Saturday, August 13, 2011

It makes you want to cry ~ but forces you to laugh

You feel tears well up on the outside, and on the inside you're sobbing, for reasons that your child is not yet mature enough to understand.  But, because of the sheer beauty of the moment you're forced into a smile, a chuckle and sometimes full blown laughter.  These are the moments that we have from time to time that shake us out of our 'norm' for a second and make us realize exactly how different we are as a family and then make us realize how fortunate we are to view the world a little differently than most.

One of the most recent specific instances that I'm speaking of is at some point over the last week Duncan picked up a piece of paper when we were discussing going out and held it in front of him like a children's menu as though he were reading and said (in his British accent,) 

"Can't have that, Can't have that, Can't have that, CAN have a'teamed (steamed) bock-a-lee (broccoli,) CAN have a'teamed 'kini (zucchini,) Can't have that, Can't have that, Can't have that."

Our first emotion was a mix of humour with the first "Can't have that," and extreme cut you to the core sadness immediately followed when we realized the depth of what he was experiencing and enacting.  He is 28 months and is able to verbalize in a pretend scenario what the future was getting ready to hold for him when we went out to the restaurant.  Though we obviously know that these experiences affect him on a very deep level to watch him enact this was extremely sad for us as his parents.  

We want the world to be a world of "can" for him which is why we control his changing environment (i.e. where we take him - etc) so much so at this age.  We know that hearing, "can't" and "no" constantly for a child is damaging and frustrating.  But, in Duncan's world there are a lot of "can nots" and a lot of "don't" vs. a lot of "Sure's" that he should be getting.  He literally tantrums (and rightfully so in his own right though we definitely don't approve) in Whole Foods when we're on the Baby Food/Spice aisle if another child comes on to the aisle and he has to watch yet another child get to PICK something out that they desire.  He does not get to do this.  He gets told what he can have (which isn't much.)  He screams at the other children "NOOOOO DON"T TOUCH!  STOP! PUT i' BACK!"  He has tried to take something out of other children's hands before (which I was able to prevent before he actually reached the other child...I'm his mother - I can read his mind at times,) he has reached over into other people's carts to try to take things out of little babies' hands, he has hit me, bitten me, banged his head on the floor and pushed items back deep into the shelf cavity out of frustration.  

People often ask, "He's two now, hasn't he outgrown his allergies?"  "Well, he looks healthy and he hasn't been in the hospital for a while he's fine now, right?"  And the questions go on and on of that nature.  Well, not to toot our own horn but he is doing so well and is NOT in the hospital because we work our little behinds off on a constant day to day, hour to hour, meal to meal basis to keep him healthy.  It only takes one mistake to endanger him and make him suffer.  

Perfect example:  Dave and I were given gift cards in a generous amount to a restaurant that we used to frequent but haven't been to in quite some time.  We both ordered menu items that typically we wouldn't order if we weren't using gift cards and delighted ourselves in some dessert to bring home and eat later.  We absolutely grilled the kitchen manager.  GRILLED.  She was incomparably mis-informed on some things - it was obvious that she didn't exactly know her game...but thought that she did.  She softened a bit once she asked us how we 'knew' at such a young age that Duncan has so many severe allergies, and odd ones at that.  When we gave her a 3 or 4 sentence basic standard over-view of how we 'know' she literally looked shocked.  She squatted beside the table to talk to us and softened her voice.  I could tell that she wasn't used to getting people with severe allergies and ones as well informed as us.  She was going to assure us that Duncan's steamed broccoli was safe.  

Later in the evening once home (a couple of hours later) Duncan was sleeping (he fell asleep in the car) but was incredibly uncomfortable and writhing in his sleep. We saw odd behaviour before this point but weren't quite prepared for the full swing of what was ahead.   It was a very rough night and a reality check, again for us.  For those that are skeptics if they could have been with Duncan that night it would have added some weight and depth to everything that they 'hear' us 'say.'  He writhed in pain and screamed out and sobbed for hours.  He was terrified and in pain because he didn't understand what was happening.  He didn't understand what was happening because to his most likely memory he hasn't had an experience on the inside quite this devastating.   After a very large full-scale allergic reaction size dose of Benadryl and an hour and a half of time his body was finally calm, or exhausted, enough to let him sleep for a couple of hours. 

My tiny precious baby. 

No matter how large he becomes he will always be my 5 lb neonate with breathing apparatus strapped to him and wired and tubes everywhere. He will always be my extremely sick 4 month old lying in a hospital bed dubbed as the 'mystery baby.'  It's not until you have a child, birthed or adopted, and had to watch them suffer without the ability to help them feel better, nor any doctor, medicine or ER help them, that you realize how much it just stinks to not be able to fix your child.  To help your child even be comfortable.

Was it the broccoli?  We don't know.  Was the broccoli treated with a pesticide wash that was corn based (most are) that wasn't rinsed off well, or at all?  Was something else blanched in the same water/pot that we were assured was broccoli only?  Was salt or olive oil added to the water?  Is he allergic to the wash/dry cycle detergents/fillers/sheets that were used on the napkins. Usually we take our own home-made cloth napkins/small burp cloths but have noticed that at most restaurants with cloth napkins he doesn't have a problem.  He touched the napkins, ate off of the forks and put his hands in his mouth.  Did someone touch his plate (usually we take him his own plates, and we did this night - but he also ate off of a restaurant plate) after touching something else?  Was there residue on the table?  Was there something left behind on the booth that touched his hands before he sucked his thumb?  Did he eat some kind of crumb from off of the floor while going under the table to go from Dave's side of the table to mine?  Who knows?  We'll probably never know.  Will we ever try this restaurant with him again, or at least in the near future?  No.   Will Dave and I go back to this restuarant again?  Most likely.  I'm a sucker for their soup.  I love soup.  And I really love one of their soups.

