Survival Mode: Life with a Chronically Ill Child

One of my biggest fears has always been having a seriously ill child. I would look at other parents in that position and marvel at how they did it. How did they put one foot in front of the other and get from one day to the next? How could they live with the helplessness of having to look at their child’s beautiful face and not be able to help them feel better and be a regular kid? How do they survive? Then one day, I suddenly found myself in the place I had always feared. And it is so much harder than I had ever imagined.

Our second daughter Hallie was born October 9, 2018 and we were completely overjoyed. Following the traumatic birth of our first born, then two consecutive miscarriages prior to conceiving Hallie, her safe arrival was everything we had hoped for.

Our first few days with her were wonderful. Then everything suddenly changed. She started crying constantly and among other things, became extremely constipated, bloated, and would throw up a lot.

As time passed her symptoms continued to get worse. She was so uncomfortable that she would literally cry 24 hours a day. Even when she was sleeping, she was still whimpering and would require constant soothing to try and keep her asleep.

At 14 months, after many months of doctor appointments, tests, and countless ER visits, Hallie was finally diagnosed with an incredibly rare form of Eosinophilic Gastrointestinal Disease. It affects her entire GI tract, with the main concentration being in the esophagus, stomach, and colon. Very simplified, it makes her body have an allergic reaction to all food. That’s right...ALL FOOD. The thing every living creature needs to survive is making her sick. I still can hardly wrap my mind around it.

Immediately following her diagnosis, she was taken off of food and given a feeding tube through her nose and into her stomach through which she is fed a highly specialized type of formula. In that moment, our lives went from bad to worse and things have just continued to get more and more difficult from there. Her symptoms have not yet improved and now we have the substantial medical aspect to do deal with as we try to get her symptoms under control.

There isn’t an area of your life that is left untouched by a child’s chronic illness. With all of that is going on with Hallie, our personal lives have had to be put on hold. We’ve had to back away from our small groups, church activities, relationships with friends and family, and even our jobs. Not to mention, having to turn down countless invitations to parties, get togethers, sports and camping trips - things that we love, but are simply not possible with a baby that doesn’t stop crying and is sick all the time. This has only gotten worse now that she has special feeding needs and cannot be around food because she is too young to understand that she cannot have it.

You don’t realize how much of life revolves around food until you are forced to completely avoid it. And with every “no” we are forced to give, the isolation closes in a little bit more.

Having a sick child forces you into a place where you are forced to pull away from those closest to you, even though now is when you need them most. It’s an incredibly lonely place with no easy way to get back to the life we once had and most people don’t understand. They don’t understand the physical, emotional, financial, mental, social, and relational demands of having a seriously ill child, and it’s not easy to explain without having walked through this valley yourself.

Your Other Child

As I said earlier, Hallie is our second child. We also have a four-year-old daughter named Addison, which adds a whole other level to getting through from one day to the next. Time and time again I am left having to break promises to Addison because we are suddenly having to rush in to the ER with Hallie, or Hallie is really sick, or we need to change plans because Hallie’s feeding tube has come out and we need to get it back in because she needs her meds. It feels horrible and so incredibly unfair to her, and yet I have no other option.

Following our longest hospital stay with Hallie, I couldn’t even leave the room to go to the bathroom without Addy completely melting down. She was convinced that I was leaving again and she didn’t know when I was coming back. So heartbreaking.

Having a little one that demands so much care and attention often makes it a struggle to make sure that we are also meeting the needs of the older one. When one has a rough day, so does the other one. This leads to a lot of days where I am upstairs trying to deal with Hallie and my husband is downstairs taking care of Addy because taking care of both of them in the same place, at the same time can just be too difficult. But yet at the same time, what they both want is me. It so often feels like the tank is empty, but they still need more.

Your Marriage

Your relationship with your spouse changes in ways you never pictured. Suddenly you are forced into an almost co-worker caretaker situation. You are having to team up to perform medical procedures on your child. One person is having to hold down your baby that is screaming and fighting the procedure that the other person is having to perform. It goes against every fibre of who you are as a parent. You are supposed to be the one protecting your child from fear and pain, not the one inflicting it on them.

Our little Hallie, being that she is one, is not impressed with her feeding tube being taped to her face, so she often pulls it out several times a day. Several times a day we are having to pin her down and push a tube through her nose and down into her stomach. No matter how much you tell yourself that this needs to be done and you are doing for their good, it never gets any easier.

In our particular situation, it often feels like Jon and I are almost having to live separate lives. As I said earlier, Jon and I often end up caring for the girls separately because Hallie has a lot of very hard days where she cries most of the day. This can be really hard on Addy and it’s often better if we can separate them.

Since Hallie cannot be around food, we are forced to eat our meals separately. One of us will eat with Addison and the other will keep Hallie downstairs away from the food. Then we will switch off so that the other can eat.

Then bedtime comes and the really hard part begins. Because a large part of the body’s digestion happens at night, nights are particularly hard for Hallie. Because she needs continuous soothing to try to fall asleep and stay asleep, I typically spend anywhere from seven to ten hours a night sitting in the rocking chair with her, which means Jon is sleeping in our bed alone and I am simply not sleeping. Even as I write this, it is 3:07am and I have yet to lay down in bed.

All of the things you have taken for granted are suddenly gone. The romance, the date nights, watching tv in bed, eating treats together after the kids are in bed, and talking about nothing until late into the night just can’t happen. Most days we don’t even get 5 minutes of time together to talk about issues or future plans. It’s all just react in the moment and do what you think is best for the family. It is pure survival mode.

