Isaiah’s Story

Dear Parent of a Kawasaki Disease Heart Warrior,

I know how you feel.  I know how scary this all is.

Maybe you have just received the news that your little (or maybe not so little) one has coronary aneurysms, because of Kawasaki disease.  What does that even mean!?  Is your child going to live with this condition for the rest of his life?  Is your child going to live to see his next birthday?

Panic may have set in, but hopefully you have calmed yourself enough to listen carefully as you receive the first set of many medical instructions that will follow.  You may be told that your child needs to start taking blood thinners right away, otherwise he may develop a clot in one of his aneurysms.  A clot in his heart?!  That can’t be good.  Perhaps no one mentions the word “heart attack,” but later on you may realize that this is actually what the doctor is saying without actually saying it.  Fast forward many years and your child’s cardiologist may still continue to use the word “myocardial infarction” (MI) instead of “heart attack” and you may wonder if he does this on purpose, because it sounds less scary, or if he prefers to use proper medical terms to keep things professional.  But perhaps it will bring a smile to your face when upon hearing the doctor say this during one of his appointments,  your 5-year-old laughs and says “sounds like fart” and proceeds to giggle away.

You may be told that you need to start injecting your child twice a day with medication that will prevent the occurrence of “that which shall not be named” — a heart attack.  The thought of doing this may cause a whole new wave of panic to set in.  How are you going to bring yourself to poke your child with a needle not once, but twice each day, for an unspecified number of days?  You have never done this before and you worry that you won’t get it right.  More than that, you may worry that you will be inflicting pain on your child who has already been through so much already.  You saw the way he fought, tooth and nail when they attempted to take blood in the ER.  Will you have the courage to forcibly hold him still and pierce his skin with a needle?  A few months into your routine you may finally be comfortable injecting your child with enoxaparin and be grateful that the insulin needles you use are super thin and less painful than those used for vaccinations.  However, you may be even more grateful that your child has adjusted to this new addition to his routine and despite your worst fears, your child does not hate you for having to put him through this.

There is a good chance that you will become obsessed with the size of your child’s aneurysms.  At each echocardiogram you may watch the screen intently and wish you understood what all the images meant.  When you finally meet with the doctor to get the results, you ask about each measurement in turn and quickly compare to the results you received the last time.  Any slight change in measurement could result in a magnificent ray of hope that things are improving or a devastating blow that they are not.  Eventually, you will learn that there is always a margin of measurement error with these tests and you really need to take the results with a grain of salt.  You never stop hoping for a miracle, but over time, you come to accept a result of “no change” as good news.  I know many veteran KD parents who rejoice at those two words.

At the beginning of this journey you may go through many periods of anger.  Why, oh why did this happen to my child?  He was born with a healthy heart and was thriving.  You may have imagined what his future would be like, but you never imagined this.  Maybe you are angry at God — how could He let this happen to your child?  Maybe you are angry with the doctors — if they had only diagnosed him earlier!  Maybe you are angry with yourself — I should have done something sooner and known that something was terribly wrong.  This is all part of the process.  Let yourself be angry, but also allow yourself to release that anger.  Don’t hold onto it.  Being angry won’t undo what has already been done.  Use the lessons you have learned to make yourself a better advocate for your child, but let go of anger, as it  will only weigh you down, instead of propelling you forward to do what needs to be done.

Through the years, it will get easier, but I’m not going to lie — there may be bad days.  There may be a day that an unusual ECG result prompts an emergency angiogram, that reveals that your child must of had a silent MI (See!  I don’t even like to use the word “heart attack”). There may be a day that you are told that your child needs to undergo bypass surgery, to relieve the blockage that is developing in one of his arteries.  There may even be a day when you wait anxiously for 10 long hours as your child undergoes open heart double bypass surgery, only to be told by the surgeon that unfortunately, only one of the grafts took and the longevity of the other graft is uncertain.  But as hard and as awful as those days may be, you will get through them.  You will get through them moment by moment, but you will do it.

