Amber Gale

@ambergale | contributor
Amber Gale

The Hard Moments as the Parent of a Child With Complex Needs

I was scrolling through my camera roll looking for a specific image. Amongst pictures of the first day of school, playing at the park, making a mess with his blocks, and painting a messy arts and craft project was this photo from a cardiology appointment. It stands out — all the other images around it are bright and colorful, while this one is black and white, almost as if it’s saying “just ignore this one — it’s not that important.” When I took this photo the tech had stepped out to confirm she had the images needed for the doctor. I remember feeling confident we had everything they needed, and that there didn’t seem to be any changes from his last echo. I also remember telling myself not to worry until we have a reason to, but all of the reasoning and common sense in the world cannot stop anxiety from creeping in. Although I remain calm and collected, it can feel very much like this image — isolating, grey and cold. The world keeps going while you’re waiting, keeping your kid distracted and focused on getting through the procedure, helping him find comfort in the uncomfortable positions needed to get the information the team needs, while simultaneously praying that today won’t be the day you receive bad news or have to make a major change or decision. Sometimes we do share these images; this certainly isn’t the first medical picture I have posted, but typically they’re surrounded with the smiling picture before the appointment and positioned along with the final updates from the team — “Everything is good, come back and see us in another three months and we will do it all over again.” But those grey moments don’t go away. Rather, just like in my camera roll, they are surrounded by colorful, vivid memories that seem so much brighter next to ones like these. Ironically that can also make these grey, colorless memories feel even more vivid and out of place as it stands out so starkly. As medical parents, we tend to not talk about our hard moments. There’s a general understanding that we just “do what we have to.” We are told that we are “strong” and “amazing” for supporting our kids through these things. It doesn’t always feel that way, but we know people mean well when they say it even if we don’t believe it, so we smile — and often deflect it back with a “thank you, but my kid is the one fighting these battles,” type of response. But this *is* hard for us too, and if you’re feeling this way, you should know that you are not alone. It’s OK to acknowledge that this journey is hard for you too. It doesn’t mean it’s not hard for your child. It doesn’t mean you don’t love your child. It doesn’t mean that you’re not thankful, grateful or blessed. You’re a human, with human feelings. You are more than a caregiving robot, and having tough grey moments and memories doesn’t mean your colorful ones have to be any less bright and amazing.

Amber Gale

Life Expectancy in Black vs. White Persons With Down Syndrome

A diagnosis of Down syndrome used to mean a death sentence. Medical advances, awareness, and education have made huge changes in the life expectancies of those with Down syndrome, but those changes have not been the same across all skin colors. In 1968, the median life expectancy of a person with Down syndrome in the US was 1-2 years. Over the course of 30 years, it grew to 50 years for those who were White, but only 25 years for those who were Black. The results were duplicated in numerous studies. Researchers have torn apart any data related to the subject they could find, but ultimately came up empty-handed. All of the studies end on a similar note: “We did not demonstrate a medical basis for racial disparity in life expectancy.” In case you missed it — I’ll say it again: there was no medical reason the researchers could find that justified the fact that white people with Down syndrome were living twice as long as black people with Down syndrome. You know what they came up with? “Socioeconomic status, education, community support, medical or surgical treatment of serious complications, or access to, use of, or quality of preventative health care.” If you’ve been listening lately, there’s a lot of overlap with the systemic racism that’s being discussed in the Black Lives Matter movement. The odds of having an extra 21st chromosome are the same regardless of a person’s skin color. How long a median life is for a person with Down syndrome is different based on a person’s skin color. Ultimately what this boils down to is that although Down syndrome itself does not discriminate, there are policies, systems and people who do.

