The Emotionally Trying Time of Flu Season with Medically Fragile Children

I am so sorry I have needed to take a little break from you my dearest readers, I have needed a short emotional break to deal with my haunting ghosts.  It comforts me somewhat that I read about other mommy's with special little ones that have exceptional physical needs and/or medical needs seem to share in my same daunting fears, but unfortunately it cannot make them go away.  It at least validates me into feeling I am not crazy... well, at least not certifiable.  I worry about life a little, a lot more than other parents with healthy children seem to. 

Parents with healthy children feel sad and perhaps even frightened when their children get sick.  But, parents of medically fragile children know too much.  We have been informed of too many statistics. We have seen our children get sick with illnesses everyone else can fight off in a week, linger in our homes for weeks on end.  We fall asleep to the hum of our children's medical equipment and we wake with every cough, sniffle, or deep breath.  We get scared because we know too much, remember the last time they were so sick, and we have seen our children struggle too many times.  We feel blessed to have them healthy.  We count the days between the last medical issue and we are grateful for each day in between and we secretly fear the next time and pray it will be better soon. 

We are in the peak of flu season.  Flu season is such a frightening time for me and my family.  I honestly feel paralyzed. I want to keep the children inside and keep them physically healthy.  I would love to ensure their safety, but I cannot for fear of their emotional and mental well being.  (Not to mention my Honey's emotional well-being after just one week with two boisterous boys jumping around the house!)  So while I do everything I can to ensure their physical and spiritual growth... I struggle with the anxiety of allowing them to venture into this big, bad, germ infested world.  While they are blossoming, sometimes, I feel the sacrifice of allowing them the room to grow makes me wither a little inside. 

The boys both have asthma.  Our oldest- our little dragon trainer, has asthma that is not as controlled as it should be.  It scares me so much to hear him struggle to breath and cough incessantly when he is healthy!  The thought of this very scary flu compiled with their asthma and the fact that they are so young is overwhelming to think about.  I have seen the children struggle to breath and it is the most frightening and powerless feeling I have ever felt.

The thought of the flu brings back memorioes and fears.

So lately, I have worried.  Nothing has changed but flu season, the fear of getting it, and fighting the natural desire to keep them safely home has made me a little bit more of  a worrier (and I am a natural at it without that kind of help!)  I suppose this is the "normal" for parents with children that are medically fragile.  That being said, I would not trade my life, my children, or my worries for anything in the world.  These beautiful boys are the most precious blessings in the world- definately worth worrying about.  :)

What's In a Diagnosis

What is in a diagnosis for a child with developmental delays?  Is it important to have a diagnosis of autism or cerebral palsy or apraxia or sensory integrated disorder?  Do I really NEED to know WHY my little man is developmentally delayed? 

I already know that he is a preemie baby.  I already know that he has hypotonia. I already know that he had a tumor that was infected with MRSA that resulted in palette and gum surgery.  I already know he was profoundly deaf for a full 12 months.  And, I know consequently, he has developmental delays.

With or without a diagnosis:
He is still my precious little one that has the best belly chuckle and sweet loving ways.  He is still my precious child that is not afraid to try something, fall down, and try it again.  He is my rough and tumble, get down and dirty, little snuggle bug.  His favorite color will still remain the same.  He will still have speech issues at the end of the day.  He will still struggle with low muscle tone and drooling.

So why get the diagnosis?
I do not want him to be defined by a diagnosis.  I do not want people to limit their expectations of his success because of a diagnosis.

I want people to see him as our busy little "B".  As him and all the amazing things he can become and will achieve!

No one told ME, I have hypotonia!  I can do anything!

It does not matter how many times I fall down, I will prevail!

You Said He is Anaphylatic! But, You Never Said He Could DIE!!!

I realized I was making a huge mistake when I was educating people about the boys allergies.  I was making the assumption that everyone knew what anaphylatic allergies were.  I realized after 2 years of explaining food allergies, I was doing it wrong and getting mad at others for not understanding the severity of it.

