It Takes a Village

Fireworks gazing.

More than once in my life as a mother I've said to myself, “Thank God I am not alone,” when it comes to raising my baby girl. And when I say I am not alone, I don’t mean  'I ‘m a married woman with a Superhero husband putting in equal to more hours 'round the house, helping with our babe, doing laundry, cooking, cleaning, taking care of the animals and other domestic duties.' We all know that’s just not true. My husband is pretty fantastic – he is hilarious, works hard at his own 9 - 5'er, and is a better father than I ever imagined he’d be, but when it comes to all the rest - we both struggle to balance our life - family, work, household duties and still have time for each other at the end of the day. Our focus is family, mostly our daughter and the other important moments in life - romance, friends, 'Great's Anatomy,' and, a stiff drink once in a while. The reality is, though that we couldn’t and don’t do it alone. My husband and I rely on so many people to make it all happen. That old adage is true and has been a central theme in our home since Maddy was born - it truly takes a village to raise a child, and we are ever grateful for those who “live” with us!

Maddy's 'Entourage,' dress up in Star Wars theme - 2011.

Some of the very important members of Maddy’s “entourage,” or our village, are Jason's family. On this side of the family she is the first and only grandchild, the Princess of the family first and foremost. Shortly after she was born, in fact, Jason’s parents, and his godmother sold their two homes, about 75 miles from us and bought one home to live in just a few minutes away  just so they could  be a part of her daily life (and ours, too, I should hope!). In fact they weren’t just a part of her daily life; they became her daily life! Grandma and Nanny (as Jason’s godmother came to be called) were Maddy’s daycare providers from the day Maddy turned 3 months old and I, begrudgingly, returned to work. Every day I had the privilege of sending my baby off with people that I knew loved my daughter nearly as much as I did, something few people have in their daycare experience. As she grew, her bond with them was fortified daily with education, experiences, and the greatest ingredient – love.

Don't get me wrong, Jason's family are not the only village members who've made a difference in raising Maddy, just the small section of focus for now, and that little borough, Grandma, Papa & Nanny, just a few miles away from our home, have been there for us through thick & thin. When cancer came calling, just before Maddy’s fourth birthday, not one of us could possibly have expected it. However, this “village” took it upon themselves, to help us raise Maddy together. They assisted at our cooperative preschool while I took days off for chemotherapy. Grandma & Nanny picked Maddy up Sunday mornings and took her to church so I could take just 3 hours off to myself once a week - some much needed me time to rest, relax, and, let’s face it – get the dishes done.  When the cancer spread & we were on surgery two, Kindergarten had started & they carted Maddy back and forth from the hospital to home, then back to our home to see me for just a few hours. It was hard on them, but it was all for her, for us.

Chef Nanny & Maddy.

They do a million little things that add up to big things - take Maddy in to the doctor, keep her home for sick days, and are there if school gets called off. Papa is the first in line to pick her up from the bus stop when we can’t and take her home when meetings run late. Nanny cooks with her, crafts with her, and they all read, do homework, fish, play, and pretend with her. The list goes on. To count what Nanny, Grandma and Papa have done for us in these years would be impossible. I’ll stop while I’m ahead. I cannot think of a time or a situation that they have let us down, been unable to help us out, or be a part of our lives when we needed them - and we have asked them too many times to count! They are remarkable, truly remarkable.

Often I am reminded of my luck. I do reiterate my thanks to them with a “thank you” out the door, on the phone, or in a text regularly, but truly - a million thank you’s couldn’t be enough. In fact, when many folks hear & understand the relationship we share with Jason’s parents and godmother, they share stories about themselves – about their pasts, their own children, and what they wish for the future. Many wish their families were closer, or that they were once close with family when they were young, or another story that always solidifies our extreme gratitude for our own situation. When it comes to Maddy’s peanut allergy, we realize our appreciation for them especially  – to have family help manage food allergies is a blessing. They are trustworthy and it helps that we are not alone – all adding up to allowing Maddy’s life experiences to be more rich and positive.

One of my favorites - all  three surround her & support her, as always.

