I Wasn't Built for This

My daughter's oxygen saturation monitor alarms an hour into my sleep. I'm jarred awake and roll over to look at the video baby monitor screen to view what is happening in my daughter's room. I see numbers on the monitor that suggest a problem and stumble in the dark across the hall to my daughter's room.

Over the next couple of hours, I administer emergency medications. I turn on her oxygen. Then I raise her oxygen. I suddenly decide this can't be managed at home. I race around the house grabbing supplies, clothes, and essential items. I call a family member to come watch my son, so I can rush my daughter to the emergency room.

I wasn't built for a life like this.

My daughter struggles to breathe. She is scared as I try to dress her at 2 in the morning to go to the hospital. She whimpers when I tell her we need to leave to go see a doctor. She slowly makes her way outside towards the van. I can tell it is hard for her to breathe and walk in the state she is in. She sits still in the van on the drive wearing a nasal cannula on her face and the monitor on her finger. At the hospital, she cries when she is asked to lay on a hospital bed. She knows where she is, and she isn't happy. As an IV is attempted a few times unsuccessfully and other measures are started, my daughter cries, hits, and reacts to things she can't control. She waits for the ambulance to transport her to a second hospital where an ICU bed is waiting for her.

She wasn't built for a life like this.

My son peacefully sleeps through the chaos of the night. He awakes for school to find his grandfather at the house and not his mom or sister. (Dad is away at work.) He fights back tears as he hears the news of his sister. Somehow, he pulls it together to get dressed for a school day. He tries to go on even though the weight of the unknown with his sister and his mother's absence is heavy on his mind.

He wasn't built for a life like this.

When the job responsibilities of a mom are listed out, very few would mention administering emergency medications, monitoring at home for oxygen use, and caretaking in the hospital dozens of times as possible duties. When a mom pictures her child's life, few would predict so many incidents with hospitals, ambulances, and the medical world. When a mom has more than one child, she doesn't envision one visiting the other in the hospital, Facetime calls from a hospital room, and the pain of being torn in two directions.

None of us were built for this life. Yet, we are all in it. At times, it is extremely hard. This life of watching a loved one repeatedly have illnesses that become so serious is well...serious. Sometimes, it feels like it will crush my heart as a mother. A few times, I have even uttered, "I can't do this anymore," when the pain of her declining health feels heavy on my chest, and I wonder how much more she can endure. Yet, I do and I can.

I wasn't built for a life like this, but then again I am.

I continue on with life. I try to find the silver lining in our situations. Sometimes, I have to search very hard to find it, but I do end up finding it. The hardships of my daughter have forced me to analyze my own feelings, fears, and reactions. Some of them aren't pretty, but I grow and learn from each of them. I appreciate the healthy times in our lives and make the most of moments both small and large.

Many times in my life, I have been asked how I do what I do as a parent of a medically complex child. The answer is simple. I do what I do because it must be done. But if I had to really answer the question, I would have to credit my ability to cope as a testimony to God.

Belief in God helps keep me focused. God gives me strength that I didn't know I had. Prayer gives me an outlet to express my inner thoughts and fears. God gives me hope for a future that may otherwise seem hopeless in a sense that the medical problems aren't going away. God has built me for any problem life throws at us.

Like me, my children are indeed built for the challenges we find in this life. We acknowledge the pain and difficulties but look forward to the joys we have as well. The kids celebrate small victories. They hug when they are reunited back together after an illness separates them. They both find a way to move forward even though there are some arduous moments behind them.

After two recent hospital admissions involving two trips to the emergency room, my head is still spinning trying to process the events of the past couple of weeks. We have all survived the battle again. My daughter's breathing has recovered, and her health is back to her baseline. My son and I have settled back into normal sleeping patterns and anxiety of the situation decreases as each day passes.

There are some messy, hard days in our family, but we carry on. We were made for each other after all. When we dig down deep, we find that are built for exactly these moments with hope, faith, and love carrying us all through.

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. 

Click here to continue reading. 

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. 

Easy Faith in Hard Challenges

Have you ever doubted the goodness of God?
Have you ever doubted God's love for you?

If you haven't, then congratulations. You are amazing!! Truly- you are.

If you are like me, maybe you have struggled at times in your life.

You may have had some sort of crisis of belief or questioning of God's presence in your life for different reasons. It could have resulted from the death of a loved one, a tragedy, a scary diagnosis, or the loss of something important. There are many reasons why people end up in a situation where they question their faith.

For me, it was a series of events during the first 4 years of motherhood. It was watching my child have two open heart surgeries, and all the things that went with it. It was handing my child over for a few minor surgeries. It was having five or six specialists in my daughter's life prescribing medications, making suggestions, and running tests. It was failed hearing tests, complications during routine procedures, and unexpected diagnoses. It was having my daughter admitted to the hospital a few times for breathing issues. It was a miscarriage. It was personal and professional changes in my life as a result of all of those events.

In the first 4 years of becoming a mother, I became very confused in my faith.

I wondered if God had forgotten about my family. I questioned the goodness of God, because I didn't see much good happening in my life. I doubted God even loved our family because I felt pain, hurt, and stress. I didn't feel loved at all. Every problem with my daughter caused more and more doubts. None of my daughter's health issues seemed fair. I wondered where God's justice was in all the health scares.

