Unraveling

It's been about two weeks since A's really bad reaction but today was the day I unraveled.  I think I'm masking the pain by ignoring it and trying to fill my life with things to make me forget.  I've been feeling numb and I see myself subconsciously distancing myself from it all.  It's like I'm getting ready to say an inevitable goodbye.  But as Mike says, "There is no way to prepare to say 'good-bye' to your child."

Ugh.  Today was a bad day.  A was sick with a fever.  We are always on high alert when she gets sick because her immune system is usually maxed out trying to fight off perfectly normal things like food and her own skin.  After work today I come home and play with her a bit before dinner.  She wants to play "Horsey"  but I tell her to eat dinner first.  I feed her the corn pasta that my mom made for her.  About 30 minutes later, A is coughing and wheezing so I get her nebulizer ready thinking it is related to her flu/cold.  Halfway through the treatment, she says that her tummy hurts and that she has to throw up.  My mom and I take her to the bathroom as she begins to vomit.  I glance at my mom who is beginning to shake and cry.  I'm reminded just how traumatizing it must have been for her to hold a listless A in her arms as she waited for help to arrive and I think how cruel it is that she has to watch this again. 

A throws up her pasta.  It's thick and I can see that she's struggling to breathe as it continues to pour out of her mouth.  I preform mini-Heimlichs to help eject the food and I'm realizing that I'm holding my breath as I watch because I don't want to breathe if she can't.  She's choking on her vomit, and all I want to do is cover her mouth with mine, puke and all, and breathe life into this child.  After everything is out, we struggle for a few seconds wondering if we need to administer the epi and get started on our way to the ER.  But we look at her and she looks at us and sees the tears streaming down our faces and says, "Don't cry. I'm ok now."  We finish her neb treatment and I hold her close as her eyes flick from my face to grandma's with such a profound concern for us because we are sad.  She says, "I'm sorry, mama."

God help me.  

What made her react like that?  Was it the new pasta?  The flu?  Cross contamination somewhere?  

I dream about what it might be like to have a healthy child who can be sick, throw up, and get on with life without a host of people watching and wondering if this is the beginning of the end.  I'd like to know what it feels like to wipe her mouth, send her off to bed with some medicine and hope she feels better in the morning.  Instead I keep vigil near her side through the night in case I made a bad judgement call and she needs more help than I gave.  

A asked me to hold her like a baby while she slept tonight.  I would have pulled down the moon had she asked for it.  I sang her a lullaby and, in the dark, I let myself unravel.  

This is the valley low.  The raw side of life.  It keeps me pinned to the floor at times but, surprisingly, this pain also tremendously deepens the good times in my life.  Because if life is short, we've got to make it count.

Yesterday A went into anaphylactic shock.  Unfortunately, this isn't anything new for us.  However, this episode has left an indelible mark on our lives.  Even though we know that A's life is fragile, and even though we prepare for the worst, we are never ready to see A's life hanging in the balance.  Writing about our experiences help me sort it out and it acts as a catharsis and hopefully from what I write others can find hope, strength for their own trails and, most importantly, wisdom for how to treat anaphylaxis. 

Friday, January 18th

2:00 p.m.-  I never think of A and G while I'm at work because I know they are safe with grandma and because I'm very busy with work.  But, on this day, my mind briefly thinks about their safety and I have the urge to call my mom to see how they are doing.  Before I could do that, some other task takes precedent and I soon forget to call.

2:30 p.m.- I receive a call from the pediatric emergency ward at Northwest Community Hospital, but since my phone is on silent, I do not answer it. 

3:40 p.m.-  I finish grading some papers and ignore the constant nagging feeling that is telling me to go home.  Instead I chat with a co-worker about my weekend plans and listen to the laughter of my colleagues floating through the halls.

3:46 - I get a call from Mike and he is eerily calm.  He asks me what I am doing and if I am on the way home.  I'm half listening as I continue working until he says that he is at the hospital with A.  Before he can tell me details, I've already hung up and am flying out the door.

4:15 - I make it to the hospital and run up to the room A is in.  She is sleeping peacefully and it looks like the worst is over.  That is when I sit down to hear the whole story.  

