Daily Prompt: A Casual Mom

I have no fancy dresses in my closet. If I received an invitation to a black tie event or wedding I would need to go out and buy something. I have summer dress, jeans, shorts and tanks. I wear underwear with super heroes on them or the cookie monster. I wear sweatshirts over my tanks in the winter because I still sweat a lot. I recently decided to let my gray hair grow free.  I now have long hair that is gray and I love it! I wear jean shorts, leggings and yoga pants, no yoga though! I am always comfortable.

I wasn’t always like this. 12 years ago I had a baby boy, Baby boy Murphy is what they called him in the Intensive Care Unit (ICU) of Children’s Memorial Hospital, now called Robert and Ann Lurie’s Children’s Hospital. He was born with a right-sided Congenital Diaphragmatic Hernia. This is where his liver and bowels grew up where his lungs should have been causing him to be born with partial lungs. He spent 13 months in the ICU after birth, 8 years on a ventilator and 9 years with a tracheostomy. He has Epilepsy since the age of 2. His first seizure lasted 8 hours and only stopped because he received a sedative cocktail that would knock an elephant out. He also has Autism and Sensory Processing Disorder.

His story is long, tragic and beautiful. He is a lot of work and somedays just amazing to be around. I can barely take a shower for more than 10 minutes at a time while we are home alone because he has no sense of danger. I am scared he will walk out of the house or set fire to it.

This morning I pulled out a summer dress because I didn’t have time to do laundry. After envisioning the day which consist of a trip to Chuck E Cheese (because he earned it), a picnic and a festival (if we survive the picnic) I decided to put my knee length yoga pants on, they make my calves look awesome! That summer dress would have tripped me up if I had to make a runner after the little man.

Happy to be casual, working from home, entrepreneur mama ❤

via Daily Prompt: Casual

Advertisements

What’s Next?

It’s been an autistic kind of day…

This morning John refused to talk to me unless we used the walkie-talkies. I enjoy when he does this because it encourages him to use proper sentences and good words. He keeps the volume so low on the walk-talkies that we can’t hear each other. However, we are standing right in front of each other. I believe the sound of the voice through the walkie-talkie causes a sensory issue so he keeps the volume low.

On the way out the door an older man walking a huge old German Shepard was walking by. John started chanting “Fuck, fuck, fuck, fuck…” over and over again. The man stopped and looked at us shocked. I quickly looked at him and said, “I’m sorry, he’s autistic, he’s just nervous”. The man gently said, “I can leave”. I said, “NO, we see you all the time, its ok. He has to be Ok”. All while John was chanting “Fuck”. The man said to John, “Hey John, this is my dog Jake”. John stops chanting and looks in their direction and says, “Jake, like Jake and the Neverland Pirates. Jake, Captain Hook, Mr. Smee, Sharky, Izzy and Skully.” The man responds, “Oh Skully, yeah I like X-Files, too”.  Next run in with Old man and Jake should go a little smoother.

We went to the last day of camp’s talent show at Indy Park. John is so well behaved at Indy it literally has me stumped. I have no clue why. Maybe because he loves it there so much. We spent an hour there listening to the team, greeting everyone and sitting watching the show. It was the quietest he has been all year so I really took advantage of talking to other adults without interruption. It was amazing!

As we were leaving it took everything in me not to cry before we got to the car. John loves this place but cannot attend because of his medical needs. They do not provide nurses and I can’t stay with him. I was sad because Special Olympics starts in September and he will not be there. I was sad because he is missing out on so many things that he loves, where he feels the most comfortable with the friends that make him feel normal and loved.

When we arrived home I let him eat “black” popcorn, didn’t feed him dinner and sat my depressed ass on the sofa. I was emotionally drained from having a good ugly cry in the car on the way home. John asked to go downstairs to play Wii. I was all for it, but didn’t follow him. I wanted to see if he could do it himself this time. He has seen me do it a million times.

I waited…I got lost in my phone…I waited a little more….got lost in my phone a little more and then popped up thinking he was way too quiet. Ill head down to see what’s up.

Scene: Our basement is small so the doors are pocket doors that slide into the wall. The bathroom door was half open with oxygen tubing trailing out. The smell of shit was in the air. I slowly peek in to find a few balls of shit on the floor, a little on the wall, all soaking in a pool of pee with his jeans and underwear laying on the floor soaked. John is sitting on the toilet humming and chanting “what’s next, Mommy?”, the question he has been asking all fucking day, while splashing his feet in the pee.

I managed to get it cleaned up while he sat on the toilet. I was amazed that he didn’t move off the toilet. I think he knew this wasn’t right and just wanted to sit there till it was gone. Kind of like what I want to do when I do something wrong….maybe it will just disappear?

All cleaned up, he jumps on the couch to play his Wii asking “what’s next?”  The bathroom is probably cleaner then when we first bought the house, BONUS!

