Find Your Lifeline, Sailor - It's Out There

It’s been months – probably way over a year – since I’ve logged into the online parent support group that was my lifeline through the worst of my child’s health crisis. During those times, it was a godsend (and an inspiration for beginning this blog).

After really bad days, when my child was finally sleeping peacefully, I would scroll through posts. Drained emotionally, it was somehow comforting to read about other people working through their own daily struggles.

I felt very alone during those years, when friends and neighbors couldn’t fully understand why we could never commit to socializing until we saw how our child felt that day – and even then would likely cancel at the last minute when things took a turn for the worse. At least online, someone else was also home at the computer, having rushed out in the middle of the school play, or abruptly left the ballgame, because of a sick child.

I also felt vindicated to see other parents searching for demanding improved quality of life for their child, over and above simply counteracting the physical symptoms of the illness. That issue alone made the parent message board indispensible. It filled a knowledge gap that our healthcare team didn’t seem to be able to address.

Having help is critical during a health crisis or chronic illness. But even the support of family and friends to cook meals, take a turn sitting with the patient, to lend a shoulder to cry on, doesn’t bring the same comfort as sharing thoughts with someone living the same bad dream. Sharing the experience– even with a stranger online – makes getting through each day (or even each hour) that much easier to accomplish.

Whatever condition is disrupting your life, do a search for online support. It’s there 24/7 and will open your world to all kinds of possibilities for managing, coping, and healing. Most likely the best place to start is the national non-profit dedicated to your circumstances (and every medical condition has one). Click here for a list – and feel free to drop a line to add any we may have missed.

You Can’t Catch Me, I’m the Gingerbread Man…

Holiday baking is a BIG DEAL in our house. We easily go through twenty-plus pounds of flour with the tradition that anyone who steps through our front door leaves with a plate of homemade cookies.

Recently, a friend who is lactose intolerant has inspired a fun project of researching dairy free recipes. It’s interesting to me that many of these recipes have their origins in the Depression or World War II era, when rationing demanded some pretty creative substitutions for butter, milk and cream. I’ll only try recipes that use common, readily available ingredients – no tofu or sunflower butter (whatever that is), thank you very much. So far, every one of those recipes has been a hit for dairy tolerant and intolerant guests.

As fall has turned to winter, I wondered whether any of my traditional Christmas recipes could be adapted to dairy free. Nope, not a chance. The most popular one is an almond cookie that is basically a bowlful of butter, a few eggs, some sugar and the scantest amount of flour to hold the dough together. For most of us, that’s a temporary spike in cholesterol until we hit the treadmill New Year’s Day. For my friend, well I think it could kill her. So back to Google I went, and found a great gingerbread biscotti recipe at allrecipes.com that’s both festive and dairy free.

My husband, also, has to watch his sugar intake and every year for his Christmas-time birthday I bake a carrot cake recipe my mother passed along when we were newlyweds. So I’m sharing these recipes here, along with an invitation to contribute your own stories and recipes you’ve discovered so loved ones with health issues can share in holiday traditions.

Salud!

(ETA: White flour, or half and half of white and whole wheat, can be substituted. Using all white flour gives a more traditional biscottie taste.)

The Gingerbread Biscotti recipe can be found here:
http://allrecipes.com/Recipe/Gingerbread-Biscotti/Detail.aspx

Gingerbread Biscotti

1/3 cup vegetable oil

1 cup white sugar

3 eggs

1/4 cup molasses

2 1/4 cups all-purpose flour

1 cup whole wheat flour

1 tablespoon baking powder

1 1/2 tablespoons ground ginger

3/4 tablespoon ground cinnamon

1/2 tablespoon ground cloves

1/4 teaspoon ground nutmeg

Preheat the oven to 375 degrees F (190 degrees C). Grease a cookie sheet.

In a large bowl, mix together oil, sugar, eggs, and molasses. In another bowl, combine flours, baking powder, ginger, cinnamon, cloves, and nutmeg; mix into egg mixture to form a stiff dough.

Divide dough in half, and shape each half into a roll the length of the cookie. Place rolls on cookie sheet, and pat down to flatten the dough to 1/2 inch thickness.

Bake in preheated oven for 25 minutes. Remove from oven, and set aside to cool.

When cool enough to touch, cut into 1/2 inch thick diagonal slices. Place sliced biscotti on cookie sheet, and bake an additional 5 to 7 minutes on each side, or until toasted and crispy.

