For Mother's Day

A bit late, but still apropos, I found something to share with you, by someone who says it better than I can. I found myself in it *, and so might you.

You may want to keep tissues handy while you read.

To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds.

We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.

Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs.Some of our children ungergo chemotherapy.Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. Weknow "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them.

Without formal education, we could become board certified in neurology, endocrinology, and physiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish.

We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy.

We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.

We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing.

Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes.

We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Here is a link to the post where I found it on Janis' blog, and a link to the original source. Go read. There's more inspiration to be found there, too.

*"Without formal education, we could become board certified in neurology, endocrinology, and physiatry."
Yes, this. In particular, I can recall being asked where I took my medical studies. The first time I was asked, I replied that I was not a medical professional. Other times I replied the library, books, the internet. Simply being Margret's mother was an education.

Simply being the mother of a special needs child is an education. Sometimes we can turn the tables and educate the doctors,

Grief Support Group

I joined a Grief Support Group.

... and found myself surrounded by people who totally get it.

Which is not at all strange, as each of them has someone very dear to them who is not sharing this life of ours any more.

Each of us has chances to tell our story, and to talk about our dear one. We are encouraged to talk about what we are feeling, share "ah-HA!" moments, and tell how hard the holidays, and anniversaries, were, and what changes or accommodations our friends and family have made.

At the last meeting in each series, the group members bring photos of their dear one, and pass the photos around the circle while we talk.

In addition to pictures, I brought an audio snippet of Margret's voice, and her giggle.
Here, I'll let you listen, too. Clicky

That photo of Margret and Santa?

The photo of Margret and Santa in the post below was from the year she wanted to give photos to friends and family for Christmas presents. She insisted that she didn't want Fred (what she called her portable oxygen setup) in the picture. It made Santa very nervous. Even though I assured him (and the camera gal) that her doctor had okayed 15 minutes off the oxygen, he kept reminding the camera gal that she needed to hurry.

It was a long line, a long wait, and I was more concerned whether her tank was going to run out before we got home. It did run out, on our way to the mall door. I had her wait at the door while I got the car. She climbed in, and settled down to relax on the way home. She was very happy with her photos, and not at all worried about her oxygen running out.

When we got home, I hooked her up to another tank, and had her sit in the car for a few minutes to let her oxygen saturation rise before she came in. She was fine. She was happy, and the happy was what was important that day.

Thanksgiving and Cranberry Relish

Thanksgiving this year was not nearly as hard for me as last year was.

I even made the cranberry-orange relish that my girls remembered from when they were growing up. One of them asked if I would make it, and I did. I use a meat grinder to chop the cranberries and oranges, and she asked if she could have the grinder. I said "Sure!"

To make my relish, you need:
3 12 oz bags of fresh cranberries
2 medium navel oranges
1 cup of sugar (possibly a little more sugar if the berries and oranges are very very tart)
a bowl large enough to hold all the berries and oranges, a saucer and a wooden spoon
1 slice of bread (for pushing out the rest of the oranges from the grinder)

Wash and quarter the oranges
Wash the cranberries; pick out and discard stems, leaves and mushy berries

Run the cranberries through the grinder, alternating with orange quarters, and making sure the friskier berries don't jump out.
As the grinder stops producing ground fruit, put the slice of bread into the grinder.
When bread appears at the grinder plate, remove the bowl, and place the saucer to catch the bread.
Clean the grinder, dry and put away.

Add the sugar to the bowl of cranberry orange stuff, and mix thoroughly with a wooden spoon (or equivalent).

Let the relish sit overnight to blend the tastes.

...

And the lovely lady who made the large blue tag with Margret for me, well, she made one especially for this Christmas, and here it is:

October can be the Cruelest Month

Yes, Margret's birthday was in July, and the anniversary of her passing is also in July. July was cruel all on its own.

October is the month Margret and I packed our clothes, our supplies and our courage and set out on a road trip half way across the USA. This year was supposed to have another road trip across the country to visit Margret's little sister and her family.

I have been mourning the loss of the road trip. I have my memories of the previous ones, but those memories don't help much right now. I remember, cherish, and still miss, all the little details of our travels together:
the companionable silences
the friendly chatter about anything, everything and nothing at all when we discussed and solved the problems of the universe in general and our little bit of it in particular
"Is it time for dinner yet?"
her desire to eat healthy, but still to eat what she wanted
requests for unscheduled pit stops
her delight to meet and chat with my leathercraft friends at the IFOLG show in Butler
her patience with me when I missed an off ramp and got us headed in the wrong direction just outside Chicago
how thrilled she was to hug, play and talk with her niece and nephews
shopping with her sister
how the route home seemed longer than the outbound route

Not Done with Tears

I had thought I'd be mostly done with tears by now. It is, after all, more than a year since Margret died. But no. I have moments when some small thing brings the tears welling in my eyes.

I've signed up for a grief support group. First meeting is tomorrow.

That's no Revelation!

It's no revelation that Margret had extremely good care and good medical support in the years after her diagnosis with pulmonary hypertension.

There's a new doctor in my family group, and I met her on Thursday. After we discussed my knee, and what to do about it (an x-ray which showed nothing amiss and a visit to the orthopedic doc next week) I said, "it's a shame you didn't get to meet my daughter Margret." She said, "I'll get to see her next time," and I had to stop her and explain that Margret died last year. Then I explained about the heart defect, and the pulmonary hypertension.

What put me in such a mood that I had to mention Margret? I was sitting in the Mom chair, gazing out the window over the exam table where Margret would sit, and thinking how she sat there every three months, waiting to see her doctor, chattering about something fun, and expecting a good report. I thought about the times she sat there feeling less than perfectly well, and how she sometimes thought I was overcautious. It made me sad to think we'll never be doing either again.

On my way out, I stopped at the nurses' station to get my ortho appointment, and the lady helping me was the same one (named after a lovely purple flower - I shall call her P, for Petunia, which isn't her flower but does come in a lovely purple) who handles referrals. I thanked her for the extra miles she'd gone to make sure Margret had all her referrals when she needed them, and for the time she'd sent one that vanished, and had to be sent again on the instant while we were waiting in that particular doctor's office to be seen.

"That's what we're here for," she said, and she remembered the mysterious vanishing referral. "I still have no idea where it went."

We chatted about Margret, and another doctor dropping papers off at the station said, "You're talking about Margret, aren't you? Everybody loved Margret."

I told him I very much appreciated the uniformly good care Margret got from the group.

He asked how old she was when she died; he said thirty seven was a very good age for someone with her unrepaired heart defect. He said, "she had very good care, and not just here."

The new doctor stepping up with her next paperwork heard, and added that she had cared for a number of patients with similar problems who had died in their late twenties; that Margret had done very well.

Margret had the best care that I could arrange, balanced with something like a normal life. Perhaps she would not have caught that awful bug if I had kept her in a bubble, kept her away from other people, kept her out of places with sniffling, sneezing human beings, but what fun would that have been? Margret lived for interaction with her friends. She loved to meet new people. She loved eating out, and she loved when we traveled.

A lot of things come down to luck, I suppose, and that bug she caught was one of them. Her good care was not luck, neither was how much she was loved. That was us loving her back for how loving she was. That was us doing our best to see that she had a long and happy life.

You did a great job, kiddo.