When I met Alecia a couple years back, I would never have guessed in a million years that underneath her positive attitude and shining bright spirit was a woman who had been thrown such a devastating curve ball. No one can explain. No one can answer. It is with a heavy heart to introduce her story, however her strength and hope that grew from tremendous pain is inspiring. She took the most devastating day of her life and turned it into a mission to help so that others will not have to bear the pain she has felt…The Hope Shoppe Thank you Alecia for sharing this raw story with us.
“Last year a part of me started to live and a part of me died. Extreme sadness and extreme happiness and everything in between living in incompatible harmony. Before my mother was murdered, I thought emotions were pretty straight forward. Sadness. Happiness. Anger. Loneliness. Contentment. Maybe they are that way for some people. For me, they melt together like pieces of old crayons trying and often failing, to make something new. Somedays my blue was clear, vibrant, steadfast in its role but when I continued coloring, red would unexpectedly appear out of nowhere. It was and still can be, exhausting.
My mother or Madre as I affectionately called her, was murdered on May 29, 2015. She was helping her friend retrieve belongings from the friend’s estranged husband’s home. He shot them both before killing himself. Over seven months later, even though I have written that sentence many times, it still doesn’t feel real. There is a piece of the denial part of grief that always hangs around, even as I ride the roller coaster of other emotions associated with this process.
I know I was out of my bed when my sister told me what happened because after my screams, I was found in a crumpled ball on the floor. I don’t remember getting out of bed. I don’t remember screaming.
The next few days are a blur of tears, hugs and a limited amount of sleep. Immediately though, I was encased in a bubble of compassion. Strangers, friends, family. They all showed up. Although at the time I couldn’t comprehend the magnitude, I will be forever grateful.
Madre still lived in the small town where I grew up so the local news covered the story on several different outlets. In some news article or google search within the next two weeks, I found the Lethality Assessment Program. Before this tragedy, I had never spoken the words domestic violence, intimate partner violence or anything relating to those topics. Suddenly, I was devouring every word of a program to assist women in abusive relationships that Maryland had pioneered over ten years earlier. To my untrained eye, it seemed easy and straightforward and embarrassing that Maryland’s neighbor to the North had yet to adopt this. I started a petition, not knowing where it or I would go.
Oh the places we went. In the next few months I had an interview with a state senator, talked to various media outlets, was the key note speaker at the Pennsylvania Coalition Against Domestic Violence’s Annual Ceremony, met many extraordinary people doing extraordinary things, started a nonprofit and most importantly, was introduced to a state representative who said “The legislation you want, I want it too.” And she had the power to get us there.
Doesn’t all of this seem grand? It was. It was empowering and healing but my crayons were still melting. There came a point where it seemed I was only using one color, a dull, ugly color, and no matter how much I tried, a new color would not appear. So I gave up coloring and started drinking, in excess. Wine does not care what color you are. I have always and still do, love wine. Before this time, I loved wine because it was delicious and went perfect with cheese. Wine became my significant other, counselor, sleeping pill, family. I was drowning in over a bottle a night. I was in a relationship with an actual human being at this time, not just a bottle. I hesitate to speak poorly of him as it wasn’t always bad but when I needed it to be great the most, it was the worst. I spent many nights alone, either emotionally, physically or both. Just me and my Riesling, waiting for the dawn of a new, miserable day.
The second act of my story actually started 15 years earlier. I officially came out to my parents when I was 18, before I graduated high school. Their response was less than accepting. If someone asked me to describe memories of my parents during this time they would appear as white pieces of papers with “You’re gross” “Is she the one that looks like the boy?” “What you’re doing is wrong” written in bold, black ink.
I spent the next decade of my life essential hating myself. I had no idea this is what I was doing of course. I labeled myself bisexual and mostly dated women while trying not to “be gross” by occasionally attempting to date men.
Flash forward to me drowning in my wine pool. I am invited to the bachelorette party of two of my closest friends. I go because that’s what normal friends do. I am aware I am grieving and therefore not normal but I will try. I plan on staying an hour, two tops.
I am early. As is one other guest. One beautiful other guest, who is speaking to me and asking me if I want to get oysters while we wait. Gross. “Yeah sure” (Wait, who just said that?!)
