Gotta Have Faith

2009 Gooley Family

It is difficult to ignore when a child, teenager or most recently, an adult, is lost to a food allergy related accident and it hits the news. Events like these should be prevented one way or another through education, better training, or quicker response time - whatever the case may be. These incidents become lodged in your mind when your child or you yourself are anaphylactic to food allergies. Even now, since Maddy has become desensitized, even beyond ‘bite-proof,’ to peanuts when big news like an allergy related death breaks; I can’t help but think, “That could have been my child!” How fortunate we are to have found OIT and what a miracle it is that OIT has worked so well!

Every day since Maddy graduated from peanut OIT a little something special happens for us that makes us realize just how amazing this scientific miracle is and every day we count this as an extra special blessing in our life. This goes for our life with cancer. We count our blessing and we live on, everyday our faith growing greater – it has to when faced with these two beautiful miracles!

Not surprisingly, for the last number of years, our role in our church community has grown tremendously. Faith in our life has grown tremendously and we've grown with it. Our church came to us, almost literally, at a time when we needed it most, during Jason’s first bout with cancer and so, in return, we went to them. And they have been an incredible force in our lives.

Maddy & Hayden raise funds for pastor's sabbatical fund.

As a young adult, I didn't know what I believed or where I belonged. I had been raised in a different church than the one I attend now and my views, not so much strayed, but were challenged, as I entered adulthood. When we had Maddy we did not attend church unless we were attending a family function - I always felt that as long as I raised my own child well - to tell right from wrong, good from evil, modeled good decisions and goodness to other people - I would lead her down the right path. And I still don’t disagree with that; and certainly I would never disrespect anyone’s faith choice – as long as their moral & civil obligations hold up – but the community that we find at church is like no other. I never regret going, I love those we know there, and we've been very active members - participants in boards, helpful in Sunday school, we love the fellowship activities and do what we can when we can! The messages our pastor sends out to us always seems to hit home and we take those messages and to heart. 

When we first began attending church more regularly, when our family was first in need, Maddy was unable to eat at many of the coffee hours during fellowship following service due to her peanut allergy. Maddy was certainly the star of the Gooley show, though and was present regularly – her Grandma Linda and Nanny Lou, Jason’s Godmother, took her weekly to service in order to give me a break during chemo. Slowly, as we became more visible, more frequent attendees at church, Maddy’s presence and her peanut allergy became very well known. There was hardly a Sunday that Madeline couldn't eat at least something after service, even if it was only sliced fruit and cheese & crackers – every item checked and rechecked. There were some people that even sought us out to let us know that special preparations were made specifically for us, for her – the kitchen was washed, the utensils prepared, and all the ingredients were kindly checked, and often brought with them. What care they took.

Trunk or Treat - 2012 Gooley Family theme - Can you guess? 

As Jason is in his third round of chemo, and Maddy has completed OIT, our church continues to care for us. Each week, either one or two meals have been prepped for us. This time, though there is no concern for peanuts, no worry of cross-contamination and no bother that she will get ill from a peanut issue. It has been extremely helpful to have the help as Jason works extra hours the time he is not on chemo – he is an amazing man! When he is on chemo, he is ill for about six days straight. The man does not catch a break! 

We don’t just get coffee hour and meals from our fellow church members, though. As members of such a beautiful community, we have always belonged, always felt welcome - whether we can get there regularly or not. There are thoughts and prayers going in and out for us and people constantly asking about Jason and Maddy and lifting us up in their devotions. When I am there I am hardly left alone because everyone wants updates on my family - it is wonderful that everyone cares. We are a part of something special there.

2011 - Annual FCUCC baseball trip! 

 We have been battling this horrific disease, cancer, for four years now, and Maddy had been avoiding peanuts due to the threat of anaphylaxis for seven years before undergoing peanut desensitization treatment. In that time we'd spoken with so many folks in and out of church – face to face, on-line, and over the phone that use faith as a way to connect. It’s always both comforting and interesting. There are so many different perspectives on how faith carries a person through difficult times. I think I have the beginnings of a thesis! Every view, every word is delivered with good intentions – to make us each feel better - and it does, EVERY TIME. Every word of hope, prayer, and courage sent our way strengthens us and empowers us to keep living life positively. I thank you all for those words.

When life throws us lemons – we all hope God will throw us a miracle, but it helps to have wonderful people waiting with you! 

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!

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.

