Let me be Mom

The day Mason was born was not the first day as his mother. Since the moment his heart began beating I began this journey. So did he. It may come as a strange surprise to many when I say I often need to remind myself I am his mother. This isn't because I literally forget him or that he is my child, it is in the sense that through this journey I have had to wear many hats at various times. Less than 24 hours after birth I questioned his breathing pattern and blue tint around his mouth and nose but a machine 20 minutes later said all was fine, and a nurse said, "You are just nervous because of the cardiac defect but he's doing fine..". That next afternoon he showed us he was indeed not fine and coded not once but twice..presenting initially the same way I pointed out the night before. We then entered this whole new world where I would find myself absorbing words, tests, symptoms, numbers, sounds like a sponge. 

What one surgery resident said that had me furious at a doctor for the first time in my life.......

"What do you do for a profession? My response was, well I am Mason's caretaker 24/7 and a mom to his 4 sisters as well. I used to be..... To which the resident replied, Let us do our job, and you stick to your job, OK?"
                                                   - Conversation after being asked how Mason's night was
                                      and me giving a detailed account of every desat and cyanotic episode.

What this guy didn't learn in his residency at that point was what kind of role we as mothers/parents play in our child's journey. The reason this is often said so ignorantly is because when you spend almost every waking moment of your child's life bedside in the ICU or hospital in general, you pick up on what needs to be communicated and if no one else is going to notice or speak up then you as their parent are it. The time leading up to Mason getting his trach and the time frame at which Boston Children's intervened with the most modern life saving surgeries really drew me into a mind set I never imagined nor had any control over. A mother shouldn't have to even know how the aorta is suppose to form and be positioned in their child nor should they know the countless ventilator settings at hand should the aorta or other major blood vessels compress your child's airway till they are in respiratory failure, but we do know (not that we know everything) and we know enough to throw in our theory when the medical team looks stumped. Sometimes the caregivers love and determination is what gives their child a chance at life, not what a surgeon with more doubt than hope or the surgery itself. It isn't always a doctor that gets your child where they need to be, sometimes caregivers take on the role of medically advocating for their child because they never stop believing and even if no medical journal says an answer or a suggestion for treatment, the caregiver's love and hope is enough of a concrete reason to keep trying. 



It Gets Exhausting and You Relinquish Control...or Try 
Today I just wanted to be mom. Yesterday I just wanted to be mom. Did I have a choice? Yes, I did. That choice came with pros and cons. Why is it so hard to just be his mom? This is a great example...
We had our first parent/team conference on Friday where we sat with the main TBI doctor, the NeuroPsych doctor, OT, PT, ST, Social Worker, and the Physiatrist (A Physical/Occupational/Speech therapist but is a doctor). The meeting started off with asking if we had any questions, though they are so good with communication we only had one main question and that came from us as his caregivers, nothing medical just our love for him being so strong that we wanted to know what length of time we could expect him to be able to receive care here because we have realized as his parents how amazingly helpful rehab is to him and we want him to utilize it as long as possible. So that was us as his mom and dad engaging in his care. Throughout the meeting I found I had to switch roles to some degree because I had to not only remember what Mason's personality and behavior were like at baseline, I had to at times retell what medical treatments he has had for certain conditions, what his medical conditions are, and what things medically seem to still need addressing and the best way I think he will respond. That's just a part of it. The terminology used would go over my head as a bystander. The gears shift fast though and while one moment I may be speaking of his liver function labs, the next second I am listing off Mason's favorite songs, colors, and sharing how he loved to play the ukulele. Just when you think you can keep that mom hat on, the doctor is asking you to gauge when I think he would need a prn medication and whether it made him drowsy or not, or if I think his stomach hurts. I just wanted to be Mom. Then he finally settles and is asleep but wakes and no one notices because the door is shut and his alarms aren't going off. He's crying and breath holding and so red and sweaty. You want to be Mom but you can't because Mom wants to pick him up and rock him and let him fall asleep on you but you can't. Why? Well you need to figure out what could be causing him so much discomfort. Does he need suction, is the humidifier hose too hot against him, is he wet, are his orthotics uncomfortable? If he was home you'd be figuring all this out so you figure it out. Then you again instruct the nurse on how to properly put his orthotics on and how to run the pulse ox cord and let her know the secretions are thick despite the humidifier, and then lastly you ask respiratory why on earth they have been giving his nebulizers at 5am when he certainly wasn't due till 8am and 8pm! See sometimes you can't be the Mom your heart wants to be. This only continues into each day. You notice your child's discomfort and behaviors that are a clear sign of a condition acting up. Today was reflux. No it isn't that he needs to poop again, his reflux is acting up because since the 12lbs he has gained in the past 2 months his medication has not be adjusted. When would I get to be Mom today? I got to be Mom when I insisted he have pajamas on after his bath not day clothes. I got to be mom when I put his hat on because it was cute. I got to be Mom when his bedding was wet and he needed it changed. My time with my child is short while he is in the hospital here. Yes, I have a choice, I could forget all things medically and just hold him and dress him and read to him but that would not result in him being comfortable because no one knows Mason like we do so at the end of the day I may have sacrificed my own desire to be his mom but he is that much more comfortable and able to progress forward. I have found that the distance between us makes it that much more of a challenge to give up the other roles I have taken on. What I have been able to do is step away and give myself a break from all the roles at time and trust his team. I can never just be Mom, at least not today. Maybe tomorrow. 

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