Today's Devotional Thought
October 31, 2015 by Rachel Piferi
Child Chronic Illness: This Mama's Journey
It is about 1am and Disney channel is flickering in the background as my 7-year old sleeps peacefully beside me on the couch. It is good to see her sleeping peacefully, as the last few hours have been full of fever and tears and pleas not to go to the doctor. It appears my little one has the flu, so we are curled up under blankets in the living room. We just finished watching the Mets win Game 3 and then turned to Disney to watch princesses and fairy tales as the evening turned into night.
And as my little one has finally fallen asleep, I find myself thinking of the many things I would like to tell mothers of children who deal daily with illness. And I don't mean the flu, although that is what we are currently dealing with.
I mean chronic illness.
You know, those illnesses that are so much a fiber of your family that some days you forget that they exist.
Until you're reminded.
Those reminders that come when your child gets sick and you have to filter her current acute illness through the backdrop of her chronic illness.
Those reminders that come at class parties when the food brought in by other parents does not quite comply to the diet that she is on and she is left feeling a bit left out of the holiday revelry.
Those reminders that come as you have to figure out what day of the week she can miss this week at school so you can go for routine medical testing. Picking between missing gym or missing music or missing her math test or missing her assembly.
Those reminders that come when your child cries at the thought of going to the doctor because her last memory of the doctor was painful medical tests.
There are certain things in life that are just hard. Whether it is a chronic health condition, a job loss, a marital problem, an issue in childrearing, or any number of other life issues, life is hard.
It just feels particularly hard when it is happening to your child, you know?
And hard is exactly how it feels when your child has a chronic illness.
As I have been watching over my little one as she sleeps, I have also been reading several articles on childhood chronic illness. And, it is amazing how similar the experiences can be, even if the illnesses are different.
The fears that moms write about.
The disruptions in life that are experienced.
The practical, day to day, issues.
The fact that when a child has a chronic illness, it is really a family issue and is not just isolated to the child who has the illness.
And the fact that it seems so hard for those around to know how to help someone navigating a chronic illness, especially when it is a child who is dealing with the illness.
So that is the purpose of this blog...to shed some light on what it's like first hand to walk the journey of having a child with chronic illness. So you may know better how to help that person in your life, whom you love with all your heart, who has a child with a chronic illness. That person that you love so much, but you just don't know what to say or what to do to help them as they walk their road.
First, I feel like I should share what our experience is so that you have some understanding of the perspective from which I write. My daughter has kidney disease. She has had it from birth and as such, we have special diets and routine doctor's appointments and frequent testing (some painful and scary & some not). We live under the possibility that she will need a kidney transplant at some point in her life. In fact, the hardest part of our journey is living under the perpetual "waiting for the second shoe to drop" and the fact that every doctor's appointment brings with it the question of whether this is when we will be asked to walk the transplant journey. Our doctors have been wonderful and have shared that no one really knows the future, so they just don't know if she'll ever need it. But, medical precedent suggests she will need a transplant at some point. But then again, who knows?
He knows when, what, and how. We just don't know. And that's how we live. In a perpetual uncertainty about her health and a constant state of testing to see if and when her health will change. I know many of you know what that experience is like (even with your own health).
So that's a little of my perspective and the perspective from which I write. Some of the recommendations I will share are based on my experience and some are based on what I've read from other moms who are coping with their own chronic illness journey. As journeys go, I am very aware that ours is much less hard in comparison to what some families are dealing with. But even with that statement, I am led to my first point...
1. Everybody's child chronic illness journey is different. For some, like us, the chronic illness has been part of their story from the beginning of their child's life. The nice part of that is that their child doesn't know any better. They don't know what it is like to not have the inconvenience of doctor's appointments or special diets. But the bad part of that is that their child doesn't know any better. Questions like, "What's it like to be normal?" or "Will I ever be like other kids?" just rip a mother's heart out. And they come more frequently than you'd imagine.
Having a child with a chronic illness brings with it a sense of being different and unique. And whenever anyone recognizes the uniqueness of our journey, it means the world to me. I'm not uncomfortable when people ask me about her or recognize that her journey is different from other kids.