Doing the Best I Can

The weeks that followed Maddy’s Rush Day were a test in this mother’s patience, faith and nerve. Only a fraught mother of a child with a severe food allergy could feed her child poison two times a day for the sake of protecting her “in the long run.” I believe in Dr. Mayer’s plan, have confidence in his staff & in the end product, and trust that we are doing the right thing, nonetheless each time I drew the medicine out of the bottle, placed it in Maddy’s mouth & waited with her, I second guessed myself just a tiny bit. When I give her Tylenol, Motrin, or other medicine I check and recheck the dosage. Imagine my unease in the case of peanut protein and my peanut allergic baby. Best case scenario – I was doing it right. Worst case scenario – I had the epi-pen handy. Just as anytime she’d taken a bite at a new restaurant, a new food, or when I’d seen the school’s phone number flash across my cell, I held my breath for the worst. 

That first day of home dosing was the worst… for me. I planned nothing. She & I did nothing. Fortunately we are in the stage of our summer where we are okay with pj’s, coffee and terrible TV all morning if we darn well please, thank you very much! This gets us into trouble later when school starts, but for this particular morning it was perfect. However, I watched her like a hawk, nervous as could be. The rest of Maddy’s weeks with this dose went truly well. She took the 1 ML of Solution C with great confidence every day, reminding me each morning and night of the time if she thought I forgot - yea right! And letting me know of every single itch on every spot on her body for the following two weeks… and we looked at every itch, tickle, or bother that she couldn’t see to be certain that there were no hives taking over her body, but by day four they were none. She did have a few hives the first few days, small bumps that if I didn’t know any better I would not have even thought were hives, but they were gone a few days in. That was it – her body was becoming desensitized to the amount of peanut protein in the solution. How cool!

1 ML of Solution C, 12 hours apart daily.

Physically, she has been taking the dose great. Emotionally, it took a bit of time to stick, I think. Maddy is much like both her dad and myself when it comes to showing real emotion. She is funny, of course and uses her humor to deflect any pain or upset that she may be feeling. Sometimes, she may not even know what or how things may be affecting her when they are. This started young and I’ll never forget when I realized it. Her daddy was going through his first round of chemotherapy after being diagnosed with colon cancer and having colon resection surgery at age 32. We thought she was just fine, even though she was just four years old, we had all powered on around her making her life as normal as we could. She attended a great cooperative preschool that helped us so much, we remained very positive and we had that amazing network of family & friends we hold in our bubble surrounding us. Jason even shaved his head in preparation for the treatments in September and for Halloween that year, Maddy went as Annie, he as Daddy Warbucks, and I got to be Miss Hannigan – fun times! Through the pain there was laughter and much fun, but of course there were tears and, at times, distress. I remember this time in particular because it made me think twice about how I treat my emotions in front of her. I had my moments, my meltdowns – making the bed, making dinner, laundry, taking a shower, when I simply needed to sit down and cry. Maddy found me in my moments every so often. Rather than tell her what I was upset about my line was, “Mommy’s just really tired,” then picked myself up & got back to my mommy business. Mommy was tired, but that wasn’t the whole truth – I mean come on, I was crying about all of the other things – cancer, chemo, and the other unspoken possibilities that come with “The Big C.” 

So, when Maddy melted, she had a “I just need to cry because life is getting to be too much for me at the moment and everyone keeps telling me my Daddy is sick and what the heck does that mean because sometimes I get sick and does that mean I’m going to have cancer and have to get chemotherapy and what is chemotherapy I know you told me but I don’t really get it and I saw kids at the hospital with cancer and they were really sick and am I going to have to go to the hospital and it was really sad when dad was in the hospital and I don’t want him to go to the hospital again because” meltdown, but she only said, “I’m just really tired.” I hugged her and we both cried. I knew what she couldn’t verbalize. Just as I couldn’t always, but when she said that to me, I started to tell her more of what I was sad or mad about. I started to tell her that Mommy was sad that Daddy was sick from the surgery that took the cancer out, or that he was sick with the medicine that they gave him to make sure no cancer would come back. I wanted to give her more words. She may have been just four, but she was dealing with so much. We all were. 

Maddy doesn't always let you in on any worries.

So, when a few days into desensitization Maddy shakily whispered, “Mom, I don’t know why, but I feel like I want to cry.” I knew the pressure of this was getting to her. As a dad, Jason wanted some answers, rightfully so. He wanted, “Did something happen to you? Did somebody say something to you?” answers. But as a mom, I just knew, this was my baby telling me she was just tired; one of those moments. Pressure was building. She needed mom to help her put it into words, give her some consoling, and hug it out. I learned a lot about myself as Jason has gone through cancer and treatments, too, that I can’t do all of this alone, that I need other people to help me, to walk through this with me. I have reached out in the last few years to people I had never considered that I even needed – church, co-workers, Facebook support groups, friends and family; and in ways I never knew I needed – organizations, creatively in projects, writing this blog, pouring myself into work, by sometimes taking a break, and by simply just crying. In what ways do kids have to work out their emotions? They don’t know how yet. It is my job to help her figure that out in safe and caring ways. I hope and pray that I am doing it right.