Tuesday, January 15, 2019

Why I Needed Prayer When I Didn't Want It

Last week, I had this post on the Key Ministry website. It's an honest look at how I can feel spiritually after weeks of care taking. Start reading it here if you missed it: 

A few months ago, I found myself in the chaos that occurs during an illness with my medically complex daughter. For weeks, my daughter’s breathing struggled. At home, there were increased albuterol treatments day and night and nocturnal oxygen use. Her oxygen saturation monitor alarmed frequently several nights jarring my husband and I awake causing us to spring into action. 
There were two trips to the emergency room that led to two hospital admissions for a total of 6 nights. After two rounds of steroids, two different antibiotics, and numerous breathing treatments, my daughter was finally back to her normal self. In all, five weeks were devoted to treating this illness that ended in pneumonia.
During all of this, our routine flipped upside down. Thanksgiving was spent in a hospital, not with family and friends. My work schedule was revised and revised again. Each day presented challenges. 



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Tuesday, January 8, 2019

Leaving Some Things Behind

A new year has just kicked off. There are many days ahead of me filled with promise, hope, and life. When looking forward into the new year, I can't help but reflect on the year I just lived through though.

There were many happy days in 2018 and some that weren't so great. Recently at church, the pastor asked us what we would like to forget and leave behind from 2018. I could easily give the guy a list, which mostly involves illnesses.
Let's start at the beginning of the year because it was a flurry of chaos. On January 2, 2018, I was in the Intensive Care Unit (ICU) with Jaycee who was battling a respiratory illness and sepsis. It was ugly and rough. When she went home, she wasn't well at all as she needed oxygen off and on with near constant monitoring. All this happened while my husband was a few states away working.

Before she fully recovered from that illness, the horrible Influenza A virus inflicted itself on both of my children causing Jaycee to go right back in the hospital. All of January and most of February was spent battling different respiratory problems. By the time Jaycee felt well enough to go back to school at the end of February, I was completely drained from the stress of being her sole caregiver.

Three more times in 2018, Jaycee's lungs just couldn't fight through issues at home and required hospital stays. April's hospital stay was relatively short. Two hospital stays in the fall were only a few days each, but the majority of her illness was intensely treated at home. All of November and the first week of December was spent monitoring and medicating Jaycee. The illnesses that go on for weeks and weeks require so much of my energy and focus. That's a fact and not a complaint. But, many times people think illness that happens outside the hospital is no big deal. I can assure you that there are many hectic times at home during an illness.

I would like to forget those weeks and months from 2018 for sure. They were scary, challenging, and mentally draining. More importantly, they taint my thoughts about the future.

When I start a new year, I try to project what may happen. Part of this is my type A personality that seeks to find routine in my life that is often not routine. I look for patterns in Jaycee's health and try to predict problem months in the future. Therefore, I look to the past to see what may happen in the future. That's exactly what I need to leave behind going into 2019.

I have come to accept and wait for illnesses and hospital stays. They have happened every year in almost 13 years of Jaycee's life. So of course, I anticipate them. In that lies the problem.

This year I am trying to leave the baggage of that behind. I'm trying to go in to 2019 with a clean slate. I'm trying not to anticipate some problem months for my daughter based upon her past. I'm trying not to predict illnesses and hospital stays. I'm starting, instead, to hope for a future of health and not be in dread of something bad that may occur.

As I write this, we are only a few days in, and I'm already struggling to stay completely positive. I have had a few fleeting thoughts in my head: Last year at this time, Jaycee was in the hospital. She was so sick, and it was hard. That thought is usually followed with this thought: I hope she doesn't get sick like that again or get Influenza again. And these are the thought patterns I am trying to correct by telling myself this: Today, Jaycee is healthy. God, let her health continue. 

I'm a work in progress. I'm trying to let the past with its fears and stressors go. I'm trying to see the future for the hope and optimism that may occur. After all that my daughter's been through, I haven't given much room for hope to grow based on past experiences. This year, I want to make a place for it to flourish by leaving some things in the past where they belong. 

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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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Tuesday, November 27, 2018

I Will Not Stress Eat. I Will Not Stress Eat.

If you have been a faithful reader on this blog, then you will understand when I say that sometimes my life is stressful. I try not to let stress get the best of me, but it's a demon I fight when Jaycee is sick or in the midst of a health challenge.