Around 1:30 p.m. that day, A asked my mom for a lollipop.  My mom gave her one but insisted that she eat some cereal before she ate the lollipop.  So with one hand grasped around the candy, she began to eat her cereal.  She finished it and asked for another bowl.  Grandma gave her another helping and turned around to wash the dishes.  She noticed that A was very quiet and so she turned in her direction only to find that Ava was vomiting into her bowl.  My mom consoled her and brought her down from the chair.  A continued to vomit on to the floor.  They walked into the bathroom where A vomited more into the toilet.  When it seemed like she was finished, my mom asked if she was okay, but there was no answer and instead the lollipop dropped from A's hand as she lost consciousness.  

My mom quickly caught her up in her arms and began frantically looking for her phone.  However, during this time, my mom forgot all protocol and did not administer the epi-pen,  In fact, she was in such shock that she did not even remember how to use her phone.  She remembers dialing "311", " 611", and other numbers before she calmed down and was able to call for help.  After calling the paramedics, my mom took A's limp body and ran outside hoping that someone could help her.  All the while, my mom was trying to resuscitate A by screaming her name, slapping her leg, and giving chest compressions.  During that whole time, A's eyes were open and unblinking.  And, so, my mom thought A had died.  

She recalls crying out to God to save her grandaughter.  After what seemed like hours, the ambulance finally arrived.  She passed A off to the EMT's who quickly felt for a pulse and detected one.  They asked my mom questions about what happened but my mom wasn't able to produce an intelligible sentence from the shock of what had just happened.  She was not allowed to follow in the ambulance because she had Gwen with her.  She did see them administer an IV and begin giving A oxygen.  All the while, A was still unconscious.  

Mike called during this time and was able to talk to the EMT's.  He told them about her food allergies but they were more concerned about medication allergies. My mom also handed off A's emergency bag which contained her epi-pens.  The EMT's noted that A had epi-pens but still they did not administer one.  Later, when asked by the ER doctor why they hadn't given her an epi, the EMT's stated that they did not see visual signs of anaphylaxis.  The doctor reminded them that physical signs are not always there but from the clues, such as Mike stating that she had food allergies and seeing that A had epi-pens, should have alerted them to the seriousness of the situation.  

Halfway to the hospital, A woke up by herself crying and calling for me.  After testing her blood gas level, they found that her carbon dioxide levels were very elevated and her blood gas level was low indicating that she was not oxygenating properly.  

A was taken into the ER and that was when I received the missed call from the hospital.  Mike arrived to the hospital shortly after and found A asleep. He woke her up to tell her that he was there but she was unable to recognize him and instead cried out for me again.  He kept telling her that he was there but she was disoriented and could not understand what he was saying.  That is when Mike decided to call me to tell me A was in the hospital and that she may have suffered damage from the lack of oxygen.  

After I arrived at the hospital, A woke up but did not acknowledge me.  She would only answer all questions with "no" and was irritable and clingy.  Two hours later, she awoke from her nap able to communicate and showed signs of knowing who we were.  She received several blood tests and x-rays and even the epi that was not given when it should have been.  The doctor then decided that she should be transferred to Lutheran General's ICU where her pediatrician was and where she could receive a higher level of care.  A was alert throughout this whole time and was chattering away with the nurses and the transport team from Lutheran.

By the next morning, A was very well and back to her self so we were discharged to go home.  When speaking with A about what happened, she could not remember anything apart from eating the cereal.  She does not even remember getting the epi-shot which was done when she was seemingly alert and back to her self.  Everything from yesterday was lost to her.  I'm thankful for that and wish we could have that same type of amnesia.  

My mom and dad are still struggling to deal with the traumatic memories from yesterday and Mike and I are finding ways to come to terms with how serious A's condition is and how fragile her life is.   We are thankful to God who, in my mom's words, "showed mercy to me as I cried out pitifully to him."  There is no other explanation why she did not progress further into shock without the epi and why she regained consciousness herself.  

What breaks my heart the most is that she woke up in an ambulance all by herself without Mike or me by her side.  I'm sure she was so scared when she was met at the doors of the ER and wheeled in without us and when she was surrounded by doctors and nurses without her parents in sight.  

