family

Because I Could

Most things that I have done lately are because I’ve had to. I chose the venue for Carl’s thirteenth birthday party based on seating options. This local arcade/laser tag/mini-golf establishment boasts a multitude of plush reclining couches for parents with bad backs. Being the only driver before my surgery meant I chose Carl’s birthday based on what I could physically manage.

I literally finished the entire signature project for my school semester ahead of time. I took quizzes, study guides, and completed that big project well before the due dates. Because I had to, otherwise my grad-school work would be clouded with a post-surgery haze of pain medication.

On that same note I wrote out a comprehensive list of all the medications Carl takes, their doses, their purposes, and the doctors’ info. I pre-filled the next weekly container of his pill case just to be sure.

I arranged casseroles of food for after my surgery. I had to do this because things would be so busy that no one might have time to cook and I had to feed my family. There was also the (slim) possibility that for whatever reason I might not make it and then everyone would need comfort food.

I had awkward conversations with Luke about how if something happened to me I’d want him to move on and find happiness at some point. I wanted him to know how  fulfilled he’d made my life. I had to say all of this just in case. I also had to remind him where to find the information about my life insurance policy.

I gave my children the best few days I could on the off chance that they’d be the last. I left some “in case” notes behind so they’d know how amazing and great they were. If they lost another mom they really needed to know it wasn’t anything to do with them. I just had to do it.

When it came to my own parents I was at a loss for what I had to do. I wanted to make sure they had a good trip right before my surgery (planned long before.) I wouldn’t let them change any travel plans. They deserved enjoyment away from all of the chaos and drama that surrounds my family of herded chickens!

I made sure to leave my mom what must have been a weirdly sappy message about how great she’s been to me. Everyone loves their mom, but before becoming a foster parent I never realized how MUCH I had to appreciate.

The last thing I had to do was send Marcus an oddly sappy message. I usually avoid communicating too much positive emotion to him, so as not to make him uncomfortable.   Our communication has been off and on since he last moved out. But just on the off-chance I didn’t make it I sent him what, in hindsight, must have been cryptic. It read:

“Hi honey, No matter what happens I want you to know that I love you forever no matter what. I am so lucky that I got to be your mom (one of them.)”

To my surprise he replied that he loved me and he wanted to do something to help us. Sometimes it really surprises me how much Marcus has learned about family. Although he didn’t realize I’d be in the hospital for at least a night, he showed up at the house that day. I did have a wonderfully happy morphine-laced phone conversation with him that  I can’t remember at all. But at least I spoke to my son.

I did all of this because I had to. Everything changed when I woke up from the procedure.  I hugged my husband and my family close, albeit in a highly gentle way, because I could. I drank a much-needed cup of coffee, because I could. I wrote a blog post, that largely made no sense, because I could.

I hope that each day I have now counts as one I could do something great with.

**Names have been changed to protect the privacy of those involved.

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I made it!

I made it! It’s over! The surgery was a success. I’m so very lucky. I didn’t even come out as a zombie!!

I’m most grateful that’s my family was here for me. Marcus even came to the house. He made food.

Thank you to my mom and dad for saluting back Thanks to my wonderful hubby and a good friend today. I am truly blessed.

I also got to give my autograph to Ronda if staff. I am famous now. 🎺

I’m also on lots of meds so pls forgive typos and crazy talk !! 😂

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Wherein I Support My Own Rock and ALMOST Murder a Nurse

I have honestly never seen my husband this way before and it is terrifying, After an 11 hour day at the hospital today I was finally able to bring Luke home. His vision will completely recover but for now he cannot see anything. I am told black-and-white will come back before color does.

When I was finally allowed into the recovery area I almost didn’t recognize him. I’ve been with this man for over a decade, through more than one surgery, and I have never seen him like this. He was huddled in the hospital bed, shaking. Normally I find this guy joking with the hospital staff and giving nurses advice on finding a good vein in someone’s hand.

The scenario today was nothing like that. One eye was bandaged up and he was silently crying with tears streaming down his cheeks. “I just really need you,” he said. “I’m scared.”

My heart seized up and skipped a beat. I can tell you that Luke has cried maybe three times in span of eleven years. It’s just not his way. He doesn’t scare easily. He’s not an anxious person and he is most certainly not rattled by medical procedures. He’s fascinated by them. He wants all the gory medical details because he’s a paramedic and they go nuts over that stuff.

He’s my strength, my steadfast place to land. Luke is my rock. Today I needed to return the favor.

The nurse at the station was complaining loudly about protocols, the wrong IV bags, and the crazy day she was having. She quite clearly would not answer the patients trying to get her attention. After a few minutes of me cradling my whimpering husband she came over and scolded me, “Well you snuck over here! I didn’t see you come in!!”