I was having our big boy sleep over with a very close family member because baby Bee was having surgery the next day.  James was loaded up with epi pens, benedryl, safe breakfast, lunches, dinners, and snacks.  I gave two options for dining out options as well.  My sweet Honey was going to also teach her about the epi pens and benedryl.  He pulled out the needles and began to educate Aunt Michelle (names have been changed out of respect). She looked at him in absolute horror.  She asked in a panic, "what are these for!  I did not know he needed needles!?!"  Honey explained that our oldest son will need the epi pen in case he accidentally ingests eggs,  so that it will keep his airways open until 911 emergency responders can arrive and again emphasized only foods from home were allowed."  Panic stricken Aunt Michelle exclaimed, "But you just said he has anaphylatic allergies!  You never said he could DIE!"

This was my mistake.  I wrongly assumed everyone knew what anaphylatic allergies were.  I assumed people knew how serious the situation can become when I exphasized the word anaphylatic.  And I also assumed if people did not understand the term anaphylatic they would ask for more information. It never occurred to me that people would need more of a explanation. 

So now, I assume nothing.  Now, I know that I have to spell it out in the most simplistic way possible and then build their knowledge from there.  I tell them that the children have "life threatening allergies", also called anaphylatic allergies and go on to clarify by saying if they ingest these allergies (or are stung by an ant) that it could be fatal. Depending on who they are I attempt to give them more information and educate them fully.  I just wanted to remind everyone that we cannot  assume people know as much as we do about our little one's needs. 

How do you explain?  Do you have an approach you feel is very well recieved from others?

Our oldest little man enjoying the view from a beautiful tree

Here it is, the Naked Truth "My Angry Post"

 

I will warn you now, that this post will be subject to controversy. You may or may not agree. But I feel being silent is irresponsible. Yes, I know this post sounds angry and if you have read my former posts you know I am not an angry person. But, every time I sit down to alter these words and soften them just a little, I get fired up again. I have held this post and revised it for several weeks.

I did promise candor in my words. I promised to be honest and naked about my feelings and experiences of raising children with life threatening allergies, environmental allergies, sting allergies, giftedness, and developmental delays. So with all the warnings I can throw out at you, without further ado, my angry post.

What NOT to say or do.....

1) If you talk to the parents and work with them to serve safe foods so their children can fully participate and promise them a safe environment for their children, IT IS NOT okay to change your minds at the last minute and knowingly serve life threatening foods. It is not okay in so many levels.

The parents are not as emotionally prepared as if you had been upfront in the first place. If the children with life threatening allergies are very young or developmentally delayed the children do not understand that they cannot have the food. They do not understand the dangers of sharing with their friends. The parents must become the crazed referees that are trying desperately to maintain conversations while internally petrified that at any second their baby will drop to the floor, eyes rolling in the back of their head, gasping for air, with hives all over their body in a matter of mere moments- yes, it really IS that serious. Yes, it really DOES happen that fast! And no, I am NOT exaggerating!

I recently experienced this exact situation. My oldest little guy was blissfully playing outside in the great outdoors; you know where ants, pine, and oak- his other anaphylactic reactions are found. I walked every inch of the yard searching for ant mounds then came inside and prayed for normalcy while people in every room of the house and outside were enjoying deviled eggs. Everywhere I looked I saw poison. I asked my husband and trusted niece to watch (OK, stalk the children) while I went to the bathroom and cried. I was so anxious and to be honest, mad. I believed this would be a safe environment. So I cried, put on my big girl panties, never sat down to enjoy the festivities until the end of the night when all the food was consumed and safely put away.

No, nothing happened. It does not mean nothing can happen if this occurs again. To put it lightly, we were lucky.

2) Do not have the attitude that once an anaphylactic child arrives "if they don't like it they can leave".