After feeling better today, we took a walk through the halls of the ICU and we passed by a room with a crying baby.  There was no adult in the room.  A kept asking us why the baby's parents weren't with him.  Later she mentioned that I was in the ambulance with her and so I let her believe it.  If she can't remember anything anyway, I'm glad to let her remember it the best way possible. 

Friends, when faced with someone experiencing a severe reaction from food, please do not delay in giving the EPI.  I know it is scary.  I know it sucks.  But it will save a life and that trumps everything else.


Just before writing this post, I went into the bathroom and something in the garbage can caught my eye.  What did I see? Her red lollipop-the one that dropped from her hand as she lost consciousness.  I took a picture to remind me how quickly our lives can change and how much we should cherish what we have.  And although sometimes I feel like this:

God are You listening?
Please hear my cry
I don't really believe You're more cruel than You're kind
But I'm getting tired of repeating this line
That the faithful never survive

I'm thankful that most of the time I end the day like this:

Yes, I know You are great
That You're a good God, and You are love
How much more can I take to undo the damage that I have done?
Please conquer these demons and the darkness inside
Shine Your light on this poor heart of mine
Maybe my faith will survive
Maybe my faith will survive
Maybe my faith will survive

Thanking God for the good times and the bad which guide our hearts, evermore, to Himself.

No title

It really was a perfect beginning to the day.  The girls woke up giggling and we got to spend extra time cuddling and slowly waking up with no where to rush off to.  A and I were going to a ballet that day.  We were invited by our good friends and we got ready at a leisurely pace while playing with the baby.

I wanted her to wear a pink dress with a multicolored tutu because I thought it would be so cute to have her dress like a ballerina especially because she was so confused as to what we were actually doing.  "Am I dancing on the stage?...Oh, then are YOU dancing on the stage?" "No, A, we are going to watch professional ballet dancers.  We will be the audience."  "Ohhhh, I get it!"

Of course we took a little too long getting ready and breakfast became a mad scramble to get food down everyone's throats.  I was slicing cheese and eating it with one hand while feeding the kids.  I think that's when it happened. I remember touching her spoon with the hand I touched the cheese and I hesitated for a second before just going with it.  It would probably be okay because my husband and I had just talked about how A was going to have a good year.  She hadn't had a reaction in months and was probably getting stronger and would soon grow out of these stupid allergies.

But that's not how it works.  You don't just wish away anaphylaxis.  No, you treat it like the nasty thing it is--you keep it far far away and you do everything in your power to never let it get the best of you.  But I let my guard down that day.

So, she must have touched that spoon, that touched my hand, that touched the cheese, and somehow that trace amount of milk protein got into her system.  It presented as a stomach ache on the way to the ballet and, in retrospect, I know I should have detected how "off" it was that she kept complaining about her tummy.  When we got to Ravinia, she greeted her friend feebly and then asked me to carry her in.  We found a bathroom and tried to go potty thinking that would clear it up.  Then she started to cry and asked me to take her home.  Instead of listening, I asked her to try and tough it out and told her that she would have fun if she just calmed down.

Things quickly spiraled out of control and before I knew it, I was holding a very sick child in my arms.  We barely made the 40 second walk to the nurse's station and I knew things were really bad when she began flopping around, bucking back, screaming for air, and turning blue.  The nurse wasn't convinced it was an allergic reaction and tried to give her benadryl.  By this time, I knew A needed her epi. I took it out to give it to her but the nurse suggested we call 911 because it would only take a minute for them to get there.  All the while A was fighting and struggling to get in a breath.  I remember her blue lips and the gargles coming up from her throat. Thinking back, I can't believe I listened to the nurse.  Why did I sit there powerless watching my child slip away when I held her medication in my hand?

I listened because I thought she was the expert.  She was the medical professional, after all.  But the truth is, her misstep could have cost me the life of my child.  Thankfully the paramedics got there in time to administer an epi and a neb but I still shudder at the thought of what could have happened.  More importantly, I wonder what A must have been thinking as she stared up at me in terror expecting me to help her but instead of seeing someone she could trust, she just saw fear.

It's so strange how scared people are of this medication.  I'm not sure if it's denial or second guessing but it's like no one wants to ever use the epi.  Certainly not bystanders and not even medical professionals.  If there's anything I can do to help A, it's to inform the people around her (and convince myself) that it's okay and good, in fact, to use the epi.   Don't be scared.  The worst thing that could happen is that the person didn't need it.  And the best case is that a life is saved.