Oysters (which I now love) lead to text messages that lead to a trip to the beach that lead to getting out of my Pool O’ Riesling and taking a leap of faith into an ocean that I was meant to swim in all along.
My colors still run. These days though, I know a beautiful shade will return if I just keep coloring. While Madre gave me a lot of gifts, she gave her last and most important gift in the months after she left me. She gave me courage to stand up for abused women and to stand up for myself. She gave me the desire to live authentically because you don’t know when you will take your last breath. She gave me a deeper sense of kindness and forgiveness. And for the second time, she gave me life.
Kelsey’s Kaleidoscope a new view for PAN – Hoping to find a cure.
“Mommy, WHY CAN’T YOU MAKE THIS STOP?”
From the age of 22, I have shared a professional life that required me to wear many hats: teacher, nurse, friend, psychologist, behaviorist, doctor, etc. I thought I was ready to become a mom and take on any challenge that came my way along all of the unknowns that parenthood would naturally bring.
Then, when my second child was nine months old, something changed. I was helpless, struck with a challenge that was out of my control. Since I was neither a nurse, doctor, or psychologist, I was in denial. I wanted to wake up one morning and put the past behind me. I wanted my daughter to walk, crawl, and pretend that nothing was happening inside of her tiny little body. I wanted to run, scream, cry, and holler. Instead, I insisted that her ongoing 102 fevers were not simply “teething” and that we needed to do something more.
We spent 16 days of December in 2011 testing, probing, and prodding at DuPont hospital and had no idea why. I felt that I had lost a Christmas holiday and felt immense guilt for my then three year old son, who I abandoned to stay with my still nursing daughter for over two weeks. I was also left with the memory of a Christmas Eve blood transfusion that was necessary due to all of the blood collected. Kelsey would not sit still and the IV took over an hour to place. It was like a bad dream that just kept going, and I relive that pain every Christmas Eve. I sat up with her to hold the arm in place so that the IV would finally work and the transfusion could occur. I wondered if Santa would find me as I sat awake until the wee hours of the morning helping the transfusion along.
While not Santa, our Christmas miracle seemed to arrive on December 31. We were discharged and that was progress. Yet, we walked out feeling the weight of a new journey we were on with absolutely no answers, a great deal of questions, and a great deal of pain.
Until June 10, 2014, we stayed on that path. I was a warrior, and I demanded answers. Kelsey was accepted into a clinic through the National Institute of Health and a new panel of world renowned doctors began to review Kelsey’s data, biopsies, and everything else in between. We continued to poke, prod, and test as those amazing doctors tried their best to make sense of what was happening inside my daughter’s tiny little body. She was beautiful, smart, and sad. I kept on searching even though I wanted it to all go away because I knew in my heart that something was wrong. Why? I would like awake (and still often do) asking myself why.
Then came June 10. After a six hour sedation and more testing, evidence of past stroke was found, the recurrent fever pattern was charted, and combined with her other muscle, tissue, and lymph node biopsies, Kelsey was given a rare diagnosis that sent me into almost an hour of tears. The doctors finally figured it out: polyarteritis nodosa (PAN) would be a lifelong battle for my daughter, my three year old daughter. Wow.
At first, they were going to treat her with a form of chemotherapy and maintenance drugs. After a few days of debate, the NIH decided that Enbrel injections would keep Kelsey healthy and happy. It was a small victory, left with the fact that home injections are administered by me every Wednesday night. If you’re ever near my house on those evenings, you’ll hear horrific screams and wails. You’ll hear my daughter yelling at the top of her lungs, “MOMMY, WHY?” and “WHY CAN’T YOU MAKE THIS STOP?” and even the occasional “I HATE THIS” or “OW OW OWWWWWWWIE OW”
I try to stay strong and assure that everything will be ok. But it’s really difficult to do through those screams of pain. Her medication is saving her life and protecting her body from attacking itself. Every week, I shudder, cry, and often times want to pretend that it won’t happen. But then, I take the medication out of the fridge, get my materials ready, and prepare myself for her anticipation and my own. The needle she thinks about every morning and worries about every night is saving her life. I both love it and loathe it for that reason.
