Written by AAGF Board Member, Nicole Blomerus.
Practical Strategies to Smooth the Journey
Beginning The Nightmare
“We’re sorry, there’s nothing we can do and you’ll just have to slowly watch her die.” Words no parent ever wants to hear. Whether you’re pregnant and receiving a grim diagnosis for the sweet little peanut growing inside you, or a parent to a child of any age, navigating the path in front of you will be scary and uncertain. With hundreds and thousands of difference diseases that can potentially affect your child, it would be impossible to cover the specifics of any one condition.
As a mother of a child with Short Bowel Syndrome, I can tell you that there’s no way I could even detail the ins and outs of her specific condition in one article. However, what I can do is arm you with broad strategies that will enable you to navigate the tough times ahead of your family no matter what the situation.
I had been a nurse for nearly 20 years when we received the diagnosis of our fetus at 14 weeks gestation, and yet I had never heard of her condition. My husband and I were both scared, but my training and experience had prepared me for what was to come. It is that knowledge and personal experience that can help guide you through tough times. My husband has said on numerous occasions that without my knowledge, he would have been lost, and significantly more afraid.
The basic principles of navigating a critical health issue in your child are the same no matter what the specifics of their disease. Nothing I say can make it go away or cure your child, but these strategies can make life and stress levels a lot better.
Become an expert. Above all else, start to learn as much as you can handle as soon as you receive the diagnosis. There’s so much information that it can feel like you’re drowning with no land, no boat, no life preserver in sight. Be gentle with yourself and learn in stages and from multiple sources, there will be more to learn than you can imagine. Remember that the more you know, the better able you are to help your child achieve the optimum outcomes in all areas. Some key places to start are:
1. Your child’s team of health professionals. This includes doctors, surgeons, nurses, nutritionists, developmental therapists, psychologists, social workers and more. Taking a “holistic”, or well rounded approach, will always take you towards best possible outcomes. Each professional on the team will contribute different things to your child’s outcome, and will be able to provide you with another piece of the information puzzle. They can all give you direct verbal information plus provide you with written materials and direction to further resources.
2. Google. Certainly there’s a lot of information available online, but be careful to make sure you are accessing credible medical information from reliable sources, rather than random articles found through searching. If you’re unsure whether information you’ve found is accurate, ask one of the health professionals on the team.
3. Support groups. Thanks to the emergence of social media platforms, as well as active families, there is sure to be a support group through Facebook or elsewhere that you can be a part of. There are so many great things about these groups, including information and support. With hundreds or thousands of members, they are a wealth of knowledge. Someone in this group might know of new treatment options that you can present to your team, or how to minimize certain aspects of the condition.
Better Expect It!
Expect the unexpected, no matter how stable things might be at any given time. Those stable moments are so wonderful, such a break from the nightmare of dealing with daily tests and procedures. We get to breathe a bit easier, make plans with friends and family, and in general soak up every moment of time with our kids in “normal” settings. We get to sleep in our own beds instead of a hospital cot, and eat our own home cooked meals together as a family.
These are the great times, and the ones we should focus our energy on. They are the moments that give us hope, and the strength to carry on. Yet somehow, somewhere in the back of your minds, if you remember that anything can happen at any time to cause a setback with your child, then navigating it becomes easier. Ok, so sure, you’ll remember to expect the unexpected. But how does that make navigating the disease process any easier? Realizing this can allow you to prepare for the unexpected.
Grab and go!
1. Keep a small bag or suitcase packed and ready to go at all times, and not just for your child. Think in terms of what’s important to have for everyone involved, to last you a few days or enough time to acquire more supplies when you get to the destination. If you had to drop everything and go on a moment’s notice to the hospital, what would you absolutely have to have with you? It’s the same concept as having a pregnancy bag prepared.
You don’t want to be caught ill-prepared in an emergency situation, when minutes or seconds count and your brain scrambles just to remember how to put shoes on. Dig out key items that can stay packed, that you won’t need and can just stay at the ready. Clothes, medications, phone chargers, toiletries and more should be packed, depending on your personal needs. Then when an emergency happens and you are scared and adrenaline is pumping through you, you can just grab the bag and go. Do your thinking and prepping ahead of time.