Friends, if you encounter someone having anaphylactic symptoms don't hesitate to use the epi-pen.  I promise you won't regret it.  You will, however, deeply regret the hesitation that costs someone his/her life.

That pink tutu dress is now bloodstained from the different pokes and prods and is sitting in the laundry room ready to be cleaned.  But maybe I'll just keep it stained for a little bit longer to remember how next time I have to be stronger and more ready for this battle.  Anaphylaxis, you will NOT win.  This mama is not going down without a fight.

Healing

I think I'm broken.  No, actually, I know I'm broken.  But the crazy thing is, I can go days and days, even months, without revealing the cracks.  Yet, as with all things broken, sooner or later the cracks give way to fissures, the fissures to chips, and eventually the whole thing shatters.

Usually I know what I'm going to write about.  I'll get epiphanies in the middle of doing things.  An idea will come out of nowhere and very naturally form thoughts which give way to words and soon whole paragraphs are penciled in to the imaginary notebook I keep in my head.  Such is not the case today.  Today I write with no planned agenda and, instead, because I just need to.  Because somehow between the words in my mind and the typing of my fingers, it comes together and I see the big picture; I see hope and the healing begins.

So, I'm utterly broken today.  I put up a good front, even to myself, but what I did today gave me away.  I stood at the doorway of A's room and peeked in to see that she was just about to drift off to sleep.  I could have walked away knowing that she'd be off to dreamland and I would be off to "mommy recharge" time but instead, I walked in, bent down, and I kissed my daughter and whispered, "I love you."  Her eyelids fluttered open and with a smile, she said "I love you, mama," before closing her eyes for the night.

Now any parent knows, you just don't do that.  NEVER, EVER, EVER wake a sleeping child.  EVER.  It's the cardinal rule and you're not officially a parent until you've broken the rule and have seen the consequences and THEN have added that as number one into your parent handbook of rules.  This story could have ended differently.  She could have bolted awake, realized that she was about to fall asleep without (gasp) mama next to her, and that would have been the beginning of the longest night ever.

But, no, I kissed her and whispered, "I love you," and broke the sacred rule because of this-I am scared it might be the last time she hears me say it and I want her to be awake for it.

Okay, if you've been reading my blog, you know I talk about death a lot and probably think I'm a morbid person.  And if you know me well, and know that I'm a believer, you're probably wondering (in the very back of your head, admit it) if I have any faith at all.  You're not wrong to wonder that.  Sometimes I wrestle with it myself.  In the end, I know where A will go and who she'll be with, but I wither at the thought of my life without her presence.

When you have a fragile child, there are good days and bad days.  There are really encouraging days and incredibly discouraging days.  There are ups and downs, smiles and tears, victories and defeats.  We learn to take them in stride, to be "strong" and force our faces to betray our feelings.  We put up fronts, blockades, walls because we're afraid to "go there" with anyone and we don't want to subject anyone to our darkest moments.

But the brokenness still comes.

At times it's when we least expect it like when we hear a really beautiful song or when we have a moment of quiet while taking a shower.  And sometimes it builds and builds and we know we're going to erupt so we run to our hiding places and let all the anxieties/fears/darkness run its course through weeping and prayers...And sometimes we remain stuck in the pit of despair for moments or days or even a lifetime.

I'm learning, though, that brokenness is good.  It really is.  It's a reminder that you can't go at it alone.  We were NOT meant to walk this journey in solitary strides.  No, we're meant to walk with others; we're designed to spur each other on; and we thrive from finishing together.  But above all, we are meant to love.  Love accelerates healing.  In fact, love conquers all.  Even a broken heart.  

The very redeeming part about today's post is that, in my moments of feeling shattered, healing has found a way into the crevices of hurt.

Someone once told me that living with food allergies was a "lonely road that you walked alone."  Redundant, I know.  But I think it was to reiterate the absolute isolation that comes with a disease that no one knows what to do with.  I believed it for the longest time, but I'm thinking about changing my mind.

