The perfect storm of few positive changes, new marks, less sanity, more daily or double injections, little sleep, and an uncertainty of when those medications will end has not been easy on my marriage.
Sometimes, I want to be calm when I cannot. Other times, I want to cry when I cannot find tears. I often hide behind a book or try to sleep because I am out of energy and out of words. We both do this at times even though we try our best to stand together. Sometimes it is exhausting.
We try our best to communicate naturally and normally. Most days, it happens with ease.
Other days are not so good. We both find our own ways to cope and sometimes it is not in unison.
For a few weeks, it felt like we were more out of sync than ever. It was troublesome and created new stress for us. I’m sure many who have been married for a long period of time have had similar glitches over other reasons. Not us. Brendan and I have always found a way to be in sync. Our secret has been to somehow be exactly what the other needed at precisely the right time. So this was scary and strange, uncharted territory that I did not want to travel. We were our sadness instead of our solace.
Sometimes, finding time to say the words that are difficult to speak is all you need.
This weekend, we were given the gift of laughter and time together to celebrate Brendan’s birthday. Though the weather was fiercely cold, our puppy grew ill, and our restaurant choice turned out to be a comedy of errors, it was precisely what we needed.
I realize that every day moments are full of surprises for everyone. No one ever said marriage was easy.
Happily, this week, I celebrated the happiness and health of my husband who grew another year more handsome and wise. I fondly sat beside him and we laughed like we have not laughed in a long time.
It was just what I needed, and I thank the village that helped us manage to sneak away. We remembered to take time to love one another and laugh together, in unison. I am grateful for the patience and the strength of our marriage and all that it helps me accomplish day in and day out.
Join us for a St. Paddy’s Day Happy Hour on Friday, March 17 from 5-9 P.M. at Phily Sports Bar. The night will feature games, contests, and fun. Win some liquor, share a toast, and help us raise money for our cause. $35.00 will get you an open bar from 6-8, food, and festivities.
Tonight, I sit here reflecting on love and the bond I witness every day in my home. It is a love I have been fortunate to feel my entire life and one I observe with a smile. It is the unique love a father has with his baby girl.
The bond of a father and a daughter is unique and unparalleled in many ways. It changes year to year (and sometimes day to day). At first, it is pure strength and a source of complete comfort. At times, it can be a full of discipline. At others, it may simply be a shoulder to cry on. The truth remains, it is whatever it needs to be because a father is always there for his girl.
I fondly recall the moment I first watched Brendan hold Kelsey. It was careful and cautious. It was different than the way he held our son and the way he gazed down upon her sweet face told me everything that I needed to know. We were in trouble. It was new love at first sight.
As the daughter of a strong, dedicated, selfless, and loving man, I grew up knowing that he was always there for me. I live that same type of love with him year to year. My husband serves as that same pillar of strength for our daughter that my dad has always been for me. It is a vastly different love than I can provide, and it grows stronger by the day.
Over the past few days, Kelsey was unable to have her dad beside her during the morning injection. His necessary role is to scream “cheeseburger” at the top of his lungs and provide a hand to squeeze thereafter. It has been a void, and we have all felt it. Absence has made me realize how deep the father-daughter bond is and how it is vital in our lives. A video recording of the scream and the hand of her brother to hold have just not been the same. No one can truly substitute for your father.
And to that point, who have I called on for help, support, and a driver when my husband was away? My father. Who will always answer the phone and “be right there” for me or for my children? My father. It is a vastly different love than my mother provides, and it grows stronger by the day.
Fathers, the world needs your dedication and your daughters need your love.
Thanks for being the men you are exactly when we need you to be: today, tomorrow, and always.
“I’m so worried about something, and I need your advice,” I hear Kelsey say to her big brother before bedtime. I wait at the door to listen for a few minutes. I always love to hear their conversations and the bonds they are forming as siblings every day.
“Sure, you can tell me anything, Kels.” he replies.
“Well, I’m worried about going back to school. I have these giant red marks all over my arms and legs. They just keep itching me. What if all the kids laugh at me and think I’m a monkey? I am so worried they will say I am a monkey.”
Now, of course, I start sobbing and really cannot go in now. I am hoping that big bro has something poignant and reassuring to say to Kelsey.
“Kels, two things. First, I am there at school with you. If anyone says a word or dares to laugh at you, they will answer to me. I will say, stop giggling. How would you like to get a needle every single day? I think that my sister is braver than you can ever hope to be. And if they still laugh, I’ll just go tell a teacher,” he spoke as the sage I can always count on him to be.
