Bite-Proof

Starting out her b-day right!

Exactly one year ago today, Madeline and I sat in an exam room in Dr. Chad Mayer’s office, Comprehensive Food Allergy Clinic of Michigan, for her first day of OIT, Rush Day - she was given miniscule amounts of peanut flour, dust really, in juice. Every 20 minutes, Nurse Lety came in with more of the offending liquid and I sat nervously awaiting a symptom to appear. Maddy began OIT the day after her 7^th birthday with tears in her eyes from the anxiety that filled her, though she allowed her nerves to calm as it quickly became clear the little bit of peanut was not sending her to the hospital that day, or any day forward for that matter. Oral immunotherapy or peanut desensitization is a dream come true as far as we are concerned; the answer we had been looking for to solve our food allergy problem and today – our one year anniversary of the day Madeline began OIT - we celebrate this miracle!

In light of the most recent events to hit the news, I am extremely thankful that we found private practice OIT when we did. Natalie Giorgi, a young teenager, just 13 years old and anaphylactic to peanuts, lost her life after mistakenly eating a snack with peanut butter in it at a summer camp with her family - even after multiple doses of epinephrine were given. Multiple doses. The family reports that they were diligent about the peanut allergy even though Natalie had never had a severe reaction, just as many food allergy families are. Just as we were before OIT.

Enjoying the day!

This story has rocked the food allergy world. It’s rocked the world of anyone who has a food allergy plan because so many of us feel safe that our plan will get us out of a sticky situation if ever needed, which we hope beyond all hopes that we never do – I’m sure Natalie’s father, a doctor, felt the same. The epi is our security blanket and when we hear a story so devastating - it’s terrifying. Natalie’s story hits too close to home for those of us who have lived with food allergies, the possibilities sound all too familiar.  This could be our child – home or away from home. Parents of food allergy children need people to understand this is why we “hover,” – why we stay for birthday parties, why we call ahead to check each menu item, to look through ingredients lists, or bring our own food. Food allergy parents cannot simply drop off their child, let them gobble up cupcakes, candy, or even homemade fare. It may seem obsessive but a FA parent must be overly concerned with anything that comes into contact with their child’s hands or lips – toys, desks, baseball bats, especially food. To an outsider, it may seem overprotective, but to parents of children with food allergies, it just makes sense.

Madeline turned eight years old yesterday; today she celebrates one full year of OIT. Much like I imagine the Giorgi family did, we lived, we breathed, we slept food allergy. We were raising Maddy to be diligent, though, to ask questions about her food and, like Natalie, she had never had a severe reaction. Until OIT, we worried, we became anxious, and we fretted about “what could happen if.” And as she became older, we began to keep her from things just in case there was food involved or because we couldn’t be with her. In fact, next week, she will attend her first ever summer camp – without us. OIT allowed that to happen. Food allergies ran our life because we needed her to be safe. A world of possibility has opened for her – happier, healthier, and safer.

When peanut allergy desensitization entered into the picture – our picture - we felt safer almost immediately. As she progressed into the therapy, graduating from the program, and reaching the maintenance phase almost 6 months later, we never looked back – we didn't regret a moment. This was the best decision, our family could have ever made. This week’s news solidifies that decision in our minds. My heart is heavy for the Giorgi family and my prayers go out to them deeply. I can only imagine the grief they must be feeling. 

We really know how to party!

Numerous articles detail the horrific events surrounding the death of Natalie Giorgi and many try to analyze what went wrong, including varying anaphylaxis plans between allergists. While reading these, I can’t help but think about our last year and where we could be without OIT and the appreciation I have for our doctor, our supportive family and our friends. I was especially taken back to one Sunday in particular. As it turns out, I’m not very good with dates. It was a few months ago, though, well beyond our OIT graduation date - we’d relaxed well into a new routine of allowing Maddy to grab her own snacks or treats at church functions and more. After she was given the “all clear” from the good doc, she jumped right into eating anything she wanted, and asked us to stop reading labels from the get-go, and except peanuts and peanut butter, still her least favorite flavors, she was trying lots of new things! OIT suited us, especially our happy little Maddy!

