A Friend Indeed, Another In Need

Through out our journey, people will come in and out of our lives for a reason. Some may stay a while, some only a moment. The imprint they leave and the lessons learned from interacting with them may be great or mundane, but each has its own importance and impact on the path we are taking.

Saturday, I was shuttling my daughters between their friend's birthday parties; some overlapping another. I swear, on days like these, I could be a NY Cab Driver! At one of the parties that Aria and I attended, I knew only the hosts. Apparently, Aria's best friend was allowed to invite one friend to her family birthday party, and Aria happened to be that one friend. For a while, I politely engaged in small talk with members of the birthday girl's extended family. Then, one of the younger cousins... could not have been more than 8 or 9, asked me out of the blue to make sure that her younger brother didn't get into the egg salad because he was allergic. To her, I was the only adult in the vicinity she could ask, yet unbeknownst to her, I was JUST the person to handle the task. I noticed that the allergic child, who was the youngest of three, like Andante is, was very well adjusted to his avoidance, and his siblings were his strongest advocates, much like my girls are for their brother. Once inside, I heard the mother talking about her son's IEP (Individualized Education Plan). For those of you who do not know what one is, a simple explanation is given here. So of course, I had to ask...

We got into a discussion about our FA children, and schools, and the laws governing protection for our children, etc.. A couple of other mothers (one was a Special Ed. teacher) chimed in, and we had a really informative conversation. The one thing that blew me away was that this mother did NOT have an Epipen for her son. In fact, she didn't think that her son's allergy was that bad.

Apparently when he was a baby, he had an allergy test after an allergic reaction, and they found that he was moderately allergic to eggs, but ingestion only. Then, a year or so ago, the mom was making Portuguese sweet bread, and she allowed her kids to separate the eggs with their hands. After doing this, the little boy with FAs began to itch and wheeze. She said when she looked at her son, his entire trunk was covered in hives.

OK God... I get it! Perfect opportunity for me to change the world one person at a time. THANKS A LOT!!! (can you see the sarcasm?)

So, I proceeded to tell her about the touch part of Andante's allergy to egg, and the likelihood of her son's allergy increasing. I also stressed the point of having the Epipen. It just so happened that yesterday, I was going to take a picture of Andante's reaction off of my Blackberry so as to make room. (See the Sealing Our Fate post to view the picture I am speaking of) Something told me you are going to need to show that to someone someday soon. Huh! Little did I know.

So I did my good deed for the day. I left the party feeling like I had accomplished something in this crazy FA world. Not something that us FA parents can brag about all that often, though we really should do so more. If we really though about just how much we do daily to keep our kids safe, we "should" definitely feel accomplished, but more often than not, we feel as if we are failing them when we deny them the foods that can hurt or kill them. Logical,...No! But neither is spoiling a child, and yet...

Anyhow, I left that party with Aria, drove home, and made the switch from her to Allegra, and drove out to the next party. The family that was hosting this party, I have known for years. The mother and I were involved in teaching CCD together when I first moved back to the area. I also had two of her daughters in my music class. So I was definitely going to be comfortable at this party, sitting around with all of the other Kindergarten mother's, as we watched our daughter's enjoy their own private tea party. But that wasn't the only reason I was feeling comfortable. The Mom of the 2nd birthday party girl and I had spoke earlier in the week about the party. She said that the menu was not set in stone and she wanted to know what not to serve other than the peanut butter so that Allegra would not take home the proteins on her and potentially harm her brother. Now, this mother and I have talked minimally before about Andante's FAs, so her willingness to adapt her party for a sibling of a child with FAs came as a pleasant surprise for me.
The conversation literally brought me to tears.

How amazing that in my little corner of the world, someone other than a close friend or relative gets it? Not perfectly, but gets it! Not even my own Mother-in-law understands the ramifications of giving the girls something with one of Andante's allergens in it, and often times will argue with me about how cruel I am to deprive the children - "Andante's FAs cannot be that bad", she says.

ARGH!

It amazes me still, that in this vast and fascinating world of ours, two people came into my life and a difference was made. One, I may never see again, the other I will enjoy their friendship for a long time. Yet each left an imprint for a lifetime.


Seriously!

TinaMarie

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From Out of My Head They Sprung

Well ok, they didn't really spring forth from my head, but using "from out of my Cesarean Section they came" somehow, just didn't ring so well, and I needed a tag line so that I could introduce myself and my family to those of you who may not know us yet.