I was especially reminded of our good fortune on two separate dosage increase appointments in these past weeks. Both September 5^th and September 12^th, Maddy did exceptionally well. Her body and mind were in it to win it! She had no hives, no tummy upset, and no issues to speak of. Also, both visits were oddly quiet at Dr. Mayer’s office. In fact, the good doctor had the opportunity himself to sit and chat. Each visit, I was able to speak with the support moms that I’ve come to know and love. One of the moms mentioned she didn’t have much family close & her daughter, unfortunately, had no grandparents nearby to visit regularly. I thought of the laughter & smiles that come from Maddy’s visits with all of her grandparents and was sorry for that for her. The other mom’s concern was specifically food allergy related – her daughter isn’t allowed to stay at any friend’s or even any grandparent’s due to the tree nut/peanut allergy, again, reminding me of my luck and gratitude. Not only have I found our village to be exceptionally supportive in raising Maddy, they have been there for us through so much, helping us step by step, rung by rung. I couldn't do any of this, without them.

What's More Important?

Halloween 2009 - Annie theme

 

Ever been asked the question “what’s more important?” when making a decision? In most cases it’s a pretty simple answer, right? Heck, in almost all cases, when it boils down to it, it’s damn easy. Your children. Family. Friends. The people in your life.  The people make the difference, the memories, the miracles; they are the pieces and parts that matter. 

So, when the question is raised, “what is more important?” it’s a no-brainer. Except the mere fact that we are adults. With responsibilities. And nothing could be more complicated. There are bills to pay, jobs to report to, meals to plan, and child-care to attend to. As grown-ups, we must pay attention to the economy of today and make plans for tomorrow. We dutifully shoulder the burden of our elders, while caring for our young. Responsibly, we watch the news, ads, & listen to NPR in hopes the best candidate will present themselves to run the country so laden with complications and distress it sometimes seems irreparable, hopeless, and beyond a shadow of hope for even the best man to fix, let alone the lesser of the two running evils. A wise friend of mine once said, “life is hard,” and we certainly know the answer to the question above just ain’t easy. Certainly not as easy as we’d like it to be. So, what is more important couldn’t possibly be easy to answer in every situation of our lives and we certainly cannot do it all.

Thus, when the question reared its ugly head in my brain days before Maddy’s next dosage increase, I had to consider it. Not only did I contemplate, in fact, what is more important, but also why I continue to beat myself up over the response. The real one. The way I needed to respond anyway. 

Days before returning to work – heading back to the classroom after my amazing summer off with my family & friends, I considered my options and it weighed heavy on my mind. I went into my classroom to get a head start organizing, moving & rearranging. I met with other teachers for curriculum planning and in an attempt to really jump the gun did some scheduling and other prep work from home. My head swarmed, as the days approached. Like most teachers, most people, really, I was under pressure - I had a considerable amount to do, little time to do it, and our big debut, was nearing – the first day of school! Professional development day one & Maddy’s appointment day merged this time and it was approaching, even though I knew what I needed to do, I wavered - how I could manage it all? 

The dose.

The fact was, however, I knew what had to be done -  I had to be at work. I didn’t have a choice. My emotional state went right out the window when my professional obligations trumped personal preferences. In this case, in particular - this day - Maddy didn’t need me there, even if my Mommy Drive tugged at my heart strings until my insides ached with hurt and regret. Aside from a tummy upset the last visit, she had been doing well with the increases. At this visit, Maddy would actually increase her dose to one with a more concentrated solution. In reality, it was a simple double of her dose as she’d done a number of times, but on the dosing sheet, it looked like a large jump – making my heart jump with anticipation & expectancy all evening I was away from that office and her. We had prepared better this time around - planned a better lunch, snacks and even extra applesauce. Jason could do this without me and had the added support of part of her “entourage,” Grandma and Nanny (his mom and his godmother, our child-care God-sends!). 

The bellyache & applesauce.

When preparing for work that morning, my eyes filled with tears as I thought about the fact that I wouldn’t be at Dr. Mayer’s office  to see Maddy increase her dose, there if she reacted, to be the one she tells, “Mommy, my tummy hurts.” To be her go-to person that day. I considered my good friend who would be making arrangements to get to her son’s Kindergarten Open House the next day, running from work, to the Open House, and back to work. I empathized with another friend who would be going to her daughter’s second day of school in order to be at our first day of school instead. My heart went out to a friend just returning to work from maternity leave, pumping on lunch breaks, running from one meeting to the next, answering e-mails while eating – doing everything maternally possible to make it out the door in time to get the baby home in time for dinner, bath and a little quality giggle time before bed. All women, parents, in the same boat, thinking the same question, agreeing to disagree in their minds, but living the lie anyway… what’s more important?  

Friends make life easier!

The question has come up time and time again for me in recent years. When cancer touches your life, though, people give you a free “you need to be with your family right now” pass. But For some reason when we aren’t going through hardships, or when you haven’t gone through them yet life gets harried, in the way and we tend to forget to prioritize. We become over scheduled, over booked, and lose ourselves. Sometimes, we allow other people to demand our time and energy. We forget where it is more important to spend our time or sometimes just can't find a balance between work and home. We don’t forget what is more important, we KNOW. It’s not that black and white. It is a question that can’t be answered simply.