So 2017, here we are. I hope you will be kind and generous to Kelsey. I know that her family is here to support her, our search for a researcher continues around the globe, and I pray that no one dares to notice the marks or the itching.
It is one thing to actually give a daily injection that is working wonders, making it a little bit more bearable to deal with the pain. It is quite another to have her think about not only the medication and the anguish of that injection every evening and morning, but also to worry about the perception of other kids.
At least you can always go and tell a teacher. There is certainly comfort knowing that.
Back in 2007, before I had a clue about parenting or life’s true requirements of working and being a parent, Brendan and I talked about having at least three, maybe even four, children.
As 2009 brought us the absolute joy of a baby boy and 2011 delighted us with our baby girl, we had too many blessings to count and ample reasons to be grateful.
We had an incredible second mother watching our babies during the day and we would talk about our family wants and needs while surrounded by them at night. Every couple is different and there is no right or wrong.
Watching friends struggle to conceive or suffer a loss has been difficult to say the very least. I will light my candle at 7 p.m. on October 15th to honor Pregnancy & Infant Loss Awareness Day for that reason. I am blessed not to have experienced that pain myself. However, I must say that the fear of those losses and the many women I have known endure them started a conversation one night soon after Kelsey was born.
Brendan and I decided to table the talk of a third child until after Kelsey’s first birthday. As it turned out, we spent most of December at DuPont Hospital just before her milestone birthday rolled around. The idea of a party was completely out of our minds. I could not have pulled off Kelsey’s first birthday without my mother’s help. She took over the details and even hosted the celebration. Though I was still full of concern and uncertainty, I had a lot to be grateful for that year, too. And so we celebrated thanks to my mom.
Reality set in regarding our family growth and how the uncertainty looming over us made it too difficult to consider bringing another child into the world. We sadly decided to close the door on expanding our family. It was a tough decision to make as a couple who adores children. Difficult as it was, we remained grateful for the two beautiful lives we had created. We are still grateful every day for those gifts.
Five years later, the idea of a dog came from my son. We have worried about him throughout this summer and how he would react to Kelsey’s Kaleidoscope. He is truly incredible and usually full of joy. But we never want to leave him out and often wonder what the past five years have done to him. Hopefully, it has changed him for the better and given him an appreciation of health and love. However, at only seven, it is realistic to think that there is a part of him that may resent all of our efforts purely because he can not understand them. In fact, we have done our best to withhold the truth from him because he is, in fact, just seven.
Whether it was that idea heavy on my mind or a feeling of incompleteness as a family, we came home with a Cockapoo. My little Star Wars fan named him Luke Skywalker. I look at Luke now, sleeping like a baby next to me. He is serene and tranquil under a blanket that both of my children were tucked under as babies. Kelsey actually gave it to him from her “baby doll” collection the night we brought him home.
Many equate puppies to babies, and though a puppy could never fill the void of another child that I sometimes feel, Luke certainly helps. He is a reminder of the struggles, joys, and early wake-up calls that babies tend to bring near.
They say that time heals all wounds. Licks from puppies go a long way in providing healthy distractions at times when we really need them, too. A quick game of fetch after a long day also helps the reality of life fade away for just a few brief moments.
Thanks for the distraction, the licks, and the love Luke. May the obedience be with you.
June 10, 2014 is a day that I have tried to forget every day since. I remember the moment that Kelsey’s doctor walked into the room with eyes that said too much. I knew that this would be the beginning of the journey, and I have gone through the motions of anger, denial, exhaustion, and depression since.
If not for my mom on that night, I think I would have broken. Instead, when I went to pick up my son, I was given a dish of pasta and a goblet of wine. I could barely stomach either nor the words to speak all that I had learned at 5:05 PM. I wondered if it was the terrible nightmare that kept me up at night every evening since I knew it was a possibility. “Polyarter…er… I guess I should learn how to pronounce this,” I thought.
I googled the entirety and read the very little that was written on the disease, especially for a three year old. The New England Journal of Medicine provided the most detailed account of the new findings and patient studies to date. Though little was written, I found that the more I read, the less I could handle. I could barely get out of bed.
