer, usually around 3 in the morning. She had a way of suggesting it was OK for us to sleep, not just because we had to function, but because it would be OK, Max would be OK, that she would be looking after him. Her name is Yuri, and her nightly routine, her shift, was so very important to us. We are grateful that she was there for us that final night.

On Wednesday morning 6 years ago, the shifts changed and Max's primary nurse Anmarie came over. She came in to be with us for this shift. To be with us to help us let him go. We know now that she had to let him go too, that she had probably come to feel very close to him, maybe even to love him. Maybe it would have been just part of her job, just part of her routine, but I don't believe that. Even now I'm in awe of her strength to be with us in that room to be there for his last moments, trying her best to give us our final moments of privacy. Oh how she helped to clean his lifeless body with Margaret, to help us dress him before anyone else came in.

Often we talk about the Ronald McDonald House and the care and love that we received while living there. What we learned about ourselves and about the world was informed by the most naked display of compassion that keeps such a place full of light in a sea of darkness. But tonight I just wanted to recall two nurses who saw us at our lowest point, who saw our son at his lowest point, and after that. They saw us looking like total hell, and they saw a boy dying day by day.

They surely knew his future before we did. That was their job. They see sick kids and they see kids die. They must know it when they see it. How then, does one care for a child whose destiny is foretold? How then, to care for parents whose hope blinds logic? First they dive into their routine, they check the meds, they read the machines, they write their notes. But second, they turn and listen. They listen to the parents' fears and they listen to their raw need for support and they never, ever, ever, ever, ever, ever, judge. While there was still a glimmer of hope in our hearts for our son, however dim it might have seemed to their training and experience, they turned to us and to our son, and matched our love to the very end.

It's right to ask what are you thankful for this time of year. I'm thankful for my family, for a wife and daughter who give me support and love and who have helped me climb out of the deepest holes of despair and grief.

I'm also so very thankful for the nursing care Max received in Minnesota. Thank you for making the care of others your life's work. You are what I'm thankful for today, tomorrow, and of course, on Thanksgiving.

Is it OK if I have another cookie? Will it heal the pain if I have a cookie for every year he's been gone?

Friday Margaret will try to Black-Friday-shop the grief away, then we'll put our Christmas tree up, with Max's picture in the front. Saturday we'll push Thanksgiving away finally by going to the windows at Macy's, walk around the German Kindermarket and city tree in Daley Plaza, and see A Christmas Carol. In Scrooge, we'll see a metaphor for our feelings this week. We'll see Scrooge start as the most miserable, ornery, nasty beast of a man (waking up Wednesday). As they play goes on, we'll see him transform into the happiest, most insanely buoyant picture of joy (walking out of the play on Saturday).

Will we really be as happy as Scrooge? Will we really be able to make that transformation?

We'll try. Like every Thanksgiving, we'll try.


--Mike, Margaret & Grace

Happy Birthday Max

July 7, 2008

Max would be 7 years old today, on what Grace would call, his “golden birthday.” It is so hard to believe 7 years have passed since his birth, and 5 ½ years since his death. How unnatural it is for a child not to be here to celebrate his birthday, and oh how we miss him every minute of every day. Just look at our beautiful boy.



Time passes so quickly, and it seems as if we just wrote our Thanksgiving update. So much has happened since then. Grace finished a very successful 3rd grade year and is busy with lots of different activities this summer, including dance, swim, pottery, guitar lessons, invention camp, and classes at the Art Institute. Mike is busy with work (as always) and is training for another run, despite a back and hamstring injury. We are both trying to live healthier, and exercise more. In an effort to combat grief last November I started attending an outdoor women’s boot camp. I must have been out of my mind at the time, but I have stuck with it, and though I am still the worst person there, I am making improvements, and feel much stronger and healthier. When Mike and I push ourselves, we do it for Max and Grace.

I have been very involved in my women’s club for many years now, and I joined it as a way of paying back all of the kindness that was shown to us when Max was sick. We do many community service projects throughout the area, and it has meant so much to me to be able to be a part of doing good. I have always done it in Max’s memory. I have been President for the past two years, and was looking forward to ending my term on a positive note this spring. Our world came crashing down around us when we learned a very close family friend, who was the treasurer of the group, had been writing herself checks since she began her term last year. Mike and I were devastated and heartbroken, as were all of the women in the group.

Grace and this woman’s daughter had been best friends since kindergarten, and our families spent many holidays and events together throughout the years. We are left feeling extremely taken advantage of, embarrassed, stressed, and worried. Since I brought her to the group I feel a tremendous weight for what she did. I know many people are furious with her and disappointed in me. While Grace does not know all of the details, she knows the families are no longer friends, and she is sad. Mike and I are confused and very hurt.

Why do I even mention this in an update on Max’s birthday? It is because it has forced me to take a very long look at myself. I realized that I have thrown myself and my family into all of this volunteering over the years not just to honor Max, not just to pay it forward, but because in some way I felt I had to atone for the fact that we could not save him. In fact, though it sounds completely nuts, it took until last November for me to actually realize that all of this volunteering was never going to bring him back. And while I attribute the volunteering to helping save us, and especially me, from the depths of grief, I must admit that I used it too much as a crutch. It became too much of who I was as a person, and when someone I thought was a friend destroyed what I had worked so hard on, it really took a toll, and continues to do so. My mother tells me my former friend’s actions do not negate the work that our group did over the years, it is just heart breaking for it to end this way.