Amber Gale

Why Parents of Children With Congenital Heart Defects Need Help Too

Approximately 40% of parents of a child with a congenital heart defect report a need for mental health support or care, according to study published in Frontiers in Pediatrics. I wish I could say that I was shocked by this fact, but I’m not. Congenital heart defects (CHDs) are not just hard for the patients, but they’re hard for everyone in the family. You go through things that you never thought you’d have to go through, and post-traumatic stress disorder is heavy among families who have endured these challenges. For me, that’s where my challenges have lied. There’s a long list of things that can take me back in an instant, and make me feel like I’m right back in those moments between when I didn’t know if AJ was going to live or die. It’s the sounds of the red alarming beeps of the monitors, the smell of the palmolive dish soap that they give out to pumping moms, the feeling of having dried-out cracking hands from the copious amounts of hand-sanitizer you’ve used, the hospital food and vending machines. It’s that feeling when you’re taking the elevators to the CICU floor and the panic you felt when you couldn’t fit on because they were full, and you’re afraid something is going to happen in those two minutes. It’s those moments when you aren’t at your kids side and your phone is glued to you incase they call to let you know that something went wrong. It’s going to the DOT, and being unable to go inside because last time you went there your kid stopped breathing. It’s walking the halls of the hospital and browsing mindlessly in the gift shop, waiting for the next phone call and update on the progress of your kid’s surgery, knowing that there’s a 50/50 shot that the call won’t be positive. The sound of the code alarms takes me back to those moments when you’re walking on the unit, only to be told you can’t go past the desk because a code blue was just called and you have to wait. You know what they don’t tell you at that point in time? They don’t tell you if it’s your kid, so you listen intently, waiting for the next announcement to make out which area it’s in, wondering if it’s the mom you were just chatting with when you realize it’s not your son’s pod. It’s the feeling of the fleece tied blankets that were generously made by girl scout troops. It’s flat pillows and uncomfortable hospital couches and chairs.  The sound of someone opening curtains on a rod is like nails on a chalkboard and puts me into an immediate panic that I slept through an alarm and missed something. It’s looking at your kid in the wrong light and wondering if they’re OK and pulling out the pulse oximeter to make sure. It’s being thankful for home monitoring and alarms, while at the same time panicking about how many times you’ve walked into the room only to see that your kid isn’t even wearing the sensor, but the numbers on the screen look fine. It’s making sure your kid is breathing — when they’re sleeping, when they’re focusing, when they’re playing. It’s watching the rise and fall of his chest and knowing with precision when it’s even just slightly deeper and more labored or faster than usual. It’s not all bad, I promise. This journey has been amazing and worthwhile more than I could ever explain, but I also need to be clear that it’s not a walk in the park. But you know what my favorite thing about this research study was? If you really dig in and read all of the notes, you’ll see that the overwhelming majority of the parents who participated said that they were either already receiving, or were willing to receive help of some kind. That is amazing, and it’s a testament to the growth of our society learning to accept that it’s OK to need that help. Being a parent of a kid with a congenital heart defect is hard. It’s challenging. It can make those other things that used to be second nature feel impossible: sleeping, eating, even participating in relaxing activities that used to be fun. Depression, anxiety, psychological distress…nobody wants to think of themselves as having those things, but the fact is that many of us do have them. And it’s OK to need and get help for it. There is no award that you’ll get for being able to say, “I’m a parent of a child with a CHD and I never wanted or needed any help.” Admitting you could use help is scary, but I can also promise you that it’s incredibly powerful as well. If you’re struggling, get that help  — talk to a friend, talk to a peer, talk to your doctor, talk to your social worker, call 1-800-273-8255 (TALK) or use the online chat service if you don’t want to talk on the phone at suicidepreventionlifeline.org/chat/. There is a misconception that those services are only for people who are suicidal…they aren’t. They are for anyone who is going through a hard time and needs to talk, and they can help point you in the right direction for additional services if you need it.

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Amber Gale

Yes, Using the R-Word Is Harmful

Once upon a time, babies, children and adults were diagnosed as “mentally retarded.” They were thrown into mental institutions. Parents, siblings and spouses were told there was no hope for those they loved who were given that label. It was often, quite bluntly, a death sentence. That time really wasn’t all that long ago. As we have grown to accept and learn how to better treat or care for those who have these diagnoses, the medical language has changed. The words “mental retardation” have been replaced more recently with words like “intellectual disability” and “developmentally delayed.” Those new words are a much more accurate description of what life is like for people who have those diagnoses. Unfortunately the sarcastic use of the word “retard” has held out. It was adopted as a slur, essentially used to insult someone or something by comparing them to someone with an intellectual disability. Confession — I used to say things like “that’s r*******” a lot. One of my earliest roommates used to charge me 25¢ every time I used the word. I’m pretty sure she would have collected $5 a week from me if I had ever actually paid her. At the time, I didn’t understand what the big deal was. I didn’t mean it as an insult to people with disabilities, it was simply a word I grew up using. But newsflash? It doesn’t matter if I meant it “that way” or not. The word is insulting based on its origin. We wouldn’t accept an argument like that to normalize other slurs. Racial slurs, ethnic slurs, slurs about someone’s sexual orientation or their religion — it doesn’t matter where or how you learned it, but it does matter that it’s insulting to the people it impacts. It doesn’t matter how deeply embedded into your mindset and language it is. What matters is that it’s hurtful to an entire population of people. People like my son AJ, who has Down syndrome. We may have learned some bad behaviors in the past, myself included. Sometimes those things are even so ingrained that we don’t always catch them before they’re out of our mouths. But that doesn’t mean you can’t actively work to stop using words that cause harm, and educate yourself and others about the why behind the movement to end the usage of the “r-word.”

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