Kelsey is closely monitored and her blood is checked frequently. However, I worry every single day that when she wakes up, she will not be able to walk, or she will cry with so much pain and I will not know what to do. This happened on Easter morning, 2015, and every day since, I feel like I can not breathe until she is awake, ready for the day, and smiling her beautiful smile. I monitor every mark, scratch, and scrape carefully and hope that we can stay ahead of the flares and anticipate her body before it can strike silently through the night.
The trouble for Kelsey is that she is wise beyond her years, looks like a vision of health and wellness with her blonde ringlets, and displays a joy for life and everyday things unlike any child I have ever seen. It is remarked on by her classmate’s parents and when we are out in public. In my mind I think, “If you only knew…” So I want them to know and have decided to begin a foundation in honor of Kelsey, Hopefully, we find a cure for her and help other families and children who are living in pain and unable to explain why. We know that we are lucky to have caught this silent pain as soon as we did without unrecoverable and fatal results and want to assure that other children are as fortunate.
Here is our website: http://newviewforpan.org
Help to find a cure for PAN : Donate
Introducing Katie with Basic Invite and her beautiful words on marriage and how to create memorable pieces of stationery for some of the most important events in a person’s life!
“Life’s Moments One Beautiful Piece of Stationery at a Time
Marriage, such an exciting time in a couples life. Surrounded by family and friends celebrating love and a new found life together – it’s magical and a time to be treasured. With marriage, comes a bundle of unfamiliar experiences and many new opportunities. Opportunity to travel with the one you love, to build a home and life together, to start a growing family. Marriage may be the binding of just two people, but all of those connected are a special part of it too and not only part of the nuptials, but all of life’s moments to come. What better way to share life’s many milestones than with a simple card, an invitation to a celebration, or an extra special announcement? To do just that using customized stationery of course!
Enter, Basic Invite, an online stationery company working hard to create the perfect card for each of life’s major moments. They offer custom designed wedding invitations, thank you cards, birth announcements, and much more! Basic Invite is the epitome of inspiration beyond the wedding and that is why we want to share their services with all of you brides, sisters, mothers, daughters, and dreamers.
First comes love, right? The ultimate opportunity to create save-the-dates online with Basic Invite. Use one of your favorite engagement photos or keep it simple with a classic calligraphy save-the-date magnet. Then comes marriage… Basic Invite is the perfect one-stop shop for all of your wedding stationery needs. With over 200 wedding invitation sets and 180 plus color options – every couple is sure to find the ideal wedding invitation to match their style! Thank your guests and make your marriage official with matching thank you cards and personalized wedding announcements.
Later down the line, however near or far – Basic Invite will be there to supply you with all of the stationery for births, babies, and beyond that you will ever need! It’s a blessing to have these incredible life moments transpire and it’s extra special if you’re lucky enough to celebrate with a custom baby shower invitation or a luxury birth announcement that you can hold onto forever.
Basic Invite makes stationery fresh and fun with hundreds of designs, colors, and fonts all with the ability to be instantly previewed! Order a custom sample to be sure it’s true love (it will be) and only then order in bulk! They are full service and here to help.
So next time one of life’s greater moments comes knocking at your door try heading over to Basic Invite and let them take care of you!”
Thank you Katie for sharing these beautiful pieces, we look forward to using your elegant invitations for our next event!
Sarah’ s story is about her journey through several miscarriages and her most recent pregnancy. Sarah originally shared her story on Facebook around Thanksgiving and it highlights a VERY real and silent struggle that many, many women face. One in four women will experience a miscarriage and one in four to six couples face infertility. This is why getting pregnant, staying pregnant, and delivering a healthy baby is truly a miracle.
