The folks who know us best will notice omissions in our book.
There are missing stories.
I see no point in sharing them with our fragile and frazzled audience.
Some are painful while others are pointless.
There are stories of folks doing the wrong thing or nothing.
Why should I shame people for trying to do what they think they can do
or not trying to do what they know they cannot do.
There is so much forgiveness in my heart that I even have some left over for myself.
I am not a doctor, nurse or pharmacist. I am only a mother.
My job was to be there and care.
That’s what I did.
So friends, if you wonder why those events that you witnesssed have been omitted from our memoir, keep in mind…
the point of our book is to help not to harm.
My ‘Other Mothers’ need stories they can learn from.
We want to stand on the edge of the crazy cliff with them,
not shove them over it.
That’s why we are here. To stand together.
Seizure Mama and Rose
This is not my first round at restoring homeostasis.
I have been here numerous times. Camping out at a hospital.
Same circus, different monkey.
Desperately struggling to restore balance to someone I love.
Spoons to the mouth. Ice chips and water. Over and over.
Wash and dry. Cover and uncover. Up and down.
No end in sight. Day and night.
It is my parent this time, not my child.
An old body fights more slowly.
I must keep balance while helping restore his.
I keep telling this to my sister.
Nobody else can go down right now.
Not mama, not you, and not me.
One patient at a time please.
Slow and steady.
Story # 32 ( December 2004)
We went back to our favorite medical complex for a kidney stone recheck about a year after the initial stone was found. At that point, Rose had been off drug 6Z. She had spent months drinking lemonade made from fresh lemons. She had been through various tests for conditions that might have contributed to the stone issue. All tests were normal. The new drug 7Z was not as great as 6Z, but that is a different story. We expected the “all clear” from the urologist after this visit.
Rose and I went back to a room for the ultrasound. Her dad stayed in the waiting area to read and nap. We knew this would take a while. Rose got comfortable on the bed as she was slathered with warm gel. Another spa treatment with a hefty price tag. The technician began rubbing her wand around Rose’s midsection. I watched the gray screen of the monitor. The young lady would rub Rose as she looked at the screen and click on the keypad to take pictures and measurements. Rub and click, rub and click. Pause.
The technician excused herself to us. She returned with her supervisor. The two discussed things on the screen quietly. They asked Rose to roll to a different position. Rub and click. Rub and click. The first young lady left and brought a doctor back with her. There were quiet discussions in front of the screen.
About this time Rose’s sleepy dad appeared in the room with us. Someone had gone out to the waiting room to get him. We knew something was coming. More stones? Really? Making all that lemonade for nothing?
No, it was not a stone. A mass had been found on her ovary during the procedure. The bad news was, it was about the size of a tin can. The good news was it looked hollow and was probably harmless. This is when Rose’s dad and I looked at each other and laughed. Crazy right? The poor child’s parents are laughing like a joke had just been told.
Surgery was scheduled for the coming weeks. Same hospital. We hoped it was a benign mass. We hoped that the surgery would not cause damage to the ovary. There would be a big scar. No matter.
We were once again among other parents with sick children. The other children had conditions that were much more serious than a cyst. We felt blessed to be in a good place to get this taken care of. We would get through this.
Rose’s dad and I took turns staying with Rose. We would see the familiar faces of other parents in the elevators and hallways. We lugged supplies and laundry in rolling baskets and colorful luggage. You could recognize other caregivers by their luggage and tiredness, sleep-deprived sentries silently going about their duties.
Rose saw the surgeon again for a recheck before we could be released. She lay on the examining table as he poked at her incision site. There was some swelling. He opened a new pair of scissors and made a hole in the stitched line in Rose’s abdomen to let the wound drain as Rose watched with fascination. That is the kind of patient she was. Watching and learning. Patient and student all in one.
Seizure Mama speaks to parents:
You do not need to look far to find someone who has more problems than you do. Every time we went into a hospital, we left feeling lucky. Remember this if you feel the need to have a “pity party” with a stranger while in a hospital.
As I was loading Rose’s clothes and games out of the hospital, I rode down in the elevator from the pediatric floor with another mother. She was obviously moving her child out, also. We had passed each other numerous times in the previous days. I looked at her luggage and exclaimed, “Hooray, we both get to go home.” “We are headed to hospice.” was her reply.
I enter this new year with a grateful heart.
We almost lost my daddy several times over the holidays.
I found myself begging for more time and more strength.
There is nothing like a night in ICU with someone you love to get your priorities in order.
That was my second time of swabbing a mouth with a sponge while bargaining with God.
I am sharing this because I know you get it.
If someone you love has epilepsy, you know fear.
I am so grateful that my daddy made it through surgery and is on the slow road back.
We have been given more time together. There is no greater gift.
I plan on making it count.
Life is precious. Love is precious. Time is precious.
Seizure Mama/ Flower Roberts
Story #30 (November 2003)
Kidney stones in a ten-year-old girl are quite unusual, but this was an unusual girl. The kidney stone that blocked Rose’s ureter was surgically removed. The other was later pulverized by lithotripsy. Rose was sent to yet another specialist in another city. This urologist happened to be at the medical complex where Rose was now a regular as an epilepsy patient. We joked that she was like the character “Norm” in the sitcom Cheers when she arrived, “Everybody knows her name.” Our little sickly celebrity.
Rose’s trips to the specialist included bringing a jug of urine which had been collected with the help of a big “plastic hat” in the toilet. The jug was kept in the refrigerator. Urine in the refrigerator, hats in the bathroom-ours was not a usual home.
The chemical content of the removed stones would give us some indication of what might be causing them. We later would learn that the culprit was our latest beloved drug 6Z. We wanted to keep Rose on this drug because it was actually working. Could we keep the drug, despite its causing the stones?
The urologist’s response to that question was that we would end up “shoveling sand against the tide.” He described the stint that had been removed after her kidney stone surgery as being completely encrusted with crystals. The stones were definitely a side effect of her medication. Seizures or stones. Those were our choices.
Now that we knew the cause of the kidney stones, we had to go back to her new neurologist to pick out a new epilepsy medication. Rose was weaned down on drug 6Z and drug 7Z was added to her daily cocktail. Would this new drug control her seizures? Would it bring new side effects? We never dreamed what would happen next. We were getting used to expecting the unexpected, but even I got blown away by this next event.
Seizure Mama speaks to parents:
We were way out of our league by this point. I knew nothing about kidney stones. I did not understand how an anti-epilepsy drug could cause them. It has taken me years of reading to know what I know, which is still very little. Drugs contain the compounds that perform certain functions and other parts that are in the mix for other reasons. I think of them as dirty drugs. The part that stops the seizures is the good part. The part that causes the side effects is the dirty part. You can keep asking questions of the specialists, but you probably won’t understand the answers. Do not get frustrated with them or yourself. Sometimes you just have to trust these folks that have spent years studying something that has just appeared on your radar.
Rose is home. Let the holidays begin!