Making the Decision to Possibly Harm Your Child in Order to Help Him

I woke up this morning with a tightness in my chest, my head throbbing.  I didn’t have to guess at the cause, I knew it. All night Isaiah had been tossing and turning, and in those few moments when he was motionless I would put my hand on his chest to make sure he was breathing.  The epinephrine making him restless, the triple dose of Benadryl making him tired.  Several times in the night he woke up like a traveller lost in the desert croaking for water.  Worried I would not be there when he needed me, I only ever half-slept.  I don’t know what added to the anxiety the most, googling anaphylactic shock, or googling the side effects of epinephrine

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This wasn’t the first time. The first time he went into anaphylactic shock from allergy shots was September 12, 2012. You can read about that here.

We knew it could happen.

His doctor used to joke that if anyone was going to be allergic to something it would be Isaiah. Yet, the understanding was, it is extremely rare, although possible, to have an anaphylactic reaction to allergy shots. Rare. But possible. Rare. But possible, three times?

I’ve often said Isaiah doesn’t like to follow the rules. This time, he really broke them. The rule is, wait 20 minutes to make sure you are OK, then leave the office. We follow that rule. We actually stay 25 just for good measure. So imagine my surprise when as we are walking into Grocery, a 20 minute drive from the Doctor’s office, Isaiah says, “Hey mom, look at this, as he’s scratching at his side.” I took a deep breath, I looked, and sure enough a little patch of hives were cropping up. I pulled him aside and proceeded to check other body parts. I was not disappointed, hives were appearing before my eyes, on his neck, on his arms, on his back and his face. I didn’t even bother with his legs. I calmly told him we were going back to the car. For one of the first times, I had left the Benadryl, the epi-pens and my cell phone in the car. So once we ran back, he popped a Benadryl, it’s practically candy to him. I called the Doc. The response? We had to come right back. “Are you sure?” “You need to come right back.” The nurse said a little more forcefully. Isaiah began to freak. I made the mistake of panicking the last time this happened, and I think I may have damaged him a little. But in between begging not to go back and me trying to calm him, and drive without panicking, he informed me of two things, and I witnessed one other. He was getting tired, he was getting queasy and he was beginning to cough. Not only did we have the trifecta necessary to qualify as anaphylaxis (when you add in the hives), we had one more, a superfecta. Man is it hard to stay calm when the end result of untreated anaphylaxis is death.

We arrived safely at the Doctor’s office. Isaiah was calm, this place is a second home to him, and he is always the life of the party. After checking his vitals the anaphylaxis was confirmed, and the treatment is epinephrine with a “let’s help it out” mega-dose of Benadryl. I have to admit I couldn’t really read the Doc. I mean, he seemed concerned to me, very calm with Isaiah and no-nonsense but he also seemed determined. The allergy shots were working.

The boy who was once so allergic to cats that being at my mother’s house for more than 20 minutes was always a crapshoot, could now stay there for hours on end with relatively mild symptoms. They were working. They were working and although this was his third anaphylactic reaction, we dealt with it, he was fine and if I felt up to it, he wanted to continue the shots. How could I say no? These shots were curing my son’s asthma. My choices: Anaphylaxis I was aware of and could treat because of my diligence? Or dying on a soccer field from an asthma attack at 15 because he’s too cool to carry an inhaler?

On the ride home, Isaiah was happily singing in the back seat. The kid he always is, almost completely back to normal. Chattering non-stop, singing non-stop. Admittedly, feeling a little tired, and wishing to watch a movie when we got home. I think he was milking that one a little. This boy who I describe as a rambunctious, fun-loving, thrill-seeking, gun-toting, fire setting boy. The boy who has never broken a bone, needed stitches or even had to visit the hospital for an injury, is brought to his knees by two tiny injections. The tears rolled down my face. My baby boy. My strong boy. Strong? What exactly did that mean? How can he be strong, an hour ago he was so fragile. His face ashen as his blood pressure dropped, his body failing to do his bidding as the epinephrine worked through his system.  That realization, that without the miracle of modern medicine, my son would not have even survived to this day, let alone this day.