A few days ago, we visited A's allergist for G's allergy tests.  Out of habit, the Dr. took a look at A,  and commented on how beautiful her skin looked.  We talked about her progress and we got excited together about how she hadn't been hospitalized in the last FIVE months!  And then he asked about what A's wish was for "Make A Wish."  Oh yeah...HE was the reason we were granted a wish.  Dr. D took the time to play phone tag with the foundation in order to put in his recommendation.  We continued to talk about my vacation with A and he reminded me to take all her life saving medications/equipment with me.  He expressed his fear of her being so far away from her hospital but reassured me that I would know what to do to save her life in an emergency.  I had forgotten that there was someone else that feared for her life, worried for her safety, and dreaded the news of another reaction as much as we do.  We are not alone.

Days before that, I received a call from an old friend. Her baby was diagnosed with a severe nut allergy and with a trembling voice she called me to talk.  We covered this topic and that but, more importantly, we found companionship for this lonely journey.  Although I didn't tell her anything new, I knew that being available to talk and to share was the beginning of conquering the demon of hopelessness.  We can be agents of hope.

Last Tuesday, my friend came over with her kids and we fed the kids hotdogs because A and her son, both with food allergies, could share this meal along with the other kids without feeling left out.  We talked about parenting, apart from food allergies, and ended with her lovingly praying some much needed life-giving words over me.  Love conquers all.

Today a friend and I spontaneously decided to take our girls to the city for some mama/daughter time.  We had such a great time watching the girls play and enjoy childhood.  We went to the Children's Museum and watched them run from this exhibit to that exhibit lost in excitement.  We fed them lunch on the stairs and made a huge mess and washed their hands a billion times because we're germaphobes like that.  We went to Del Seoul and Molly's and the three of us enjoyed cupcakes while A had her special cookies.  It was memorable. But on the way there, I shared about how guilty I felt that I hadn't put too much effort into this year's birthday party due to our Hawaii plans.   I told her how I tried to make every party special because I wasn't sure how many birthdays I'd have left to celebrate.  And with mascara running down our faces from the sudden influx of tears, we shared a moment of humanness, vulnerability, and friendship.  Yes, we're made to walk together.  

Because, you see, life is short and unpredictable and we have a lot at stake-all of us.  We are vulnerable, we are weak, and no one is exempt from disappointment, failure, devastation, and life-altering moments.  The value of walking together comes full circle when we not only experience life's really good moments together but sit silently while someone unravels before our eyes and we cease our useless words and forbid a single judgmental thought.  Instead we sit and we wait and we cry and we shoulder the other's pain.  

This is solidarity.  This is love.  This is the gospel. 

And lastly, my very best example of a love that powers through despair and leaves behind hope.  "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."  Romans 8:28

No we are not abandoned.  He is with us in all things, wiping away our tears, chasing away fear with his perfect love, and filling our temporary lives with an immeasurable hope of the things to come in eternity.  Above all, he is fashioning together all things (even tragedy) into something beautiful, something good.  If that doesn't bring healing, not much else will.

"Lord my God, I cried to you for help, and you healed me...weeping may endure through the night, but joy comes in the morning." Psalm 30:2,5

Don't Break My Heart

"Don't break my heart."

We use this phrase pretty frequently in our household.  Before kids, Mike and I used to say it to each other when the other was sad.  When I had a bad day and I was feeling down, he would say, "E, don't break my heart."  Or if he was visibly troubled by something, I would say "Don't break my heart, M."

Of course we didn't know what it truly meant to experience a broken heart.  Our problems were fairly petty.  Fast forward 7 years and now we have two kids.  We still use that phrase but this time we can feel the fissures and cracks that a broken heart has.

When A began showing signs of allergies with open, weeping sores all over her body, we would look at her and say, "You're breaking our hearts." 

Then when she began having reaction after reaction after reaction and had to be hospitalized again and again, we thought, "Our hearts can't take it."

And when she went into anaphylactic shock right before my eyes, I thought, "A, my heart feels broken."

These are all poignant reminders of very sad times.  But, surprisingly, it's in the lighter moments of life that I think about this phrase and wonder if my heart can take it.

These are two such moments:

1)  Once, G and I were laughing and cooing at each other and I looked up and saw A hiding behind the closet looking out at us with wistful eyes and a shy smile on her lips.  She wanted to be a part of that moment, but instead she felt like an outsider looking in.  How hard it must be for her to share me.  How difficult for a 3 year old to understand that when a new baby arrives, mama's heart grows instead of replaces.  How scared she must feel that things around her are changing and she's helpless to resist it.