As you may be thinking, the days, weeks, and months that passed following the first steroid dose and the booked chemotherapy appointment were a battle. We finally had a diagnosis and a plan, and for that I was grateful. The National Institute of Health saved us the side effects of the chemotherapy infusion by offering us the option to use Enbrel instead as a TNF blocker. The doctors had good reason to believe that it would improve Kelsey more than chemotherapy and virtually eliminate the risk of stroke, “as long as we can stay ahead of the dose,” they cautioned.
Always stay ahead of the dose, we try. Sometimes staying ahead feels like lagging behind, and it was for that reason that my family and I finally decided that our silence was only causing an implosion of worry and pain. To stay ahead, we need more.
Therefore, on June 23, 2016, I truly began to open up about the feelings and struggles I had endured as a mother. If you read this post or have read others, I thank you. I have found a great deal of strength through the keys of this keyboard and the kindness of many who do not realize its effects.
September 11, 2016 is another key day on my journey for Kelsey. A heavy day for our nation that evokes sorrow, hope, and patriotism. The fifteenth anniversary of a difficult memory now holds a new place in my heart, too.
Maybe it was watching the footage of the twin towers with my son that morning that started the nausea. Or perhaps it was the reality that today would be the day my family’s mission became a public reality.
As easy as it is for me to type our tale and share it behind a computer screen is as difficult as it is for me to openly discuss my feelings. September 11, 2016 would force me to do that as Pat’s King of Steaks allowed us to host Cheesesteaks for Kelsey. Words cannot truly express what an incredible day it was for my family.
The support, love, and generosity of family members, friends, and strangers near and far, was truly unbelievable. Some I have never met, some I have not seen in seven or thirty years, and some just a few hours. With each new smile, $1.00 donation for a bracelet or through your purchase of a steak, you showed my family and its mission support. The shades of blue I have felt for two years started to turn a more purple hue. We cheered the Eagles on to victory and then had four beautiful cheerleaders grace us with their spirit and support following the win. It was a mix of green, red, white, blue, purple, and pink.
It was a beautiful day to be in South Philadelphia. We came together for cheesesteaks and we came together for Kelsey. Love truly transcends and love is what carries us through.
If you called, texted, came in person, bought a bracelet, or thought about our efforts on Sunday: THANK YOU. I always tell my kids that they can move mountains, just as Dr. Seuss has told me for many years.
Today, I am starting to believe that maybe I can, too.
…for better, for worse, for richer, for poorer, in sickness and health…
On the day of my nuptials, I did not fully understand the weight of the words.
Though it remains one of the happiest days of my life, marriage is arduous. It is a journey that weathers many storms. It provides sunscreen, shade and solace on the blistering hot moments of life, a soundtrack for the celebrations, an anchor to pull you safely to harbor, and an umbrella to keep the rain away. Each day presents small opportunities to learn and love. Some days are more challenging than others. It takes durability, resilience, and grit at times. I have learned that the grueling times have ultimately made us steady and stable in the end.
It is fascinating to consider how love evolves over time and how much individual growth occurs year after year as your union flourishes. Nine years later, I can say that we are more in love than we were when we said those I dos. Though, at times, the umbrella of marriage has reversed and appeared to turn inside out. Some days or months wear on you and create tiny holes that are essential to patch promptly and correct with care.
When the rain is over and you find yourself dry once more, you are relieved that the storm has passed and the patch sustained repair. Some nights, you need that anchor to guide you home safely, too. You are grateful and humbled by love’s embrace.
The past nine years have been full of celebratory songs, heavy anchors, multiple bottles of sunscreen, and a reliable patchwork umbrella. Our hearts prefer the harmony, but our lives have tested the dependability of our umbrella.
While our love came first, it naturally falls into last place these days. Anyone with young children would likely agree. When planning our wedding, centerpieces and chair covers were our two main struggles. While trivial in life, the compromise and communication you need for a strong marriage are real regardless. We found a floral happy medium and the day was pure bliss sans chair covers. Though our struggles are much heavier now, the ability to get past them wearing a smile requires the same elements that they did over the trivial details years ago.
For four years, I thought that we had marriage mastered. It seemed effortless and comfortable. I was beyond blessed to bring two children into the world and though our house was small, our love was vast. Life was almost too good to be true with the love and health that surrounded my home.
Four years in, we were shaken. I think back often to the sixteen days we spent apart over the Christmas holiday of 2011. We managed to keep normalcy for our son and a pillar of strength present for our daughter. It was difficult not to fall apart altogether or find ourselves holding an umbrella that could no longer be repaired in the New Year.
When marriage forced us to talk about in sickness as the chronic illness of our child, it was more difficult than I could have ever imagined. We waited for answers. We waited for help. We waited in each other’s arms.