These doubts were small in the beginning. I didn't wake up with questions that suddenly seemed legitimate. It happened over the course of those tough years experiencing things I never imagined. It was days and months and years of twinges of doubt and lack of understanding that led to me questioning fundamental beliefs about God.

I struggled for a bit to understand my life, my faith, and how they could go together while parenting a child with chronic health conditions. I didn't stay in the struggle thankfully. I recognized I was in a bad place and took steps to change my perspective. I also knew God was real and my thinking had somehow changed because of circumstances in my life.

I discovered some important things in my spiritual struggle.
1. If you doubt the love of God, your doubt will grow uncontrollably! The love of God is clear in scriptures. Love is what motivated God to send his son to bring salvation. If you doubt the basic characteristic of love, the doubts will grow. You'll have nothing to stand on if you can't stand on that knowledge. You won't know how to pray or believe for simple things because the love is in question.

2. Having questions during struggles may be "normal," but they aren't helpful. I recently heard a minister say, "Questioning God's plan and love for you does not empower you to move forward. Faith does!" It's so true! Questions aren't empowering. They cause division and doubts. Yet, I was more apt to stay in the questioning mode instead of just trusting God with my life.

3. Trying to find God in your circumstances, especially a health crisis, is often more difficult than we make it. God is there. Period. We don't have to search for him. When we do, we are walking by sight and not by faith. I have tended to look at stressful health situations and claim God is just nowhere to be found as there were no apparent positives around us. Yet, that thinking was wrong. I had to trust that He was there instead of looking for proof that He wasn't.

4. Did I become a Christian for the perks? Did I think that adversity would never find me? Did I think that my Christianity would keep all harms from my family? Yes, there are blessings of God when we are in relationship with Him, but we live in an imperfect place. The earth is not heaven; there will be hard times here. So why do I get frustrated with God when I should be running to His peace? What was the point of being a Christian if I responded to adversity like anyone else? Hmmmm...

I've learned many things about faith as a parent of a medically complex child. I've found out that doubts come easily and swiftly in health crises. I finally discovered how to keep a mind focused on the truth. If you're struggling, stay in the Bible, continue in prayer, and reassure yourself of the truths of God.
He's there.
He loves you.
He cares.

Want to hear more? I discussed this topic with Sandra Peoples recently on the Not Alone facebook page.  
Watch it here!!

Diagnosed: 3 Views from the Church Body

Last month, I had a post on Key Ministry called, Diagnosed: 3 Views from the Church Body. I wanted to talk about the way a child's diagnosis is perceived by Christian people, the remarks they tend to say based upon their perceptions, and questions these views have brought me. I've written a similar post on this blog, Does God Make Down syndrome, which has been viewed every week for the last 3 years making it my popular. If you missed the post on Key Ministry, here's the start of it with the link to the full post below.

When my daughter was born with Down syndrome and a heart defect 12 years ago, my eyes were opened to how people within the church view health, illness, and disability. I was always in good health, so I never knew the attitudes and beliefs held by some and how they were expelled in and outside a church building.

After my daughter was born, I experienced how Christian people view and treat those with a diagnosis. It seems that I have encountered 3 strong views among people. Some of these have resulted in positive experiences and some negative.

1. My child’s diagnoses were from God.There are some who strongly feel like those with various disabilities, especially those with Intellectual Disabilities, are special angels sent directly from God. People who believe this say things like: God must make so many people with Down syndrome, and He chose you. God gives special children to special parents. God chose you to be her parents, because He knew you could handle it. Having a child like yours is a special blessing from God. Special kids are special blessings.

Keep reading. Click this link. 

Devotions For Families with Special Needs or Medically Fragile

As I posted earlier in the summer, I have had some extra writing opportunities that are keeping me busy, and I wanted to share some of them today.

First up.... a devotional book:

Summer Devotions for Special-Needs Families is a book packed full of short devotions for families that have a child with a diagnosis. It was edited by Sandra Peoples and a number of Christian writers contributed to the book. Being on the Key Ministry Writing Team, I was blessed to be able to contribute a few devotions. If you are looking for something new to read, consider this book. Some of the topics are summer related but many are good to read any time. You can find this book on Amazon.


Next....a new piece: 
I recently had another post on the Key Ministry website called Reaching Out to Homebound Families. I, personally, have been homebound with my daughter for weeks or months due to her health issues. Being isolated at home can be very difficult, especially when you want to stay connected to a church. This post was written, so churches can help families in similar situation. Here's a snippet:

In a perfect world, all those in the faith could attend church every week as they desire. Life, however, presents all sorts of challenges making church attendance impossible or difficult for some families. There are some individuals who are homebound long-term due to a health condition and cannot attend church. Some families, like mine, have temporary homebound times which may occur after a child recovers from a surgery or serious illness, for example. Other families do not feel their child has a safe place in their church, because there is no one there equipped to handle their child’s needs or behaviors.