Hey, it worked! It got your attention! lol

I am a Conservatory trained vocalist, pianist, and instructor. I have chosen to put my Opera career on hold and just give lessons and perform locally because I chose to be a stay at home mom (SAHM) when I got engaged to my husband. I have three children: Allegra Rose, 5yrs, who is in Kindergarten, Aria Eva, almost 4yrs, who is in her 2nd year of Preschool, and Andante Joseph, 18mths, who is my severely allergic one. I have been married for 6yrs to my husband, Fernando...whom you will see me refer to as Nando from time to time. Fernando is currently working on his Doctorate in Education with a Consentration in Special Ed for older students, and works as a teacher/counselor for a boy's group home system. I do have a Youth Choir that I still direct (the others I resigned from when I had my children), and have been dabbling in composing as of late (though I am not sure I would give myself that title yet).

I am adopted. Scottish/English by birth with a slight splash of Italian, but raised by two wonderful full blooded Italians, and I am Roman Catholic. Needless to say, I am a hot head with a healthy dose of guilt! My husband, on the other hand, is full blooded Azorean... you know, those little islands out in the mid Atlantic Ocean... literally in the middle of NO WHERE. Turns out, long, long ago, the Portuguese landed there, too, and decided to make it a penal colony. LOL... yeah, I know, cruel... but I just have to rub it in sometimes. Dang Portuguese were everywhere! Hey!...but at least their Catholic! That, and the fact that Nando is such a wonderful and loving person, were his only saving graces when he asked for my hand in marriage (yes, ladies,... he REALLY went to my family for their blessing... 1,2,3...awww!!!). He may not be Italian, but not everyone is perfect. At least he has two out of the three main requirements!

So, as you can imagine, our household is very vivacious, very animated, and VERY loud! We both have large families... many aunts, uncles, cousins, siblings, nieces, nephews, Godchildren (Shout out to the troops! You know who you are!). Get togethers are large, rambunctious, and again... VERY LOUD!!!

I am a stickler for manners; best be knowing your pleases and your thank yous, and I do not tolerate any bull. With me, it's say it like you mean it, and stand behind what you say. Over the past 6yrs, Nando and I have rid ourselves of toxic relationships, family or not, because it was too poisonous for our family, and we did not want our children growing up with that kind of anger in the forefront of their lives.

It was then, when we finally cleared the path for Grace, we were given a child with severe FAs, and thrown into the depths of uncertainty, hoping not to drown.

So there... now you know a bit more about us, and you weren't left totally visually deprived. I did put up the family portraits hanging to the right.

I hope that by sharing these glimpses into our lives, they will bring about change of heart and clarity of mind for people who may be sharing this journey with us from afar, for those who support them, and/or for those that had no idea about the world we try to navigate every day.

I hope you can find your peace.


Seriously!

TinaMarie

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Sealing Our Fate

Since my son's diagnosis, life has been like a whirlwind that ceases to die down and fade away. Every day is a silent and unknown battle with the Food Giants in order to keep my son safe. And it sucks!

Granted, for those of you that know me, allergies as a whole are no strangers to our family. I have had environmental allergies (EA's) all my life. No biggy; only really suffered when the seasons changed. After my Carpal Tunnel surgeries about 10+ years ago, I developed an allergy to ibuprofen. Again, no real biggy; just took Tylenol or Aleve for any pain or inflammation. With that came a severe anaphylactic allergy in the hospital to cinnamon, which is an anteseptic ingredient in humalog (for Gestational Diabetes). Ok, this one SUCKS, but I deal with it. I just avoid anything with the spice, or the oil, or the essence of cinnamon. Thankfully, it didn't badly effect my life, unless the only dessert was apple pie. Then, after the birth of my 2nd child, I developed extreme eczema on my hands (later diagnosed as a gluten allergy). This one REALLY sucked because it made playing the piano extremely painful, let alone doing normal household chores. Changing a diaper was sheer torture because of the chlorine in the wipes. It would eat my hands alive. There is also the fact that myself and my two daughters are skin reactive to tomatoes and peppers...but that doesn't stop us from eating them.

Then you take my husband, who at 21, developed a severe anaphylactic allergy to shellfish. Talk about one heck of a blow to an Azorean. It wasn't too bad at first, but like what can happen with any allergy, with the more exposure, the worse it got. He has air born, touch, and ingestion reactions to shellfish. It is so bad that he cannot go within 10 feet of the fish counter at the supermarket or he will have a reaction.