The rest of the conversation did not go so well. If I can give any advice to people dealing with me it would be DO NOT MESS WITH MY FAMILY!!!! And if you’ve ever seen a family member in pain you may understand the instant flood of rage that filled me with, “I-will-hurt-whoever-caused-this!!!!”

Me: Hi. Umm..he is not doing well. What’s going on?

Inside my head I said: Why the hell did you make my husband cry? He NEVER cries. He is the strong one!

Nurse: He’s fine! His vitals are OK.

Me: (looking dubiously at Luke’s shaking form) No, he’s not looking so great. I think you need to give him some pain medicine.

Nurse: Well he just had surgery. He’s fine. I don’t know what you expect. We already gave him medicine. He has to go home.

Me: Yes he needs to come home. What medication has he had?

Nurse: (rolls eyes) A lot. (Walks away)

Needless to say I did some shaking myself but more of the rage variety. Eventually I realized that he couldn’t see out of either eye and it was scary. He was also in a great deal of pain.

After a few deep breathes I re-approached Nurse Ratchet again and said in my assertive teacher voice, “I have questions. You will answer them like a nurse in your profession should do. I am asking what medications my husband has been given. Go ahead and get a chart if you need to but you will tell me specifically what he has been given.” Then I turned on my heal and went back to Luke where I sat pointedly looking at her with one eyebrow cocked.

She was able to manage her job after that. I got the information I needed. Apparently she was angry with Luke because he had been nauseous for hours. She said that his dry heaving was, “too loud,” and it “disturbed the other patients!”

While I was taking care of Luke, my parents were taking care of Carl. My mom got him to football practice and back again. The great thing about having my parents is that they were able to put together Luke’s special “face down” chair and help with Carl. They also make me feel calm and happy. The bad part would be that Carl was reading my mom’s text messages to her while she drive. He just so happened to the text I sent saying, “This nurse is a raging b**ch!”

I’ve never been happier to get out of a hospital, including after my own back surgeries.

**Names have been changed to protect the privacy of those involved.

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When it Rains it- it’s a Freakin’ Hurricane!

I just can’t win for trying around here. Everything was all planned out for my back surgery at the end of this month. We had support for the kids, Luke was ready to cover all of the Mary visits and the driving. We were ALL SET. That’s when the figurative torrential downpour started.

I am looking at my life today thinking…what happened?!??

A few weeks ago Luke mentioned he needed to see the eye doctor. He wanted to wait for my employer to deposit their contribution into our HSA. Yesterday morning he woke up and couldn’t see out of his left eye. He can’t make anything out at all unless he is using peripheral vision with that eye. Our optometrist opened her office up just for him (thank goodness) even though it was her vacation.

After examining him she showed us a picture of an alarming amount of fluid build up behind his left retina and a possible tear. She called a surgeon and we left her office to go straight there! I called my parents to be there when Carl got off the bus, and possibly through his in-home counseling appointment.

As it turns out Luke needs ASAP eye surgery in two days but his vision should come back. However, he has to be out of work for 3-4 weeks and during that entire time he is supposed to be lying face down.

???!!!???#@#?!

I’m ashamed to admit that I cried about it. I didn’t cry for my poor blind husband, like a good wife. I cried because I was afraid he wouldn’t be there for my surgery when I woke up. I need him. Luke is my touchstone when I am scared. My parents will be traveling out-of-state until after my surgery. I mean I really really really need him!

I cried because I didn’t know who would visit Mary at RTC. If Luke can’t go then she’s left to feel abandoned by yet another set of parents. I cried because I didn’t know who would manage the cooking and the cleaning. We were going to hire someone but not if Luke isn’t collecting salary for a month! Was I going to have to run Carl’s 13th birthday party alone? All by myself????

There is a small-hearted, selfish part of me that is looking out for my own interests. I was so wrapped up in panic, I forgot that a decent human being would care about her husband. Instead, I was mad he didn’t schedule the eye appointment earlier. After all, emergencies are supposed to fit into my meticulously calculated schedule! Detours from the plan are not allowed!!

Today I woke up with a new outlook. I’m ready to do some planning. I’ll try to pre-prepare a bunch of meals we can just re-heat while Luke and I are recovering. I called friends and arranged rides and child care. Luke is going to the hospital with me. He wants to remain there, face down, for the duration of my surgery. I won’t be alone. My parents are going to visit Yary in our absence. With Nana and Papa she won’t be alone.

Today I want to be more empathetic. Today I’d like to type with fewer exclamation points needed. Today I want to be sweet and loving to my poor broken spouse. Today I am going to try to be more like Luke.

**Names have been changed to protect the privacy of those involved.

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I Have a Screw Loose…Literally

I met with my neurosurgeon yesterday. It’s been a year since my spinal fusion and I am still having some pain and difficulty. I had a functional capacity assessment (FCE) done and a CT scan to look at my spine.

