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Real

Hi, Family and Friends. It’s been since December 5th that I’ve been able to update, and after a rigorous few days up here at Mary Free Bed in Grand Rapids, I thought I’d give a quick update.

I had a piece of my skull bone behind my ear removed during surgery, and I still have quite . a bit of brain and scalp swelling from that. I still have facial droop. Speech is good, though, and so is swallowing.

I am still really unable to handle visitors, and that is mostly because of the vestibular hearing loss and brain processing. I can’t handle more than a few minutes of talking at a time without severe exhaustion, and I can’t have competing noises. I can’t handle the television or music either.

At my initial arrival to Mary Free Bed, I was still a fall risk. I basically have done nothing independent of a nurse or patient tech until today since prior to surgery. I’ve been working with PT, OT, and ST all week and weekend since my arrival. There were many impairments pre-surgery, actually, that we were not aware were impairments until I started therapy here. What I’ve learned is that for every day one takes of rest prior to surgery, four days of therapy are added to the post surgery regimen!

I worked really hard at PT through the weekend, actually, and today for the first time am able to self ambulate around my room and to do self care. Until Peter is cleared for my safety, which he needs to be up here for, I am not able to walk halls. This would benefit me greatly and benefit my ability to go home, but I also need him to see what I’ve been doing for therapy so we don’t have competing agendas. I will be going home with some assistive devices, but mostly for when I’m running errands or doing PT. I will be doing therapy three times/week once home, and in an outpatient situation. I will be in therapy for at least a year. The surgical recovery is only what is up to 3 months, but brain recovery is going to take much, much longer.

The long and short is this: I’ve worked really hard these last few days, and as a result of that hard work, will get sutures removed on Thursday and will likely be discharged to home on Friday. I still need to keep a low profile for quite a while longer.

We still don’t have a radiation verdict.

The girls were up here last night to visit for the first time since prior to surgery. It was a hard visit. There are lots of “scary” feelings, and concerns. When they left, I was super homesick, though.

I miss my family.

God is good, and I am grateful for everything.

I am grateful to be here.

I’m grateful for healing, even if it is going to take a long time.

In the meantime, we’ve had a new well dug. Hopefully that will be fixed by the time I’m home. I’m uncertain of the communication behind this process. Peter is trying to finish semesters, the kids are doing school. We’re trying to keep a sense of normalcy when nothing is normal. And there are already a ton of appointments to be sorted through all the way through February.

My parents are leaving this weekend.

So that is my “real.”

That is our “real.”

Blessings,

Deb

Update, Entrepreneurship, And A Visit From The Flexi Founder

In his wisdom. my son Andrew said “Mom. Thursday was hard. It was really hard seeing you so impaired. You were so swollen and swelling at we watched into the night on Thursday. Even I had to cry. But don’t delete these photos. On bad days you are going to need them. You will have come so far and you will need to know just how far that is.”
Even though we have one, Lydia is unable to view my “scar” photo. My right ear and neck are very swollen. Today I am very dizzy, having finished both OT and PT, and waiting a bed placement at Mary Free Bed in patient rehab for up to two weeks . This is what is next on my agenda. This is over 40 minutes from my family, and a big sacrifice for everyone. I need to get well. Staff here at Bronson is so good about anticipating my needs, and at home things are “reactive.” Just how much stress the family is all going to be under is significant to me! I need to go rest well where needs are less stressful to the prepared staff.

Yesterday an awesome surprise came in the form of our CEO and flexi founder, John Dorsey. I had had been up many hours in the night very sick, and I had literally been “allowed and encouraged” to sleep. No one at the hospital knew John was coming or the significance of the fact for my family. They would have managed differently if they’d known.

My kids got Entrepreneurship 101 from one of the best on Monday afternoon. They got to eat lunch with John Dorsey, founder of Lilla Rose, and talk the future of the company. That he invested in my family, in my children, in their crisis means so much to me!

Thank you, John! Seeing our situation as a “Unit” and not just me with a difficult thing to overcome means much.

Lydia, John Dorsey, and Andrew

Peter and John Dorsey

So today: A little more healing. Vulnerable, raw, tired, dizzy, loss of some modesty, loss of my “control freakishness”, memory loss. I will count all loss gain in a few weeks.
Preparation for more future. That describes my day.

12/04/2018, 9:30 AM, Post breakfast, post shower where they let me wear real clothes! And using a walker because I’m a Fall Risk…

I’m in a good place!