2. Create a list of important people and phone numbers and provide copies to anyone else who may have to be involved in your child’s care. Post a copy on your fridge or other obvious spot where everyone in the house knows to find it. Keep an electronic copy on your phone’s note pad or even just a printed copy in the car. This way no matter where you are when something happens, you don’t have to panic (as much as without a list). This list should include anyone relevant to your child’s care, such as Disease specialist, family doctor, dentist, pediatrician, social worker, home support providers, specialist nurses, pharmacist, family members and caregivers.
3. Create an emergency plan for your family. Do you have other kids? Pets? What will happen with them if you suddenly have to go to hospital, potentially a long way from home? Which parent will go with the child? How will you get your child to hospital, by car or flight? If hospitalization will be long, can a parent stay with the child all the time or will they need to come back to their jobs? If they must come back home, what can be done to ensure your child has a loved one with them as much as possible, and especially for anything scary or painful?
Part of this plan should include the phone number for emergency notification to the child’s primary physician. This could be a direct line or perhaps you’ll need to have them paged through a hospital operator. Make sure you know exactly how to get a hold of them for emergencies. Giving them and the whole team a heads up that you’re coming will make everything quicker and easier for everyone involved. For example, you could say: “Hi, I need to have my child’s doctor paged to notify them that we are on the way to hospital now because of _____(insert whatever emergency situation you’re dealing with,) and we expect to arrive at _____(insert time.) If they would like to call me back while we’re on our way to hospital, they can reach me at _______ (insert your phone number.)
Become an active member of your child’s team. If there’s ever a place to be the navigator in this journey, this is it. You must literally steer this ship. Your child cannot advocate for themselves and their needs, they need you to do it for them. Now don’t be scared by that, it’s not as daunting as it seems. Very simply put, it just means you hold ultimate authority to direct your child’s care.
Now, that doesn’t mean you can make ridiculous decisions that go against what the professionals are recommending. It just means that you can use the information you have, and the concerns you might have, to question suggestions that the team are trying to make and be part of the decision making process. Don’t forget, you’re the expert on your child and what they can do and what their needs are.
Too often I hear of families feeling forced to do something because that’s what the doctor says they should do. They don’t think they can stand up to the doctor when they think decisions are wrong, and they don’t think they have the right to make suggestions because they’re not the professionals. For example, if the child’s team surgeon tells you that they need to do exploratory surgery on your child, not only should you not hesitate to ask questions, but you should assertively ask as many questions as possible. This in itself is a topic for another article on navigating children’s surgical procedures, as it is too large to cover in one paragraph.
There’s almost always more than one way to skin a cat, so to speak. It’s a truism that holds for the medical world and all its facets. So even if a certain thing just HAS to be done, there’s always different ways of doing it to make it the best possible, least scary way for your child. Don’t be afraid to say “No, she’ll be too scared if you do that. How can we do it differently?” or “I understand why we are doing things this way, but we would like to push her/him in this area. How can we safely do that to see if they’ll tolerate it?”
And lastly, tell professionals when they start talking to you that you want things to be explained in simple terms. They’re mostly interacting with other professionals and so their normal way of talking is in technical terms; they need reminding that you just don’t get it. Anyone can easily get lost in medical jargon, and it can often make things seem scarier than need be.
Self Care and PTSD
Now there’s a concept that every single parent needs to remember, even parents of seemingly “normal” children. But for the parent of a child with chronic diseases, it’s ever more critical. There is absolutely NO WAY you will be able to navigate your way through your child’s disease journey unless you take care of yourself.
In the acute phase of the disease, when either the child is born with or first develops this condition, you will be in basic survival mode. The weight of the stress of this whole new horrible thing will feel soul crushing at times. It will consume every aspect of your life when it starts. There are actual physiological changes happening in you during this time, it’s not just “in your mind”. Your body is trying to cope with this trauma to your system just as if you had physical injuries from a car crash.