So, when she walked over to me in the fellowship hall at church and said, “Mama, this is peanut butter, I don’t want it,” out of pure habit my heart immediately flip-flopped, dropped about two feet, and a slight panic rose in my chest when I saw the gigantic bite out of the large peanut butter cookie. The words tumbled out of my mouth as I tried calmly to look her over, “Are you ok? Does anything feel funny?” But my body relaxed when she said, “Yeah, I just don’t like it.” Phew. Bite-proof.

Thank you, OIT. Thank you, Dr. Mayer. One year ago, our story may have been very different. One year ago I may be like those of you also wondering - when? When do I give the epi-pen? When do I give Benadryl? When do I call the ambulance?

I am glad to have that anaphylaxis plan in place, but I understand that it is one thing to have that plan and those medications in hand and yet another to live through it in an emergency. I am thankful each day for this new life that OIT has allowed us. 

It is more than just bite-proof, more than cupcakes at a birthday party or new foods in our cupboards. It is beyond all of that; something immeasurable that words will never explain. And for that I am grateful. 

Where There is a Will, There is a Way

Consultation day - feeling good!

I will never forget the first time I read about Oral Immunotherapy. It was probably the only good thing that I can credit to our first allergist. Harsh, I know, but she did little to support us. She gave us an Epi-pen Jr., told us to stay away from peanuts, and pointed me to the Food Allergy & Anaphylactic Network (now FARE). Eventually, after sorting through a mess of other information, I remembered this tidbit of advice and I joined FAAN. Aside from this, our allergist did nothing – not even an Epi training. So, when a parent like me - desperate for information, anxious to keep her child safe, and frantic for a cure came across news of this possibility, this promise, this hope… my eyes lit up with excitement, eager to know when, when, when… when would my baby be rid of this terrible affliction that could take her life with a little bite? When would this research become reality?

The morning I read that first article - my first article anyway - in the FAAN Newsletter, I knew there would be something for Maddy someday. I put a number on it – within five years, by the time Maddy would turn eight, there would be something to take this Godforsaken allergy away, or lessen the severity of peanut allergies anyway. There were times I’d come across some information and become somewhat obsessed – articles led me to more articles, studies, clinical trials, and interesting tidbits of information – all suggesting that we could hope for a better future where peanut allergies would not threaten her very existence. Patience, and obviously the salty little thing served on every airplane, Asian cuisine, and Easter basket, was my greatest rival. 

My metaphorical toe impatiently tapped as I waited for that cure to hit headlines. Each time we had blood work completed, trained a new person on the Epi-pen, or started a new school year, I longed for a food allergy cure. An urgent feeling tightened in my gut and an ache swallowed my heart when my child said, “Mom, the substitute teacher said I had to have the snack today, but it wasn’t okay for me.” It was disheartening to hear that ‘responsible adults’ put her in danger so many times, but good to know that even as a kindergartner she worked to advocate for herself or asked if a food was okay for her throughout first grade. And though we’d educated parent after parent – this peanut allergy thing was getting more and more difficult for her, emotionally, even if it was something we’d lived with all of these years. This cure couldn’t come fast enough. 

No need to check these eggs!

At this point in my research, I’d advanced my studies to social media, as all respectable scholars might. Not only did I find a group, the Peanut Anaphylaxis Cure Facebook page, but I found a case, a person, a child who had completed a therapy that I could link some research to that made sense - and I wanted it! I wanted it so bad for Maddy I could taste it! I could taste it as well as a peanut butter and jelly sandwich with a cold glass of milk. As far as I was concerned, it would be hers someday – I would will it to happen (insert maniacal laugh here)!