Whatever the reason, there are families who desire to attend church but cannot. Listening to sermons without attending church is relatively easy as many churches share them through podcasts, online videos, CDs, and social media. These outlets are great but hearing a message and feeling connected to a church are two different things. Interacting with people, having an opportunity for face-to-face prayer with someone, and receiving little words of encouragement are all missed by the family that is homebound.

Click here to keep reading...

15 Years Married: Part Survivor, Part Fear Factor, Part Reality Show

May 17th marked 15 years of marriage for my husband and I. (Go ahead and applaud if you want.)

The day we stood in a church to say our wedding vows, neither of us knew what life had in store for us. We had dreams and hopes for the future like anyone else. Most of these were ordinary ones- securing good jobs, owning a home, taking vacations, having children, and always getting along. We never pictured all the good and challenging things that would actually occur.

For the past 12 years of our marriage, we have navigated a world we never anticipated. When Jaycee was born and subsequently diagnosed with Down syndrome and a heart defect, we found ourselves in a new place in our lives individually and together. For 12 years, we have had to make difficult decisions about her medical care, therapy, and schooling. We've parented a child through surgeries, multiple hospital admissions, medical tests, and daily home medical interventions.

At times, I have felt like my husband and I have been on some strange combination of Survivor and Fear Factor. We've been in a hospital room for days and weeks at a time, sometimes in the Intensive Care Unit, wondering what her outcome would be. Her illnesses dictated our lives, and no matter how much we all wished to be home, we had to wait for her to get better. We have rushed her to the emergency room for true medical emergencies. We've seen her go through lots of scary tests, pokes, and interventions. We've genuinely worried for her life and future. It's challenged us emotionally, physically, and spiritually.

We've experienced cliff hanger moments in the hospital like you see on reality television shows. Sometimes, it was a doctor giving us a worst case scenario which thankfully never happened but caused great trepidation at the time. Other times, things projected to occur did-both bad and good.

I have jokingly told others before: "If you want to know what your marriage is made of, have your child hospitalized in the ICU. Have a doctor tell you some frightening things about your child. Feel an enourmous amount of stress and worry from everything happening. All the while, you are sleep deprived and coping in less than ideal living conditions (public showers, hospital food, little personal belongings). Then add in to the fact that you and your spouse are sharing a small hospital room with your child for most of a 24 hour period. You'll find out what your marriage is made!!"

I say that as a joke, but it is true. The hospital situations have brought out the best and worst in our relationship. We found out pretty quickly that stress contributes to some arguments and attitudes. We try to give ourselves grace in these situations and know that we both may say and do things under the strain and pressure of our situation. We know we both have the same end goals and that plan involves each other- even if we snap at each other after being up all night with our daughter in ICU.

Whatever contest you want to say that our marriage has won or survived, we know enough to celebrate the victory. Last year, we started dreaming of a trip for our 15 year anniversary. For our 10 year anniversary, we went back to the place where we honeymooned, Pigeon Forge in Tennessee. This time, we wanted to go some place new. With Jaycee's health issues, we decided to wait closer to our anniversary to plan the trip.

Then the illnesses started. She spent over a week in the hospital around Thanksgiving. Weeks later, she landed back in the hospital in January. She went home on oxygen at night and was still recovering when she went back into the hospital again in late January. She was sick the entire month of January either at the hospital or home. Things were a bit rough even into February, but then things started looking up.

In mid-April, we bravely purchased plane tickets to Niagara Falls and planned our trip just 4 weeks away. Then Jaycee went back to the hospital for a week. During the hospital stay, I wondered how long it would last and what sort of shape she would be in when we went home. I doubted the trip would happen. We can always reschedule, I told myself with a sigh. Thankfully, Jaycee made a quick recovery, so we could keep our plans. The kids went to my mom's for 4 nights while we were on our trip. Four nights may seem like a short trip, but we were grateful for any amount of time away.

On the trip, we had adult meals. I went outside my comfort zone and tried meat with chimichurri sauce. I'm not an adventurous eater. My husband was proud. We had some regular meals too like a good, well done cheeseburger.

Hanger Steak with Chimichurri Sauce...So fancy! 

We explored the Niagara Falls National Park and some visited other fun sites in the area. It was a beautiful place and a wonderful trip. We missed our kids, but we did FaceTime every night. The first night, Jaycee asked, "Mom work?" Nope, I'm on vacation girl! 

We loved every minute of our trip. We know we have overcome so much together, and we know it's important to take a few days as a couple to recognize that. 

When our daughter's diagnoses were given, I remember fearing what would happen with our marriage. We've stayed strong, and we've stayed together. We've haven't been perfect, but we have made it through tons of crazy scenarios that would have been great made-for-tv moments. Yet, this is real life. I'm glad we still choose each other and can work together through everything. 

Now...where should we go in 5 years? 

What My Son and I Have in Common (Besides the Obvious)

"When you were a kid, did you go to the sibling play room?" 

"No." I tell my son as we sit in the hospital cafeteria eating lunch. I had just picked him up from the playroom after I left his sister's ICU room. 

"I never had a reason to visit the hospital when I was a child," I continue. 

"You never saw your brother in the hospital?" 

And that's the moment I knew that my son and I were different yet the same. 