Stress has taken its toll on my body over the years in a number of ways. (See the post: How My Body Responds to My Daughter's Illnesses.) Weight gain has certainly made its way into life as a result. I tend to eat when I am stressed, and there's many opportunities for that in the course of a year when parenting a child with many chronic health conditions. I also tend to use caffeine, mainly soda and sweet tea, as a way to give me energy and keep me alert through hard times. If I am doing treatments every four hours around-the-clock, I have used caffeine to get me through it.

Back in August, my husband and I joined the Keto bandwagon. I needed a diet with rules and specifics, and Keto has that. It was a big change for us, but it has made a difference in our lives already. My husband has lost over 60 pounds since August, and I have lost 35. On Keto, you increase your fats and significantly decrease your carbohydrates as you teach your body to burn fat and not carbs. Keto means no soda. Well, I suppose you could have soda with no sugar, but that doesn't appeal to me. Obviously, sweet tea is out the question. Pastas, breads, potatoes-no, no, and no. What does that leave? Meat, broccoli, green beans, and cheese have become my best friends. The diet has been going well overall considering how I was eating prior to Keto, but I recently had my first experience with a real health challenge on this diet.

Jaycee's breathing had an asthmatic wheeze to it near the beginning of the month. At first, it was intermittent, so I started extra treatments as needed. Then, her breathing got a little worse more consistently, so I made a run to the doctor with her. He thought she should start steroids and do set treatments every 4 hours during the day for a few days. I started the plan and wasn't overly concerned with things.

The following day, her breathing suddenly took a turn for the worse. With my husband at work and my son at school, I did a random spot check with Jaycee's oxygen saturation monitor. These spot checks are essential to keeping Jaycee healthy because she does not ever communicate anything about her breathing, fever, or symptoms. I have to catch a problem with her breathing before it gets out of hand. Jaycee's 8:45 am spot check showed her oxygen saturations were 89. 89! I had just checked her an hour earlier and she was 95. The days prior she had been 98 every time. I got out the second monitor to verify the number, and I sprang into action when it read the same.

In these times, I have a set emergency plan for Jaycee from her pulmonary team. I spent the next hour implementing that plan and watching her numbers slowly improve. I was thankful for the improvement but also worried. I never know if the emergency plan will improve the numbers only temporarily or long-term. I decided to pack for the hospital, because if her number got low again, that's where we were headed next. I started to panic because I had a long list of things I needed to do at home. If she did go to the hospital, we'd probably be there several days.

I rushed to complete some tasks just in case we had to leave.
Electric bill-paid.
Soiled sheets from the morning mess-in the dryer.
Clothes I may need in the hospital-thrown in the washing machine.
Work stuff-faxed.
I kept a close watch on Jaycee whose numbers were staying in the safe range. As my essential to-do list was mostly completed an hour later, I felt drained. I also felt hungry. I started craving a delicious non-Keto dish from our local Mexican restaurant. Later, I thought often about pizza and pasta. Some part of me was clearly crying out to stress eat.

I didn't succumb to it though. I had my normal Keto friendly lunch and afternoon snack. There were times when I had the thought: Forget it, eat what you want! But, I resisted. I have to teach my mind and body to react differently to the stress I feel when Jaycee is sick.

Jaycee kept me busy the next few days with medications and monitoring, but I unpacked my hospital bag that thankfully never left my bedroom. I made it through a little health scare at home with Jaycee without stress eating or consuming caffeine. It's sort of a big deal!

I fought the food demon this time and won. Next time, I hope I can be that strong again!
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Tuesday, November 20, 2018

How To Include All Families at Church During the Holidays

I recently had another post on Key Ministry's website. In case you missed it, here's the beginning of the post with a link to the full article. The holiday season often brings about special events in churches. From live dramas, choirs, dinners, and parties, there’s a variety of activities that local churches host to celebrate Thanksgiving or Christmas. Will the local church include all members and their families during these celebrations?
As churches plan their special events, there are two things they need to consider.
1. Are families of children with special needs and disabilities attending your special events?
Whether it’s a meal or a special service, the church should strive to see all members attend their seasonal activities. If certain families with children with special needs have not participated in the past, then strive to change that. The easiest way to understand their point of view is to simply ask them why they haven’t attended in the past. There may be a wide range of answers from a time conflict with their daily schedule or issues related with bigger crowds. Take time to listen to the family. Hear their responses. Be willing to help accommodate any needs to help them attend. Some things have easy fixes.


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