Category: Uncategorized

My Heart is Still in Winter

There is a cost for the journey through a child’s chronic condition.

A toll is taken not just from the child, but also from those who care for her/him.

We all know about the financial costs and the toll on time.

But there are other concessions; imbalances in relationships, loss of trust, outlooks are tarnished, joy is stolen.

What is left after the battle looks nothing like your expectations of future, family and friends.

Maybe the battle is over for us. Maybe the hole in Rose’s heart was the cause of the seizures. Maybe the epilepsy is gone as I always dreamed.

The cost of this journey was steep. We are worrisome, skittish and weary. We all need to heal, not just Rose.

This is my warning to you, Other Mother. Do not lose yourself saving your child.

Mama

We are in the follow-up phase of the September stroke and December PFO closure. Rose has seen both her neurologist and her cardiologist. The news is all good so far.

We have one more phase of the journey to go. Rose will be going to our favorite Epilepsy Monitoring Unit next week to tweak her seizure medications. This will be the final leg of this 2022 journey that included totaling her car by running over a boulder at night on a mountain road, a stroke, the flu, a kidney stone and an ovarian cyst. There was a seizure or two, but who’s counting?

I will report the results of the EMU stay when we have them. We have done this before so we know the ropes.

Our family is drinking from the fire hose again. Resilience training at its best/worst.

Don’t you worry folks.

Mama

https://epilepsytalk.com/2022/12/20/40-different-kinds-of-seizures/

https://epilepsytalk.com/2022/12/19/epilepsy-glossary-100-terms-defined-2/

I wish Rose were more like her dad. He never seems to internalize stress. He calmly handles emergencies, while I spin mentally and emotionally.

I call this stressing and obsessing, “getting in the maze.” There is nothing productive about going around and around about something upsetting. I have to consciously avoid going into the “maze” because it is very hard to get out of it.

When I feel my brain go into repeat mode, I shake my head to reset it and get busy doing something physical. I take walks, fold laundry, bake something, rearrange a drawer…any task that involves physical movements will do.

Both my children have the “maze tendency.” I do not know if this is due to nature or nurture. Either way, I do not want to be responsible for this unproductive response to stress. My son fights off this negative response. Rose falls right into it when things get tough and out of her control.

She called from deep inside the “maze” last night. Who can blame her? She is a double/double major and has graduation pending on two very difficult classes. One of these classes has most of its assignment points coming in after Thanksgiving break. Graduation is December 17.

Remember, Rose had a stroke in late September and missed a week of classes. She was emailing her professors from ICU. She has never slacked off.

I tried to talk her out of the “maze” but she was spinning so out-of-control I had to get off the phone and calm myself down. She then called her poor brother for support. He is her rock.

I fear for Rose’s well-being. This is too much stress for anyone. I told her to “face forward with faith”…but I know there will be a lot of fear as well.

If she does not graduate, it will get very complicated. No degree. No dorm room. I do not think these two classes are offered in the spring. I do not want to think about it.

I used to be a hard-ass, by-the-book college biology instructor at a community college. I regret that so much as I watch Rose stressing and suffering. I hope I never caused such pain to my students.

Mama Maze

I am so happy to have this chick under my wing for a bit. She was seriously shaken by her latest calamity. Rose will be on aspirin until the tiny hole in her heart is repaired. Her medical team feels that it will be safe to wait until after graduation (December)to do this out-patient procedure.

Rose had a meltdown with loud venting and crying in the cardiologist’s office. Two nurses swooped in for support. One patted her while the other gave her a pep talk. Nurse Dana told her that worrying is like rocking in a rocking chair. No matter how much you do it, it won’t get you anywhere. Bless these women.

The stress level has dropped in our family. We were all shaken by the stroke and the close calls involved. I suspect that Rose has some residual PTSD from the series of events. She almost refused the tPA!!! She has been going over the episode in her mind, over and over. I told her to write everything down to get it out of her thoughts.

As I write she is getting her hair done. She has seen many friends since she has been home. We will be shopping for shoes and a graduation dress. We will visit my mom in her new location. I want her mind elsewhere as much as possible.

We are trying to avoid the worry circuit. I call this ‘The Maze.’

We are all doing our best. I am grateful for family and friends and especially dedicated medical professionals.

Seizure Mama/Mama Hen/Big Chicken

It is Sunday again. I am home. Rose is back at college. It is like last week never happened. Ian came and went without us. We were busy with our own personal disaster.

Being in the hospital is like time-traveling. Everything else disappears. All your focus is on the problem. All other issues are put away for another day, after the emergency is over. Nothing else matters.

The trouble last Sunday night was not a seizure. It was a stroke. Rose had a stoke in her dorm room. She is 29 years old.

She was transported to the local hospital where she was diagnosed and given the clot-buster, tPA. Then she was transported to a big, wonderful hospital. This is where the hole in her heart was discovered. It has been there since birth(a PFO) but decided to sling a clot through it on Sunday night.

Rose rapidly improved after the tPA. No one could notice anything abnormal except her speech is slower and she has trouble finding words. She has regained all functions on her left side. She is left-handed.

Last week’s schedule was as follows: Sunday= stroke around 8PM. Monday= tests and scans. Tuesday= more tests and scans. Wednesday= plans for future treatments and appointments made with specialists. Thursday= released from hospital, keep Rose with us in hotel and do her laundry. Friday= take things back to college but keep Rose with us as we stay in a different hotel near the school. Saturday= drive home without Rose. REALLY?

Did all this really happen? Was it really just a nightmare? Did I time-travel? I wish this were fiction and it was all a bad dream, but no. It all really happened.

Now, I am home alone, puttering around catching up on laundry and tossing old food from the refrigerator. A week was stolen by a stroke and a clot and a hole in a heart. This will be repaired soon. We feel lucky. Rose had help arrive at every turn. I say they were angels.

Now, we are all supposed to carry on like this trauma did not happen. Her dad is back at work. I am walking around in my “Mama Fog” trying to function.

Rose called today. She talked more slowly. I put my cell phone in my pocket on speaker and folded laundry as she talked.

She says she is keeping a bag packed and ready by her door in case anything else happens. (Like an expectant mother.)

This is who Rose is. A future Emergency and Disaster Management professional prepared for her next, personal emergency.

Proud, Grateful and Lucky Mama