Raising children with anaphylactic allergies takes a huge emotional toll on a family and the children themselves. My 6 year old already knows too much about anaphylaxis and life and death choices. He remembers gasping for air, getting hives and feeling hot all over, and the feeling of asthma and general malaise afterwards all too well. We try our best not allow it to run his life and be in the forefront of his mind at all times. He is a child and deserves to be a child. It is emotionally detrimental to the children to yank them away from their friends and fun for something that is out of their control. I know there have been a few situations in which I have had to leave parties because there were children running around waving peanut butter sandwiches in their hands, eating boiled eggs, and eating cashews... everywhere I turned I saw "poison". What the other people still enjoying the party do not know and cannot understand is that on the way home we have two children bawling at the injustice of leaving their friends, while mommy or daddy play the scapegoat and protect them from the truth of the situation. Please understand my children are educated, my oldest understands, my littlest one has no concept of the dangers. It is a difficult and delicate juggling act keeping them educated, but not creating paranoia or feeling excluded because it rules so many factors in their lives.

3) After you have passed out your allergy filled, gluten containing, yummy cupcakes with beautiful and colorful decorations to everyone and the allergy parent tries to quickly find safe alternatives that they brought from home to ensure that their allergic child can be included that are pretty much plain and boring and will not have pretty sprinkles, it is NOT okay to say "See everything worked out okay in the end. No big deal" My children still felt excluded when it could have been avoided by simply communicating when you were asked if foods would be served- and they have to sacrifice too much already. And, I still have to play referee to ensure that the other children do not contaminate the environment or sweetly and innocently share with my child.

4) Do not, let me repeat -Do Not, say to a parent of children with life threatening allergies, "Well, everyone else has to live and we all love ______ (fill in the allergic food here)".

Your families’ love of a food and inability to sacrifice it during an event that is shared with my children is nothing compared to the inability of my children to breathe. Frankly, there is not a food in the world that is "to die for!"

I recently had a family member say this to me and it still makes me see red! "You cannot expect everyone to bend to your children's needs all the time, people have to live". This person is someone I care about deeply. What I wanted to say was, "Do you have to be the cause of an anaphylactic reaction to understand that your selfish decision to eat _____ can kill my child? Do you need to live with the guilt of possibly killing your loved one because you fail to educate yourself and realize the seriousness of the situation! Sadly, if that is what it takes, then I hope you fail to ever understand and you remain forever ignorant!"

But, I KNOW WHAT NOT TO SAY and instead say, "I realize that there are those family members that do not understand the seriousness of anaphylaxis so we will never be able to share in these family gatherings. It is sad that you miss out on precious time with these amazing little ones. They deserve those memories of family times together, but they deserve the chance to grow old too. So we will continue to pass on the invitations, but thank you." (Ok, maybe I don't know what to say.... I realize in re-reading and re-reading that is pretty blunt too. I will take a moment to tell you I have the kindest of intentions when I open my mouth, but I call a spade a spade. It's who I am.)

5) For all schools, businesses, and restaurants this one if for you, when we ask about the safety of your facility please do not reply with, "Well, we have not had a problem yet." I have to tell you, that does not ensure confidence in a person. While I am on it, please do not tell me you looked at the ingredients and "nope- nothing is safe" when you have only been out of my sight for 30 seconds! Or worse, "yes, everything is fine" when you have only been gone mere seconds. You are clearly telling me we are not worth your time and you are not taking our children's life threatening condition seriously.

6) You cannot say "I do not have children with life threatening allergies, but I understand how you feel".

Thank the good Lord everyday, that NO, ....NO, you CANNOT understand what it is like. Be thankful you do not really understand and please do not judge me. Sometimes, I get scared, sometimes, I get mad, sometimes I do over react, and sadly, sometimes, I let me guard down. I am human and I am permitted to feel every emotion humanly possible regarding something that dictates every day of our children's lives. That being said, I am always grateful for everyday with our little ones.