Just the simple task of leaving the house in the evening to pick up something, or go work outside, now has to be arranged and timed. Since I’m stuck in the rocking chair all night, do I need my husband to get me something before he leaves the house? Is the healthy child sleeping? What if they wake up before he gets back? How do I get them back to bed when I have been trying to get the sick child to sleep for the past 3 hours? Do I get up to put her to bed and start all over again? Or try to appease the healthy child until my husband gets home to help with them? The simplest of tasks are no longer just simple.

Then if you do have someone offer to take the kids long enough to go out for dinner, you spend most of the time talking about your sick kid. Did their caretaker sweep before having her over? Do they have food out? What if she eats something? How will that make the next few weeks? Then you end up cutting the date short because in your mind, no one can care for them as well as you can.

There are statistics out there that state divorce rates among couples with a child that has a severe chronic illness, are as high as 90%. Knowing these rates only adds to all of the stress we are already dealing with as we so desperately do not want to become one of these stats.

Your Emotional and Mental Health

There is depression that comes with the isolation and feeling separated from friends and family. There is anxiety surrounding the child’s health and concerns over the added financial strain that comes along with all of it. There are questions that constantly plague your thoughts about every aspect of your and your child’s life.

I think most parents question their parenting skills at times. Are we spending enough time with our kids? Are we patient enough? Do we discipline too much? Do we not discipline enough? These thoughts become 100x worse when your child is sick. Am I advocating enough with her health team? Is this the right treatment plan? Is there something I’m missing? Why did this have to happen to our family? How do I ask for help without others thinking I’m a bad parent? Did I do something wrong during my pregnancy that caused this? Does she look at me and wonder why I’m not making her feel better? Does my healthy child think she doesn’t matter as much as my sick child? Am I failing her? Am I failing them both? The questions that come to mind truly are endless and that internal battle is probably the part that is the most difficult to deal with.

Your Finances

All of the extra demands of the illness require so much extra time, and in most cases daycares will not accept a child with these extra health care demands. This leaves no option but to have one parent unable to work, to stay home and care for the child. There are countless appointments and ER visits which both parents need to attend, so the other is forced to miss a lot of work as well. Never mind the additional cost of medications, driving to and from all our appointments and picking up supplies.

My husband has dreams of opening up his own woodworking business, but due to the extra time requirements of caring for Hallie, he has also had to significantly cut back on his side projects because his help is needed at home. The overall impact is huge and is something no one could really be prepared for.

Your Personal Health

The physical demands of a sick child were something that I had never thought of before I experienced it myself. Your time is no longer your own and there certainly is not time for things like exercise or preparing healthy meals. Never mind all the fun things like taking a class, having a spa day, or going for a weekend away.

In our particular case, we have to keep all the food in our house hidden away, so there is no time for food preparation and most of our meals need to come pre-prepared from a deli or fast food restaurant. Even taking time for a shower is something that can barely be squeezed in to an already hectic day.

The physical effects of little to no sleep, poor eating habits, walking a crying baby back and forth all day, and then rocking her all night all add up to be pretty overwhelming. This all leads to back pain that never goes away, the foggy confused feeling in your brain from being so incredibly overtired, the intense foot pain from walking countless laps around the house, and the depressed immune system that causes any cold or flu to last weeks longer than it should can often feel like too much for your body to handle.

Physically there is no way that I should be able to get from day to day. There is no other explanation but God is carrying me through.

Your Faith

It’s so hard to understand why this is happening and why God doesn’t just fix Hallie’s little body and take this all away. Jon and I have already been through more hardships in our lives than most, so why we were chosen to be given this intense difficulty as well, is hard to understand.

I have had so many late-night conversations with God, begging Him to please do something. Anything... Please God let this medication be the one that works, break this fever, help her sleep at least a few straight hours, make her stop crying, let there be at least one food she will be able to eat. Please, please, please help us! And yet so often those prayers have gone unanswered. As disappointing as it can be, I know God hears me. And even as my prayers feel like they are going unanswered, I know God is working in ways I cannot see.

The song Waymaker by Leeland, has become dear to my heart in these last few months since her diagnosis. And as the song says, “Even when I don’t see it You’re working, even when I don’t feel it You’re working, You never stop, You never stop working.” I have to believe that God is working. Where or how I don’t know, but He is working and one day we will be able to look back at this and see how He was moving amongst all this chaos.

My relationship with God has transitioned to a place where I am falling back on my knowledge of the Bible, my past experience with God, and what I know in my head to be true. I know that God is real and He is here with me, no matter how alone I may feel. I know that God hears my every cry and every prayer, even when I don’t hear Him speak to me. I know that just because He has not chosen to heal her yet, does not mean He doesn’t care for us. Paul was one of the most important men in the Bible, and even though He pleaded with God repeatedly to take away the thorn from his flesh, He didn’t. “But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." 2 Corinthians 12:9.

So much has become about choice. Choosing joy in my despair. Choosing faith in my anxiety. Choosing not to become a part of the 90% of marriages that don’t survive. Choosing to get up each day and do the best I can with this dark situation I’m in. Choosing to believe that God’s grace is sufficient for us and His power will be made perfect in our weakness.

Although Hallie’s diagnosis is incredibly unique, our story of having to survive from one day to the next is not. Through our many hours, days, and weeks spent at HSC Children’s Hospital, I have talked with many parents who are in same place as we are. Just trying to get through the next hour, the next day, then the next night. And when you ask how they get through, the answer is always the same. “I don’t know, you just do.” You get through the day and you wake up the next morning and you do it again. And that is the best we can do.

About the Author:

Cari Thiessen is amazing. The depth of her resilience, faith, and humour in incredibly difficult circumstances is hard to articulate in words. Please commit to praying for Hallie, Cari, Jon, and Addy.

If you would like to send Cari a message, email and put her name in the subject line.

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