Sunday, August 4, 2013

Family Rules

Let me be very clear.
Pediatric cancer (and frankly, any childhood illness) is a family diagnosis.

Sam has cancer.
He has the disease, no question. He's the one who puts up with the meds and the discomfort and the pain and the illness.

But we're all affected. The whole family.
And it sucks.
(I might someday write a book about how our whole community is affected. But I digress.)

Look, I know we put up a good front. We are together, we are strong, we are united. My kids do a great job of loving each other and being together and taking care of each other. But there are always cracks in our veneer. They bicker and fight, they worry about fairness and who gets what and why do you let him get away with that or why does she always want to do it her way or who gets to read the next page and who gets the last banana and who has to sit next to the baby and who gets to sit next to the baby and why does dad go there and when is mom coming home and where are my shoes? (And this doesn't even begin to address the strain on us, the parents.)
Might be my all-time favorite picture of these two...
This is a shared experience. We are all in this together and we don't know what the future will bring. But I do know that it will have impact on all of them, for the rest of their different ways.
Does your baby brother count as a "chick magnet"?
This Shabbat, we spent time at OSRUI, our home-away-from-home. The forced separation from camp for two summers now has had a huge impact on our family. I realized this Shabbat that Solly has (so far) very limited memories of camp. By the time my other kids were his age, they were on their third summer at camp. But Solly doesn't remember his first summer...he was just a baby. Don't get me wrong, he loved it there. Of course he did! But the realization sent me reeling. What other things are we giving up? What other things is he missing out on? What 2-year-old lifts up his shirt and tells you that he needs you to look at his "line"? What other experiences are they all missing out on and how will they remember this experience? I think a lot about twenty years from now, I imagine them all sitting around the Seder table, having coffee together after dinner (and eating pesadik brownies) and reminiscing about the time when Sam got will that conversation go? Will they remember the togetherness fondly? Will there be bitterness and anger worked into a forced laugh? Will they share their memories or will their different perspectives drive them apart? Will the years be kind to their remembrances of this nightmare?
They totally didn't want to leave him behind.
When I start to get a little maudlin like this, though, I also think of what we have gained and continue to gain throughout all of this. My kids adore each other. (okay, go back and read the other paragraph sometimes. But still...) With David away at camp, they truly appreciate his presence when he's with them. The enforced togetherness of the two rooms at the Ronald McDonald House certainly make them value each other as playmates and companions. Regularly walking into the hospital or even just hanging around RonMac has really broadened their understanding that there are lots of people in this world who are in need, and while I try to shield them from the terrible outcomes that we know about...they still know that there are people in need in this world in a new and horrible way. I know this empathy will have a lifetime impact on all of them....we're all in this together and I want to believe that they are all going to come out stronger, wiser, braver, more connected to each other and to us, their parents. I have to believe it.
The Fearsome Foursome
Tonight I watched my kids for a whole hour as they ran, screaming with delight, around the play structure at RonMac. They chased around after each other, making sure that Solly didn't get lost, keeping track of each other's movements and playing together in a totally beautiful and awesome way. There was another little boy, age 6, whose only sibling is a 2-month-old baby. My kids folded him into their game, and almost overwhelmed him with their excitement and easy siblinghood. They begged for more time...and then they read books to each other while eating a bedtime snack. I just sat back and drank it in.

It's not perfect.
There was squabbling over who got to read what page and who got to brush their teeth first and....I think you get it.
It's not perfect but it's what we've got.

They might not get it all. They might not understand today what we're doing and why. They might be sad or angry or frustrated (heck, we are!) but at the end of the day, they know that their parents are tucking them in at night and we are here for and with them....they know that they are their own team....

I'm terrified of what's to come. But I know what we've got to hold onto...
Imperfect Family Photo...


  1. Every family is different so our family's outcome is not guaranteed to YOUR family. However, our niece's 7 year odyssey with liver cancer & eventual transplant brought her older sister & younger brother even closer. We are years & years past her healing (Thank G-d) and they are a bonded unit as adults. They are each other's best friends & cheerleaders. Isaac was the little brother, barely 4 at her diagnosis yet he seems to hold no resentment or trace of damage from the years he "lost" with parents, siblings, "normal" family. I believe love is all & your family certainly has love in abundance....that will carry you through, will allow your children to surf the highs & lows, good times & bad times. Love will triumph. And that is my prayer (one of them) for you.

  2. Phyllis, obviously you guys have been doing something very right. You guys are extraordinary. You'll certainly over the years broaden your jobs by doing counseling of families in your very difficult situation. Your kids are great because of how you've been raising them from day one. The little squabbles are part of the being human. That's why our Biblical heroes, heroines are shown with imperfections. It makes us complete and humble.
    Refuah Shleimah

  3. A sick child or not, the interactions are so normal. They get along magnificently. As the youngest of 4 I remember things completely different then what my siblings recall. No matter the situation healthy or sick the perspective changes based on where you fall in the group. the oldest of the group my brotherwill not talk about his life before the age of 18 having dealt with my father who I understand was very hard on him and had very high expectations. however my brother had a learning disability that no one knew of or ever detected because they didn't understand those things when he was younger. As an adult he overcame it all... I had a completetely different relationship with my dad as the youngest, a girl and a pretty smarthigh achiever and by 7 the divorced and the dynamics changed. As adults we have grown pretty close together specially dealing with my parents deaths. we definitely have different perspectives and memoriesbut it doesn't seem to prevent us having great relationships with each other. Sometimes we disagree on the fine points.your children have great parents so much support from family and friends and although different memories at different ages I can tell they are going to be amazing adults, friends and siblings. Keep up the good work. I know it's hard not to worry as a parent but try to focus on all the good and no you are amazing both of you

  4. The beautiful mysteries of love and memory are not ours to understand or attempt to control. And you're so wise to be present and awed by their power over us, both as individuals and members of a group. You all bear the scars of this battle, but in return you've also created an unbreakable bond of love and commitment that will transcend any assault. xoxo

  5. What a beautiful post. Praying for good biopsy results for Sam and strength to all your family.

  6. What a beautiful post. What a beautiful family. Not despite the imperfections, but even in and through them.

    Sending love.

  7. Your kids are incredible. You and Michael are such loving and wonderful parents and people. This will only make you all stronger and closer.

  8. I am in awe of how wonderful your family is, and as other have said above in better words, it's clear how much love and devotion there is between all of you. So much admiration and so many prayers going out from me to you all.

  9. I love the family photo ... But I think you mis- labeled it cuz you look perfect! Also, we're thinking of you on our way to OSRUI this weekend :)