A few things panicked me though – there weren’t doctors near us at the time and the cost seemed like it could break us. Without it being an FDA approved treatment, how could we afford it? We were simply not in a position to do anything but wait. On Facebook I’d begun to see a few people who were doing the unbelievable – traveling many miles to a doctor either by car or by airplane, and even more unbelievable – relocating to get their children to a doctor, university, or hospital to provide treatment for peanut desensitization. My jealousy set in a little, but reality pushed me down. That would never be our case – our jobs held us home, not to mention other realities – house, health & family.

Our first allergist was the first allergist I ever spoke to about peanut desensitization. She simply told me that it was not something available and left it at that. Our second allergist I’ve written about before – a highly recommended man who spoke to me as an educated person regarding food allergies, just didn’t believe in OIT as an option, especially in private practice. I spoke with him at length about it and respect his opinion. In fact it weighed heavily on our own decision, but so did my own instincts, my own education and what I had seen occurring with OIT in other people (http://maddys7yearitch.blogspot.com/2012/08/two-thumbs-up.html).

My family has had great luck with a few doctors; we have also had not so great luck with many – some that have changed our lives dramatically. We have been in enough offices to know that when it doesn’t feel right - get another opinion and don't feel bad about it. Doctors are human, not superhuman – they make mistakes, have opinions, and they can’t know it all. A doctor may or may not have even the same amount of information as you about a subject, believe me; we have learned this the hard way more than once. When I asked our first allergist about a new test that was gaining popularity in the allergy world at the time, the uKnow Peanut Mollecular Allergy Test, which assesses the blood for specific peanut proteins to test for anaphylaxis, she knew nothing about it and asked ME to send her information, rather than research it herself – didn’t even write down the name! It was ridiculous for us to think we should be taking the opinion from an allergist we had received no support from and then an allergist I’d only just met, no matter how highly recommended! A consultation with the man completing OIT was in order, even if it seemed scary. Losing Maddy to a cross-contaminated cupcake was terrifying, scarier even than a consultation. The time had come to make a decision – OIT was now within our reach, we had to check it out at the very least. 

Walking into Dr. Mayer’s office, we were anxious – that she wouldn’t qualify and maybe a little that she would. We also knew that OIT is not FDA approved. But the numbers – the amount of children it is helping - don’t lie. It is working and it is working well. Our visit with Dr. Mayer made me feel comfortable – it aligned with much of what I had already researched - from others, books & on-line - and it educated Madeline and Jason perfectly. Jason was especially reassured by the fact that she isn’t taking any kind of pill or something unnatural and if something did happen, which was unlikely – we were trained.  And as for the cost, we were more than happy to find out that the office worked with our insurance company. Another bonus in this journey! 

Panera! A new favorite! Not available to her before OIT!

Dr. Mayer had the will to treat food allergies, a passion for it, and he had the knowledge and the skill. We trusted him.  He had found the way by working with another in his field – an experienced doctor that shared his understanding of food allergies, Dr.Wasserman of Dallas Allergy Immunology.  Dr. Mayer had worked for years to find the perfect time to enter into food allergy treatment – he didn’t rush in to publish a paper, make a buck, or get in while the gettin’ was good. His passion felt true. We liked him, liked the office and liked what he had to say. Neither he, nor I entered into this without the necessary education and a lot of thought– his was the kind we needed in a doctor, mine was that needed in a mother making an informed decision. Both so very important in this partnership. Our family felt an immediate trust and bond with Dr. Mayer that no matter what, he was in it for the same cause - Madeline. We went in informed, though - we researched before hand - about the treatment and about the doctor. We didn't go into it with one opinion or one article source. We advocated for Maddy and ourselves by being informed patients and parents. Dr. Mayer has always treated us as such.

OIT was right for us and continues to work in this family. Much like any parent – we would do anything for our child, so we just had to know and make that trip across the state. We had the will, we found the way, and it just made the most sense. As you may well know, we are all so glad we did - just think of the possibilities it will bring for our family and for other food allergy families in the future!