Festive Carrot Cake

2 cups flour 

2 Tbsp. vanilla

1 tsp. salt 

¾ cup frozen apple juice concentrate, unsweetened, thawed

2 tsp. baking soda 

3 cups grated carrots

3 tsp. cinnamon 

1 cup raisins

4 eggs 

1 cup walnuts

1 cup oil

Stir together flour, salt, baking soda and cinnamon. Beat the eggs, add oil and vanilla. Stir egg mixture into dry ingredients, add apple juice concentrate. Fold in carrots, raisins and ½ cup walnuts. Spray 8 ½ x 11 pan with baking spray. Pour batter in pan and top with balance of walnuts. Bake at 325° for 45 minutes or until cake tests done.

Let's Play Word Association: “Healthcare”

You know what pops into my head if someone says “healthcare?” A smell. That antiseptic scent somewhere between rubbing alcohol and Lysol. I might see in my mind’s eye a shiny hospital floor or imagine the crinkly sound of exam table paper.

But this week in an e-newsletter all about healthcare, I came across a different take on what the term should mean. It involves church. An Episcopal church in northern New Jersey has started offering an “All God’s Children” service on the first and third Sunday of each month. The service is geared toward kids with disabilities, particularly autistic youngsters, those with varying degrees of attention deficit and also pervasive development disorders. It must feel like a miracle to parents of special needs kids looking for some help to feed their children’s souls.

Yes, there’s no doubt in my mind – this church is offering healthcare. Managing an illness or chronic condition can be an exhausting, 24/7 job. And I think especially if it’s a parent managing a child’s condition, there’s often little room for anything social or spiritual. Through the worst of it, even emotions get set aside while mom or dad manages a crisis on autopilot. (How unhealthy is that!) This church is offering families balance in their lives and holistic care. It can’t help but improve outcomes to pray and be embraced by welcoming church volunteers and, just for a short time on a Sunday morning, step away from the constancy of life with special needs.

What I really like is the church’s webpage for this special service. It’s children’s-church-in-a-box for any religious organization that would like to replicate the idea. There’s a full description, video clips of a service, and links to media stories about their novel idea. Anyone can download their 18-page operations manual (page 7- suggested gluten-free snacks; page 13 instructions for Joyful Noise volunteer - “…speak loudly into the microphone, as the kids will likely make noise throughout this segment. Repetition, call-and-response, and simple mimicked movements work well;” page 15- one adult in the Prayer Room and one at the door at all times. Make sure no child leaves the building without their parent.)

So, does your doctor ask how life in general is going? Does the practice offer a list of resources outside of physical healthcare? Does your own house of worship or school or workplace ask how it can accommodate health concerns and include special needs? If not, suggest they take a look at Christ Episcopal Church of Budd Lake, New Jersey. Now there’s a practitioner of good healthcare (without the antiseptic smell).

My Amazing Eye Transplant

No, of course not really. I've still got 20/40 vision and my new best friend, eyeglasses with progressive lenses. But what's taken me away from blogging these past two months has given me the gift of sight – a way of looking out on the world with new eyes and a new sense of wonderment.

It all started because my family needed help. And much to my surprise, asking for help has transformed my thinking.

If you know my family’s story, you know my son has had a long road dealing with neurological problems. My child has overcome some huge obstacles that made the arrival of his college acceptance letter in the spring a great victory for him. But obstacles still remain for him to be successful once he starts college just a few weeks from now. True to his tenacious nature, he got himself accepted into college and also accepted into a selective transition-to-college summer program for disabled students. Great program, big pricetag.

In searching for resources, I stumbled upon ModestNeeds.org and knew right away this was something special. Folks with one-time needs due to trying circumstances can post applications for very specific situations, and donors contribute directly to stories that strike a personal note. Each application is carefully vetted by the organization, which vouches for its authenticity. I had to work up the nerve to submit our application to Modest Needs. Our family has never asked for financial help. From anyone. Ever.

In the end, 44 people – family, friends and strangers – contributed more than $2,500 so that my son could attend the college transition program at Landmark College in Vermont. He just arrived back home with a huge binder full of practical information on how to navigate college coursework and a fabulous taste of dorm life that’s got him itching to move out of our house, like, yesterday.

As wonderful as the college transition program was, the lasting effect for me will be this lesson: that acts of goodwill and generosity can change the course of our lives and our outlook on life forever. For me it's been a lesson in generosity of spirit. I am just overwhelmed to see how much others value what's so important to our family- that our son gain independence and education to live up to his full potential. Anyone who has dealt with disability or chronic illness knows how easy it is to let expectations slip, because keeping them high sometimes feels like climbing Mt. Everest in lead boots.