---

Perhaps I can help you see my point of view a little better? Please, let me break it down a little further.

At a party with little children in attendance would you ever put pretty colored kool-aid out on the kids table and then right next to it place a colorful bottle of toxic cleaner?

Would you ever create a cute hot chocolate bar and decorate it with bowls of marshmallows, chocolate chips, whipped cream, and place it beside a little bowl of arsenic rat pellets for the little innocent and trusting children excited to create their own yummy treat?

Remember both the children are allergic to eggs; "anaphylactic" to eggs? Now, is there really a difference between the cleaner next to the kool-aid, the arsenic rat pellets for the cocoa and a beautiful display of delectable treats of safe foods sitting beside a platter of quiche for my children?

Help me understand the difference. For my boys the cleaner, the arsenic, and the eggs are all poison. ....but I am supposed to allow "everyone else to live".

I am not asking the world to give up ice cream, cookies, goldfish crackers, or nuts! What I do ask is that the world be considerate and that they have their children sit down to eat in a designated place & consciously wipe their little hands afterwards.

I am asking that someone give me a list of the foods they will be serving at a party so that I can make safe equivalents for my munchkins to enjoy.

Yes, it is my job as a parent to educate!!! But, there are not too many, if any 1-3 year olds or little ones with developmental delays that understand the seriousness of their allergies. So, perhaps it is necessary that other parents are more cognizant of their little cherubs running around with foods that can kill other people's children to ensure the safety of all present.

We have ramps for people in wheelchairs, videophones for people that are Deaf, and guide dogs for the Blind. Why is sitting in designated area to eat your delicious glutinated, egg, peanut, dairy, soy filled gooey yumminess so that my child will not stop breathing so difficult? Why when I sweetly explain the life and death consequence of your child wiping peanut butter or mayonnaise from their sandwiches on playground equipment is it met with a roll of your eyes?

We all have to co-exist in this world. We all should be free to LIVE life to the fullest. My children need to be able to breathe to LIVE their lives- period. I am not asking you to permanently change your eating habits. I am asking for you to consider my children when you are out in the world in a shared space. I am asking you to wipe down your eating area and your hands before touching other things. I am asking for kind comments and consideration to my children's needs. I am asking for less resistance when people do educate you on the life threatening possibility. I am asking that people with intolerances understand that those are not the same as your child dropping to the ground gasping for air while their throat closes in front of you- I will take diarrhea and vomiting and tummy aches any day of the week. I am asking that when parents express feeling of hurt, fear, or anger, it is not met with more anger or dismissal. Any parent with a special needs child should be held close while she/he expresses that deep down behind the anger, is a deep-rooted fear. I am asking for people to lovingly educate the world and for the world to lovingly try to accommodate all needs.... and to try and remember what not to say or do.

There, I said it... my angry post, perhaps now you see behind the anger is a very deep-rooted fear.  Buried deep behind the anger is a cry for the most normal life my children can possibly live, that most have the luxury of taking for granted.   Always, always my fear is that my babies will not survive because people refuse to believe, sacrifice, or

accommodate this need.

 

I hope to hear from you my dear readers and I hope this helps heal your hearts too.

Reminders of why:

 

This is our little guy.....
 

and this is our little guy after NOT SWALLOWING a sauce made with eggs the same night.


This is our oldest little one.  See the hives all over his face (they were all over his chest and back too)?   This picture was taken after just playing with other children and not eating something- but, I do not know who ate what before coming over without washing their hands and playing with my child.  He was so sick that after the benedrly began to kick in, he fell into a deep sleep at the dinner table at our large family gathering- and missed out on the memories to play with his family and just be a kid.

 





Expectations- It's a Grey Area

My honey and I had an interesting conversation recently about how we expect, yes I typed correctly expect, people in our children's lives to deal with our children's allergies. 