That's My Girl

Excited to try something new!

New things are difficult for most of us. As adults it is especially difficult to think about new friends, new places, or adopting new routines into our life. I’d really like to think when I am approached with something new I will jump into it with a great attitude - full force with energy and positivity. The truth of the matter is, though, more often I hold back a bit, allowing my reservations to keep me planted in the same place time & time again. Kids, though, usually are not this way. They are amazingly versatile, generally more forward thinking than us, and are more capable than we ever imagined them to be.

Maddy’s proven this to me time and time again in our journey toward freedom from food allergies. She has been nothing short of brave – ingesting this poison each day, twice a day in order to become eventually immune from it. There have been times she’s struggled with the flavor, especially just after she tasted her first peanut.  Some of those times I have joked with her. “Okay, I’ll let Dr. Mayer know we’re all done,” I’ve said playfully.

Quickly she’s replied “No, no! They’re not that bad!” And down the peanuts go!

5 Peanut M&M's = 3 regular peanuts

And who’s to blame her? All her life she’s been scared of anything resembling a peanut, peanut butter, food cross contaminated with peanuts, and has been told to stay away from those offending foods as well. She is at the age where hot dogs are considered their own food group and chicken nuggets from McDonalds are “like the best chicken, mom!” If given an opportunity to make her own dinner she would easily make cereal and if Dad asks about picking up dinner, she quickly yells, “Pizza!” at the phone. She enjoys fruit and vegetables, but much like most kids this age, she must be served the colorful foods in order for them to make it into her mouth and thus her belly; so getting her to like not just a new food, but a food that has been deemed toxic to her an entire lifetime is simply not going to be taken down easily. Those peanuts were NOT her new favorites! She was adding them to her daily routine, however, much loved, they were not!

Nonetheless, the weeks did fly by, quite quickly, I might add, after that first peanut. And, like we hope in OIT, they were relatively uneventful. Uneventful is actually rather exciting! Which means NO REACTIONS occurred – no hives popped their ugly heads, no tummy aches cramped our style and no fevers forced their way into our evening plans… nothing happened at all. Life was good! 

Maddy, as I’d said, did not like the peanuts, but the peanuts were tolerating her. Better yet, her immune system was holding strong, and as far as I was concerned was strengthening. My baby was eating peanuts! Every day! And by the third week of peanut dosing, she got a new treat – Peanut M&M’s. This chocolate covered peanut delicacy came with a whole new set of faces not nearly as awful as the plain peanut faces. As the weeks have gone on she has grown to like Peanut M&M’s a tad more than dry roasted peanuts. Hopefully we will get a peanut lover out of her in the long run!

These kids all amaze me!

Her logic and attitude that the peanuts though, her dose, are medicine is flawless; inspiring really. This outlook keeps her head in the game. Nothing is keeping her from that end goal – her eyes are on the prize – OIT graduation! I’m telling you - Jason and I have not even one time had to fight her on taking her dose. Since the day we have started this program, since the minute she decided she was in it, she jumped in it – with the energy and the positivity I spoke of before. Kids are amazing and she is a remarkable little girl. She is becoming an amazing little lady, and will one day be an outstanding woman. 

I told her this exact sentiment as we were driving home from the allergist’s office one day, “I am so proud of you for doing this you know,” I started.

“Why?” She asked. I really don’t think she feels it is an option to not complete this therapy. I remember the conversation so well. It astounds me that a child her age could have such awareness about herself. 

“Well,” how could I word this and do it without tearing up. “When I was your age, I’m really not sure I could do what you are doing – eating peanuts every day, visiting the allergist every week. I think you’re really brave and I’m proud of you.” 

She paused a second, silent, and then said, “If I were your mom, I’d make you.” 

Love this girl!

“What?” I said. 

She replied, “Even if you didn’t like the peanuts, even if you think they are not good. It’s the best thing to do.” 