The FCE came back with “valid” results (apparently this is good? Maybe some people try to fake these? They are hard to read? I have no clue) so everyone was pleased. It basically showed that I can work at a sedentary job for 8 hours a day but no lifting over 30 pounds. There is weakness in my right side. It recommended I don’t walk or stand for too long and don’t waist-lift heavy things. It’s sort of a permanent thing. This is where I am at. Period.

The CT scan showed that I have an actual screw loose in my spine. It has an amount of “micro-movement” that bumps into nerves and throws my pelvis alignment off to compensate. My spine is starting to curve a bit to make up for it. The fusion has not completely fused and could use some more bone material. Another screw may be needed to stabilize my SI joint. The doctor recommended a revision. Normally time to heal, Physical Therapy, and pain management injections help quality of life. I’ve done all of those things. A LOT. So…

We know a bit more about my genetic condition that creates extra scar tissue and my bones ability to fuse. There are special tools, screws and some kind of dip that can be used. This will help to promote bone growth and minimize scarring. I have a lot to think about.

I am going to go back full-time to work next week. I guess I will see how my body responds to the added activity. At 36 I really don’t want to be this way forever. I can function with chronic pain and limitations. But do I have to?

I am leaning towards the revision surgery. Hard. Since Mary just started her new RTC there is a very good chance she will be there for a year. I will need a year to recover just like this past one. I wonder if it will be easier for me if I’m not worried about my physical safety and her mental state at all times. Could my healing process be a bit smoother?

How would this affect our children? Will it trigger Marcus, who just came home? Will it throw off Carl? How much stress and extra work will this cause Luke? And Mary…well, you can read about how is affected her here. It gets so complicated.

When I think of the long run I wonder how much my inability to do things affects them all now. I’m too tired. My back is too sore. I can’t walk for that long. It’s too much to go to lunch with my mom sometimes (booths care painful to sit in.) I need to take a muscle relaxer to sit through Carl’s band concert. We can’t take a long trip. I wouldn’t make it walking in the streets of New York City, the trip I have promised for over a year. I have to lie down on the heating pad…all evening.

The way things are now could be forever. It is unlikely that I will improve much from here. Unless we fix the problem. Luke supports the surgery. I think I want it. I am just not sure. The decisions are huge. Again, I would ask my reader to please wish us luck. And if you’re the praying kind then it can’t hurt to pray as I consider this huge decision. What’s next?

**Names have been changed to protect the privacy of those involved.

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Thank Hospital Vacation?

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I must be the weirdest mom ever to think that my major spinal surgery seems like a vacation. Trust me, a little fusion surgery was nothing compared to the chaos Mary was experiencing at home.  I had some complications, and needed a cat scan. They found one of my vertebrae was actually fractured. I sobbed in pain while they gave me every narcotic pain killer intravenously they could. Finally strong muscle relaxants were administered and I calmed down. I clutch Luke the entire time while he whispered soothing things into my hair and stroked my arm. Vacation, right?

I had trouble breathing so I went to the ICU for a day. I had an oxygen tank sort of plugged into my nose in order to help me continue breathing. Vacation, right?

I am in constant, excruciating pain. However, my meals are brought to me, and my daughter Mary isn’t attacking me here. There is significantly less screaming here than Mary is doing at home. I feel deep pain at the incision sight where the doctors cut so deeply into my spine. It doesn’t matter.  I’m safe and safe feels good. Yes, even with the deep and unrelenting pain, this might be a vacation.

Everyone smiles at me and offers to bring me things at the hospital. They help me use my walker (really hard for me to walk right now.) I get to order my meals from a menu. No one yells at me. No one is throwing things. And I haven’t seen one tantrum since I’ve been here. Not even from the patients! This MUST be some form of vacation.

The truth is I’m doing very poorly. The Physical Therapist came to see me and opened with,”I’m not trying to be mean” before helping me to a chair. That is where she wanted me to try and sit for an hour. I couldn’t do it.

The pain was so unbearable that I clutched the chair arm and  sobbed for a half an hour straight. I had an ice pack. I tried the PTSD calming strategies we use with Mary. I grounded myself by what I could see and hear. I sipped water and counted my breaths, trying to breathe in and out slowly. I tapped my fingers in a method I learned at a trauma workshop. I tried to picture the happy place I keep in my mind. I counted to 100 and back. I asked for a stress ball, in between giant, hiccuping sobs. There was mucus everywhere. Tears soaked my hospital gown I just couldn’t stop sobbing. .

“Stop crying,” they kept telling me, “You’ll hyperventilate.” 

“I’m trying!” I gasped, “I’m using my coping skills!”