My son's upbringing has been strangely unique. He has grown up watching his sister take medications, wear oxygen from time to time, and have various interventions at home. Elijah has visited his sister, Jaycee, in the hospital several times a year since he was a toddler. It is the only life he's known, and it's hard for him to understand a life different than his.

Elijah visiting Jaycee in the hospital a few years ago.

"You do realize that most people don't visit their brothers or sisters in the hospital, right?"

Elijah sat perplexed for a moment. "Why not?" 

"Most kids aren't sick like your sister," I try to explain. "My brother was never in the hospital as a kid, so I never needed to visit him."

He still sat puzzled.

"Most kids you know have probably never had their brother or sister in the hospital. Most kids don't have a sibling like your sister. She was born with really crummy lungs and illnesses are really hard on her," I went on to explain.

He seemed satisfied with that response, but I knew that he couldn't really wrap his mind around what I was saying. This has been his life for all of his life. He's become acquainted with things most children never encounter.

Similarly, my life as a mother has had only this reality as well. I have trouble comprehending the lives of other moms. I only know what I know: hospital admissions, surgeries, specialty appointments, and health scares with my daughter. I have no idea how to relate to moms discussing sports for their children or typical childhood events. My motherhood experience has not followed the norm; neither has my son's childhood.

In this, my son and I have something in common. Our lives are shaped by our experiences with Jaycee. He finds it hard to imagine a life with a healthy sibling. I find it hard to imagine a life with two healthy children. I see him having a hard time relating to other children his age. I have a difficult time relating to moms of children without special or medical needs. We both have lives that few people can relate to, and it's made us both a bit quiet in large groups.

Still, I see another commonality. We both get anxious in our own ways when we see Jaycee coming down with a cold virus.

"She won't need to go to the hospital, will she?" Elijah asks this question hoping to have his mind eased.

"She's fine right now. I'll keep watching her," I say to him. I know better than to give him false assurances and make promises about a situation I can't control.

With my husband away at work, the two of us wait the illness out hoping to treat it at home. He watches me dose out medicines and run machines. He asks me about her numbers, and I try to be calm when things aren't going well. I can see the worry in his little face at times; I know it must be on mine too. Yet, we both find a way to keep going. When it all finally settles down and Jaycee is healthy again, my son and I have something else in common.

We know how to appreciate those good times. We are grateful for the chance to go play outside, keep plans we actually make, and leave the house when Jaycee's breathing is back to normal. We know how to enjoy simple things, and the value of health. He appreciates that even at his young age.

My son and I will carry on. We will try our best to relate to other people who don't experience what we do. We know that we understand a piece of each other that no one else will, and in some ways, that makes it a little easier. 

Me and My Ugly Heart

My child has never been healthy, well not by most people's definition anyway.

She was born with Down syndrome, which by itself did not give Jaycee poor health. Her congenital heart defect did though. Jaycee went into congestive heart failure a few days after birth. I hoped early on that once her heart surgery was performed that her life would not revolve around the medical establishment. But that's not what happened. 

Asthma became an issue when she was a baby and continues to be a problem today. (No, she hasn't outgrown it despite kind-hearted people assuring me that she would.) Then came obstructive sleep apnea, GERD, and a list of other things that I won't go into detail about. These things have made surgeries and hospital admissions a regular part of her life. 

There has always been medicine in the cabinet for her to use daily.

One piece of medical equipment when she was a baby has grown into 4. 

Home oxygen has been on stand-by in our home for years. 

One hundred minutes of each and every day is devoted to Jaycee's airway clearance and medicine regime for the past 4 years. 

These experiences have made me appreciate the small things in life. They have made me feel blessed by little victories. They have given me compassion and understanding. They have given me a unique viewpoint and perspective on life, which I appreciate. 

There are times, however, when I see my experiences have done something else. 

They can allow my heart to grow hard and ugly.

A few years ago, there was a story about a teenager who died in a freak and unfortunate parasailing accident. The first day the story was on the news I thought it was sad. The second, third, and fourth day the national news ran this story, I started to get mad. I thought: Children die everyday in a hospital. Those parents don't get to tell the world about their amazing children. No national attention is given to them when they die. The parents of this girl took a risk letting her do this activity, and unfortunately, it ended badly for them. The parents probably had several good years with their healthy child before the accident; there are many parents who would have given anything to have a healthy child for so many years. 

The more I saw the story, the more aggravated I got. That was really Christian of me, right? That's when God would whisper to me...watch your heart! Behind the story was a hurting mother who didn't deserve what happened to her child. I had some very strong emotions over this story, and they weren't good. They revealed something deep inside of me that was rooted in my experiences with my medically complex child.

I learned that jealousy can rear it's ugly head in strange ways when I hear things like this. Along with it comes judgment as I decide who "really" is getting the short straw. That's terrible of me!

I have opportunities to share my love with others, but my heart reveals more ungodly feelings. In my work, I meet many parents of children with all sorts of histories and problems. Once in awhile, I will talk with a parent who tells me, "I took my child to the ER last weekend. It was the absolute worse thing. She had to have an IV for three hours before we could go home. It was so terrible."