It is at these times I reach up.  I remind myself that God has a plan for Isaiah.  I believe he will do great things. But then I am plagued by self-doubt. I think of all of the families who have lost a child. So many, so many I actually know. Didn’t they think that? Didn’t they think not my child, my child is destined for something bigger? Then I wonder if that destiny is to teach us something, a lesson to be learned if his time comes sooner than we expected.

I can’t go there. I can’t. I have to leave that alone. I can mourn for the people I know who have lost their little ones, I can mourn for the people I know who’s little ones are struggling with life threatening diseases. Isaiah does not have a life-threatening disease. He has a life threatening condition. There is a huge difference. I have to suffer through one or two sleepless nights. I have to be diligent, always. I do not have to assume that his end is in sight. I am thankful. I am thankful that he is mine, and that I will do whatever it takes to ensure his safety. I am reminded, oh how I am reminded, that life is a gift.  Please, do not read that as a cliché. Life is a gift people.

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In the morning I looked at him differently. I hope this will stick. I looked at him with new eyes. I looked at him with complete acceptance, with unconditional love and with pure joy. Ask anyone, I doubt they will ever admit that they take their children for granted. I never would have said I did. Yet the big picture is different. The big picture is this, no matter how much they annoy you, test you, grate on your every nerve, they love you, no, they worship you. They will learn everything that is good about life through you. In them, you have the ability to see the world through fresh, imaginative, funny sparkling eyes. Through you, they will understand security, love and acceptance. Life does not have to be hard, life does not have to be a struggle.

Every morning you wake up and you have a choice, you can simply tolerate the people you love, or you can love the people you love.

It is easy today, and maybe tomorrow, however, I know soon the memory of my fears will diminish.  Then I will have to make a conscious decision, I will have to remind myself, that this boy who literally swings from the rafters, and does flips off of the counter-tops, this boy who sets fires “by accident” and rides his bike like a daredevil, this boy is fragile.  Life is fragile.  And I will make the decision to smile, to take a deep breath, and to love every minute of it.

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You are safe even when I am scared

How do you help your child feel safe when you are scared?  I had a lot of time to think about that today as we experienced our second anaphylactic reaction to allergy shots in less than two months.  If you read my post Would you know anaphylactic shock if you saw it? you would know the story of our first experience, and how scary that was.   Today, what I thought was a mere impossibility, happened again.

Of course I am a strict follower of the rules.  We wait 20 minutes, we check the arms.  It’s been pretty good for a while.  Today I packed up our stuff, got ready to go, said let me see your arms, and my heart stopped.  Staring at me was that same angry set of hives I saw two months ago.  I took a deep breath, and Isaiah said “what? is there a hive? mom don’t tell them!” he began to panic, “Please mom!  Don’t tell them.”  I had to tell them.  My very calm, humorous, child came dangerously close to having a tantrum.  I had to carry/drag him back to the shot area to have them check him out.  Now given, the shot nurse is not the most patient.   But he loves the Doctor and the other nurses.  However, he remembers that epi-pen.  Why this kid can get two allergy shots at a time every two weeks, but dreads the epi-pen?  Well…. I think it’s my fault.  How do you not panic? The last time this happened, I tried my best to put on that happy face.  But the epi-pen is used to prevent a FATAL allergic reaction.  FATAL.  Fatal.  What happened to my child would have killed him before epi-pens.  I didn’t cry, I didn’t scream, but I asked a lot of questions, and he heard me, I think I thought he was so ill he wasn’t listening.  But I was wrong, he was not just listening, he was focusing on me.  I was supposed to be his rock!  Later, I thought he was fine with it.  We discussed how important it was to tell me when he wasn’t feeling right, I thought we were good.

Allergic Reaction, 2 hours after allergy shot.
Allergic Reaction, 2 hours after allergy shot.

What was I thinking?  He’s seven.  I’m his mom.  Panic by the person who is your world, your protector, is never a good thing.  I don’t think he’s ever seen me panic.  He’s seen me happy, sad, angry, but panic?  The first time he saw panic (when he was cognizant) was when he had that last reaction.  Now he has a point of reference.  Now he has a set of precursors that lead up to an event.  Mom checks arm, takes a deep breath, goes to the nurse, bad things happen.