Many years may pass since you have had one of those bad days.  In fact, you may reach the point that you have had so many good days, that those bad days finally start to fade and you don’t feel the gravity of your child’s situation as much as you once did.  But sometimes it hits you out of nowhere.  Maybe it is reading another mom’s post, whose child’s story reminds you of your own child’s story.  It may be you reviewing at an old angiogram report and being reminded of how giant and scary your child’s aneurysms are.  Or maybe it is a purposely heart-wrenching commercial for the children’s hospital that your child is a patient of, that pushes you over the edge that day.  You may find yourself crying uncontrollably and may feel embarrassed or maybe even defeated.  You need to be strong and you have been strong. You can’t ruin that by crying now.  Or maybe you are afraid that your crying is a sign that you have lost hope. But you know what?  It’s okay.  Let it out.  There is no shame in allowing yourself to feel scared, anxious or sad.  Feeling those things is what makes us human and gives us a reason to continue being strong for our kids.  So cry if you need to.  Sometimes it is just what you need to face the next challenge that may be waiting.

I know that as a KD parent, you often feel a bit out of place.  Most people know that congenital heart defects exist, but acquired heart disease in children is not something that the average person has heard of or can even comprehend.  You may spend a lot of time trying to explain the entire situation to people, only to have people say “but he will grow out of it, right?”  Were they even listening!?!  You don’t really fit in with the congenital heart warrior parents, because even though their children may face some of the same issues, our situations are different.  Many of them have already seen their child go through multiple open heart surgeries and perhaps you feel that your worries that your child may one day have to go through heart surgery seems minor or insignificant in comparison.

Occasionally, you may even feel guilty about how much you worry about your child.  During your visits to the hospital you may be reminded of all the children there who are fighting for their lives.  Children who have not left the hospital in months or maybe have never experienced life outside those walls.  It may make you feel ashamed that you spend so much time agonizing over your child’s health, when you should be rejoicing that he is still here.  But again, it’s okay.  Yes, we must be thankful that our children are still here and we must sympathize with those parents who are climbing higher mountains than those we face.  However, our children are still ours and they are still fighting a fight whose outcome is yet to be decided.  There should be no guilt in worrying about the thing that is most precious to you.  You are allowed to worry about your child.  It does not mean that you do not respect the battle that other children are facing, it just means that you are closer to understanding it that much more.

I know if you are just starting on this journey that you may feel very alone.  There is a good chance that you had never heard of Kawasaki disease until your child was diagnosed and likely don’t know any other families that have gone through it.  I was in that same situation.  Isaiah is fortunate enough to have an amazing medical team, who are not only knowledgable and experienced, but very accessible.  However, speaking to medical professionals is not the same as speaking to another parent who has been where you are, thought the same thoughts and worried the same worries.  I was lucky enough to find another KD mom online, whose son coincidentally had the same cardiologist as my son, but was also amazingly supportive and kind.  She was a tremendous support to me and allowed me to go through my phase of obsessive worrying and aneurysm size comparison, knowing that I would find stability in my own time.

There is so much more I could tell you — lessons about giving your child more independence, ways to manage uncertainty and how to help the whole family cope. But I am still working through many of these issues myself and you will need to find your own way, in your own time, as part of your own family’s journey.

I know you are still scared.  And again, it’s okay.  In time, you will find your “new normal” that everyone refers to.  In time, you will find ways to cope with the anxiety you feel every time you think about your child’s diagnosis.   In time, you may learn of medical advancements that result in better medications and intervention options for your child.  In time, you will see that your child is amazingly resilient and is far braver than you could have ever imagined or hoped for.  In time, you will realize that the strength you need was there all along.

I know how you feel.  I still feel it sometimes too. But I know, it’s okay.

Love and hugs,

Carin Lin

Mom of a Kawasaki Disease Heart Warrior

P.S. If you are interested in connecting with other parents of KD children with aneurysms, you are invited to join the Facebook group I started with one of my fellow KD moms.   The group consists of many amazingly supportive parents, from varied locations and walks of life.

**Reposted with permission from Isaiah’s Kawasaki Disease Journey.**