Out of the Mouth of Babes

This picture is only of Allegra because she noticed one day while I was editing posts that

she was the only one who didn't have an individual picture posted yet. So here's to you Rory!!!

The compassion of children amazes me. Especially between siblings; there is a special bond that is unbreakable. Even if the siblings do not talk every day or even for years, there still remains an intense bond with the person you spent your childhood playing hide n’ seek with.

I watch my children interact with each other and marvel at the immense love and affection they share for one another. I am so grateful for that love. It is a love that has saved my son’s life many times now, and I am sure will again in the future.

The best two advocates for my son are his two sisters. For example, at Aria’s dance class last week, the instructor thought they did so well, she decided to give them all a piece of candy. Aria (who will be 4 next week) said, "Tanks, but no tanks. I cannot have candy because Tay (Andante) is allergic and the dye on my hands might make him sick."

Honest to God! I know… amazing, huh? If I didn’t know my children, I would think any little child saying that was incredibly well coached, and was not fully aware of the impact of those words. But, as a mom who has had to educate her young children on life and death and how quickly a life or death situation could present itself in our family, I know they truly understand...and more often than not, much better than the adults do.

Now, mind you, my children were never allow to have much candy before this, but prior to Andante’s diagnosis, I would have let Aria have the piece of candy the teacher was offering. Since his diagnosis, I don't let them have anything that has high fructose corn syrup, artificial flavors/colors, etc., except on special occasions. It’s better for them and for their brother who is allergic to the food colorings. But to them, it is not about the ingredients in the candy they are avoiding. It is for their brother.

They know if he eats, or touches, or smell one of his allergens, he could get really sick, swell up (like they saw him do last time), choke, and die. They know all about death since we have never hid it from them and they have been to a number of funerals in their short little life times. They understand that if Andante were to die, they would never see him again, even though he would be safe with Jesus. Because of this, they are CONSTANTLY vigilant.

At the end of last week, I had asked Allegra (5.5yr) to pick up her brother's sippy cup from one of his typical after snack quarterback practice throws. You could see her thought process as she looked at the cup, paused, then looked at me and said, "I can't. I don't know what is on my hands. But if you wait a minute, Mamma, I'll get a wipey and wipe my hands, and then I will get it for you."

I was so proud of her. My eyes filled…again.

On one hand, I agree with the psychiatrist…to a point. My children should not have to worry about this. They should have a care-free childhood. They should not have to stop and think "do I need to wipe this down,... do I need to wash my hands,... do I need to avoid eating this?" But reality has dictated, and they have to. Because they do understand, and because it is for their brother, they are more than willing live in avoidance of some things, tell people about his allergens with unbridled candor, and make sure that he is safe.

I have shown them the Epipen, and how to use it. I had them near me when I had to inject their brother back in June. I did not want them to be swept out of the room because they were "too young to see" it. Yeah, it totally scared them, but honestly, it was the best lesson they ever could have learned. They did not like the crying, but they saw him after when his reaction went down and connected, for themselves, that the medicine in the Epi helped save him.

Allegra and Aria know how to use the Epipen Trainer, and they only use it when I bring it out. They know his Epicase is NOT something they get into unless it is an emergency, but it is reachable by way of standing on a chair should they ever be the only ones to be around to administer it. I don’t foresee that happening since I am with them all the time, but I do have an outside laundry porch and he could react to anything at anytime, be it instantaneous or bi-phasic, and time is extremely limited to get him help. They know where their Benadryl is and where his is and they do not get into his. They also know that Papi & Mamma may need an Epi someday as well.

I have recommended to other Food Allergy Moms to keep reinforcing the importance of avoidance and advocacy with the siblings of the FA child who are not affected. Reality is they will get it and they will be their siblings’ next best advocate to themselves. I know it sounds like a lot for a 4 and 5yr old, but keeping them ignorant may do far more damage. My girls were never picky eaters, but now, they choose what to eat and what not to eat based on if their brother is there or not, so as to keep him safe. NOT because I make them; I would suggest it, but after the June incident, they are adamant about keeping him safe at all times, and won't even accept the breaking of the tiniest rule, even from me.

Children will surprise you if given the chance. Just keep it at their level of understanding. There are some great videos and books available. There is a video on you tube (someone had the link here once upon a time) where kids talk candidly about their peanut allergies. After my girls watched that video, especially the part where one child talks about having a reaction in school, my girlfriend, who is one of the lunch ladies at the girl’s school, tells me my girls advocate frequently, regardless if I am there or not. Hearing it from other children who have FAs really helped Allegra and Aria to grasp the concept of FAs (this was pre-Dante reaction). Then with the June incident, the measures they take to keep their little brother safe, was set in stone. What an amazing foundation Andante has.


Seriously!

TinaMarie