I let the parent talk and express her worries. I say a kind word or two. In my head, I'm thinking: Really? Your child wasn't even admitted to the hospital. Your child only needed an IV for a few hours. Try being in the hospital for weeks lady. 

Of course, I don't say those things. That would be mean and unprofessional. I hold my tongue but my inner dialogue is going crazy. And I hear God whisper again...watch your heart! This mother had her first experience with the medical system. She was scared, and I should understand that more than anyone.

Then there's good ol' social media. When I read a post from a worried parent asking for prayers for their feverish child, I think to myself: Your child will be fine. They aren't even in the hospital. I rarely pray for these posts. What does that say about my heart? I don't even need God to point that one out to me. I'm wrong.

Please don't think that every day I am sitting around getting angry with people all the time. I have times when I get very worked up and off track. I am human, and I have struggles. I feel things that show my heart is not the reflection of God's. I have work to do. 

Sometimes, I have to remind myself that my experiences can cloud my viewpoint. I compare situations, make judgements about people's feelings and experiences, and decide who is worth my time and prayers. I let stories in the media keep me from seeing the deeper picture. That's so far off from God's heart. He loves people. He wants to help the hurting and meet people where they are. I should be doing the same. I don't want my heart to be ugly. I want it to be like God's.

I have to be vigilant to not let my life experiences make me bitter, jealous, and cold. I, of all people, should know how to minister compassion, grace, and love to others. I know what it's like to be a scared or hurting mother. I hope I can do better. So, I will caution people that are like me. If you have been through a tragedy, a hardship, or trauma, you too may be at risk for developing an ugly heart. Don't let your experiences keep you from reaching out to others who need some support. 

For more on this topic read Your Worst Thing.

The Question that Doesn't Help

I made dozens of trips into my daughter's room the first night we were home from the hospital. Her monitor alarmed, signaling a drop in her oxygen saturations. It screamed, "Beep, beep, beep," as I made my way to her room. The night became a long blur of adjustments in her positioning and giving treatments.

A question crossed my mind. 

As I sat near my daughter's hospital bed, my hands held hers as I said a desperate prayer. The ventilator hummed, beeped, and worked to give my daughter breath. The web of wires and tubes crossed my daughter's body as she lay critically ill. 

There was one question screaming at me yet again. 

Days after a throat surgery, I heard my daughter coughing through the baby monitor. When I checked on her, I discovered that Jaycee was coughing on blood coming from her mouth. My husband and I rushed her to the emergency room.

All the while, a question raced through my mind.

I packed for a family trip. I loaded all the medications, nebulizer machine, bi-pap, and airway clearance machine in the vehicle next to her wheelchair.

The question came at me again.

In the nearly 12 years of parenting my medically complex child, I have had some of the same old thoughts and questions rise again and again. Some of the questions are understandable given the situation I find myself in with my daughter. Some questions inspire me to research, learn, and advocate for her. Other questions do me absolutely no good: Who lives like this?

This question pops in my head in highly intense times or moments when I feel like there's absolutely no one like me. It's a question that stays usually in my head. In moments of complete frustration, I ask it out loud to no one in particular and without expecting any real answer.

Who lives like this?

I ask this when I feel isolated.
I ask it when I feel my parenting experience is outside the norm.

The problem with the question is that it comes with negativity attached to it. The answer to the question is that no one lives like me. But there is no one who lives quite like anyone though really. The question comes when I'm upset, and it doesn't make me feel better.  

There's some things I'm trying not to do because they don't help me. Since this year began, my daughter has been hospitalized twice. Every day this year so far, she has had required an increase in medications and vest airway clearance. I have had to factor her extra needs into everything I have done this year so far. I became frustrated one day that I couldn't just up and go do something that I really needed to do. In my head, I wondered who lived like me. And a second later, I heard the whisperings of God tell me to stop with this question that helps pull me down into a negative space that I don't need to go, especially when I'm juggling so much.

But, I've noticed something else recently. As I walked into the living room, my kids were cuddled up on the couch together watching a movie. They laughed as they held hands and enjoyed a moment together. Later that day, each of them hugged me and told me they loved me. 
Now I ask that same question. 
Who lives like this?

What I Fear When Driving my Child to the ER

The automatic door slides open. I push my daughter in her wheelchair into the building, sometimes tugging an oxygen tank behind us. The bright lights hit my tired eyes while my feet walk in a fast pace up to a counter. The staff in nursing uniforms greet me and take down my daughter's information.

I hate that I have to go to emergency rooms. Unfortunately, I have had to use them multiple times with my daughter over the years. Jaycee's combination of health problems have resulted in dozens hospital admissions for respiratory issues that have all began in emergency rooms (ER).

The biggest challenge with ERs is that the doctor doesn't know my daughter or my family personally. I have found that some doctors or staff assume that I am just some paranoid parent overreacting or that I'm at the ER for ulterior motives. Some doctors don't take the time to review my daughter's extensive history or listen to my concerns. When this occurs, my daughter doesn't get the care she desperately needs.