Five years of worry, tests, tears, joy, pain, trials, laughter and tribulations have always come back to one fundamental element: open communication. We have had differences in opinion regarding Kelsey since her first fever. Our love for her is infinite, but our ability to internalize all that we have watched her endure has its limitations.
Her recent bug bites left us with glaringly conflicting mindsets, and we could not get out of our own way. For the first time in nine years, we hurt each other so deeply that we did not speak for an entire day. I never understood how couples could get to that point until it happened to me. Isn’t that the case with anything, though? You never fully understand until you live it.
In marriage, you must speak freely and listen carefully. Having a child with a rare disease makes it even more critical to have open communication. If we are not a team, we would crumble entirely. Our support of each other directly enhances or divides our family. The choice is ours and it is not always easy.
Nine years later, I am happy to report that we say, “I do” once more. This year, I am a bit more informed than I was in 2007. Therefore, instead of Happy Anniversary, I would like to say:
I do love your patience and easy-going nature. You keep me grounded and calm.
I do love the way you look at me as though we first met. You steal me away.
I do love the man you were when I met you and the husband and father you have become in all of the days and years since. You are a better man than I dreamed you would be, and I had high expectations.
I do love the way you provide love, strength, and loyalty to our family and the way our children stare up at you with wonder and amazement. You are their hero.
I do love that you accept me for the girl I once was and the woman and the mother that I have become. You know it all and you love me still.
I do love you.
We approach a decade of love together with our flawed but faithful umbrella in hand. On our wedding day, we danced to Dave Matthews’ words “Troubles they may come and go, but good times they’re the goal… Steady as we go…”
I choose you today, tomorrow, and all the days to come, fully understanding the words.
Merriam-Websterdefines wisdom as “the natural ability to understand things that most other people cannot understand.” The idea of wisdom has been on my mind a great deal recently both personally and professionally. Today, it would be at the forefront.
The day began with an ideal and carefree morning. It seemed a perfect blend of sunlight and promise. My four-year-old niece was coming over for the day to play. My grandmother, lucky enough to have four great grandchildren and another on the way, was joining us for some laughter and fun.
Gram, as I call her, and I talked a great deal about life and love while the kids relished in play and imagination. We danced, giggled, and enjoyed time together as a family. I could not help but marvel at the contrast between the wisdom and innocence that spanned four generations.
A few hours into our fun, I noticed three raised bumps on Kelsey’s leg, just above her knee. This was suspicious to me, as her troubles tend to be on those limbs. Kelsey realized that I was gazing for too long.
I hoped that the nodules were simply bug bites. Though, the longer I stared, the more I knew they were not. To throw off the scent of worry, I referred to them as such. I did not want to concern Kelsey nor make my niece alarmed. I did take a picture of her “bug bites” and shared them with Kelsey’s caring doctor. While the children’s senses could be tamed, mine were on high alert.
Those raised nodules derailed the otherwise beautiful day. Those pesky raised red marks have only represented trouble in the past, and I felt wise on a subject I wished I had difficulty comprehending. I held my breath and sat in that waiting place again. I feel like I have been holding my breathe there all summer.
As always, Kelsey’s incredible doctor saw the pictures and promptly responded with concern. She has a few new ideas for Kelsey’s treatment. Too many recent “bumps” have raised doubt in her medications and their effectiveness. Our doctor wants to discuss her ideas with the National Institute of Health and together, they will determine the best course of action.
Life was good today. I still want it to be.
I worried a bit longer and hoped for a quick disappearing act to occur. I had to look at that leg one more time.
As I attempted to privately analyze Kelsey’s legs, I heard tiny footsteps approach the door and walk in. It was my niece. She is very inquisitive and clearly noticed that I had been monitoring Kelsey’s “bug bites” all afternoon. Curiosity got the best of her.
She was wise to ask Kelsey, instead of me, about spots. She inquired so innocently, “Hey Kels, what is wrong with your bug bites?”
Kelsey smiled at her in a way that showed thoughtfulness and poise. She responded, “The best way I can explain it to you is…well, it is just that my bug bites are venomous.”
I had to hand it to Kelsey. Perhaps there was far more wisdom in the room than I first gave credit. Wise beyond her years at five, I secretly shed both a proud and concerned parent tear. Merriam-Webster defines venomous as “producing venom in a specialized gland and capable of inflicting injury.” Venomous, indeed.