 If the choice were mine, if I could be involved 100% in the most important aspects of my  family’s lives, I’d never miss one of my husband’s oncology appointments – including PET scans  or Avastin infusion treatments. If “what’s more important?” were the true determining factor in our days’ choice, I’d call in sick for myself once in a while or simply take a break. If the importance factor played a role every day, I would be able to attend every one of Maddy’s school party’s without keeping my phone on my hip for fear of the dreaded call with news of anaphylaxis, need for the epi-pen, or that the ambulance is on its way to the school. The truth of the matter is the choice isn’t always mine no matter how important it is – work, money, obligation. Requirement. So, why beat ourselves up, why push ourselves to do it all? 

Dosing hour is u

Jason and Co. were great to me that evening, sending me pictures, and texts, step by step throughout the evening. If I hadn’t been hosting my Middle School Open House, I probably would have been Face - Timing Dr. Mayer and watching it live! She did have a bit of a belly ache so snagged another applesauce from Nurse Amy by flashing her sweet smile  - more plans were made to avoid those stomach pains in the future and to prep for school, earaches and impending illness, but really, “what’s more important?”… continuing as scheduled with Maddy’s next dose and moving forward toward freedom from peanuts, or me having to be there for every second in her life? I survived, and thanks to all who are helping us, she will, too!

Back to School with Peanut Allergies

It is a busy time of year for us - sale signs adorn store entryways, deal flyers stuff our mailboxes, and the Target ads get funnier and funnier. Maddy’s birthday usually marks for us a silent countdown until those dreaded words are uttered in our house… "almost time to go back to school.” I don’t know who says the words first, certainly never me, though I may be the one who begins the lists in my head. In the home of those suffering from food allergy, back to school does not only mean an uptick in the good ol’ budget due to extra pudding packs, lunch meat, and Ziploc bags. Unfortunately, to parents of children with food allergies, back to school is a time of high apprehension and concern, no matter how many times you’ve been there, done that. 

Peanut desensitization holds many new promises!

Each day, our baby leaves our arms and is welcomed into those of the cold building called school where every child is supposed to feel belonging and welcome. I must trust they will take care of her for the day – feeding her snacks and lunch; wholeheartedly I need to have faith in a system that tells me that if an emergency occurs they will take the same care I would. Every day. Since the beginning of our desensitization journey, this thought has loomed. It came up at almost each conversation with Dr. Mayer and often with others, obviously it worried me. School. How would desensitization affect Maddy at school? Better yet, how much more was I going to have to worry about her being at school than I already worry about her with just a regular ol’ peanut allergy? The truth for food allergy families is that it is hard work. It is hard work to make sure your child feels safe, healthy, and happy. 

If you have a child with a disability, going back to school means reiterating your situation again and again... and again.  It means constant communication and being proactive with any and everybody that will listen, come in contact with your child or anything your child might touch. It is meetings with school nurses, teachers, and parents. It means 504 meetings, accommodations, and explanations. My checklist does not consist of just pencils, markers & crayons, but food allergy action plans, doctor’s signatures, and epi-pens. It asks questions like, “Who on your staff has been trained with an epi-pen and understand what anaphylaxis looks like?” and “Does your school have an epi-pen in the building, it's own prescription?” and also “Who will carry her epi-pen when there is a field trip?” even as far as “What type of sanitizing product do you use and what will you use to clean the tables?” Questions that make me nervous, squeamish, and teary-eyed, but necessary nonetheless. Interestingly, this is not a checklist that was handed out at Kindergarten round-up, Open House, or even at our first 504. This checklist is one made up along the way, as I’ve learned, listened to others, and experienced the hard way. This checklist is ever changing and growing. 

1st day of kindergarten.

We had always had great experiences with Madeline and managing her peanut allergy for a number of years even. She didn’t attend daycare, we had grandparents and a family friend that helped with that. We attended a cooperative preschool where I was tremendously involved on the executive board and the school opted to go entirely nut free for Madeline and another student with a tree nut allergy. We were involved in the community. We didn’t have just great luck, but had great love for these people, our bubble. That is until our bubble needed to become just a little bigger. 

Excited for school!