 

Blessings,

Deb

I Finally Got Angry

A few weeks ago, the weekend of my surprise diagnosis, Anna (10) asked me if I was angry at God. I asked her if she is/was, and she hung her head before admitting that maybe she was just a little. She didn’t understand why this had to happen to her Mommy and her family. No worries. We’ve been talking through this. I told her she is allowed to feel a little angry, God didn’t give her that feeling for no reason, but let’s not stay angry forever. I told her that she had a big support system, and that as long as she was talking her feelings out with us, our pastor, our trusted friends, that through those feelings she would come to grow her faith and maybe understanding of why this is happening. She still is afraid to leave me for long, but she’s asking great questions, reading her Bible, coloring Scripture, and she is talking. This girl asks tons of questions. She always has. Sometimes it’s exhausting! She loves helping me add names to our Thankfulness gratitude basket, and to our cards blessing basket.

To answer Anna’s question directly. No. I’ve not been angry. At all. Surprised is an understatement. I might at times feel frustrated or sad that my plans are derailed, but I do try to keep the focus that God is NOT surprised. His plans are better than mine. Just maybe I needed my plans derailed. That doesn’t mean I have understanding yet either. But no. I’ve not been angry. I have frustrations at some of my physical or cognitive limitations and how long things are taking me now. I have been frustrated that some things that should be easy, like putting on socks, no longer are.

I’m doing them anyway. I just need to build in more time. But, yesterday afternoon, for the first time, I got really angry. I got angry because there are parts of my situation that are just STUPID and so out of my control.

We got up early (for me early is anything before 8 am) to finish prepping for our carpet cleaning. The guys were here by 9 am and I was even showered, dressed, meds taken, and fed! That is a huge accomplishment, so I was feeling great! I finished up some projects for the kids’ doing the Holiday Craft Fair-It’s the Big One in the guest room where the carpets weren’t being cleaned, and Anna was helping me. And by doing projects, I mean….I was sitting. Still.

At some point, I got up to wobble to my bedroom, to admire the clean carpets, the cobwebs were vacuumed away in the corners, furniture got dusted, and noted that my nightstand organization needed a book moved.

Read that again.

A. Small. Book. Needed. To. Be. Moved.

I walked to the corner, slipping past the nightstand to look out our windows since the curtains were moved up out of the way for the carpet guys. I admired the beauty outside. I looked down at my nightstand.

I moved the book.

I moved the book and I fell. I first pitched to the right side, caught myself, tried to rebalance, pitched backwards (this is one of the new symptoms for which I’d called the doctor the day before), tried again to restabilize, and was pitched hard into the corner of the room and window.

That’s how stupid this is.

I wasn’t moving, wasn’t walking too fast. I wasn’t even walking. I was having a Be Still moment, I dared move a book, and I fell.

But you all….I moved a book. That made me angry. I wasn’t lifting. I was not walking too fast or too slow. I was standing properly. I even had my hand on a table to remain steady. I hit my head on the window in trying to catch myself, I wrenched my neck and shoulders. I yelled for my family as I began to pitch out of control. And I fell.

Still. I was still and I fell.

 

This. Is. Stupid.

 

And I got angry.

 

As it turns out, I actually hit my affected side. I initially didn’t think so, but my affected right side of my head and face is numb from the tumor, so I didn’t realize. I iced my head…cried…yelled a little at how stupid and inconsistent this is, and went back to my sitting tasks. Later in the day I went with my children to set up for our weekend show where I’d hoped to at least make a short appearance at a less busy time of the day today . The jury is still out as to when that will happen. I didn’t fall during set up and I was even able to help a little. Our booth space is pretty! But I won’t go if I’m a danger to anyone. Safety is really important to me. (In September before we knew what this was, I was at an event where I did trample a small child. And the child got in trouble for “getting in my way.” But none of us knew that it was really me being so imbalanced. That cannot happen again.

Booth 29 in the Main Room of the Kalamazoo Expo Center. It’s the Holiday Craft Show: It’s The Big One.

There were other annoying and angering Stupid things. My daughter was chewing gum while we set up. That made my head dizzy. In an attempt to tease me, not to hurt me, she said “Mom. That doesn’t even make sense.”

Stupid. I know.

 

She’s right. It makes no sense.

Let’s not drive on the highway, shall we? I feel certain death at any speed over 40 mph. I feel out of control I feel sure we’re going rear end someone. Swerving cars cause me panic.

Stupid. Irrational.

As I cried in my husband’s arms at how STUPID this is, I said….I don’t know if I can do this for two more weeks. Tell me it’s only two more weeks. Wait. It’s Thursday. Now we can officially say “Surgery is less than two weeks away.” I can do anything for less than two weeks, right? Keep telling me: Less than two weeks. And the new normal starts. “

Stupid might not last forever.

But I still got angry.

Blessings,
Deb