I’m proud of the little lady she is and I think I know exactly what kind of woman she is going to become… anybody else have an idea?

What's It To Ya?

Greeting her upon arrival.

 Recently on a Facebook thread, a question was posted on the wall of one of the allergy discussion groups I frequent. The question is loaded. It is subjective. And in my opinion it can only be answered in one way, yet it had so many responses. The question: Is it worth it? 

The woman wanted to know if it was worth it to try peanut desensitization for her child; if it was worth the possibility of it not working. She wanted to know if her child’s “numbers” matched any of those that could be problematic or if her child could even be eligible for Oral Immunotherapy. Would it be worth the trouble, the consultation, even attempting.  

Waiting to eat that 1st peanut.

Now, on-line I don’t chime in on a large number of things. It seems that much has been said, argued about, or is simply not worth the time it takes to type. Often, I don’t feel I have enough information on a subject, I haven’t done enough research of my own to put in writing my personal opinion - I don't want to look like "that idiot," you know who I'm talking about! I’m not saying that I never add my two-cents, or have an opinion; I certainly do. If you and I were sitting next to each other, you’d certainly get a good eye roll out of me. And if I’m really passionate about a topic, you might never get me to shut up. It just needs to be something that lights my fire when it comes to a Facebook thread or other internet chat. 

The first face. Yuck!

Her questions caught my immediate attention though, because I remember those questions running through my head. I was there once, hemming & hawing, waiting for an answer to come to me. Expecting one person to tell me the right thing to do; the best thing to do. Hoping for someone, something to tell me the best answer for us, for our family – telling family members that this is what our decision was, just waiting for them to disagree and give us a better option. Eventually our right answer came to us, for us. Just like it will for her. After 35 – 50 people chime in on that particular thread, after she researches hours upon hours on the internet, chats and chats on different sites, talks to every person she can about the issue, discusses it with her husband, her family members, her doctor, gets a first opinion, a second. Finally she will rest upon a decision. Finally. 

Getting the taste out!

I came upon this question, 'is it worth it?' right around the time Maddy ate her first peanut – a day we will never forget. Up until this point in her life Maddy had not really tasted anything resembling a peanut even. She was only two years old when we’d learned of her allergy. She’d never been one to try the peanut butter alternatives; she’d always thought they too closely resembled PB for her tastes - that texture & taste was alien to her. Desensitization treatment to this point had consisted of increasing amounts of peanut ‘dust’ in a fruit juice concentrate. And then as the flour became too much to mix into juice, we mixed the flour into applesauce, pudding, whipped cream, or even ice cream. It eventually becoming more & more difficult to hide the burnt peanut flavored flour as it increased in quantity. We were finally to that first peanut with high hopes of her loving it! 

That wasn’t quite the way it happened. Maddy’s entourage followed her in that day - bulbs flashing, videos rolling, and cheering her forward. Maddy hid her nerves with smiles, jokes, and a wall of confidence like no other seven – year old I have ever seen. Nurse Amy had Maddy’s first peanut envelope and a giant smile waiting for her the moment she walked in the door. Vitals were checked, cameras were loaded, and Maddy’s shaking hand was out ready. The first bite was taken, though quickly and with a confident ease and then came the faces. Oh, the faces. She did not like those little peanuts, maybe as much as they did not like her little body! This time, though, they each accepted each other. Maddy made faces, ate the peanuts, and the peanuts accepted that and did not react in her system. We had balance! 

Always such a good attitude, though!

So she ate them, and she ate them. And she kept eating them all week long. She made terrible faces when she did it, but she did it like a champ. She had no reaction to them because her body was and is doing exactly what it is supposed to - becoming used to this foreign substance that it once needed to attack. Desensitizing. Amazing!