He seems to understand people's doubt and minimizing our explanation of our boys life threatening allergies.  I, on the other hand, am completely intolerant of it.  There, I said it.  When it comes to my children and their ability breathe or not- yes, I am completely intolerant of people's lack of understanding and unwillingness to get educated.

My hisband says he recalls ten years ago when our niece was diagnosed with celiac disease.  He says he remembers my sister in law fretting over every morsel our niece put in her mouth, he remembers her dictating where we could or could not eat, and how it controlled her every thought.  He said honestly, "I was young and uneducated and I just did not get it.  I thought she was just being overprotective and exaggerating the seriousness of it because she is an overprotective mother."  Poor cutie he married me, a fun loving girl who then became a complete overprotective tigress of a mother... the children's life threatening allergies only exacerbate this tendency in me- they honestly did not cause it.

Contrastingly, when my niece was diagnosed I remember researching everything I could about celiac disease.  I got myself completely educated on what it was and how it would impact her life.  I even searched for recipes to share with my mother in law so she could create safe dishes for her.  So, I guess it stands to reason that I expect everyone to do the same thing for us.  I will be completely naked with my heart right now- when people do not understand, it hurts me deeply.  It makes me angry.  It makes me feel that because they do not understand, then they do not love my children enough.  Perhaps this is wrong, but regardless of right or wrong, it is how I feel. Please understand I do not refer to strangers on the street, people I work with... I mean family and close friends.  I would go out of my way for them, for a perfect stranger in need I would go out of my way, so I feel if they loved me and my children, they would reciprocate. 

He says it is wrong to have such high expectations of others.  Perhaps he is right, but this is my children's LIVES, and I cannot seem to control that this is how I feel with conviction- period.

When people bend over backwards for my children it makes me feel they get the gravity of the situation. I am literally moved to tears when a restaurant works hard to make everything safe.  I recently had a close friend ensure a safe environment for our boys at Halloween.  ALL of the candy was safe for the boys at the party.  Everything!  Words cannot explain the gratitude.  But, when people put the boys in harms way, words cannot explain the deep anger, the fear, the anxiety, and the hurt.

My oldest is pretty good at knowing what is safe, and what is not.  My beautiful little man remembers his last anaphylatic reaction clearly.  He is honestly petrified of it happening again.  Sadly, at such a young age he understands life and death decisions.  He has even said that sometimes epi pens are not given fast enough.  I worry about him.  A LOT.  He still is under the impression that he can run from ants when he sees them, not understanding that they can get inside your pants legs before you even knew they were there....but, the fact that he has a healthy fear of another reaction makes me feel I can trust him a little more at gatherings/parties.

Our little Bee, however has absolutely no understanding of the life and death decisions involved in his food choices.  He was 18 months the last time he had something with eggs in it and thankfully does not remember it.  "B" LOVES to eat too.  So, it is typical of him to try to eat something from someones plate, the table, or the counter.  I am petrified of going to parties/gatherings with "B" and I usually stay there and smile and try to carry on conversations while fighting the internal urge to rip them away from the party to keep them both safe.

The below are a few pictures to hopefully educate others.  We actually took pictures to keep me calm- I took pictures and then would look back every 30 seconds at past pictures to see if he had gotten worse.  It helped me decide if it was my imagination or fact. 



My beautiful little man playing.  Below is the exact same day.

He has nothing in this mouth- he is just that swollen.  Can you see how his right eye is swelling shut?  And his right side of his face is so swollen?!?



Bee after one bite of sauce with eggs in it that he spit out & did not swallow.  You cannot make out the hundreds of hives on his body from this poor quality picture.  He had hives all over him, his tongue and throat were burned from the brief contact with eggs, and you can see his eyes are almost swollen shut and his face is comepletly altered.  He was on his neubulizer machine for days afterwards and it completely wiped him out for days afterwards too- below is him falling aleep from exhaustion caused by his reaction.  Thanksfully, he never lost consciousness.



No, he has nothing in his mouth- he's swollen from the reaction.