I have had some terrible experiences in the ER. Several years ago, Jaycee's breathing became labored while we were coming home from an outing. We stopped by a local ER on a Friday night to get her checked out and possibly get medications. We met with a doctor for a couple of minutes and an x-ray was completed. Nothing else was done. We sat there watching Jaycee's vitals on a monitor. Her heart rate was extremely high and her oxygen saturations were low. There was no breathing treatment given. No oxygen. Nothing. We sat in a small room inside a busy ER being ignored. Finally, a nurse showed up with discharge papers because Jaycee didn't have an appendicitis. Talk about confusing!

We demanded to speak to the doctor who never bothered to come talk to us again, but her shift was over. The doctor who took her place was just as confused as we were but looked at her vitals, listened to us, and called for a transport to a children's hospital. A helicopter came, oxygen was given, and Jaycee finally got the help she needed.

Even the ER at the children's hospital has gotten it wrong. A couple of years back, we took Jaycee to the ER late one night because she had a junky cough, and her oxygen saturation levels kept dropping at home. I will admit that Jaycee didn't look sick and that was part of the problem I am sure. When Jaycee quickly went through triage at the ER, her vitals were on the borderline of needing oxygen. At home, her numbers were bouncing around so staff had to watch it for more than 30 seconds to see the problem. We were escorted back to a treatment room and an x-ray was taken to investigate the cough. Jaycee was never given a breathing treatment. She was never placed on the monitor, which was highly unusual, given we had concerns about her breathing. Nothing happened! All the while, my husband and I grew anxious that Jaycee wasn't being helped!

A few hours after arriving, a doctor came into the room to discharge Jaycee. My husband and I were furious, and my husband said he wanted to talk to someone else. The next doctor entered to give us reasons why Jaycee was fine. We disagreed. He humored us and placed Jaycee on the monitor. It was then that he realized that Jaycee needed oxygen...and a breathing treatment...and ICU!

I can give you a half dozen stories that exemplify the worst of our ER experiences. I mean, let's not forget the local ER doctor who asked if my child with Down syndrome was a "mongoloid."

On the other hand, I can give you a half dozen stories in the ER that went extremely well. The last couple of ER trips have been near perfect. We were seen soon after arrival, the doctors listened to me, and Jaycee was promptly diagnosed and admitted for treatment. The nurses and doctors were all kind and tried to make Jaycee feel comfortable. These good experiences are how I wish it was every time I enter an ER.

The problem is I never know what I'm going to get. I don't know if I'm going to have to convince the doctor that my child is sick. I don't know if I'll need to take our own inhalers inside because they won't give her a breathing treatment. I don't know if I'll need to ask the doctor to put my child on a monitor or do basic tests. I don't know how the doctor will respond to me, my daughter, or my situation. All of the unknowns make me even more anxious in a situation that is already stressful.

On the drive to any ER, I get fearful and worry about my daughter's health as I try to get her medical care as soon as possible. I also worry about what will happen when we arrive. I never breathe a sigh of relief until the process has started at the ER and I can tell that Jaycee will get the treatment she needs. If not, I'll speak up and be her voice.

But, I'd rather someone take my voice seriously the first time.

One Thing I Remind Myself in the Pit of Illness

Being Jaycee's mother has been emotionally hard at times.

With every diagnosis, life-threatening emergency, surgery, and hospital stay, there is understandably some fear for her future. When she was born, Jaycee was diagnosed with a heart defect that almost immediately put her in congestive heart failure. I was very fearful that Jaycee wouldn't make it. I worried her heart failure would worsen, and I wouldn't see the signs in my infant. I worried something would go wrong during or after her open heart surgery that would cause her life to end. I wasn't obsessed with this thought/fear, but it would pop in my head uncontrollably at times. I worried how my life would go on if hers didn't. These thoughts scared me, and her future seemed so uncertain. 

Then I had a God moment. It's one of those times when a thought came to my mind that I knew wasn't from me. In the midst of my fear and worry about Jaycee's life, this came to mind: 

Don't mourn your daughter while she is alive.

I knew what that meant. I knew I wasn't suppose to worry and fear for my daughter's life because she was after all still alive. Those thoughts were making me sad and depressed. I didn't need to focus on a possible bad outcome for her that wasn’t our current situation. I was letting those fears about her future affect my emotions. So I got it. There’s no reason to mourn a situation that isn’t one yet. This thought has stuck with me over the years. 

Before she started kindergarten, Jaycee had two open heart surgeries, two heart ablations for Wolff-Parkinson White syndrome, and had been in the ICU a few times for pneumonia. Since then, she's had a few more rocky times in the hospital with surgeries or ICU admissions. Some of these things have been hard to process. 

On the one hand, I feel she is invincible. She has survived so much despite having many health conditions that put her at risk. Jaycee seems to bounce back. She fights hard during illnesses and wins.

On the other hand, I wonder two things. How much can a little girl's body take? How many times can a child go into respiratory distress or shock or acute respiratory failure? I start to have doubts about her life.

These doubts have came at me a few times (maybe multiple times) recently because of Jaycee's two admissions into the ICU within two months and the one admission we are currently on. Old fears and thoughts come back. When they return, I remember again:

Don't mourn your daughter while she is alive.

