It's Beginning to Look a Lot Like Christmas

 Tim, Jack Margaret 2006

Tim, Andrew, Anna, Margaret 2017

Andrew is VERY excited about Christmas. He has been a little more "hands-on" with our two trees than I'd prefer, but so far breakage has been minimal. Without a peep from me about Santa, he is very much on board with the jolly guy delivering him a fire engine down the chimney in a few weeks. I'm guessing he got this intel from Mickey Mouse and Llama Llama on TV.

We've also been reading books and talking about Baby Jesus. Last week Andrew messed with a present I bought for a local charity. When I asked him about it, he said, "I think Baby Jesus came into our house and broke it." Wonder if he thinks Jesus used the chimney? It was pretty funny.

Guess who else is looking forward to Christmas?

ME.

I wanted to let you know that, because some of you are in the early days and months of grief, and the holidays are something to be endured, ignored, slogged through, and merely survived, not enjoyed or anticipated. It is hardly conceivable to you that someone who has endured great loss as you have would be able to look forward to ANYTHING again, let alone precious family traditions. I see you. I hear you. I understand that at a deep level. All you can do at this point is hold on and be gentle to yourself. If I can provide any measure of hope to you, I want to do that. And if hope seems like far too much, I want to bear witness to your pain.

Many others of you were with me those first few years when I showed up for holidays in order to be there for Margaret and to continue family traditions. It was brutally painful. You prayed us through those days. Thank you.

Last week, as Margaret and I hung ornaments, she said, "I love Christmas! The decorations, the music, everything." I was shocked and happy to hear this. First, because teenage girls tend not to express a love or appreciation of much, but also because I'd wondered whether Christmas was ruined for her 7 years ago when her childhood became a clear Before/After.

My own optimism is enriched by the opportunity to experience the joy and magic of Christmas with a small child again, but it is not BECAUSE OF THIS. Some factors have been the passage of time, giving myself permission to mourn, and an eventual re-framing of my thoughts about death. I see death as a transition now, versus an ending. Just as Margaret's Christmases faced a transition, a very painful one, when Jack died, they did not end there. In death, Jack transitioned to heaven, but nothing about him, except his physical presence has ended.

In the early years, naturally so, I grieved his physical presence mightily. Having a toddler to kiss and snuggle again reminds me even more of what it is like for a mother to be so physically enmeshed with a beloved child as to know every part of him/her. No part of Andrew is foreign to me.

My own thinking has landed at there being a time for everything, and that although I do not understand why Jack's time here on earth, or my mother's, was so short-- and why mine is longer, I am learning to accept that. The brittle bag of bones I felt like just a few years ago has been replenished with life and hope, despite new wrinkles and the scars I carry. This is not something that can be forced or rushed, and you will NEVER find me pushing it on anyone else. Forced peace, inflicted gratitude, and faked acceptance is not helpful or healing.

Instead, I will just say I'm really looking forward to the holidays this year. And if you are not, I see you, I care, and you don't need to be a smidge different to be here with me.



**p.s. A Hug from Heaven is Amazon's #1 New Release in Children's Death and Dying books! Email me at ahugfromheavenbook@gmail.com if you would like me to send you a signed copy with FREE shipping and a photo sleeve for your loved one's picture.

**p.p.s. Right now I am having an online Stella and Dot party to raise money to support families whose kids are in cancer treatment. Please treat yourself to something awesome and help Stillbrave Childhood Cancer Foundation at the same time!

Charlotte

My friend Kathy is a planner. When we get together for girls’ weekends, she has incredible restaurant suggestions for us. She knows which art exhibits are coming to town. She and her husband actually go on vacations together because she researches and plans and budgets for them, rather than sitting around wondering, “Why don’t we ever dooooo anything?” Kathy plans; Kathy achieves.

For Kathy, planning meant college, and law school, and marriage, and 2 kids. Which did happen, but not the way she planned.

When her second daughter, Charlotte, was a baby, Kathy noticed that it took Charlotte longer to do things than it had with her first daughter. Those of us a few more years into motherhood told her not to worry, that Charlotte was just fine. I must admit we probably thought Kathy just didn’t get the whole “babies develop at different rates” thing. We may have thought Kathy needed to relax a little.

But Kathy knew. She knew something was different about Charlotte. Kathy spent hours and hours teaching Charlotte to crawl and walk, when other babies did that on their own. When cutie-pie Charlotte started talking, but then lost those words shortly thereafter, Kathy’s friends and family finally began to fathom what Kathy had been trying to tell us all along.

Doctors’ visits, profound fear and sadness, whispered words like “autism,” and feelings of hopelessness entered Kathy’s well-planned life. No one knew what was causing Charlotte’s delays. And no one in our small sphere of friends even had the context to deal with what was to come. You see we were still in the pregnancy and potty training stages where we talked about lack of sleep, chafed nipples and pre-school spats. Depression, OCD, divorce, bullying, learning disabilities and other messy topics hadn’t yet entered our lexicons.

And then came Rett.

Charlotte was diagnosed with Rett Syndrome, a neurodevelopmenal disorder that affects girls almost exclusively. It is characterized by normal early growth and development, followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability. Rett girls cannot speak. Many are in wheelchairs. Every two hours a girl is born with Rett Syndrome.Who knew?

As Kathy said, “We were circling the drain.” The sense of loss for the life Charlotte could have led was staggering. The stress of making decisions for Charlotte’s care was enormous. This was not what Kathy planned for her precious little girl. Kathy felt doomed to a life of sadness.

But slowly the fog began to lift. The planner in Kathy used those skills to educate her family about Charlotte. She helped organize events to fund Rett research. She marshaled her talents to get Charlotte an array of help from amazing teachers and specialists. She plugged into a school system with vast early intervention resources, which even placed Charlotte in a special-needs preschool class right next door to her big sister’s kindergarten.