2)  A is so used to not being able to eat the "normal" things I take for granted every day.  So when I nonchalantly bite into a brownie or a piece of cake I sometimes catch her watching me eat.  Her eyes will eat whatever it is I'm having and I see her lost in her imagination as her little mouth, unknowingly, forms into a little "o" and then slowly licks her lips and gulps down the saliva that's pooled in her mouth.  And if she catches my eye, she asks, "Is that yummy?"  Of course I always lie and tell her it tastes like dirt.  But, still, I can't help but wish she could experience the taste of "dirt" and I think of what I would give for her to be able to realize her dreams of biting into whatever it is she's seeing someone eat that she can't have.

That split second when she takes an imaginary bite and then chews and swallows in sync with me except I have something delicious in my mouth and she has only her fantasy sliding down her throat, that moment right there, is when my heart does a little flop and I think it's broken beyond repair.  But, my brown-eyed girl looks at me and says, "I wish I could have that, " and then bounds away already letting go of the bitter taste of disappointment and I realize that she's mending my broken heart with the way her little old soul lives life: full of grace, full of acceptance, full of hope for better things to come.

She may be a heart breaker, but she also know just how to put the pieces back.

The Good Ol' Days

At least once a day, A asks me if she can watch t.v..  And sometimes I give in.  Ok, ok, you got me. I always say "yes."  But how could I not?  Cartoons these days are nothing like what they used to be.  The programs on t.v. nowadays are educational...and I'm talking about real learning going on.  In fact, I learn some new stuff every single time I watch an episode of Curious George with her.  I mean, who knew that the smaller the igloo, the warmer it stays.  Alright, maybe everyone knew that.  But I didn't and that's what I"m talking about.  I learned something...from watching a cartoon with my 3 year old.

Now the reason this is amazing is because when I was young, cartoons weren't so preoccupied with adding useful information to your brain.  They were more focused on sucking you in for hours of fun that required absolutely no brain activity whatsoever.  And they were almost always strange...blue people schlepping the day away singing addicting songs, mutant turtles running around trying to save the day, ducks going on all kinds of treasure hunts.  I mean, nothing had any ounce of educational value.  But they were so much fun.  Tom and Jerry (fun).  Fraggle Rock (weird but fun).  Thundercats (creepy but fun).  Fat Albert (straight out offensive but fun).  The list goes on.  Let's be real here, the cartoons from our youth were way more entertaining than, let's say, Word World or Wonder Pets.

And although our kids must be much smarter from all the subliminal learning that is going on, I can't help but feel sorry for them.  They have never known a world where a cartoon's one and only purpose was to offer mindless entertainment.  I'm so sorry A and G.  You may never know my experience of sitting in a room (that was most likely covered in lead-based paint), eating a saturated fat filled snack such as a Twinkie, while my mind relaxed into a stupor as I watched a cat terrorizing a mouse for hours on end.

My children, I feel for you from the bottom of my heart.  But, then again, maybe that's why you know way more than I did at your age.

Same Question, Same Answer

Today G pooped in the bathtub.  Yes, she sure did.  One second the girls were giggling and playing and the next second A was pointing to some brown turds in the tub crying, "She pooped! She pooped!"  

G was so startled by our response that she, too, scrambled as far away from the excrement as she possibly could.  But what do you know?   As I began snapping a picture (I like to have hard evidence that shows I earn my keep around here), she managed to lunge for a piece at the very last second.  So, I essentially took a picture of her holding a turd in a pincer's grasp...which has me winning the "Worst Mom of the Year" award, yet again, because it looks like I'm actually taking a picture of this moment instead of getting her out and away from the crap.

After hosing them off and disinfecting their entire bodies, A turns toward me and asks the same question she always asks after G does something naughty..."Did I do that when I was a baby?"

And I give her the same answer, "No, A, you did NOT do that."

Then I see the momentary struggle on her face as she grapples between being half relieved and, yet, half disappointed that she didn't have the gall to pull off a cool trick like that when she was in diapers.

If girls are "sugar and spice and everything nice," then A's the sugar and, that other one, she's the spice.