So I take a breath. I take a second and clear my mind. I can't control the future. I don't know what lies ahead for Jaycee and her health. But, today she is here. I will be joyful for that. 

Joy to the...Special Caregivers

It's the most wonderful time of the year.

Well, it's suppose to be.

My attitude lately has, frankly, sucked. I don't want to sound like a broken record on this blog, but a hospital stay impacts a family for weeks afterward. Once Jaycee came home, I took over her intense care, which included nebulizer and vest therapy treatments every 6 hours around-the-clock for almost a week. Her oxygen saturation monitor beeped and alarmed multiple times a night for that first week home too. Basically, the tiredness I felt when I arrived home from the hospital with Jaycee grew exponentially.

Besides the zombie like state I was in, I didn't have time to process the whole situation until we were home when I had a second to think. This whole illness began with Jaycee turning blue at home. This has happened now more times than I can count. Years ago, Jaycee responded to her emergency medications, and her breathing would stabilize. This time, like the past few blue moments, the emergency medications were not completely working and she was ripping off her oxygen as I was trying to put it on. Can you say stressful?

I haven't even told you how my child hit and kicked me and the nurses in the hospital as she fought off the necessary activities that needed to be done while there. That was exhausting physically and emotionally. She was scared, so I wasn't upset with her. But, her resistance to touch continued when we came home, and I needed to touch her for one of her temporary but extremely necessary medications. I dreaded the two times a day I had to approach her with these medications at home because she would not calm down. Yep, that first week post the hospital was hard.

The combination of lack of sleep and the stress made for my less than desirable mood for the last few weeks. This season usually brings me joy. I love shopping for others, looking at Christmas lights, and the season of giving and kindness. I have had moments of happiness, but there's been lots of sadness, tears, and frustration with things that have happened lately.

Sometimes, it is hard to be a person of faith and stay joyful in times of trouble.
You want God to rescue you, and it's hard when it doesn't happen. It's harder when an illness (or problem) happens again and again. You want to make sense of something and find a way to have hope that things will be better.

There's something important that I need to keep reminding myself.

Heaven is perfect. The Earth is not.
Heaven is where my daughter will be free from sickness. Heaven is where I won't be stressing about her numbers on a monitor. Heaven is where we'll have perfect peace.

On Earth is where we are though. I want many years on Earth with my daughter too- don't get me wrong. But, the Earth is full of things that God neither wanted or planned for His people. I forget this sometimes. I forget that things aren't always going to perfect on this imperfect planet.

That's why the Lord's prayer is so powerful in moments when you feel God isn't in your situation. Your kingdom come. Your will be done on earth as it is in heaven.

I'll keep reminding myself to pray. I'll keep telling myself that I can have hope for a better future for our family. I'll tell myself that things were hard for a bit, but those tough times don't have to ruin future times that bring opportunities for joy.

So my fellow moms of children with medical or developmental diagnoses, I hope that during this Christmas season, you are finding joy. I hope you can shut out the chaos in your life right now and find peace. I hope that recent trials aren't souring your mood, and you can enjoy the fun times with your family today. I'm certainly going to try to do this! A sugar cookie or two may just help. 😊

⁹ In this manner, therefore, pray:

Our Father in heaven,
Hallowed be Your name.
¹⁰ Your kingdom come.
Your will be done
On earth as it is in heaven.
¹¹ Give us this day our daily bread.
¹² And forgive us our debts,
As we forgive our debtors.
¹³ And do not lead us into temptation,
But deliver us from the evil one.
For Yours is the kingdom and the power and the glory forever. Amen

Matthew 6

I Have Nothing Cute to Say

The previous few weeks have been hard.

I'm a fairly positive person, but the past hospital admission with Jaycee has made things tough. (If you missed my last post, you can read more about the hospital stay here.) Seven days of watching your child endure pain, fight for breath, and lay in a bed in the ICU will wear on you as a parent. Then add three more days of care in the pulmonary unit where your child fights diaper changers with all her might, struggles to keep food down, and looks so sad to be in the hospital. It's hard in so many ways. I wish my daughter's health wasn't so fragile.

Jaycee sleeping with her Beast doll on continuous bi-pap in ICU

As I said in my last post, we are no strangers to the hospital or ICU. The familiarity with all of it is exhausting. I sat in the hospital and thought, "Not again! This can't be happening again!" But it was. We were warned back in 2013 that once you need a ventilator during an illness, you tend to fall harder and need more support for relatively common illnesses later on. Jaycee was almost expected to become a repeat ICU patient and that has been what she has become. Jaycee has been in the ICU every year since then for a cold virus or pneumonia or some other lung issue.

My first thought when we arrived home was, "How many times can this happen to my daughter? Is her life and ours ever going to have normalcy without hospitals?" Obviously, no one at the hospital believes it will be. "See ya next time," some of them said to us as we walked out the door. Hope not, but it has been the case for some time now.

This year alone I have accompanied Jaycee on an ambulance three times while she was transported to a Children's hospital for care. Twice the transports were for respiratory illnesses that resulted in hospital admissions. One was for the hemorrhage at home after her oral-pharyngeal surgery. That surgery, by the way, was excruciating for Jaycee for over a month. This year has had its ups and downs for sure.

