Monday, December 24, 2018

The Power of Believing

Last week, I had a post on Key Ministry. If you missed it, here's the beginning of it with a link to the full post.

“What’s Santa going to bring you this year?”
My son turned sharply to the acquaintance who asked the question. Then he firmly said, “There’s no Santa.”
“Yes, there is. You have to believe,” the person tried to persuade my son with no success.
Believing is important, but not in the Santa scenario as my son so accurately saw. As I observed the interaction, I thought back to my early life as a parent. For a time, I believed something totally wrong.
In my early days as a mother, I believed a big lie. The lie whispered in my ear when my daughter’s doctors informed me that she had Down syndrome and a heart defect when she was born. The lie screamed at me when I watched my child struggle, deal with in-home therapies, take medications, and use home medical equipment. The lie seemed verified when someone stared at my child, made a crack using the r-word, or joked about something being “special.”

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Tuesday, December 18, 2018

The Gift of Unexpected Blessings

When your child is diagnosed with a life-long disability, there are many feelings and questions parents face. Though the diagnosis may be different for families, parents often find common ground with their feelings, concerns, and future unknowns.

Sandra Peoples, a Christian author and advocate for special-needs families, has recently released the book, Unexpected Blessings: Joys and Possibilities of Life in a Special-Needs Family. Sandra's book aims to help families of children who have been diagnosed navigate their feelings, relate them to scriptures in the Bible, and move forward in the life set before them. She shares stories about her own personal experience with her son with autism, which allows readers to understand some of her own journey. Her real life examples, quotes from other sources, and scriptures are weaved together seamlessly helping parents let go of their false beliefs, work through their grief, focus on healthy routines, rebuild a strong faith foundation, and create a support system.

Here are some lines from the book that I connected with: 
From Adam and Eve to now, each person has lived out his or her own Plan B. We see this throughout Scripture, including the accounts of Job, Ruth, Jonah, and Peter. 

False promises of a struggle-free life are lies and can't stand up against the truth of God's grace and love. 

When I find myself in a valley, I ask myself, Will I let this draw closer to Him or push me away? 

Yes, we always point to the hope we have through Christ, but we never shame a person for how they are feeling in that moment. 

Going through stressful situations together doesn't usually bring out the best in people. 

Marry someone you can suffer with!

As I read these lines as well as many others, I found myself saying, "YES!" My experiences have been different than Sandra's as I have been raising one daughter with Down syndrome and a myriad of health conditions and one son with Ehlers Danlos syndrome. However, I could relate to many things in the book, and I know other families could as well. 

As you read through the pages, you'll be sure to appreciate the perspective that Sandra brings to families with a diagnosed child. Her book is insightful and thought provoking. It would be a welcomed addition to the library of a family that has a member with special needs. 

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Tuesday, December 11, 2018

Am I a Hero, Incompetent, or Irrational?

People often make snap judgments about others. This is a normal part of life. But, I have found this is especially true in emergency rooms.

Sometimes, I take my daughter to the emergency room (ER) in various states of respiratory need, and I am viewed as a hero. I am thanked by the doctor for bringing her to the hospital and praised for my prompt attention to my child. My notes on her breathing over the previous day or two are found remarkable by the doctor, and further accolades are given regarding my care giving.

It feels good to be the hero and for the doctors to recognize the part I play in keeping Jaycee healthy in intense times of illness. I feel validated in my care. It is, after all, difficult to keep her breathing under control during illnesses. She is minimally verbal, and rarely communicates illness or pains. I must rely on my eyes, the numbers on a monitor, and my ears that hear the changes in her breathing. Even though she is 12 years old, she cannot convey information about how she feels and if her breathing is worsening. Most importantly, when I am viewed as the hero, Jaycee receives the care she needs from the ER in a timely manner.

I'm not often seen as the hero, however. More than a few times, I have been viewed by emergency room staff as incompetent. They see my daughter's breathing tanking, and they assume I'm somehow responsible. I've had doctors make snide comments towards me such as, "You need to be educated on her asthma action plan if she is coming to the ER like this."