A few recent pieces have come out regarding desensitization that are important in the allergy world, especially to allergy mommies & daddies. One study, in relation to the effect OIT has on a peanut allergy patients’ quality of life after the completion of a desensitization program. The conclusion? And I quote, “peanut oral immunotherapy significantly improves food-specific quality of life.” Duh! The children (ranged in ages 5 – 18) found improvement in a number of areas - allergen avoidance, dietary restriction, risk of accidental exposure, emotional impact, food-related anxiety, and social and dietary limitations (see the abstract here) . More recently, in my mailbox, was the “Food Allergy News” bulletin from the Food Allergy & Anaphylaxis Network that highlighted an interview with the American Academy of Allergy, Asthma & Immunology president, Wesley Burks, M.D. - blah, blah, blah… right? His point, though, was that, along with two other possible treatments coming up, with Oral Immunotherapy, “we know that the threshold for these children will go up during treatment and that we can achieve a desensitization effect in most patients.” . So, the real question, to me should really be, "why not?" All signs point to yes, It is worth it! Yes, yes, yes and yes!

Such a smart little girl!

I pointed out to Maddy, again, my amazement of her - that she was taking this on, eating peanuts when peanuts were her poison and that she obviously had distaste for them. Maddy told me, “even if I don’t like the peanuts, I’m going to eat them. They’re just my medicine.”  Have I mentioned to you that she is just seven? Such a smarty!

Each morning and night – when she is eating her dose, I have been amazed at her attitude and gumption. She has been nothing short of incredible. At this age, to understand, be challenged even, to complete this program no matter how bad it tastes! No matter how hard it is to wrap her mind around the fact that she is eating a peanut, poison. Because the reality is, it is worth it, in the long run, it is absolutely better for her to know she won’t accidentally ingest something at a birthday party, a Christmas party, or something as small as a bite of a cookie. Even if she has to eat peanuts every day for the rest of her life, she knows her safety and her life are not just important, they are everything to us. Her life & livelihood are worth it!

Friend, Dear Friend

Maddy & Livvie

One of my favorite quotes about friendship is “A good friend is cheaper than therapy” (author unknown).  In my life, over a beer, during a car ride, in the classroom, or on the phone, many a conversation have helped me hash out my problems or theirs. My friends are as important as  family and we’ve raised Maddy to believe friendships are not only important, but essential components to a healthy life – expecting her friends to treat her well and to treat her friends the same – by giving and getting love, support, and a sense of belonging. 

The girls playing at the desk.

In our lives together, Jason and I have not only been lucky, but blessed, to have an amazing group of close friends. This remarkable group of people has been a part of our lives since college, some before. At Michigan State we studied together, partied together, and at one time or another, lived together. We’ve stood for each other in weddings and have held each others' newborn babies.  Every time we see each other we hug each other like it has been a decade since we’ve spoken, but pick up conversation as if it was just yesterday. We try to get together when we can but also reserve a few very special days out of the year just for each other, New Year’s Eve, the Fourth of July, and an especially fun day in September.  Even as we age and can hardly handle our adult beverages anymore, we party like 30-something rock stars – stay up late around the fire, argue over politics, religion, or any other controversial topic that may come our way and maintain every bit of love & respect for each other through it all. Even as the group has grown to include new spouses and the occasional neighbor or two, this is our core. Our history. 

Amazing Doc - Doctor Mayer.

Amazing staff - Nurse Amy & Nurse Lety.

Madeline has watched us with this group of friends and others. She has been witness to how we treat our friends, as well as how we expect to be treated in a friendship. Jason and I would do anything for them because our true friends, this group I speak of and others I haven’t even mentioned have been with us through thick and thin, especially in recent years. When Madeline was first born, they were there at the hospital & then the house to hold her little hands. When chemo threatened Jason’s hair, these guys shaved their own heads. When trips back & forth to the oncologist were simply too much - we were given the amazing gift of a cleaning lady to help out with the house - now that's friendship! We are surrounded with beautiful people who hold us in their hearts and them in ours. Friends keep us going at times.

One big happy family!