Thank you to Modest Needs for this gift of sight (insight, actually) that we will never forget.

Click here to learn more about donating to Modest Needs.

Respect

Just yesterday, my family shared a touching moment while participating in a Memorial Day Service. My son was asked to play Taps, so we all went to hear his melodious tribute. I sat there watching the veterans speak of their friends that never came home. I never met any of these fallen soldiers, but was moved to tears as I watched the flag go up, heard the echoing bell rung after each name was read. It was very somber. Guns were fired as a salute to these men and their families and then Taps was played and echoed through the trees. I looked at the crowd, most were men in their 80's and their families, some holding back tears and others with red, wet eyes. There were only a few young people. Have we, as a culture lost perspective? How many veterans do we care for in our communities, never realizing the sacrifices they made to ensure our freedom? Our elderly population lived through amazing times and many would love to share their memories. I shudder as I remember outlining chapter after chapter for history classes in high school, but sit in utter amazement when hearing the stories from a participant of our great history. If we would only remember to take time and remember that those feeble hands that are crippled held a gun to fight for freedom, held and nurtured a baby, raised a family or built houses. No one will know the stories our elderly can tell us, unless we ask.

A Tribute to Mothers

I recieved an email this week and it reminded me not only of the responsibility and joy of being a mother, but the tremendous amount of respect that I have for my own mother. It is a blessing to see your mother enjoy not only her grandchilden, but her great grandchildren, as well. In our culture,the elderly are not always honored as they should be. Please take time today to honor your mother by telling her you love her and spending time with her. Often times, time is the best gift we can give to our mothers. If your mother has passed away, take time to honor her memory today. Please read this interesting viewpoint of what it is to be a mother as you think about your own.

Somebody said it takes about six weeks to get back
to normal after you've had a baby..... somebody
doesn't know that once you're a mother, 'normal' is history.
* * *
Somebody said you learn how to be a mother by
instinct ... somebody never took a three-year-old shopping.
* * *
Somebody said being a mother is boring....
somebody never rode in a car driven by a teenager with a driver's permit.
Somebody said if you're a'good' mother,
your child will 'turn out good'....
somebody thinks a child comes with directions and a guarantee.
* * *
Somebody said you don't need an education to be a mother....
somebody never helped a fourth grader with his math.
* * *
Somebody said you can't love the second child as
much as you love the first ....
somebody doesn't have two children.
* * *
Somebody said the hardest part of being a mother
is labor and delivery....
somebody never watched her 'baby' get on the bus
for the first day of kindergarten ...
or on a plane headed for military 'boot camp.'
* * *
Somebody said a mother can stop worrying after her
child gets married....somebody doesn't know that
marriage adds a new son or daughter-in-law to a
mother's heartstrings.
* * *
Somebody said a mother's job is done when
her last child leaves home.....
somebody never had grandchildren.
* * *
Somebody said your mother knows you love her, so
you don't need to tell her....
somebody isn't a mother.

Coping With Dementia

Two days in a row now, I’ve come across information on managing Alzheimer’s disease that taps into a couple connections wired deep in the brain: our capacity for words and our capacity for music.

First was a New York Times news item about author Lydia Burdick, who has written a simple book full of colorful pictures and large type specifically for memory-impaired adults. “The Sunshine On My Face” is one of three books she produced while caring for her mother who has advanced dementia. For a little while, at least, the connection between mother and daughter that had been slowly fading away opened back up when the two women shared story books.

The second reference popped up in a Philadelphia Inquirer article about the popularity of a capella singing among medical students who need a creative outlet to balance the rigors of their studies. The University of Pennsylvania’s UltraSounds (every one of these choirs, apparently, can’t resist a medical pun when it comes to choosing a name) brought nurses to tears at one adult day center when heretofore mute residents began singing along with “Silent Night” during a Christmas performance.

Right now, I don’t have an Alzheimer’s patient in my life. But these news items brought back that rush of primal love and connectedness I felt when I used to sing lullabies to my babies or cuddle them in my lap for a story. Life does indeed come full circle. And if a book or a song can bring a moment of connectedness and a bit of relief from the pain of caring for a parent who may not remember you anymore, God bless author Lydia Burdick and the singing of The Ultrasounds, The Doctor's Note and the The Transplantations for the joy they spread.