5 Steps to Hope

My son signing “I love you”!

As a parent, my children luckily have not had very many occasions where they have to go to the hospital, nevermind stay overnight. I can only recall twice that my younger son has had to stay one night in the hospital. I never had to bring my older son for an overnight. I know I am very fortunate to have two healthy sons. Of course, technically my illnesses and injuries probably exceed my family’s quota anyway. I am just going to accept any glimmer of good fortune, though! These are the 5 steps I must take in an undertaking such as, a night in the hospital with my son.

Step 1: Choose a parent

My son and I. 2018

For my family, a night in the hospital, even for a very routine reason, becomes anything but routine. My 4 yr old had to stay overnight last year after he had his adenoids and tonsils removed. The second time was at the beginning of this week for an overnight sleep study. My son has been showing various signs of childhood sleep apnea since he was about 26 months. In both instances, one parent is expected to sleep in the room with their child. Well, both times I felt like an obvious choice, as opposed to my husband. Being a stay at home mom my schedule is more flexible. My husband has to be in his office, so when he can go to work without a problem it is always preferred. Also, I attend almost all of the office visits with the Doctors and see the daily symptoms my son displays, so I am able to more accurately depict the situation and implement the solutions that are given.

Step 2: Choose my transportation

My son and I waiting for surgery. 2018

How will my son and I both get to the hospital for our scheduled time? It is always a key step for me. Since I do not drive, figure out a ride, car seats, and everyone’s schedule is key in the preparation and planning. securing a ride well in advance seems to be the best plan. In this particular example, the night of the sleep study, my son was at a holiday party in Cambridge and my sister met me at the hospital in Boston, after the party. As for me, I was given a ride by my PCA’s daughter, who has been an irreplaceable help and friend, to me over the years.

Step 3: Choose who will stay and who will go

My PCA and friend

In this case, the person who drove me into Boston also agreed to stay with me overnight. This is one more step that every family does not have to think about. Yes, I am there for my son as a source of comfort and allows him to have some familiarity in a somewhat scary situation. There are some parts of different appointments that I need to call on people who support us to fill in for me. For example, lifting him on to the hospital bed or carrying all the unneeded supplies I brought. Most importantly, I need someone with me so I can transfer, from my wheelchair to the bed and back, in the bathroom etcetera.

Everyone’s school and work schedule impact their availability to spend the night away from home. I need to also ensure that a PCA will be there to help my husband prepare and get off to work. Over the years I have had to increase the number of people on this list, as well as increase my ability to teach new people the best way to help me. As these people are learning, I too am learning to get around in a new environment. Making it anxiety prevoking and difficult for me, regardless of my comfort level with the PCA.

Step 4: Hope for the best, but prepare for the worst

My son and his sloth all wrapped up!

The last step is the hardest, both physically and mentally. It truly saddens me to think of all the physical barriers I still face even in a hospital or medical setting. Even beyond these I have been talked down to and not respected as a parent with a disability. I show up to these appointments expecting to make certain physical concessions, even though they should not have to. I come as prepared as possible with the tools (people) I require to complete what is asked of me, and yet their people who push back and act like I do not know what I am doing. You would think that by seeking proper medical care in the name of my son and my preparedness would be enough evidence to the contrary.

I spend time going over these issues with my chosen companion. No, there might not be grab bars in the bathroom. They may not be kind to us because they said, one parent. I know there is one parent, but we are technically two people. Please don’t get defensive. I will try to advocate for myself.

Step 5: The day of reckoning

My son being well cared for!

We knocked on the door when and where we were told to report for my son’s sleep study. We were greeted by a woman who asked who we were. I told the woman my son’s name, that I was Mom, and I had brought my PCA who needed to help me transfer throughout the night. To my great relief, she smiled and held the door open wide for us. We went into the room we were directed to as she settled us, I assessed the grab bar situation in the bath. Lo and behold there they were accompanied by a roll-in shower. After rolling back to our room we were given, wearing a fast-growing smile, I explained to my PCA she would use the cot intended for me, and I would remain in my wheelchair. To which she started a foreseen, and good-humored, back and forth. We were politely interrupted by that same woman, who said, “the room next door is free and your son can sleep there, giving you both beds”. We, of course, thanked her in stunned disbelief. A little while later, I went with my son to the room next door. I read his books and sat with him until he fell asleep. Before leaving his new room, I again checked out the bathroom. It had no grab bars and no role-in-shower.

Later, I put one hand around the bed rail of the hospital bed I had been given to sleep in. I was flooded with emotion. On the one hand, this experience went off seamlessly. On the other hand, I felt a little sad about the need for my low expectations. Should there really still be so many barriers for parents with disabilities? Why in 2019 do I have to hope for the best? Yet with all I have, hope that one day I can take my son anywhere without hesitation.

In the morning we packed up our stuff and got ready to leave. I was still happy with how the experience had gone off. I thanked the woman for being so helpful and understanding. I said, “by the way, I never even asked you your name. What is it?” She smiled back at me and answered, “I’m, Hope.”


2 responses to “5 Steps to Hope”

  1. So glad Naomi & I could tag team with our fave fam!💕thankful you guys had a good experience- wish they would all be good but know often thrown for a loop you deal with firmly gracefully 🙌love you guys

    Liked by 1 person

  2. That was an inspiring story Liz. I am so grateful that the sleep study was such a good experience.


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