The beauty is that in watching Madeline experience peanut desensitization, she is learning more about friendships, too. Madeline’s best friend, Conley, will always be her BFF, “till we die” they say and we are sure to keep a regular play date going. But the “peanuts gang” has a different connection that has provided Maddy a chance to show empathy, caring, and support that she has not needed with her BFF so far, but may someday. When Ella graduated she had a chance to see where she was headed with the program. When Izzy had to stop OIT because it was just not working for her, we said prayers, talked about Izzy's feelings, her family and what it might mean for her future. We still do. And when Livvie graduated it was bittersweet. It was hard for Maddy to say good-bye but so awesome for her to see her really great friend moving on to such great things. She wanted nothing more than to be there to see Livvie eat that peanut butter and make sure all was well with that final challenge. Madeline has treated each situation with the dignity and grace of a mini adult; I am impressed and proud of her!

The girls sitting still long enough for a pic!

Maddy has felt nothing but love and support from the staff and patients at Dr. Mayer’s office – exactly what I hope for her in life. Everyone cheers her on - like this time as she went from 250 mg of peanut flour to 500 mg - the last stop before a peanut -  and she does the same for them! The day Livvie graduated was a happy one for everyone – another success story, no problems for Maddy, just another day of playing with friends for Livvie, and just another (exhausting) day at the office for the staff - and another reason to feel hope for those living with food allergies! As the parents bonded over next steps, Maddy, Livvie and the rest of the gang just had fun – because sometimes that’s what it’s all about, too!

Take Care Now Y'Hear!

175 mgs and a smile!

Jason and I have always taken great pride in the balance we’ve had in our lives. We’ve always had beautiful friendships with a long-time support system, upheld a strong relationship together, and have had an amazing family to help us raise this gorgeous child of ours. We did this happily, healthily, and without major incident for some time. Sure we had the same problems as everybody else – not enough money, time, or resources as the rest of the world to get our yard work done, keep our house clean, or even to go on a family vacation every single year. But we were and still are a happy family with few complaints. We had each other! Then, food allergies hit our life and we had to adjust. No problem, no problem – we adjusted. Then cancer hit, as well. We adjusted then, as well – big time! Life happens. When life happens, though, balance is thrown off. It takes time, energy, and a lot of work to maintain any semblance of balance and let’s face it, taking care of ourselves is one of the first things to go and one of the most difficult things to preserve, even if we know better!

250 mgs! Biggie!

Maddy was diagnosed with food allergies when she was just over two and it was devastating and difficult – how do you keep a two year old safe when you have so many plans for her? How does this fit in with school, sports, life… how do I leave her with anyone else? I questioned everything we did with her or without her. Somehow we took that idea of balance, though and went with it – modeled with her involvement and caution and taught her how to take risks and be safe at the same time. Food allergies are an ongoing management issue, though, as every mother and father that deals with them knows. No stone goes unturned in planning every daily activity weeks in advance, going only to restaurants that are recognized, calling caterers of weddings or skipping them altogether, preparing with Vacation Bible School coordinators in advance, training people to use Epi-Pens, helping with food menus, bringing in extra snacks, preparing meals … planning, planning, planning. Anything to keep your child safe, happy and healthy, even if it throws off the balance of your healthy, happy household. 

Maddy cuddles with Dad on her birthday.

Jason has been treated for cancer for nearly three and a half years now. Of course this news was overwhelming and shocking. At 32 years old, who could have imagined such information? He started with a colon resection surgery in July 2009, 4 days before Maddy’s fourth birthday, which led to his first six – month round of chemotherapy.  The following fall, a PET scan revealed the colon cancer had traveled to his lung, requiring a lung resection surgery and 6 more months of chemotherapy. We were exhausted at this point, yes, but we had life to attend to. After finding another small spot in his lung then, he received six weeks of radiation, and continues to receive treatments of a drug called Avastin, which is to prevent the growth of new blood vessels that feed a tumor.  Amazingly, my husband has had tremendous health otherwise, the most positive attitude, and a ridiculous sense of humor that has kept him and myself moving right along. Aside from certain chemo days, he has worked right through most of his treatments, even receiving a promotion to detective along the way! I mean, really, the man is my hero. He is an unbelievable father & partner in my life, even on our worst days, I love him more today than I did the day I married him. Something most people are blessed to not know is how much cancer can test a marriage. You may believe ‘the big C’ would bring you ever closer, and it will. But there are also times it tests your limits, hurts your heart, and throws you both off your equilibrium. 