My character defects like to creep in unintentionally. One of them is impatience and anger. Today, it didn’t’ happen. I only felt sadness. I feel like that is emotional progress…feel the feelings, walk through the fear, and keep the faith….

All day I have been listing off in my head the autistic quality’s that my son has.

The repetitive asking

The swearing

The need for a schedule

The lack of understanding of danger

He is intellectually disabled

He is beautiful, smart and so loving

Whats next blog

This is the face I love every day. It’s the face after the storm, after the hardship and after the madness. It’s the face of love and gratitude. He puts his head on my shoulder while patting my back saying “Gracias, mommy”. While we are just sitting there, after the storm. He puts on a hardy laugh while saying “I love you mommy”, just to see us laugh, after the storm. At bed, he asks one more time “What’s next?”, tonight the answer was “Tomorrow is Saturday, Chuckie Cheese because you earned it!”. He responds. “I earned it!” while his 12 year old body wiggles so hard with excitement.

#GoodNightSweetWorld

And tomorrow we will do it again…

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?

Home after 1 Month in the ICU

Home – 4/4/17

John arrived home this afternoon around 3pm. The hours leading up to his arrival were filled with anxiety. I was home pending the arrival of his medical equipment; oxygen concentrator, pulse oximeter and oxygen tanks. Ivan, the delivery man for Life Tech, called in the morning to let me know he would be there at 2pm with everything we needed. He explained he was coming from downtown. Then, I would drive the portables down to the hospital, downtown, to transport John home. I spent the morning cleaning the house and stocking the fridge just feeling excited and scared about John’s arrival. Around 1:30pm Kevin called and said Ivan is delivering the portable tanks to the hospital at 2pm so Kevin can be discharged. I was happy to hear he was being discharged but sad that I wouldn’t get to say goodbye to all the amazing folks that supported us the entire month. Kevin called at 2pm, he’s on the road. The oxygen tank John has only holds an hour and half. In the meantime, the supply company’s dispatcher called me to say they won’t be delivering the equipment for 2 more hours. I panicked letting them know John cannot go without oxygen or he destats, we need it here at 3pm. After about 15 minutes the dispatcher called me back letting me know they have rerouted home and he will be on time. Hallijewah!!

All this panic and stress reminds me of the medical supplier days when John was vented and trached. Dealing with the discrepancies, deliveries, always late and nurses! It was such a stressful time and I am sure that was one reason why I self-medicated with alcohol most evenings.

Today, John is home. Everyone is congratulating us and telling us how blessed we are. But, I can’t seem to be happy. I feel like we have taken such a large step back. I want to believe he will recover from this but am fearful he won’t. The idea of going through this again makes me sad. I really don’t know if I want to cry or laugh.

I am following my happy clown of a son around with 25ft long oxygen tubing attached to a portable oxygen concentrator. The concentrator is a large heavy gray box on wheels that has a rhythm of oxygen pulsing through it. He went downstairs to play Wii bowling and constantly had to be told to put his mask back on. On the way back upstairs he barely made it up having to stop and take a break half way through. We figured out how to give him a Neb which seems to bring back his pink color and he decides he wants to go upstairs to use the computer. After the 10 minutes of rearranging everything upstairs he wants to go back down. I accredit all this movement to spending so much time in the hospital he just needs to move move move.

I am happy he’s home. I am happy that I do not need to drive 10 miles every day to see him. I am happy that he is breathing better and that the doctors trust me enough to let me go home with oxygen. I am sad that it has to be this way. Someone posted on my Facebook “Now you can get back to normal”, whatever normal is. This isn’t normal for anyone. But it is our normal for today.  Another person said “He looks so good and healthy”. I guess that’s relative? If occasional blue lips look healthy? I admit, as much of an open book I am, I do not always let people see all the bad. I share a lot of the good stuff, the corners turned, the leaps and bounds, the miracles. I understand why people say he looks great. He really does look great. But, they didn’t see him 30 minutes earlier destating to the 40’s while his entire head turned blue.

I am not sure what I am trying to get across here. I feel like I am justifying why I am so unhappy or sad about where John is medically. Even though he has come far in the last month, it’s not where he was before this all started.

My life practices tell me to be grateful. We always have something to be grateful for. There are times when I am writing my gratitude email thinking, “I wonder if they think I am being sarcastic?”. I am grateful for oxygen, for portable tanks, for hospital staff and that we finally got some fresh air today. My gratitude list sets the bar low as far as gratitude goes. Others are grateful for their vacation homes, for having an extra day off to take care of business, for their families and so on. Maybe I should shoot higher with my gratitude but I don’t want to. I feel myself resenting my gratitude’s – is that even possible?

Meanwhile, as I write my son is shouting “Namaste!” over and over again. My friend Tori and I use that as a bad word a while back. He is trying to make me happy by using good words. He knows that makes me laugh.

