Strategic thinking…

Today is neuter day for Boss, the dog. Poor little guy was so confused this morning. “Why aren’t you feeding me?” He tried to eat the flowers Kevin brought me over the weekend. I had placed them in a vase on our living room corner table. A table that was actually a bedside table for the huge bed and room we had at our last house. We downsized a year ago and life has never been so free of useless crap!!

Anyway, a neuter means a trip to the vet. It’s just Johnny, Mom and Boss. I have been planning my strategy to get out of the house as smoothly as possible since last night. I changed the plan a few times. At the end I did it a completely different way. Which means all that planning, scripting and thinking was a waste of time. Well, that’s how I roll when it comes to thinking.

I put Boss outside so I could prop the front door open without him making a runner. I was just praying John didn’t let him in while I was doing it. He is a slippery one that Boss. With the door propped I can get the push chair, lunch bag and back pack out the door in one pass and into the car. Return, let boss in and get the boys out the door. I have Boss’s leash in one hand and John’s oxygen tank in the other. I use one hand to guide John into the direction of the door while Boss pulls me to the door. It’s a funny scene.

Once at the car I get John in and walk over to get Boss in. He needs to be picked up into the car since I have a high SUV and he’s still too young to jump up. He doesn’t like getting into the car. Probably because the only time he gets in the car is to go to the vet. This trip will definitely be the final straw for him.

On the way into the vet office the strategy is the same but reversed. Johnny and I agreed he was working for 10 water balloons if he behaves in the office. When we arrive to the front door I opened it too soon and caught Boss’s paw. He made a loud dog crying sound at which time John chanted the F word at least 20 times. John does this anytime a dog barks or cries. I waited till John was done chanting before we walked inside. Once inside John was screaming at the dog to get down in a “level 4” voice. Level 2 is normal talking voice, which I encouraged him to use but this seemed useless. I began taking water balloons away, “9 balloons, 8 balloons, 7 balloons…”  With each balloon he decreased his sound level. But, it went right back up as soon as Boss became excited or jumpy. The receptionist at first was a little shocked by the noise but realized john is Autistic. I was so impressed with their acceptance and understanding. The one receptionist immediately put us into a room, hoping it would help John relax a little. In the room he became more anxious and aggravated with Boss’s level of excitement.

Finally, the vet came in to give me the estimate and papers to sign. We were out of there.

At this point, John lost all water balloons so we headed home to wait for bowling at 11am.

On the way out the door of the Vet John said, “Scared”

I asked him “Why were you scared?”

“Dr. Lestrud”

Dr. Lestrud is John’s Pulmonary Doctor. I believe John thought he was going to the doctor for himself.

When we got into the car I sat there for a few minutes trying not to cry. I wanted to cry because the people in the office were so nice. I wanted to cry because John thought he was going to the doctor. I wanted to cry because John didn’t feel safe and I didn’t prepare him for the Vet visit. I wanted to cry because this was just so overwhelming.

I cried because this was what I seen….

John at Vet

You wouldn’t event know how hard the last 15 minutes were by looking at him. He is in the car, safe and content. He knows he is going home where he is safe and happy.

How does a parent prepare their child for the hard world when they can’t get them out into it?

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Keep me posted

This afternoon John has a doctor’s appointment with his pulmonary doctor, Dr. Lestrud. He was been following John for 12 years now, since John was born. Our relationship hasn’t always been sunshine and daisies. We have learned having and keeping a doctor is hard, like any relationship.

Back in the day when John was on the vent, oxygen, feeding tube and 13 medications 3X a day I would call Dr. Lestrud my “bad boyfriend”. I needed him in my life, but I wish I didn’t. He never listened to me and doesn’t call me back until I start crying.

It took a few mistakes and steps back for him to start hearing my suggestions. I vividly remember talking to him on the phone one afternoon crying because John was home sick and not improving. I was upset that it took so long for him to call me back. I was upset that the medication he was using wasn’t helping and that he wouldn’t prescribe a steroid to help him. We talked for about 15 minutes, I stopped crying, he apologized for making me feel unimportant and we agreed on a plan moving forward. Which if I remember correctly worked out well. I rarely cried when I called him but this time I had reached a limit. I believe he knew that and took action to make the situation a little easier for us.