So where does this leave things? Mike is encouraging me to take control over my life and start working on myself for a change. Exercise is a part of it, as is my enrollment in graduate school next fall. I will continue to volunteer, but hopefully have a healthier outlook on it. And, as always, we are trying hard to keep focused on the positive things in our lives, even as the grief and sadness try to weigh us down.

One positive will always be an excuse to entertain and to be among friends. This 4th of July we threw our biggest outdoor party ever and though it rained on us, we did hear Grace tell her friend's little brother that she was sure that her brother would be friends with him if he were alive. She spoke so matter-of-factly and confidently about what kind of person her brother would be that it was another remarkable reminder of how her strength comes from the purest, most direct, emotionally hopeful place. Spending as much time as we do with this family and with this little brother, I'm sure she's right!

While one person did so much damage to our lives, we have to think about all of the people who jumped in to help during this episode. We are blessed to have some very smart and professional friends to advise us and step in when needed. And it reminds us of all of the other people who have come to our aid over the years, and put up with the fact that we are absolutely and forever changed by the loss of our son. Whether it be a family member who took off work to spend time with us in Minnesota, a long-lost cousin who drove up on Thanksgiving and packed up our belongings to move them back home after Max died, a mom who befriended me after Grace announced to her new pre-school classmates that her brother had just died, a new friend who takes the time to learn about our experience, and especially for those who remember our precious boy - we are grateful for you. We are so grateful for the brief time we had with Max, for our wonderful daughter, and for each other.

Happy Birthday, Max. Every ounce of us loves and misses you so very, very much.

~Margaret & Mike

5 Years Ago

It's that time of year again, and the past few years it has been the only time we ever write an update. We toyed with the idea of writing an update a month ago before all of the sadness settled in, but Ilife got the best of us and we never did get around to it.

The beginning of November brought with it the usual sadness, but overall we were feeling a bit more "normal" this year. That didn't last long, and we find ourselves at grief week again. It has been 5 years now since Max left us. And the 26th falls exactly as it did 5 years ago - the day before Thanksgiving.  Unbelievable.

To quote another website (who quotes someone else who lost 2 children), November feels like this:

“... those deathdays are hard. Or, I should say, it is the anticipation of the deathdays that is hard. For me, the day itself is not so bad. it is the days leading up to it, as I have a sense that death is coming again and I can’t stop it. I feel a sense of dread and helplessness."

We are not usually ones to start quoting other people, but when we read this we immediately understood what she meant. In November, the memories of Max's greatest suffering come back. It really is quite exhausting. And sometimes it is even worse to remember the good times - his smiles, his laugh, because then you realize just how much you have lost.

We cannot say enough how much small gestures from friends or family mean to us, especially in November. They get us through our days. To know that he is remembered, when it seems he is being more and more forgotten, is a lifesaver. So thank you to those of you who still read this, and to those who let us know you think of Max.

Grace broke down in tears tonight at dinner when we started discussing our plans for Wednesday. Grace is going to play at her friends house while we go to the cemetery. We usually bring her whenever we go, but this day we like to keep her from our deepest grief. She just doesn't understand why something like this happens. She has been a very sensitive girl these days, and crying comes very naturally, but tonight she cried a different cry. After requesting and watching some videos of her and her brother, she felt much better. Seeing her 3 and almost 4 year old self interact with her brother on video really makes her laugh. They really were beautiful together.  

We don't have any answer to Grace's question of "why did he have to die?" Because there isn't an answer. Even when we try to remind her of the positive changes in our life that have risen from the rubble of 5 years ago -- new friendships, new perspectives -- it doesn't seem enough. In so many ways we want to believe that we are "better" for having gone through such an enormous tragedy. We think we're better people to others, we think many ways we're better parents to Grace. But who knows? Our relationships with others are certainly affected by the layers of grief that are always covering us, no matter how transparent they may seem. Our parenting of Grace comes with an inevitable weight of over-protection, over-sensitivity as we try so hard to make sure that the one child who remains is never hurt again.

We are members of a club whose membership no one wants. Even five years out, when work is a normal day, and school is a normal day, and all of the minutia of everyday life is filling all of the little cracks of grief, the dam can break suddenly when a memory comes rushing to mind. People who have lost a child know this, people who have watched great suffering know this. When we are with these club members, there is a shorthand, an ease to understanding. We are thankful for the friendships that have been made through mutual sadness, however strange that sounds.

Since we last wrote an update life has been very busy. A few days before last Christmas we had some very messy, very expensive plumbing problems with our old house, followed by some very drawn out, expensive heating problems. Luckily things on the home front have settled down. We will soon celebrate Grace's 9th birthday, and our 13th wedding anniversary. Mike is busy with work as always, Margaret is busy volunteering, and Grace is busy with everything! We are so very grateful for each other and for everything we have.

This summer Max was featured in an ad for the Ronald McDonald House charities on the back of the USA Today sports page. What a feeling it was to see his picture in print like that. We hope that his story continues to inspire people to help others in need, just as his smile and his struggle keep inspiring us everyday.

And we cannot end this update without mentioning a very special, very beautiful 9 year old girl. Sweet Susannah White, daughter and sister to our good friends Amy, Klane, and Madeline, joined Max in heaven this past July. Her fierce battle with Hurler Syndrome and complications from transplant, her determination to live, and her absolute love of life will never be forgotten. The same weekend of Susannah's funeral, Mike travelled to New Jersey for the burial of his grandmother. The emotions surrounding the passing of a 9 year-old and a 90 year-old were very different, but comfort came from knowing Max has the best, most lovely playmate now, and is probably sneaking candies from the dish of the greatest storyteller we knew.

Best wishes for this Thanksgiving and the holidays.

Margaret, Mike, and Grace