My cousin Stephanie is battling ALS and we need your help.
I have unfortunate news and I am going to ask for your help. I am writing this because if I record a video of me talking about this you wouldn’t understand through the tears. Last year when my family was searching for a Kidney for my Dad, we rallied together as a family to work hard on finding a match. Aunt Linda gathered intel, organized all of the facts and kept us all focused on the end result. Joan helped manage the FB page and launched the GoFundMe. I produced a video, interviewed the family and came up with the plan on how to make it work on social media. John Pat & Stephanie were in charge of design. They made the website and flyers. We created a team and with the support of friends and family and my client Ed, we made a miracle happen.
This post is not about how we found a kidney or anything to do with my dad. This post is about Stephanie. Stephanie is my cousin. Technically she’s married to my cousin (John Pat), but I don’t really remember a time when she wasn’t around, so she’s my cousin. Last summer they welcomed the most perfect little girl, Maggie James. At Christmas (2018) we were all together as family, celebrating 3 months since my Dad’s kidney transplant and the first time we all got to be together since. Maggie was about 6 months old and we were all very excited to play pass the baby and love on her.
Stephanie told us that something was wrong with her speech and doctors didn’t know what was wrong. We started noticing that Stephanie didn’t sound like herself. She was having trouble speaking and couldn’t make the right sounds with her voice. She was seeing specialists and consulting with different doctors. In January I took photos of JP, Stephanie and Maggie and I got a little update on what might be wrong. Someone mentioned that her speech might be messed up from breast feeding so the doctors suggested that she stop. They put her on some medication and we all hoped for the best. She knew something was wrong but couldn’t convince the doctors quite yet and it took a while to figure it out.
A few weeks ago we found out that Stephanie has Bulbar Onset ALS.
You know, that disease that has no cure. The one that everyone was dumping ice buckets over their head for. The one that is fucked up no matter how you look at it. Yeh, that one. I know that there are a lot of people living life to their fullest and fighting every day to enjoy every moment. Stephanie is one of those people. She is a kind and incredible human being. She is a new MOM. She is a wife who has been married for just a few years to the love of her life and together they have a beautiful 10 month old baby girl. She is a sister. She is a daughter and granddaughter. She is gorgeous and she has the best sense of humor (meaning she always laughs at JP, Jessie and I) . She is beautiful inside and out.
I have to be honest here, this fucking sucks and I’m not sorry for cussing. My heart breaks for her, for JP, for Maggie. My heart is hurting deeply. There’s nothing I or anyone can do to fix this. At least with my Dad I could take action and truly know that I fought for the results. Now, we sit and wait. We watch as her body betrays her. No one should have to fight this incredibly cruel disease. It’s 2019, how do we not have more options??? No one should ever have to watch their wife lose the ability to talk and walk and breathe. No one should grow up without a mom. If it sounds like I am angry, it’s because I am. I am currently a lot of things. When this happened, we we found out and at this very moment, I am filled with all of the emotions. Anger, sadness, and frustration are at the top of the list. Sympathy, love, and gratitude are hanging around too. As I sit here on a plane headed to be with my love, tears roll down my face and then man next to me has no idea what is going on, unless he’s reading this as I type.
How can we all be feeling all of the things at the same time? I feel awful that Stephanie, truly one of the sweetest humans I’ve ever known, has to go through this. My stomach aches for her. I can’t imagine how she must feel and how scary this must be. I know she will fight with all of her strength. She will fight for herself, for her family and the most for John Pat and Maggie. With all of these terrible feelings, I feel very grateful that we are able to have good feelings together too during this time.
Saturday, for Mother’s Day, I got a glimpse of all of these feelings at the same time. It was all around me, in full force. Stephanie’s family gathered together to celebrate Mother’s Day with her. This was her first Mother’s Day. To celebrate, we went to the St Louis Art Museum. The S.L.A.M is one of Stephanie’s favorite places. John Pat proposed there and it holds a very special place in her heart. When we arrived at the art museum, I let the ladies at the front desk know what we were wanting to do and I made sure that we were able to do it. When I asked if it was ok for us to take a few big group shots with the full family, I explained why we were there. My back was to the family and tears were streaming down my face. The ladies quickly handed me tissues and told me “We are so glad that she chose to spend her time here. Art is healing and therapeutic for people. It makes us feel and it connects us. It’s good that you all are here”
Jessie came with me on this shoot and I couldn’t have done it without her. The first photo was a group shot and behind the camera I was already sobbing. Jessie looked at me and said, “ you got this, remember we can cry in the car and when we get home.” So I wiped my face and told everyone what the next step was. I thought taking photos of a father walking his daughter down the aisle less than 24 hours after my dad had his transplant was hard. This made that feel like a piece of cake. We were there to have a good day together as family, the crying came in waves for me but I wasn’t the only one. As I started doing what i was there to do, I watched as each person took their turn wiping away tears and replacing them with laughter. This was the story I wanted us to remember. We walked around the museum, heading to the Impressionist area that Stephanie loves. We got in trouble for standing over the lines and Uncle Alex took his motorized wheelchair as fast as it could go around the grand hall. (seriously I thought he was going to flip it. he’s a quadriplegic so I say, let him race the damn chair if he wants to!)