I am so grateful for this broken child that has so much love and laugher in his heart and that he wants to share that with me.

“Is he Autistic?”

Autistic

“Is he autistic? Is a question I get a lot. It is usually paired with a soft sad look and tilted head. These people have no idea how wonderful it is to have a child like John. Another autism mom wouldn’t even ask that question. They would just start sharing stories with me that I usually can relate to, like normal moms.

“That’s what they say. But, I’d be autistic too if I spent 8 years on a vent” Is usually my response. It really depends on the day with how I respond.  Some days I don’t want to deal with the follow up questions, “Why was he on a vent for 8yrs” “what was wrong with him, he looks fine”. Some days I do respond this way just so I can explain him out of his autism. Meanwhile, he sits chanting my name and pounding on something nearby.

In the ICU he is always autistic. I must answer for him, even though I don’t always need to. I must help him with toileting, dressing, eating and so on. Just as I do at home. But, when they start talking about sending him to the floor instead of discharging us from the ICU, that is when I say it, “he is autistic”.  I argue that he has to adapt to the change in environment again, get to know the nurses that will already be jumpy around him because of his medical history and how all that change will just be too hard on him. “Please please please discharge us from the ICU, you know me, I can handle this at home.” Is usually my last line.

Being discharged from the ICU versus the floor usually means we go home a day or two earlier.  It’s just one of the tricks of the trade that we learned in the last 12 years. Like when he was a baby he had MRSA colonized in his trach. Every time we went to the ER it was the first thing we mentioned. It meant we got a private room in the ER. MRSA is very dangerous if active and having him in the general population was not safe for others. We definitely took advantage of that. Having our own room meant quicker service and getting home or admitted sooner. Now that John is no longer MRSA we don’t enjoy that benefit when we go to the ER.

This hospital stay I am not even sure I want to argue about going to the floor. I just want out of this room. I’m thinking the floor might be the next stage in our life, a stage we may need to get used to. He is older, stronger and less critical medically. The ICU beds are full, they need the beds for others. As I write this we are here over 3 weeks. 4 children have passed away, one I know of from the flu. I can’t help but think that could be John. I need to get away from this energy that makes me feel sad and grateful at the same time. It’s like I am being pulled apart from both sides of my body, the pain goes right down the middle of my chest, the sadness lingers in my heart and the happiness is always on the edge trying not to show too much. I’m watching mothers and fathers leave here without their babies. Its emotionally and physically draining. I am so grateful that I do not know their pain. I am so grateful that I have my son with me.

Now If he would just eat his damn hot dog and stop chanting my name “Barbi, Barbi, barbi, barbi,  barbi…. I don’t want hot dog”. Thank God he’s alive!

 

Every visit has a memory

Every visit has a memory

Worst night this time around…

Every time John has a hospital stay there is something horrible that happens that we will never forget.  The first 13-month stent has a bunch of bad memories.  Like the time they placed an IV in his head because they couldn’t find his veins, they were so narrow.  Or the time they called us into the hospital at 2am saying this might be it, we need to get in fast.  I remember the rooms we were in and the people standing there.  Their faces are a blur but I know how many people were standing around and what they were doing.  This time around I will never forget tonight 3/13/17.  John destated to the 40’s on his oxygen.  I haven’t seen him that blue since he was a baby.  The whole experience is making me question every decision I have made this trip to the ICU.  Nothing like a trip to the ICU to fester up that mother’s guilt.  What should I have done differently? Maybe I should have come sooner? You know, like any mother except my decisions are based on life and death.  Oh, the fucking pressure!!! No wonder I drank!

I think what keeps me from breaking down is the fact that Kevin is breaking down.  He can’t stand this and emotionally collapses.  I end up having to hold him up, talk him down and tell him everything will be all right.  Tonight, after he went home I wanted to cry. But, I didn’t because I had to take care of John, get him to sleep and make sure he got his meds.  Then, when he fell asleep I sent Kevin a text letting him know.  Kevin called me.  How grateful I am he calls me today.  He was crying saying this isn’t fair and how hard it is to see John like this.  I sit and listen, tell him I understand and recommend he takes a hot shower and sleep well tonight. But, don’t forget to say your prayers.  He agrees, calms down and we hang up.

It’s my insatiable need to be in control that prevents me from breaking down.  I need to be the one barking out orders and telling people what John likes and doesn’t like, making recommendations on what to do next, talking to the doctors. It’s my character defects working to my advantage. I’ve yet to see a parent sobbing while making medical plans with a doctor in the ICU. It just doesn’t work that way.  You hold your shit together and do what you need to do.

And you remember every single detail and pray that the next time it will work out the same way.  And when it doesn’t you panic inside but manage to brainstorm more ways to move forward. And each step you take forward there is a heart wrenching twist in your gut praying it works. When it does there is a victory dance in your stomach that is hard to explain. When it doesn’t it is like a loss, like you are one step closer to losing him.