This time of year, I like seeing everyone’s posts about what they’re thankful for–a nice break from political rants, daily complaints, and all of the craziness going on in the world. I’m feeling particularly thankful this year. Yesterday marked the 18th week of my pregnancy, and I couldn’t feel more blessed. I’m grateful for each passing week, knowing that I’m that much closer to meeting our baby. I still have a long way to go, but so far so good. And I’m not going to worry, until I have something to worry about. Pregnancy has been a rough road for me over the past 2 years. Some of you may not know, but I’ve had 2 miscarriages before this pregnancy, something I wouldn’t wish on anyone. It’s probably one of the most devastating things a woman can go through. The first time I found out I was pregnant, I was shockingly excited. Larry and I had only been together for a few months, but we had already talked about marriage and kids, so even though it was sooner than expected, we were really happy and excited. Having kids was not something I had ever really thought that much about, before I was with him. But once I found out I was pregnant, it was life changing. It was something I never knew I wanted. But now it was all I wanted. Everything seemed fine, and we went to my first OB appt at 8 1/2 weeks. That’s when we were told that there was no heartbeat, and I would have to get a D&C (dialation and curettage procedure). I felt like someone punched me in the stomach and knocked the wind out of me. So devastating. All the hopes and expectations we had, went right out the door at that very moment. So the following week, I had my D&C, at which time they discovered I have a rare condition with my uterus. I have a bicornuate uterus, which means it’s heart-shaped… making me high risk for miscarriages, preterm labor, etc etc…basically because I can only carry in one side, which can be problematic. Or it can be totally fine, it’s really a toss up. So in a nutshell, my body is “not ideal for carrying babies”, my one doctor told me. Oh, awesome, that’s comforting.
So, a year later, another miscarriage and D&C. Fun times. Weirdly enough, they don’t really do any kind of testing or anything, until you’ve had 3 consecutive miscarriages. It’s not considered “abnormal” until that point. Super frustrating.
So, less than a year after that, a few weeks before our wedding, I was late on my period and took a pregnancy test. Holy shit I was pregnant again! At first I was excited, but then considering my track record, the frustration of what most likely was ahead, set in. I just wanted to get through my wedding and honeymoon. A few days later, I got my period (so I thought). I figured maybe I had a chemical pregnancy, or a super early miscarriage, something like that. Whatever the case, I made a doctor’s appt for the week after our honeymoon. I’ll figure it out then.
So because I had been through this twice already, and I for sure wasn’t expecting any happy news, I was fine going to my appt by myself that day. I even marked down on the exam sheet, that my reason for my appt was a “3rd miscarriage”. The ultrasound tech started my exam, but the look on her face seemed different than the past 2 times. She told me she’s not sure why I had been bleeding, but there’s a baby with a heartbeat in there! She turned the screen around so I could see, and holy shit, I’ve never seen anything more beautiful and amazing in my entire life. At that moment, I knew without a doubt, God exists (something I’ve questioned), and was there in that room with me. That was the only way that this was possible. It truly felt like a miracle. I was 10 weeks pregnant, further along than I’ve ever been, and everything looked normal.
If you’ve read this far, I thank you for listening to my story. It’s a story that I’ve come to realize, a lot of women share, unfortunately. Although it’s an extremely sensitive topic, I think it’s important to talk about and share with each other. As I started opening up to some people about my journey, I was surprised to learn of how many people also struggled with miscarriage and/or fertility issues. Some of them were in the midst of their struggles, some had overcome them. Their stories comforted me and gave me hope. I hope my story can do the same for someone. Never give up hope, where there is a will, there is a way. I feel extremely blessed, and thankful for the family, friends, and doctors who have helped me through everything. (Especially my husband, you give me strength I never knew I had. You’re amazing.)
After I posted my original post above, a very sweet client of mine messaged me, and something she said reminded me that on the last day of our honeymoon in Hawaii, we saw a rainbow as we were leaving the hotel. Call it a coincidence, but it brought me luck a few days later!
An update from Sarah:
Our beautiful son, Camden, was born on May 7, 2016 at 2:40am. The birth went pretty smoothly, and he’s just been the best baby ever since. He really is a sweet little angel, and brings such a joy to our family. I fell in love with him the second I saw him, love I never knew existed. Any heartache or pain I had ever experienced in the past, had been replaced with the purest love I’ve ever felt in my life. He is a gift from God, and he was worth going through everything I’d gone through.
At 11 weeks old, he already has the funniest personality. He loves to laugh and smile, watch reality tv shows with Mommy, go on walks outside with his Nonna, watch boxing with Daddy, listen to his Pop sing songs to him, take Snapchat videos and selfies, and is already on the verge of talking and walking!