Every night I say, “good night, sweet dreams, I love you every day”
Tonight his response:
“Barbara, are you freaking kidding me?”
Me: “Nope, I still do”
I rarely hear woman say “I wanna be just like my mom someday”. We hear boys say they want to be just like their dads when they grow up, why don’t woman say it more? Such different relationships…
Today, I yelled at John. You might think I don’t yell a lot, maybe it was just today? No, I yell all the time. I think my normal talking voice in this house is yelling. I cannot have a conversation without talking over John and his technology devices going off so I scream “Turn it down” mid-sentence and keep going. Newcomers to the Murphy household are usually shell shocked and wondering how I can even have a conversation and retain anything we talked about.
Anyway, I started off talking about mothers. I spent years praying to not be anything like my mom. Now I wish I was like her. She was a mother that had a lot against her. She raised four very different kids in a mostly unhappy marriage as a stay at home mom. After her divorce she went out to work as a bartender, later getting a job with the Chicago School system doing janitorial work. Her relationships with her kids were strained because we were little assholes. Except for my older brother Teddy, he was and is non-judgmental and empathetic. I know he was towards our mother, not so much with others. Even though I believe he really is but tries to play it off like he isn’t. He is generous and is always helping people. A friend of his went to prison and Teddy was the only one who kept in touch with him, sent him gifts, money, etc. When I asked him why he even bothered he said, “Why not, the guys got nothing else going for him”. When that friend got out of prison, less than 3 months later he died of a heart attack. I think about how that poor man died when his life was getting ready to change for the better and how grateful he was for Teddy’s correspondence all those years.
My mom was diagnosis with brain cancer when Johnny was a baby. I was devastated and so was Teddy. Even today I feel these overwhelming waves of guilt in me for the absence in my mother’s life for so many years, it was intentional absence. I was so mean and judgmental. Unfortunately, it took an illness for me to have any empathy for her at all. She had cancer for 6 years before she passed, we had an amazing 6 years filled with great memories. I would hop on a plane every 3-6 months to visit her in Ireland where she lived to spend a few weeks with her. Teddy and I would take turns going, sometimes going together. Mom told my cousin Mikey one day, “I’m happy I got cancer. I don’t think I would have known how much everyone loves me”.
When he told me that my heart was broken for all the lost years. All the years she wanted to talk to me and I wouldn’t. All the years I didn’t even know why I was mad at her other than other family member’s influences. That day I vowed to live a life where there was no question about love. People I love know I love them because I tell them when I see them. Even if they think it’s strange, I say it. Last weekend, we went to John’s ECMO reunion to celebrate his survival. We have kept in touch with all those folks for over 12yrs. Danny, the ECMO specialist that cared for John, is a friend we see rarely but still considered a friend because of his role in our lives. As I was leaving I told Danny “I love you, see you next year”. He said he loves me back, but I didn’t’ expect that. I truly love him for his role in my son’s life, his survival.
When the feeling rises, I say it. On the other hand, people I dislike usually know it, too. Not because I tell them. Because I create boundary’s that keep them at a distance. For example, my sister and I haven’t seen or talked to each other since Dad died. I do not like her, how she treats her family or how she treats other people. I don’t want to judge her, condemn her or save her, so I create the boundaries. Some people need to save themselves and my role in their life may be only to watch me from afar or not.
I remember mom yelling at us when we were kids. Once she chased me around the front room with a broom and almost made contact. I probably said something disrespectful.
I hate that I yell at John. Sometimes I can’t help it. I always apologize to him without the “but”. I remind myself that I am teaching him how to be treated. We make mistakes, we make amends, we forgive, we pray and we live in gratitude. Thank God for the ability to take time outs, restart our day and thank god for LOVE!
At the end of the night he has never turned away a hug or kiss, for that I am grateful. At the end of the night he knows I love him!
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!
Every morning while John is on the toilet I set up his toothbrush with a rinse cup. 12 years old and I can finally walk out of the bathroom while he brushes his teeth . I set it up, say “brush, rinse and come downstairs.” Today, he never came downstairs. While I’m getting his meds ready I shout up, “John, are you done brushing your teeth?”. His response, “Yah, brush Bosses teeth”. I run upstairs and find this.
They are bonding. They are like brothers that like each other when it suits them. Boss sometimes knows nothing of personal space while John is always telling him to “watch your personal space!”. They still struggle at the top of the stairs every morning. Boss likes to take an entire step and lay there until you’re just ready to step on him. Then he moves. John enjoys letting Boss lick the white cheddar off his fingers from eating “Black Popcorn” (The white cheddar popcorn in a black bag). While he licks his fingers he says “Look tickles”.
I love that they are bonding and becoming friends. This could have gone either way.
A boy and his dog
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? 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
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.