In kindergarten, Maddy was in a peanut/tree nut free half-day classroom. Since she wasn’t eating lunch there, and the teacher was a parent of a child with nut allergies, I felt comfortable with policies she had put in place – no peanut/nut items for snacks, no bakery items for birthdays and if any of these came in they were not to be used. Sounded good. I spoke to the teacher well in advance and she came recommended. Getting better! We went in at open house, spoke even more, I donated wipes, extra snacks, talked to the aide about her allergy, about the cancer situation at home. All was great!

Wrong! Slowly, the truth started to come out. Policies weren’t being followed. “Just in case’ snacks quickly ran out, which told me Maddy wasn’t comfortable with what was being served or her teacher knew she shouldn’t have what the parents provided. Parents weren’t being educated about how to read labels, although the teacher sent weekly newsletters about classroom events like “Lucky the Leprechaun,” Reading Buddies, or Quotes of the Week home. The teacher wasn’t holding up her end of the deal and I was certain Maddy wasn’t letting us in on the truth about her feelings about it all just yet. She loved her teacher and didn't want to say anything bad.

Finally, Maddy told us in tears that a substitute teacher told her she had to eat the snack provided or not have a snack at all, I finally snapped like the salty pretzels being served that day. The pretzels were bagged in separate Ziplocs with no ingredients provided – again, against the initial policy – not only do we not know what could be in the pretzels that could make Maddy or the other peanut/tree nut child react, but what cross contaminants could be lurking on the hands or counter of the person’s hands that bagged those pretzels? Yuck! So, I walked in prepared to calmly discuss this with her. I also knew that this wasn’t the first time the snack had been okay’d against the policy this teacher had set forth. She needed to figure something out here. Policy wasn’t being followed, Maddy felt terrible… she’d see the problem. Wrong again! In my emotional state, Jason on chemo, my baby being mistreated & just starting kindergarten, and all this while I was working full time - I was pretty well a wreck. 

The girls at the office all getting their dose near the same time.

Her reaction was not what I expected. Rather than apologize, she went on the defensive, pulled Maddy in, asked Maddy what she should have done. Even at five years old, my daughter knew what to do and she did the right thing. She had asked for a different snack. This just made me cry (like I said, I was not in my top emotional state). This teacher was on a a power trip. Rather than do the right thing, she chose to mess with the wrong mama! It was on!

The rest of the year only went downhill. At one point I learned that Maddy and the other student with food allergies had been asked to leave the room so the other kids could have birthday treats from a bakery. There was even one celebration when the children were a part of a celebration where two very famous letters of the alphabet get married (I’ll give a clue… you very rarely see them apart, like in the words queen, quill, and quart). Everyone was invited – parents were told at the beginning of the year, children were given roles in the wedding, and a real wedding cake was ordered. The kids were excited. Maddy talked about that cake and how she hoped it was okay for her. Not one time did the teacher contact me in advance about what I could to help in preparing Maddy, or to help make a cake, find a cake, or help at all. Mind you, I was a helper. I did many things, donated, provided extras for other students. The wedding cake was not okay for Maddy to eat. Let me repeat. The wedding cake was not okay for Maddy to eat. It was the first thing we did when we arrived – look at that cake. By that time in the year, the teacher and the aide in the classroom were avoiding us, it was that bad. They knew. They knew they did not do right by my daughter. It was a sad state of affairs really.

Even as I write this I am fighting back tears. I am a mother and a teacher. It breaks my heart to think that my daughter was treated like a second class citizen in a classroom because of her allergy, a disability, something she has no control over, never asked for, and for even a split second was made to feel unhappy because she couldn’t eat a cupcake. That is exactly what happened. She told us that it made her sad that she couldn’t have the same snack as everyone else. My back to school list really includes a wish, really. I bet you can imagine what it is.

Just waiting for the day when peanuts aren't an issue at all!

Luckily, we are past that kindergarten year, and have moved on to a school and a plan with a much more responsive system in place. I thought about this as Dr. Mayer, Nurse Amy and Nurse Lety, worked with Maddy this time around. She increased her dose with very little problems - a mild tummy ache, but nothing serious and no hives this time – amazing!!! As they handed me the food allergy action plan (which Dr. Mayer said next year we will not need – seriously?!?!?), I still prepped myself to educate, advocate, and explain, explain, explain! As parents, no matter what the situation, no matter how great the school, the educator, or administrator, we will always be our child’s first line of defense. Always.

This One Goes Out To the Ladies

Before the dose, vital check.