In fact, I like it.
It shows me others notice. And care.
I was at Isabella's open house earlier this school year when I had an experience like this. We were looking for Isabella's seat in her classroom and a young dad walked up to me and asked, "Are you Isabella's mom?" After I said that I was, he went on to explain how he likes to come to eat lunch with his daughter on Fridays and when he comes, he usually brings candy for all of the kids in class. And, he shared that when he did it in the past, he noticed that Isabella never took any. After asking his daughter why that may be, she shared that Isabella couldn't eat certain things. So, he told me that he has been wanting to ask me what she could eat candy-wise so that each time that he came he could make sure that he had something specifically for her while the other kids were ripping into the chocolate he brought for everyone else.
Honestly, I was so taken back by his thoughtfulness (and the fact that he didn't even really know us) that I completely blanked on what she could eat! I was so overwhelmed by his awareness and thoughtfulness of her unique situation. When I finally did re-gather myself and share what she could eat, it led into a precious conversation about her illness and I was able to share with him how she deals with it.
And I left immensely blessed.
I know it can feel uncomfortable asking a parent about their child's unique health condition. But, in my experience, when someone notices and asks how they can give something unique to my child who is living a unique life, I am blessed beyond measure. I am sure many care, but often people don't know what to say, so they don't say anything. But this gentleman showed me how important it is to notice our life and ask how he could serve us in it.
Everybody's child chronic illness journey is different. And when you notice someone traveling their unique child chronic illness journey, don't be afraid to ask about it, to understand the uniqueness of their journey, and how you may be able to help meet a unique need. It will be such a blessing to the family feeling they travel their road all alone.
Which leads me to the second recommendation...
2. More often than not, I would rather talk about her chronic condition than not talk about it. And, from what I've read, other moms feel the same way. One of the most difficult parts of walking the journey of having a child with chronic illness is the chronic nature of it.
The fact that it is a journey.
And this journey is one that doesn't really have a foreseeable end and the beginning of it is usually far in the past. And because it hasn't "just happened" and nothing has really changed to suggest that we are at a turning point or an end point, there isn't always an obvious need to talk about it. In fact, because it is a journey that just "is," it is hard for people to know whether to talk about it or not. But even if it is something that seems "normal" in their life and it may even seem like they have forgotten that they deal with it, I guarantee you it is something that they deal with emotionally or practically all the time.
And if they're like me, they don't mind talking about it.
They even appreciate it when you ask about it or want to know how they're doing with it. A simple, "I was thinking about Isabella today and praying for her health as she goes back to school" means the world to me. It is so special when someone recognizes that as she grows new challenges emerge or when someone realizes that having a child with a chronic illness is an ever changing experience as she grows developmentally and experiences new grade levels or developmental challenges. It may "seem" the same, but it rarely is.
And as mamas, sometimes we need to talk about it. Or at least hear that someone else is thinking about your child and you. If they don't really want to talk about it, you'll know. But I guarantee you that even if they don't want to talk, they'll appreciate that you mentioned it and acknowledged that this is still a very real part of their ever-developing daily journey.
Which leads me to my final point (for now) about dealing with a child chronic illness...
3. It is a journey of faith. One of the biggest struggles with Isabella's health is the faith journey it takes us on. And that's not all bad because, as we know from Paul and James, trials strengthen our faith and produce perseverance and endurance and hope (Romans 5:3-4; James 1:2-4). And I can tell you that the journey of faith that Isabella's life has taken us on has been a gift from God. I know God better than I would have ever known Him with out her illness journey. And for that, I delight in this journey.
But some days, you struggle to believe.
Just being honest.
I mean, you know you DO believe and trust that God is going to direct us and her journey according to His will, you just don't quite know if you're truly going to be able to walk it well.
How ugly will it get?
How hard will it be?
How is this actually going to play out?
And you tell yourself to trust.
But sometimes, you wonder if you truly do.