A good friend of mine, a math teacher, has told me many times, “everything has a tendency to disorder.” And she is right. Ever notice your house cannot stay clean? Your car? As soon as you check off items on your to-do list, you realize you’ve forgotten a few? It takes work to keep yourself up as well!

I will be the very first person to tell you, “be sure to take care of yourself,” when you are in time of need especially since I have been there myself, but I’ve recently realized I don’t follow my own advice. I know moms are their very worst enemies when it comes to taking care of themselves. They just do for everyone else before themselves, so much until they are worn out entirely. Usually it’s moms that don’t get enough sleep at night, skip exercise routines, forget a doctor’s appointment, forgo a shower, a meal, or drop their own hobbies or interests all together for their children and families. I’ve heard many a conversation about forgetting to look in the mirror even before walking out the door! 

Spoons!

There are many things in recent days that have made me realize that I am not taking care of me. I went to the dentist for my annual cleaning only to find out that my annual cleaning hadn’t occurred since before Jason’s diagnosis! I remember cancelling the appointment; I had no sick days left due to his chemotherapy and didn’t feel that I should take any off for myself! I simply never rescheduled. I didn’t even realize it had been so long, I just went about my business taking care of my family. There are times that I just don’t know how I do all that I do! And then I look around my house and see that everything has found itself in disorder and dig in again. Because we do what we have to for the ones we love. 

It has taken me a lot of time to realize a few things about my life and those things remain constants. I have to find time for myself, time to do the things I love, even if it is terribly difficult. Last year I joined a singing group and perform with them twice a year. I love the people and love the joy in singing and performing, even if I’m not the solo act. Also, every now & then, even if it isn’t a regular thing, I have got to have an occasional ladies night. My girls - I love ‘em, I laugh with ‘em, and I couldn’t live without ‘em. They know what I'm talking about and when I'm talking about it – my work girls, my PTO girls, and my college friend girls! Man, I have great friends! On top of all of that, my family – I have to get home now and again, for a good ol’ game of spoons with the fam! Isn’t it nice when you know that you can just go home, get centered, and play a game with your family? It is always good to go home. These things I must have to keep me sane, keep me, well, me. A healthy mommy is a happy mommy!

It's only up from here!

Maddy’s peanut desensitization has become our focus. I’ve drawn that line in the sand for many other activities in my life. I’ve dropped many things that have lost importance to me and now I am beginning to bring focus back to things that are important; one of those things is me. And the balance shifts – the scale is different than what it was when Jason and I were first married; some things remain important yet others have changed. I need to figure out where we all fit and how. Such is life now. What hasn’t changed is that I am just as important to this family as I always have been, and in order to give them all of me, I need to carve out time for me, take care of me. 

Peanut desensitization takes full commitment from everyone involved and even though Maddy practically flew through the weeks of October 24^th with 175 mg and October 30th with 250mg of peanut flour, there are always worries, so taking care of myself is important. She flew through peanut flour so easily though, that it began to seem too easy, almost boring! We began to knock on wood, and “wait for the other shoe to drop” kind of easy. Halloween came and went. Talks of “next year” and the candy she will be able to eat passed our lips. As she screamed through the neighborhood, our friends and family remarked about how her allergy hardly slowed her down anyway and how next year will be so amazing – next year, next year, next year! Hopefully next year – we'll be that happy, HEALTHY, balanced family again!