As soon as this happens to you, this is when you need to start taking care of yourself in every single way. If you let the chaos and the stress sweep you away, you will end up sick and unable to be there for your child. Setting healthy habits upfront will guide you into the chronic phase of the disease with greater strength and coping mechanisms.
Let yourself relax
1. Decide early on that you will eat regular, healthy meals. Sure the hospital cafeteria has yummy deep fried everything, but make sure to choose the healthier options like grilled meats and veggies more often. Or even better, pack a lunch from home and then it’s cheaper too.
2. Get to bed on time as often as possible. There will be days that things just aren’t right at hospital and you have to stay late, but get home to bed regularly, because sleep deprivation is your enemy.
3. Resume spiritual care as soon as possible, and I don’t just mean religious care. Yes, talk to your pastor and get back to church if that’s your thing. But if it’s not, take time to nurture your spirit in whatever way that looks for you.
4. Rely on your network for support. Spend time with your friends and loved ones. Tell people what’s going on and that you need them. Ask them to visit in hospital or come to have lunch with you if you can’t get away. Knowing you have people to help when you feel weak takes away some of the despair.
Post Traumatic Stress Disorder (PTSD) may have first been coined for usage with soldiers returning from the horrors of war, but it is a condition that has since been studied in numerous other settings. One of those settings is with parents of chronically ill children. It’s a condition you should be aware of and learn the symptoms of so that if you notice them you can seek help when necessary.
The moment our daughter got placed on the transplant list was the first time that I noticed it emerging in me, even though I had other symptoms before that. What I noticed was that when my phone rang, my stomach would sink, I’d feel like I was going to faint and throw up at once, my heart would race, and my hands were cold and clammy. We were perpetually anticipating the call from transplant services. Even though it’s been almost 2 years since we voluntarily removed her from the list due to her health outcomes improving dramatically, my stomach still gets butterflies when my phone rings and so I compensate by keeping it on vibrate.
Solid Foundations – Learning to cope as a family
It’s a sad fact that for many couples, a crisis like this is just too much to handle. They’re afraid and feel lost, they’re angry at everything and fights ensue, and inevitably they split up. Just imagine how scary this time is for your child, and how desperately they need you to work together for them. They can’t tell you that, they don’t even know how. But it is nonetheless what they need.
I know how hard things can be, as we have been to hell and back with our angel. But your child needs both of you to step up to the plate and do what needs doing. You think you’ve got it bad? Your kid’s got it 100 times worse. Make the choice and the commitment right up front, that no matter how horribly hard it gets, that you will both stick with it together and find a way to make it work.
My husband and I have had this conversation many times along the way and from our perspective this crisis that we’ve had to navigate together has brought us even closer together as a couple. We wonder how lonely it must be for couples who split from the trauma. Because (most often) the one other person in the whole world who can best understand exactly what you’ve gone through, is your child’s other parent. They know the utter despair of looking at their child’s lifeless body as doctors try to revive her, they have heard the prayers you spoke to God, and they have comforted your scared crying child while holding your hand.
But even if it just can’t work to stay together as a couple, set yourself a solid foundation of co-parenting that will benefit your child. They have enough to be scared of without worrying that you two can’t support them effectively. If need be, arrange for your social worker, pastor or someone else to help you figure out how to work together effectively for your child.
It might seem impossible to navigate the avalanche of issues and stressors that you will encounter upon learning that there’s a critical health challenge with your child. It might feel like you can’t cope at all. It might feel like you’re totally alone. Yet if you follow just a few basic strategies, it can make a world of difference to you as a parent, but more importantly it can quantifiably change your child’s health outcomes for the better. I hope your journey will be easier to navigate and that your child always feels the support they need to navigate their own journey!
I retired early from a 20 year Nursing career to take care of our daughter, who was born with medical complications. I hope that my years of nursing experience, plus my personal experience can help other families navigate their struggles.