Never mind the fact that she was a nonverbal child at the time.
Never mind the fact that I had been monitoring her day and night with much anxiousness.
Never mind the fact that sometimes no matter what I do, her breathing suddenly gets worse.

It doesn't matter though. No one completely understands what I do at home, and my parenting comes into question when her breathing is in a bad state. I can tell by attitudes and words given by medical professionals that I am seen as incompetent. I was even questioned by a social worker once regarding my efforts at home and my involvement with local doctors to monitor Jaycee's breathing. Every time, I am viewed as incompetent it sticks with me for weeks and months. It causes self-doubt. It makes me feel like a bad mother. Even though I know I am trying my best to take care of my medically complex and developmentally disabled child, being regarded as incompetent causes me to second-guess my decisions. That isn't healthy for me.

More importantly, being viewed as incompetent makes me distrustful of those who are suppose to be helping my daughter in the hospital. Instead of jumping in and supporting my family through another scary illness, I'm thrown into an emotional whirlwind by the people I am trying to obtain help from.

On another note, there have been multiple times at the emergency room when I have been viewed as irrational. My daughter has needed the ER many times, but I am not one to go to it for no reason. After 12 years, I know when she is sick but can stay at home. I also know when she is getting worse and needs treatment from real nurses- not her mommy nurse. But, it really bothers me when I am viewed as an irrational mother who has brought her daughter to the ER for no reason.

Sometimes, Jaycee doesn't look too sick when I bring her to the hospital. She has a high pain tolerance, so she may not look as sick as I describe. I'm sure a nurse sees a child watching an iPad peacefully as no reason for alarm, but looks can be deceiving.

There have been many occasions when my daughter's numbers for oxygen saturation and heart rate fluctuate substantially prior to her really making that downward turn in her respiratory status. When her numbers are on the low side of normal during the five second check in triage, it often gives a false impression of the situation. Clearly staff aren't concerned as we have sat and sat for hours without anyone rechecking her on a monitor. More than once, a doctor has recommended continuing treatment at home without rechecking her vitals after the initial triage. More than once, we have spoken our concerns and asked for her to be watched on a monitor for a few minutes before going home. With reluctance, the doctor usually does so and then jumps into action when the problem is finally observed-hours later.

After multiple trips to the ER, I can spot when I am being treated like an irrational person fairly quickly into the process. I hate it when doctors don't listen to me, because they are wasting precious time with Jaycee's health. I hate having to assert my nonclinical opinion of my one and only patient to the health professionals. I hate 'making a case' for them to treat her. Much like when I am viewed as incompetent, these experiences make me feel distrustful of the medical world. The people I take my daughter to for help drag their feet, don't do full examinations, and aren't speedily providing treatment because I am seen as an overreacting parent.

In November, I made two trips to the ER with Jaycee. The first time I went with my daughter she was admitted for 3 nights but I was first treated in the ER like an irrational mom overreacting to an increased oxygen use at night. The second trip to the ER a week later had the opposite reaction. Though I had to wait over two hours to be seen, once called back, my story was listened to and Jaycee was given prompt treatment before being admitted for three more nights with pneumonia.

Several friends have asked me if emergency staff are more prone to pay attention to Jaycee and make sure she gets extra attention in the emergency room because of her history (multiple admissions to the ICU for cold viruses, ventilator use twice for illnesses, recurrent pneumonia needing extra support). I tell them- no! Her history doesn't matter in the emergency room for whatever the reason.

I never know how I will be received by those giving emergency care. Will my daughter be given prompt attention and treatment? Will they blow us off and act like I am irrational? Will they take the severity of the situation and somehow turn it on me? I never know. That is why emergency rooms are hard for me for one of many reasons.

I get that doctors meet all sorts of people in ERs, and they must prioritize patients. But, I hope they would listen more to parents, especially those of medically complex children. I would hope they would want to be seen as an advocate for the child's health instead of an adversary. Unfortunately, I have seen both.
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