We took the day at Stephanie’s pace. She was so excited to be around everyone and she barely was seen without holding Maggie. Even though I knew that by carrying her chunky baby around she was worn out easier, she kept pushing on. It wasn’t until she needed a break to sit down that we saw what was really happening to her. It was hard for her to breathe already. We had only been walking slowly around the museum for 20 minutes. She got back up and we did a few more photos with each family member and she needed to take breaks because the muscles in her face weren’t letting her smile how she wanted to. Her dad was right there by her side, watching his baby girl put on a brave face. He hugged her and held her close when the feelings came rushing in for her or she started feeling run down.
The next time she sat down she needed a drink of water and the only water we had was Maggie’s sippy cup. That’s when she told me she can’t drink out of a straw or anything that takes suction, her body doesn’t do that anymore and this is just the beginning of what will continue to happen with the rest of her body. After she felt hydrated she was ready to push on and take more photos, this time with just John Pat & Maggie. Jessie looked at me and assured me once again, that we could cry as soon as we were done. My throat was hurting from swallowing down tears and trying to get rid of the need to cry. We headed to the contemporary wing of the museum. I knew that my job wasn’t to make anything better, it wasn’t to change any outcome or find a solution. My job was to tell their story the best way I know how, with photos.
Since I can remember, JP and Stephanie have been together. JP has always been weird and silly and one of the most hilariously fun people ever. As a dad he’s grown into that kind of dad that everyone wants to be around. He’s taken on the role and has fun doing it. He makes all the silly sounds and he LOVES his little girl. He loves his wife and Stephanie has always loved him. He makes her laugh and fills her with love and reassurance. I found out that in 6th grade she wrote in her diary that she was going to marry John Pat. She knew what she wanted and she got him. Their love is beautiful and I feel honored to have documented it for them.
Maggie James is the most perfect chunky baby. When she smiles your body gets all gooey because it’s like she melts your heart. Her chubby cheeks can make anyone have cute aggression. Stephanie is head over heels for Maggie James and I wanted to make sure that was what was remembered about this day. The day was filled with so much love and I want everyone to remember that when they see the photos. It was a really hard day. We all know that the days will be harder as they go on. But we had a really good day.
These photos aren’t technically perfect. They aren’t meant for anyone but our family. They aren’t fancy or meant for anything other than a reminder that we have to remember these moments. I don’t know if I could take these photos for anyone else just yet. Part of me wants to but right now I have to focus on my family and telling Stephanie’s story.
If you ever have wondered if you should take the photo with a family member, the answer is yes. Some of the photos I’m sharing break my heart and others bring me so much joy. These photos are for Maggie and John Pat. They are for Stephanie and her family. They show joy and laughter and heartache and pain. This is our family and we are hurting right now, but like always we want to make the best out of each day and love it to its fullest.
If you have gotten this far, thank you. Thank you for reading my feelings. Thank you for listening to me try to piece together words about what is happening to someone I care about.
Now is the time I ask for your help. No one should have to go through this and stress about what they are leaving behind for their family. Stephanie is regular 31 year old woman. Until a few weeks ago she was able to work but now that is no longer an option. She can’t be left alone and as her body experiences more symptoms she will soon be unable to take care of herself at all. I know that no one would want to put this sort of responsibility on their family. To take care of the baby, the dogs, the house and her.
I wish there was something concrete that I could ask you to do any make all of this go away, but there’s not. We have to do things differently this time. I’m asking you to donate $10, $20, $100, whatever you can afford. I’m asking for you to share this post on your pages. I’m asking for you to leave comments below and share something good. I’m asking you to cheer Stephanie on as she battles this relentless, malicious disease. Click here to donate
Stephanie should not have to stress, even for a second, about money or how John Pat will get by, or how Maggie will go to school. I know that no amount of money can make any of this go away but I am asking you to donate anyway. If you need to know exactly where the money will go, here are just a few things it will fund. Medical expenses, childcare, in home care, living expenses and bills during time away from work, counseling, college and education for Maggie, and probably a few beers. Because I think we can all agree Stephanie and JP deserve one right about now.
If you can skip your Starbucks or have a few extra dollars to help out my cousin, here is the link to the Go Fund Me page set up for her.
The last thing I will ask you to do is some research. Remember the ice bucket challenge? Well, it was a fundraising phenomenon to raise money for ALS research. This disease is terrible, nasty and incurable. There are trials out there but it’s not enough. People all around us are dying in torturous ways and we need to help fund the research to find a treatment that cures this disease. Here are some facts to get you started.
• 90 percent of people diagnosed with ALS have NO FAMILY HISTORY.
• ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries and can affect anyone.
• Although the life expectancy of a person with ALS averages about two to five years from the time of diagnosis, this disease is variable.
Find out more information at Alsa.org
As I finish up this post I want to ask you again to help us raise money for Stephanie. She deserves the peace of mind that her family is taken care of so that she can focus on making each day the best ever. Thank you for reading all the way to here. I have two more photos to share and here again is the link to DONATE
The day had exhausted her. But it was a good day. This photo was one of the last I took that day. Her dad held her and kept her safe. He gave her as much love as he could. His baby is fighting for her life and in this moment she felt defeated. It was a day full of laughter and love. It was also filled with tears and gratitude. It was a day I will never forget.