It is these instances that are the 'proof' for any who need that yes, indeed, he does have severe allergies.  We literally had to question for a short amount of time whether to take him to the ER or not.  It's not that the ER could do anything for him...he can't have any of their meds.  But, in the event that it progressed to the point of him needing his Epi-Pen at least we would be there.  These are the things that we try to protect him from.  The unknown.  The general world.  Yes, it is unsafe for him.  And, until he can navigate it for himself we have to do it for him.

We did have a lot of truly beautiful things happen this week for Duncan, but that is a separate post because I don't want anything 'ugly' in a post that deserves true light for the beauty that it actually is.  We had a very up 'up' week with some bittersweet lows. 

No matter how difficult our path is Dave and I are incredibly grateful that we have a knowledgeable view into a world that most well-meaning well-intended, and those that are truly ignorant, don't understand, don't live in and just don't get.  It might seem odd, but Dave and I have both always been lovers of people and lovers of communicating and connecting with people.  Though I know I am jaded at times both of us have the type of personality that is extremely analytical.  We analyze everything...all the time...every situation, every action, every reaction etc. etc.  So, having one more group of people that we can truly identify with, connect with, support and contribute to is a good feeling.  

I began life in this allergy world journey  due to having a mother with severe allergies that almost took her life, and yes, I recall being a seven year old child with a mother hanging in the balance in an ER.  It's scary.  So, we've always taken it seriously.  Very seriously.  

My game was stepped up when I experienced life threatening anaphylaxis three times in college.  And, we jointly, were thrust even further into this world when our Gift was bestowed with allergies to the point of almost passing on us.  So, yes, we are passionate.  Are we over-zealous?  Absolutely not. 

If you're reading this and you view us as over-zealous, or know someone who does, then I would challenge you to almost experience the death of your mother as a child due to someone's negligence, experience anaphylaxis for yourself (which doesn't end when the 'shock' is over - I vomited for days because my body was coming off of steroids and pain killers (though it needed more,) my eyes were almost swollen completely shut for days & I couldn't even eat bread for almost two weeks my throat was so swollen and sore - liquids only,)  and then watch your child literally hang in the balance of life and death for months and then have two heart stopping episodes back to back where passing pretty much happened before he fought his way back - and then look within yourself to see if you would feel that our actions are 'over-zealous' or 'over-protective.'  If you would still feel that way then you're emotionally disconnected and you need help for your own sake.

We are Duncan's parents.  He has been entrusted to us.  We are the ones that will have to answer, as we believe, to God when we pass for our actions in this world.  It is our obligation as Duncan's parents to keep him alive.  Yes, alive.  Something as tiny as a kernel of corn literally can kill our child.  Scary to think about, but it is true.  Something as teensy weensy as regular table salt rips the skin on his bottom open and causes free flowing bleeding. 

That may be graphic for some of you readers, but it's the truth.  We work as hard as we work because we have to.  He is doing as well as he is doing because we have worked our heiny's off to get him healthy.  His pediatrician still remains floored that I have kept him healthy and feed him the variety of foods that he gets because she has parents that can't, won't and don't for much easier to avoid allergens.  His county pre-school teacher even has parents whom have intubated their children with special dietary needs because they don't want to put the work forth into finding food to feed their children.  (It is a LOT of work.  A LOT.  I will be honest - but it is a labor of love.)  

  It is no one else's obligation or responsibility to keep Duncan safe and do the things that we do for him willingly and gladly.   It is also our delight to watch our living breathing child grown, learn, laugh and love.  Though it is no one else's obligation, nor responsibility, it is the social obligation and social responsibility of other's who come into contact with our child to not only respect our wishes, but respect our child, enough to keep him safe also.  Some family members have endangered him to test limits, to be 'funny' and some just because they are stubborn and selfish (which is the saddest of all.)

  So, sucking his thumb that he sucks = not cool or safe...definitely not funny.  Taking a bite of his food and then letting him take a bite = dangerous.  You can't share with him.  Eating something with your dominant hand and then using that hand to give him food...not okay.  

These are all things that have to be gradually introduced to those whom have not grown up in a severe allergy environment they way that I did.  It has been indoctrinated in me.  It is natural.  But, respect, patience and understanding go a long way.  For those of you who are already on our side of the fence Thank You!  We can not thank you enough.  For those of you straddling the fence and still learning PLEASE ask us questions, ask us about our experiences, what it feels like to have these reactions, what can be done to be prevented, etc.  And for those of you on the other side of the fence we doubly encourage you to ask questions!  Everyone starts somewhere and we would, and never could condemn, someone for wanting to learn not matter how silly you might feel your questions are.  We hope one day you'll join us on the other side!  Duncan needs YOU on his team and we would love the support!  We all cause a ripple effect.  The more people that know, understand and can share - the more understanding will be passed through all of society.  

Remember:  Duncan needs you.  He loves you and one day when he grows up and can understand he'll want you on his 'team' too.  Please grow with us, learn with us and share with us. 

This month in Living Without Magazine there is an article called something like "Ten things that the Severely Food Allergic Child Wants you to Know."  For copyright , and technical posting reasons, I'm sure I can't scan and re-post the article here.  But, they do make their articles available to the public online.  So, maybe good their magazine and take a gander at the article.  It's definitely worth it!  A lot of it is information that we'd love to say to other's for Duncan because he can't yet.

Thank you all for reading our blog.  Just by reading our blog it shows that you support and love us in some way.  All we want is safety, happiness and joy for our child.  That's what we all want as parents, right?  :)

Pride.  As sad as the first moment listed above was - we were proud.  Proud parents that our child understands his situation even though it is a bittersweet one.

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