Today I learned a lesson.  Isaiah is safe.  I need to find a new way to deal with this situation or he will become afraid of even walking in the door of the Doctor’s office.  Or worse, he will not feel safe. I told him on our way home, as I asked him if he was OK one more time and he said “Yes Mom”,  that he didn’t have to worry, that God was always watching out for us.  I know for sure God has big plans for him.  He said, well you were worried.  I told him, I didn’t have to be.  I made a mistake,  Dr D keeps you safe, God keeps you safe.  I know you will be just fine, and you are fine, see?

Allergic Reaction 7 hours after allergy shot!
Allergic Reaction 7 hours after allergy shot!

I have made a resolution.  I will make this whole thing fun somehow.  I will joke about it, be light-hearted about it.  I will say “Can you believe it? Your silly body is mad at that shot again!” “How silly is that?”  I will do everything I can to make my child feel safe.  I will do everything I can to keep him from worrying about grown-up things until he is a grown-up.  I will trust myself, and I will trust God.

Helping your child with special needs feel safe

Look folks, having a child, and especially a child with any special need, is going to be the most challenging thing you will ever do.  Hopefully it will also be the most rewarding.  The thing is, part of that challenge is constantly being your child’s advocate.  If you don’t advocate for your child, who will?  You need to be on top of everything.  I know it’s hard, I know we’re so busy with all the things life brings, but this is not a choice!  Think how scary life is for a child who could start having breathing problems at anytime.  Or a child who is afraid to eat things because he has had allergic reactions before and he doesn’t know for sure if the food is safe.

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Making your child feel safe is no one’s job but yours.  Do you think that your doctor actually has enough time to worry about every little thing your child is involved in?  Do you think he knows what questions to ask you if you haven’t been paying close enough attention to notice the symptoms?  What about your child’s teachers?  Should they be the ones to make sure your child is eating safely, or carrying his inhaler or epi-pens?  And how safe do you think your child will feel if no one is supporting him in this scary world.
The only person who can make your child feel safe is you.  Maybe you’re shy, and it’s hard for you to speak up.  Well now you have to get over it.  Someone’s life is in your hands.  Maybe you’re busy, you have lots going on, lots of kids to worry about.  Well  now it’s time to find the tools you need to help organize your life.  Your child’s life depends on it.
I know this sounds harsh, but I’ve been there.  We have changed our lifestyle and our priorities to insure that our child is living safe and feeling safe.
I don’t think that you can quell your child’s anxiety 100% but don’t you think they will feel so much better if they know you will always be there and you have paved the way for them to have a safe experience wherever they go?

Making the tough decisions

Isaiah with his best kitty Cisco, before we found out he was allergic to cats and had to find new homes for all 4 of our cats.

So the thing about allergies, both food and environmental, and asthma, is in order to help your child get through them it most likely means making a lot of changes in your life.  With food allergies, it might mean you only get your favorite foods when you are out without your child, and you certainly won’t be able to have them in your house anymore.  With environmental allergies and asthma most likely you will have to dust-proof your child’s bedroom if not your house.  Here’s the worst part, if you discover your child has asthma or environmental allergies and you have pets, you will have to determine if your child is allergic to those pets.  A child’s immune system is not fully functional until they are two, so the fact is your child might seem to be doing perfectly fine with your cat or dog, and then you have them tested at 2 and discover he’s allergic.  What do you do now?  How can you choose between your pet and your child.  Maybe you have had your pets much longer than your child 🙂  We  had 4 cats when we discovered Isaiah was allergic at 2.  Just by looking at him, you would never have known he was allergic, he didn’t really seem to have any symptoms, I mean he did have eczema, but we figured that was par for the course with food allergies.  The doctor explained that Isaiah would probably develop asthma no matter what, but as long as he was living with cats, he would be guaranteed to develop severe asthma and respiratory problems.  Let me ask you, would you be willing to gamble with that knowledge.  It was one of the hardest decisions we have ever had to make, 3 of the cats were in our family for 6 years at the time.  We had no choice, we began looking for homes for them.  It took 6 months to find homes for all of them, and we had to enlist the help of my family for foster homes, but we didn’t have a choice.  Our son’s health depended on it.