As a writer, I try to share our life stories as well as how I cope in these situations. But this week, I can't find the silver lining. I have no cute story that's inspirational. I have no moment of revelation that happened in the hospital. My power of positivity is not here. I could tell you how Santa visited her in the ICU and how Jaycee has watched the video a dozen times since with happiness. But, I could also tell you it really stunk to hold Jaycee down to be suctioned several times. The bad outweighed the good as far as I can tell.

If there's something positive to say, it's this: I know there is still a God. I know God is working in my daughter someway and somehow because she is still here even though she has several health conditions that don't put things in her favor. And, I certainly love her dearly.

That's why all of this hurts so much sometimes. It hurts to see her in pain and sick and looking at me with those eyes like I should be protecting her from the nurses who must stick and poke and prod. I hate it for her, because I love her so much. Even when I felt like running out of her room when she was in the hospital because I didn't want to watch her in pain and struggle, I stayed. I held her hand. I put on her favorite movie.

I dug down deep in those moments and found something cute to say to her.

The Caution with Chronic Illness in the Family

After this there was a feast of the Jews, and Jesus went up to Jerusalem. ² Now there is in Jerusalem by the Sheep Gate a pool, which is called in Hebrew, Bethesda,^[a] having five porches. ³ In these lay a great multitude of sick people, blind, lame, paralyzed, waiting for the moving of the water. ⁴ For an angel went down at a certain time into the pool and stirred up the water; then whoever stepped in first, after the stirring of the water, was made well of whatever disease he had.^{[b] 5} Now a certain man was there who had an infirmity thirty-eight years. ⁶ When Jesus saw him lying there, and knew that he already had been in that condition a long time, He said to him, “Do you want to be made well?”

⁷ The sick man answered Him, “Sir, I have no man to put me into the pool when the water is stirred up; but while I am coming, another steps down before me.”

⁸ Jesus said to him, “Rise, take up your bed and walk.” ⁹ And immediately the man was made well, took up his bed, and walked.

John 5:1-9 NKJV

Before Jaycee, I had read the story of the man healed at the Pool of Bethesda many times. This man had been an invalid for 38 years. He had spent much time waiting by this pool hoping to be the first to step in when the water was stirred so that he could be made well.

Then Jesus came along. The man told Jesus that he had no one to put him into the pool when it's stirred and that someone steps in front of him preventing his healing. For years, I read this scripture with frustration at the man. He made excuses for why he wasn't healed, but his healing did come in a way he didn't expect.

After I had Jaycee, I got something new from this story. I thought about that man and the other people who stepped out in front of him. He suffered for 38 years, surely the people around him knew it. They never once thought about helping the man into the water first?

No! Instead, those around the water wanted to receive their healing. The passage tells us there was a great multitude of people with all sorts of reasons to want to step into the waters first. If they were first, they received their healing. Their life changed radically. At the same time though, their healing meant that other people (maybe worse off) were not and would have to continue to wait.

Can you imagine having the opportunity to change your life while others still suffer? Did they think about the people around them who would remain there still in their condition?

To me this scripture is a reminder. It is a story about how easy it is for us to be consumed with our own issues and problems and overlook the needs of others.

Early on after having Jaycee, it was very easy for me to become very self-absorbed in the middle of a health crisis. At birth, Jaycee was diagnosed with Down syndrome and a heart defect that would require open heart surgery. When we brought Jaycee home from the NICU, she was in congestive heart failure. After her heart surgery at 3 months of age, she needed oxygen for three months. After that health problem resolved, she started having an issue with her eyes and the beginnings of a very long battle of asthma that would lead to many hospital admissions and bouts of pneumonia. In other words, she moved from health crisis to crisis. Some were harder than others. There were some days of peace mixed in all the chaos, but the first year was extremely rough followed by more years of issues. The world of hospitals, sickness, and health problems was new to me, and I simply didn't know how to navigate it in a healthy way.

When Jaycee had a health issue, it would affect my emotions, thoughts, and attitude towards life. OK, it still affects me but I am armed with knowledge and understanding now. When I would hear about another person's health problem, I literally couldn't take it in. I had my own problems and it was all I could handle. I couldn't deal with anything else. Most likely, there were some people I should have stepped up and supported in times past but I didn't because I felt I couldn't. Not only that, I would get very irritated when someone complained about a health issue that was sooo not a big deal comparatively.

But, I've grown. I understand that everyone is on their own path. What may seem minor to me compared to what my daughter has went through is just the "worst" situation for another person. They need support, and I of all people know that! I have tried to develop patience and understanding for others in their own medical crisis even if I'm in the middle of one myself with my daughter.

This Bible story reminds me and challenges me. No matter how "bad" things are going. No matter what craziness is going on in my life. I need to stop and take a look around at the people I encounter. There may be someone in need whose being ignored by everyone else. Self-pity and self-centeredness only gratifies one person but a life looking outward can reach an unlimited amount of people. This is a lesson I'm challenged by often and hope to have perfected at some point in my life.

This post is written for the 31 for 21 challenge- where bloggers write about Trisomy 21 all 31 days in October.