I’d tell you, but then I’d have to…quit talking because you’d have tuned me out anyway! And you thought I’d have to kill you. No, you’re safe. This year, I really want to map out some expectations for the healing process. I feel like that’s a missing piece of the puzzle for many of us.
But that map will not start today. Why? Because life has handed me other priorities. I know you’re familiar. In random waves of difficulty, life can interfere with the best of intentions sapping your energy for anything other than the essential.
The virus I had on Christmas lasted a good 14 days. Two days later, my medically fragile granddaughter came to stay with me while her parents travel out of state. She is sick. Her cough sounds like she has the same virus I had.
In the average baby this would not be of great concern, but this 8-month-old has spent 50 of the past 128 days in CVICU (Cardiovascular Intensive Care Unit). The last cold she got put her in the hospital so oxygen dependent that when the oxygen supply accidentally became disconnected, she coded. That’s short for they called a code blue meaning she required immediate resuscitation.
Em has a paralyzed vocal cord and has not even attempted a bottle since August. She hasn’t successfully eaten more than half an ounce from a bottle since she was 6-weeks-old. She isn’t comfortable with swallowing. That means the only way she has figured out to get rid of the drainage down her throat is to throw up.
Again, not that big a deal…except she often starts coughing during a feed and then throws up to clear her throat. (During a feed – that’s how you start to talk when you spend lots of time in a hospital.) We fill her tummy through a button attached to a gastrostomy tube (G-tube). Three times a day, we add medications to her food. If she doesn’t get enough diuretics, her lungs fill with fluid so keeping the meds down is essential.
This is my main priority – keeping meds in her. Second is monitoring her pulse ox. I’ve had to keep her on oxygen the past few days. That means lots of logistical maneuvering and plastic tubing snaking through the kitchen into the living room, dining room, and bedroom. I move the oxygen concentrator in the morning and evening, but I don’t want to have to move it all day long.
Now, you’re probably either thinking, “bless your heart, I can’t even imagine” or “yeah, that sounds awful, but you’ll get through it and everything will be better”. Either way, I’m sure you’re ready to tune out unless I get to the point.
Wait…I haven’t even told you how long it takes to measure out 1.6, 1.875, and 5.625 mls of 9 different medications. I haven’t explained that her thyroid medication comes in 2 different pills. Depending on the day, I have to choose a 25mcg pill or cut a 75mcg pill in half, crush the pill, add water, place the resulting mixture in a slip tip (yes, that’s really what it’s called) syringe and inject it into the button. I haven’t mentioned any of the almost daily issues with equipment – a tube that slips off the feeding syringe and soaks me during a feed; the feed pump we use at night reading NO FLOW OUT even though there’s no obstruction and I can prime out liquid; an auxiliary port on a tube that gets caught, comes open and dumps meds and milk in the crib; the pulse ox sensor that has too much ambient light to work, etc. I haven’t told you that Em has panic attacks during which she starts gulping air. That means she needs constant burping through the burp tube, but she also needs to be held close to calm down. Those can’t be done by one person at the same time. Oh, and Em can’t sit up on her own yet. She has Down Syndrome and has spent so much time in the hospital she is way behind. Because she weighs 17 lbs, that adds another level of difficulty. Yeah, I know blah, blah, blah.
But that is the point. To feel like you understand what my days really look like, I need to tell you even more details. When I do, 98% of people stop listening. I can visibly see it happen. Some people want me to buck up. Others just don’t want to think about it. Others wish I’d say something interesting for a change. Many stop me by saying something they mean to be comforting, but often reflects that they haven’t absorbed what I said.
I am lucky. For me, the relentlessness of caring for a child who can go from okay to critical in 24 hours is a temporary situation. For my son and daughter-in-law, it is every day on top of jobs and caring for a two-year-old. When Em’s in the hospital, one of them has to stay there with her.
Not only do they have the stress of the routine, they have to make some really tough decisions. Em has pulmonary hypertension. There are 12 cardiologists who consult on her case and they fall into two different camps on treatment. Half of them would have her living in the hospital right now. How do you decide whether to bring her home or keep her hospitalized when the experts can’t reach a consensus?
And to all of you who want to say, you’ll get through this and everything will be okay – yes, we’ll get through it and it will be okay, but we do not know whether her health will improve. It may not. Getting our minds around the fact that this may be our new normal is more than any of us have been able to do. It just feels too sad. And that’s when it’s not feeling too overwhelming.
When you’re up from 2am to 3am with the average baby it’s tiring, but you’re buoyed by memories of holding your baby close or hearing her laugh. When you’re up from 2am to 3am with a medically fragile baby who is sick, you worry that you didn’t spend enough time holding her because you were too busy performing the tasks that keep her alive. That is a lonely, emotionally exhausting 2am.
I think we all just want to know we’re not alone with this. We want to feel a sense of support and connectedness in this situation life has dealt us. There’s simply no way to feel that if we don’t feel seen and understood. I don’t say that just for me or my family. We are just an example. It applies to all of us. It is the real gift we want from each other.
As humans, we may be geared to need connection, but somehow at this moment in time we seem to be lacking the will to stay tuned in when things are hard to hear. That means those who most need support are least likely to get it. I don’t know if that’s why we have so many people who feel the need to escape through drug and alcohol use, but I think it may be related.
Speaking from your heart is a vulnerable experience. Listening with your heart sometimes feels even more so. When you really see people, it changes your perception and not just of others, but of yourself. Keeping your heart open requires strong boundaries and oceans of courage. This is the real work of a full life. And many of us miss out.
Em and I saw a beautiful example of connection this week. I flipped on the Ellen show during a feed. Dax Shephard was on and it was his birthday. During a segment called, “Ask Dr. Dax,” his wife Kristen Bell asked from the audience what he would recommend giving someone special like a spouse for their birthday. He answered, “I would say please, please, please give that person love and support for 11 years, give them two beautiful baby girls…and you’re good.” Kristen’s eyes filled with tears, as did his. It was a beautiful thing to see.
Not everyone has a spouse, partner, parent, or child with whom such a connection is available. Today, you may have the privilege of being the only person who can offer active listening to someone you encounter. You may be the one person who can hold the space for someone to heal. It may not be instinctive or easy. It may interrupt your busy life. You may not feel appreciated in the moment. In spite of this, should you choose to listen, you give a valuable gift when you find the courage to stay tuned in.
If you have made it this far, thank you for listening.
Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”