I’ll be honest; my daughter’s peanut allergy has become one of my own defining characteristics, a part of me. “Hi, my name is Sara, I am the mother of a child with a peanut allergy,” I feel I need to preface every conversation with this explanation... or join a support group. It is amazing how often it enters into conversation. When making plans, talking to friends & before beginning the lengthy explanation at any outing, vacation, or any new adventure in our life, it is obviously important for it to be in the forefront of the convo.  I live, eat, and breathe making sure her life is more comfortable, safe, and free of danger. The peanut allergy is our reality, but doesn’t need to define us as individuals or as a family and we work toward that, but sometimes it is a relief when others “just get it.”

That is not to say our family & friends don’t try, they absolutely do! Close people in our life, the ones we call family and friends – we couldn’t ask for any better, we really couldn’t. They have supported us in ways Jason and I couldn't imagined. When I consider the level of support, the outpouring of prayers, love, and affection my family receives, I am blown away. So, when the question comes from family, friends and co-workers - “How is Maddy’s peanut therapy going?” My response is much like when people ask about Jason & his treatments - optimistic, somewhat quick & to the point while showing them my true appreciation for their thoughts & prayers. “Great! Smooth sailing! She is doing so well with it! Thanks for asking.” I don’t want to show my anxiety about giving her the peanut solution, how difficult it was to leave her the first time with other people after giving the dose, how hard it is to allow anyone else (yep, even my husband) to pull the dose to give it to her, or how scary it all is in the very pit of my gut at times. If people ask for more, I’ll give it to them – like how amazing this process is, how she is more likely to react if she exercises, or what the dose looks like now and what it will look like later.  Sometimes those I am talking to will share with me something about their own allergies or about a family member or friend who has allergies, but not many have the time for more, or even know what to ask. And that’s fine. Bottom line – Maddy’s fine, she is doing well with it and the plan is working, it is really working!!! 

Maddy's OIT support group.

Maddy is not the only one the plan is working for. She is one of nine patients participating in peanut OIT with Dr. Mayer and for this dose increase appointment Nurse Amy made the appointment intentionally with “the girls.” As I know them on Facebook, “the girls” are Ella, Livvie, and Isabella- three bold and beautiful little girls who’d begun desensitization in varying degrees prior to Maddy. I’d been in contact with their mothers via a Facebook group for months. MONTHS! In my research of Oral immunotherapy, I’d come across a number of groups - these women and their stories were among them. They shared stories, links, resources, questions, and more. I’d bared my soul to them in somewhat anonymity up till this point. These same women also shared a similar identity as me – we had a connection to peanuts that brought us together in fear, anxiety, and desperation. These were some of the very people that brought me to Dr. Mayer and desensitization. In actuality, these same women moved me toward taking the first steps by showing their own valor and tenacity and by forging ahead in the allergy world and most importantly - no longer allowing peanuts to rule their lives. 

The OIT girls goofing around - not a side effect!

The afternoon at Dr. Mayer's office was amazing! Maddy had very few concerns with her dose increase and the girls clicked immediately! They instantly hit it off and played together (more like ruled the play room, allowing no boys at all!) while the parents observed intently. We all tried to play it cool, all while keenly observing for signs of a reaction, especially those of us new to this. Jason was even able to chat it up with another attending father, while I met the moms. In my mind, these moms and these girls were heroic. They’ve paved the way for so many of us behind them and are successful; they are achieving the impossible – beating peanuts! These amazing women are amazing models for their daughters, and mine. 

In my life, I am lucky to have strong and beautiful women by my side – my mom, my mother – in – law, my sister & sisters-in-law, my own Godmother & also my husband’s, my pastor, my daily confidantes & great friends and my co-workers. It’s funny, as a young woman, I had few girlfriends, surrounding myself with mostly men, well boys. I seemed at ease with them, no problem to be “one of the guys.” As I have aged, or matured, rather, I find women bring strength and balance to my life. They understand life when the honeymoon is over. They get it when seven months into pregnancy and all you need is someone to tie your shoes, do your laundry, and cook your dinner. They feel you when seven months after pregnancy you still want someone to do your laundry & cook your dinner, and you've given up shoes that tie because they add too much to your getting ready routine. They completely get you when your night out is a night in with the girls and you come home entirely sober, smiling like a drunk, and happy as a clam that you got to have some adult conversation, your own meal, and one night all to yourself, a bit different from men. Women complete me. The women at Dr.Mayer’s office are another facet, a cluster where I belong & need to speak freely about my obstacles with peanuts & allergies - where they get me, whether I see them in the office or "like" their comments, posts & pictures on Facebook, another group I can come home to. Thanks, ladies, all of you.

Helping check vitals after dosing hour is up.

Next!

Maddy's turn!