Did it work? No. They ended up peeling me out of the chair after 30 hysterical minutes. I even had them close the sliding doors so I couldn’t disturb the other her ICU patients. I wanted to be so strong and finish the full hour sitting in a chair. I wanted to stop my sobbing hyperventilation and soldier through. I wanted to be in charge of my own body! But I was basically locked into an adult form of out-of-control behavior. I didn’t yell or throw things. I was very polite when I could get a word out. “Please,” I’d say, “I’m trying!”

I just couldn’t do it. They put me back in bed and administered strong pain medication and  more ice packs. My doctor was baffled. She didn’t know why it hurt so much but she was very concerned that I was adamant to keep going.

My doctor and the PT were concerned with my pain. I wasn’t. Here’s why: my pain is physical. When Mary sobs uncontrollably, tantrums, or panics, her pain is emotional. We can’t administer more pain medication and send her back to bed.

Her trauma is as real as my surgery. Her emotional pain is as real as my physical pain. I’ve made it home now and all I can do is be grateful. That was the absolute worst vacation ever.

**Names have been changed to protect the privacy of those involved.

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Contingency Plan: In Case I Don’t Make It

The back brace Mary decorated for me

Anyone who reads my blog knows that our daughter, Mary, has been inpatient at the psychiatric hospital for almost 2 weeks now. It’s her second stint since right before Christmas. It’s been terribly hard on all of us. Children with attachment issues need to be close to their caregivers. Mothers of any kind need to be near their children.

In this case, safety is paramount in all of our decisions. I have a serious spinal injury, . Therefore I cannot physically assist in any way, if Mary has a dangerous dissociative episode. She hasn’t had one in almost 2 years until now. Just our luck that it happens when I’m at my most vulnerable, physically.

They’ve been titrating a new medication for her. We aren’t sure yet if it’s at a therapeutic level. Her emotions are still all over the place. She fluctuates from one minute to the next. She is angry, then giggly, then despondent within 10 minutes. She’s had several physical outbursts on the unit. She’s been defiant towards staff, throwing things at them. During one incident, she pounded on the window of her door, trying to break it. Too bad we don’t have unbreakable plexiglass on our windows at home.

No, she isn’t “there” yet. She isn’t at that place that keeps her safe enough to access all of the therapies and interventions we have in place for her. No amount of TBRI parenting, PHP treatment, TF-CBT therapy, coping skills, or sensory diet can help her until her brain is in a place to process it. The medication helps her brain to get there.

I need a contingency plan. I admit, I plan for all scenarios as much as possible. It helps me to feel productive and in control. Frankly, there are some things entirely beyond my control. But I’ll probably never accept that. At least, not in this lifetime (I swear, I’ve tried!)

My spinal fusion surgery takes place this Tuesday. We are taking our girl home from the hospital on Monday. We will have a meeting to hear the results of the full psychological evaluation they gave her. Maybe we will gain some insight. Maybe not. Either way, she comes home with us.

We have to take her home because I need all of my chickens together on Monday night. We’ve planned a “Pajama Party” where we all pile onto the king-sized bed in our matching Jammies (lame, I know!) and have popcorn.

The next day is my surgery. This is a big long, serious operation. I can face anything if I’ve had my family with me. I’m one tough Mama so I feel like it will turn out just fine. But if it doesn’t? I’ve had that one last family night.

When I was little, my mom used to read to me all the time. Even a series of books called “Sweet Valley  High,” which she hated yet read anyway. My mom has probably made me macaroni and cheese thousands of times. She’s tucked me in, kissed my boo-boos, and generally made things better for me my whole life. She’s taught (or tried) to teach me good lady-like manners my whole life.

I’m not the best student but she loves me anyway (remember my zombie centerpiece at Christmas dinner, mom?) She has perfect hair, perfect make-up, and a perfectly dirty joke when you least expect it. My mom could give Emily Post, Lauren Bacall, and Elizabeth Taylor a run for their money. In the same breathe she can out-do Chris Rock for shockingly funny dry wit. And she’s mine. I’ve gotten to have her for my entire 35 years on this earth. Lucky me.

Mary hasn’t had me since infancy, so I’m making up for lost time. By my calculation, I still have dozens of horrible books from a predictably plotted children’s series to read to her. I have thousands more mac and cheese meals to go. And let’s face it, I’ll probably never have the center-piece thing down. But still. Mary is owed the full mommy experience. The kind I got to have. The kind that always makes it better.

My kids need me. They can’t afford to lose another mom. But if the worst should happen, I cannot, I WILL NOT allow Mary to think that it was all somehow her fault.

It like an oncoming storm. Maybe it will hit and maybe it won’t. Maybe my surgery will be a shining success, maybe it won’t. Maybe Mary has to go back inpatient this week, maybe not.

Either way, we are going to batten down the hatches, and ride it out. Together. As a family. Because that is the most important thing I have ever had in this lifetime. My family.

**Names have been changed to protect the privacy of those involved. 

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