So ok...all of these allergies were reasonable to bad, but manageable.

And then our son came along in March of 2oo7.

All of my children had really bad "baby eczema", but his would not clear up. It got so bad that he would scratch himself raw. And of course, I could not get my Pediatricians to listen. I could not keep the baby mittens on this little guy for the life of me. I tried every cream under the sun; nothing. Finally, an appointment in January of 2oo8 that was SUPPOSED to be with our old Pediatrician, was handled by a new doctor because our Dr. got called away to an emergency at the hospital. This new doctor looked at me in the eye and said, "The baby is having an allergic reaction to something, and it is coming through your breast milk."

I am sorry... WHAT did you say? I am the cause of this? (Well... really I wasn't, but no one was going to convince me at that point.) Are you kidding me???

So then, the new brilliant Doctor asked me to go on an elimination diet to figure out what it is that I am eating that is affecting my son.

Again... WHAT? Are you freakin' kidding me? An elimin...WHAT?

Those last 20 years or so that my poor Nonie (my grandmother) was on a diet of chicken, rice, and zucchini everyday because of her Lupus, I would try to cajole her into trying to eat something else, to let go and live a little, and now, my fate has brought me to the same plate. Dude! Is my karma that bad??? God, I hope not!

After doing a two week elimination diet, we believed the culprit was wheat/gluten. So immediately we went on a gluten-free diet. My son's skin and my hands started to clear, but didn't completely take away the problem.

It was only when I tried to ween my son right before his 1st birthday did we start to begin to understand the complexity of the Food Allergy world. With the first cup of cow's milk, my son reacted with hives, shiners (red swollen eye lids), coughing, and wheezing. Immediately, I took it away from him and gave him soy milk (which now we have moved to rice milk). I called the doctor's even though I had an allergy test appointment set up consecutive with his 1st year appointment. I was told to avoid all milk until they could get him tested, which was a month away. About a week before his testing, I gave my son an Easter Peep... this time the reaction was worse (yellow dye). Called the doctor, and again, was told to wait until the appointment. The appointment came and the RAST (blood) test was done, and I should get the results in 2 weeks. That was a Thursday afternoon. By Monday, our Pediatrician was calling us, trying to explain the results, and giving us an appointment time for an Allergist for the Thursday of THAT WEEK to have the STP (skin prick) done.

Huh? Are you kidding me???

Little did I know just HOW allergic he was.

The results of both tests were exact matches. No room for "false" positives/negatives. My son has severe anaphylactic allergies to casein (dairy), eggs, and peanuts (all air born, touch, and ingested reactions). He is also anaphylactic to yellow dyes (the Peep). We avoid tree nuts as per the doctor's recommendation, though he was not tested for them because of his age. He is also mildly allergic to gluten/wheat, and soy. He also has a skin sensitivity to tomatoes, peppers, and latex... just like his mamma.

My saving grace... he is *knock on wood* not allergic to corn or sulfates.

So yeah... talk about a major life change. In this household, we are allergic to 7 of the Top 8 most common allergens, and then some.

Since our diagnosis, I have joined a fantastic online support group, Terrific Kids With Food Allergies (shout out to my girls, and our token dads! Woot! Woot!). Without them, I would have probably been in the ER more than once this summer with my poor little guy. But even with all of their help, and tremendous wisdom, it is lonely in this FA world... especially when your child is the only one in town who is so severe. Yes, I live in a small town, so I am not exaggerating. Out of a little over 4ooo people, we have some Celiacs, some with single food allergies or avoidances, but none like my son. And of course, thanks to this, most do not understand what we are dealing with, how we live our lives now, and why we have to plan for the future so diligently. Thankfully, we have a handful of very close friends that are our strength and foundation. And, we have the Love of God.

"I know that the Lord will not give me more than I can handle; I just wish he didn't trust me so much! ~Mother Theresa

Seriously!

TinaMarie

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A Serious Journey

In April of 2oo8, just after my son's 1st birthday, he was diagnosed with severe food allergies, some of them anaphylactic, which could be fatal. Literally, fatal.

Since then, our world has been turned upside down. So begins the story about our path on this part of our great journey...

Seriously!

TinaMarie

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