Ironically, his wife, who is his 2nd wife, was a nurse in the pediatric intensive care unit (PICU) and took care of John at some point. They have 4 kids together, he has 4 other kids from his first marriage. I often wondered if he was this apologetic as a husband as he was with me that day. But, that would be getting too personal with the doctor.

I’m not saying I was always right. He needed to trust me so he can treat my son and I needed to trust him. There is a balance between what is medically right and what I want. Conversations need to be had, respectfully. I don’t know what medications he needs. But, Dr. Lestrud doesn’t know either unless I can articulate what is happening to John in medical terms, with less emotions. Mom’s with chronically ill kids get a crash course in medical jargon and pick it up quickly.

Over the years I have learned to take the emotion out of my communications. It’s not always easy and I didn’t always do it well. But, I did learn that when I can articulate our needs without crying, name calling or being passive aggressive we get better results. This applies in advocating for education, medical and social needs.

When John first came home from the hospital he was going to at least 5 appointments a month. Every appointment I thought there was going to be some great revelation or milestone. Most cases I was disappointed. Most appointments were the usual nurse’s check in (weigh, temp and blood pressure), sit in the room for almost an hour because they over book, see the doctor for 15 minutes and schedule the next appointment for 3-6 months later.  Eventually we were told to come back in 6 months and that seemed like a milestone. 6month!!! You mean not 3 months???  Yeah!!

Today, we are going to see Dr. Lestrud after 3 months to talk about his oxygen needs. I still think something amazing will come out of this, but deep down the little committee in my head is saying “STOP IT, you know it will be a meet and greet and a “keep me posted on his progress at home” visit.” That’s what I get for knowing my son so well, for advocating for him so well all these years. I get a “keep us posted” from the doctor. (Smile) That sentence seriously gave me butterflies, yes that’s me patting myself on the back, after 12 years. Yes, I am patting myself on the back.

Slow and steady is how we roll

Dr. Lestrud explained what a good wean looks like and we set a plan. Wean the liters from 4 to 3 and see how it goes.  We both agreed we want him to start school in September with or without the oxygen.

Go home and “keep me posted”

ilovebowling
I just wanna bowl!!!!

Grateful for the chaos

Today, I thought to myself “I don’t think I’ve had my period in a while?” So I checked my handy little memo pad on my phone and the last period was May 8th! Which means I am either due for my period July 8th and just skipped a month or I am going through menopause. I know, you’re sitting there reading this thinking “Girl, you better get a pregnancy test!” But, I refuse to believe that I am pregnant.  I’m too old for that!

In the meantime, I am losing my mind. I walk into a room and forget what I came in for. I start working on my computer and forget what I was starting to do. John is downstairs throwing remote controls around, chanting and suffering through the consequences, so dramatically. The sitter just texted to say she will be here at 12:30pm instead of 10am because she had to pick up her niece. Opps, I guess we aren’t a priority!

Last night, I sent an email to North Park University to inquire about a second Bachelor’s degree in elementary education.  I can’t sell froyo forever, right?! Can I?! I sent this email after working a 12 hour shift two days in a row because I suspended two girls at the shop, one I should have fired but seem to have a soft spot and can’t do it.

Sounds chaotic? That’s not the half of it. But, this is life. I will take this life over the crazy chaos I created on my own 7 years ago. I need to be reminded that even if life gets crazy I have the tools to get through it with grace and dignity. I can do this without screaming, crying or curling up into a ball.

Grateful for progress and not protection, grateful for the ability to restart my day at any time of the day so I can at least try to get it right and grateful for my chaos!

Now, let me go downstairs and go over the schedule with my son for the 15th time this morning, its 10:34am.  The boys excited that mommy is taking the day off tomorrow to go bowling with him. Hopefully, the employees show up for work!