One of my favorite stories in the Bible is the one in Mark 9 about a desperate father who brings his son to Jesus for healing. In their conversation, we see the father share with Jesus how they have been dealing with demonic convulsions and this chronic condition since his son's childhood. And you can just hear the desperation in his voice as he approaches Jesus for healing for his son. The disciples were unable to heal him and he comes to Jesus and pleads.
If you are able to do anything, have compassion and help us...
Can't you just hear his pleading in his voice? A father, a little beat down from having dealt with this condition for years, just begging for something to relieve his son's pain. Something or someone to lift the burden of this journey they've walked for so long.
The facts look really bad.
It's a bad condition.
They've struggled with it for so long.
And the disciples couldn't do anything about it.
So now, it is Jesus' turn to help.
If he can.
And in a moment, Jesus speaks with authority and reminds this man that he can. Perhaps man is unable. But He is very able.
Then Jesus said to him, "'If you are able?' All things are possible for the one who believes." Immediately the father of the boy cried out and said, "I believe; help my unbelief!" (Mark 9:22-24).
And in this interaction with Jesus, this father is reminded of his belief. And his tendency to let the facts right in front of him tempt him to not believe.
That is the chronic illness journey.
Oh how you have days that you struggle to hang on to your belief that every step of the journey is for your sanctification and is part of God's mighty plan and will bring Him so much glory. And that no matter how this goes, it is for your good and His glory. Oh how you want to live in 100% unwavering trust in Jesus through every appointment, every bad night, every moment of isolation, every poor test result, and every moment of hurt. But every now and then, the facts in front of you, tempt you to not believe. And you look at Jesus and say, "I do believe, please help my unbelief."
The child chronic illness journey is one where you have to choose daily to believe.
And for the outsider looking in, anything you can do to encourage them to believe is a good thing. And anything you can do to acknowledge the struggle is such encouragement.
Pithy statements like "You just have to trust God" or "If He brought you to it, he will bring you through it" can leave a mama feeling really bad about her own faith journey. But the well thought out card or Bible verse about holding on to what you know to be true is very helpful. Acknowledging the struggle without condemning the struggler is such a welcome salve to the soul and strengthens this mama's weary heart in ways that I cannot even express.
Walking the road of a child with chronic illness is a road that is harder than I can even articulate. But, it is a road that I have learned to accept because of the insight that the Lord has given me on it. It is even a road that I can say that I embrace with joy.
Not on all days.
But, the Lord has been gracious and kind and has given me joy on the journey on most days. And as I have walked it, I have gleaned so much from the experience that I hope you can use to help others on this same road. If you know someone who has a child with a chronic condition, love on them a bit this weekend. Send them a text or a note or stop them at church on Sunday and tell them you were praying for them as a family. Watch the special needs they may have and make a point to acknowledge that need in some way in the near future.
Remember that it is a long road and along that road, they will need some co-journeyers to encourage them, believe in and for them, and strengthen them.
I am blessed to have co-journeyers. And two of them were over last night for just a moment to help with something. I'm sure they didn't even know how much their help (that came on a moment's notice) meant. And, how much a love-filled hug (you know, the long type of hug that you rest in for a moment to regain yourself) meant.
God loves us through other people. He strengthens us for our own individual journeys through others. And as you are loving your people this weekend, remember those dealing with chronic things. Whether it be chronic illness or financial hardship or martial struggles or any number of other hard life things, show up in someone's life this weekend.
And remind them that you notice their struggle and that you care.
And to the mamas out there who are caring for a child with chronic illness, let me share a couple of verses with you today that I go to when the journey gets a bit hard. Reminders that God is with me when things get a bit overwhelming and that even if its hard, it will not overtake me. May they speak to your weary souls and may you feel encouraged to believe as you take one more step on your journey, knowing that God is with you wherever it leads:
When you pass through the waters, I am with you; when you pass through the streams, they will not overwhelm you. When you walk through the fire, you will not be burned; the flames will not harm you. (Isaiah 43:2)
Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go. (Joshua 1:9)
When my spirit was overwhelmed within me, You knew my path. (Psalm 142:3a)
How precious is your unfailing love, O God! All humanity finds shelter in the shadow of your wings. (Psalm 36:7)