And most importantly, Kathy bonded with other moms with children with severe challenges and realized she was not alone. And do you know what she saw when she looked at these women? They laughed. They cried. They ran. They had sex with their husbands. They drank wine. They went to Disney. They had more kids.

More kids? “Two and then Through” became a thing of the past. On the practical side, Kathy and her husband did not want their older daughter to bear the sole responsibility for Charlotte’s care when she grew older. So Kathy and her husband jettisoned their plan for two kids and well, forged ahead, if you know what I mean.

But if Kathy hadn’t already learned some lessons about planning before, she did now, when the doctor told her she would soon give birth to not one, but TWO beautiful, healthy girls. Twins!

An orderly life of work and play and 2 kids, is now the busy, bustling life of a house of 4 girls. A happy house that rings with laughter, and tutus and art tables and…. personality!

Charlotte is cherished by her sisters and their friends. Through her, they are learning about differences and love. The twins, even at age 3, already nurture and care for big sis Charlotte. She has a calm, content demeanor. She loves the water, going to school and camp, and her adoration of Troy Bolton from High School Musical went unabated for years. She likes to steal food off her sisters’ plates, which makes the whole family smile.

Kathy would never have envisioned this house full of girls for herself. Just as she would not have envisioned having to share her house with home health aides and specialists and large-sized diapers. Planning and structure are still there, because they are so needed, but so is a degree of acceptance and relinquishing control beyond Kathy’s expectations. This acceptance has led to a rich life and the kind of life lesson none of us asks for but some of us get.

As Kathy wrote to me, “...I am grateful that Charlotte taught me never to give in to sadness. And because of Charlotte being who she is, we now have these two creatures who make me laugh every day. It is hard to imagine not having the twins, but I know for a fact that I never would have tried for another baby if Charlotte had been a typical child…I am sure people feel sorry for me because of Charlotte’s diagnosis. And I know for a fact that people feel sorry for me because I had twins. They are probably so thankful that they are not me. And that’s OK. But I know for a fact that I am lucky. I have four daughters and I love them all with my whole heart. And they are all wonderful and needy and loving and frustrating and sweet and annoying. None of them are “perfect”—except to me!”

Kathy prays that medical research and breakthroughs will help Charlotte and other girls with Rett, and she hopes you and I will be a part of that.

To learn more about Rett Syndrome, or to make a donation for much-needed medical research, please visit the International Rett Syndrome Foundation.

And today, in whatever situation you find yourself, when you may be thinking as Kathy did, and as I sometimes do, “This is NOT the life I signed up for,” remember that you are never alone.

Skirting the Issues

I got my first Lands End catalog of the spring season and I am excited. I am a true bargain shopper, dumpster diver and recycler, but once a year I pore over full price merchandise that runs well over $100 plus shipping. What makes my heart get revved up this way? The Skirted Bathing Suit. For the past seven years or so I’ve worn a skirted bathing suit, and well, it just seems to fit: my life, my personality, my ample backside. I think there are those of us who were born to wear the skirted suit, but we had to wait decades, pulling and tugging on regular suits, until the skirt went mainstream. Well, perhaps not mainstream, but until it became more widely accepted.

I think back to my childhood, when I only saw one or two skirted suits a season, each worn by women in their 70’s or 80’s. The rest of us were doing that trick to find bathing suits with the highest leg openings possible. I didn’t feel successful unless my suit went higher than my hip bones. At some point someone had told us that the higher cut the leg, the longer our legs would appear. I think it was the same person who told us orange blush applied in a line on our cheekbones would make our faces look more defined. Anyway, back then, skirted suits were not on the fashion radar.

It wasn’t until I became a mom, quit my job, and started hanging out at the neighborhood pool that the necessity for a skirted suit became crystal clear to me. First of all, I went from lounging in a deck chair reading a magazine, to chasing toddlers around. My regular suit would not stay put, and unless you are in Rio, a wedgie is not a good look at a public pool. Second, I realized that the neighborhood pool would be frequented by, well, my neighbors. While my goal as a teenager at the pool was to see and be seen, I now wished I could fade into the background or hide behind my wacky noodle. Chatting about preschool or church issues with my neighbors, as I stood around in the equivalent of my underwear, felt just plain weird.

I thought back to my childhood and a few things fell into place. I remembered that as soon as my sister and I were able to splash around in the water by ourselves, my mom was out of the water and back “on the deck” wearing street clothes. I remember thinking this was really odd when I was a kid, for there is not much more miserable that sweating in street clothes in the hot sun while those around you are cool and comfortable in the water. I realize now my mother, not too happy with her body, preferred to sweat it out rather than be seen in a bathing suit by people she could run into at the local Safeway. We never talked about it, but I do remember how excited she was when we finally earned our swim patches and could walk down to the pool by ourselves. She enthusiastically handed us our towels, snack money, (no sunscreen of course!), and sent us out the door for the day. I realize now what was missing. She didn’t have the skirted suit.

I have become so accustomed to my skirted suit that perhaps I’ve become a little too comfortable. There is no way the suit covers all my cellulite, which is creeping down toward my knees, yet I wear it with confidence. Each January I used to panic about my flabby legs and plunge into an exercise routine; now I just order one size up. Also, no more shaving for me. I figured the skirted suit freed me from this dreaded ritual forever. Last summer, however, when my little girl learned to swim, she came up for breath and said, “Mommy, with my goggles on I can see the ladies’ hair “down there.” “Oh, Really?” I responded. “No, just yours.” I guess there is such a thing as being too comfortable.