If you have been around Greg in the last 6 months or so, you’ll know that he hasn’t felt good at all. He was having stomach pain that wouldn’t go away. Sometimes it would be okay, but it got progressively worse until he couldn’t even leave the house because the pain was so bad. Test after test never showed any particular thing that could be causing it. We’ve been to his primary doctor, a gastro doctor a few times, one ER trip in Topeka. His blood work never showed anything alarming. Finally, January 17, we ended up in the ER in Lawrence because he could barely walk from the pain. They found a mass in his small intestine the size of a cutie orange. He had it removed 5 days later, and after testing came back, it was diffuse large b-cell lymphoma. Cancer. That is the scariest word. Further tests showed that it has not spread (Thank God!), but today we start the first of his chemo treatments to make sure every cell of it is dead and gone.
While chemo is scary, and we have no idea how it will affect him, I feel like we are actually on the uphill part of this journey. We know what the pain was caused from. We know it was cancer. We know it didn’t spread. And in a few short months, we will know that it is gone.
It’s going to be hard, but we’ll do it anyway. We have such confidence in both our surgeon and our oncologist, and we are ready to get this over with and keep going on with our lives. We have a body shop to get off the ground. We have a Disney trip to make next year. We have a little girl to teach to race. We have a 6th birthday party to plan. We have plans and opportunities and a future to look forward to. We have so many things to do, friends to make, people to love, and this is just a hiccup.
If anything, this has taught us that you need to slow down. Do things that make you happy. Stop living according to everyone else’s values and expectations. Do what is best for you. All those quotes that you read online are true when you’re looking down a road that feels full of uncertainty and thick with fear. So read them and take them to heart.
This past weekend, the weather was typical of a winter day in Kansas. Rainy and cloudy and just really boring. We decorated Valentine’s cookies with my nieces, and in that short time, sitting at the kitchen table with cookies and frosting and 6 different types of red and pink sprinkles passing around, I felt really whole in my role as a mom. It really takes very simple things to make a kid happy and make them understand that you care about them.
There are a lot of things I can’t do as a mom with a physical disability. I can’t run or jump or show her how to swing with my own legs, but there are a lot of things I can do. Like make her laugh and make her smile and make her feel loved and comforted and heard. So many times I feel like people (who obviously don’t know me) question my ability to mother her by what I am not able to do, and that’s not fair. Being a mom is making sure you raise someone who is going to be a productive and loving part of society. How you get from birth to that point can look so different for different families. My disability is just one small part of our path there.
And you know what, I don’t have to prove to anyone that my kid is happy and well taken care of. She will do that all on her own. She is upbeat and giggley and smart. Love exudes from her tiny body because that’s what we teach her.
The next time that someone judges someone else’s mothering, just shut it down. If their babies are happy and healthy, let them do things how they know how to do it. Everyone’s family doesn’t have to look like yours to be happy.
I used to think that there was such a thing as work life balance, but as Reagan gets older & my photography business grows and my day job is a little less demanding (yay for fewer complaints), I feel like there is always one part of my life that pulls harder than the others.
One area is always heavier.
For me, right now at this moment, it is family. The beginning of the year seems to be the most time spent with my family because the audit at work is over, Greg is home for the winter, and it’s too cold to shoot any sessions. There are very few obligations that I have right now.
Greg, Reagan and I just took our first family week-long vacation last week to Florida, and I cannot even tell you how good it was for my heart. The sleeping in, the loosely scheduled days, the time spent laughing and goofing off and watching Reagan be enthralled with everything. It was just what I needed in a time that I was feeling unsure and a lot of anxiety about nothing. That anxiety tends to hit me every once in a while, and this vacation really did make it disappear. Maybe I figured out that little piece of self care that I need when things seem big and overwhelming. Maybe taking the advice of so many people to just s l o w d o w n and do nothing is paying off.
I am not good at it, but maybe it will be like a muscle. The more I flex my self care muscle, the stronger it will become. So here’s to more sleeping in, baking cookies, reading books, and relaxing outside with a schedule to dictate my every move of the day.
I’ve been an auntie for a long time. Since I was 5 years old. My siblings and I, the five of us, are spread out, so it isn’t too surprising that my first nieces and nephews were closer in age to me than my oldest brother.
I love being an aunt. It is one of the greatest jobs I’ll ever have. Ever. I was thinking last weekend as we were hanging out with Greg’s nephews and niece about just what I love most about being an aunt. There are so many things. I could really go on and on about how rewarding it is, but I picked a few of my favorite things.
- They listen sometimes better to me than to their parents. Key word: sometimes. I occasionally have to put on my “mom voice” and get stern, but for the most part, it’s easy.
- I can buy the little kids all the candy I want (and I am not the bad guy when their parents say “no more before dinner”).
- Babysitting is more like a play date. I get to plan something fun and something to keep them interested. I’ve found that the pet store can be both a blessing and curse for this. It’s cheap, and they love seeing the puppies. They also cry when we can’t take one home with us. Sad tears. Big, fat sad please-let-me tears. And don’t think the thought of actually bringing one home hasn’t crossed my mind. Those little lady tears are powerful.
- I can buy them loud annoying toys for their birthdays. I will most likely regret this when my own kids have birthdays one day, but for now, it’s fun. I tend to buy a lot of shoes for the little kids too. The older ones get money.
- They admire me. I love knowing that they look up to me as an example. And it is something that I take very seriously.
- I get to be their friend. My oldest niece is 23, and she knows she can call me just to chat or hang out or whatever. When I was in high school, I would go pick her up all the time, and she was my favorite shopping buddy. I love having a strong relationship with each of them.
I imagine more nephews and nieces in the future, mostly great nephews and great nieces, but it will be in the distant future. Maybe one of my own first.
Oh the 4th, she wanted to do a photo shoot. Her idea, not mine. Somehow I think she was coaxing her way away from the fireworks because she has no interest in blowing things up and loud bangs. Her mom and sisters were doing enough of that anyway.
And somehow they turned out to be some of my favorite pictures of her, ever. I love those accidental facial expressions and full-of-love eye shots that she can give you through lens. Her little innocence is just sitting there, waiting to be lapped up with light. I love that too.
I hope that she never loses that part of her, that innocent love for life. That as she grows older, she doesn’t have to endure the weird or cruel things other kids can say. I know that someday she will have to stand up for herself, be stronger than everyone else, and brush off negativity, but still, I wish I could protect her little heart from that kind of worry.
Disability brings scars, in both physical ways and emotional ways. In the 10 years that I have been paralyzed, I have felt myself become stronger, more resilient in many ways, but still, there are parts of me that are gaping wide open with things that I wish I could change, things that still cut me deep. I think it will be the same for Serenity. Her hands may bring attention, and she will either ignore it or she is going to fight it with all the attitude she can muster.
She is still one of the most beautiful people I know, no matter what.
It’s a fierce thing that
hits me hard every few hours,
a hard knot between my sternum and soul
that refuses to unravel,
a despair so sharp I am sure
it could break me.
The days between the day you died
feel like centuries.
There is so much to tell you.
I brave this summer with chipped nails
and a silent half-empty heart,
where your memory, our memories,
sit to stew and fuel me until tomorrow,
where I will have to wake up,
and start over again.
I love you and miss you so much.
They keep telling me that time will take care of the pain, and my heart will be less heavy with every day that passes. It’s only been 10 days. They are wrong. Everyday I miss you more than the day before, and need to talk to you. Everyday I have angry moments because it doesn’t feel fair. And still, everyday I am a little bit grateful that you no longer have to live in misery or pain, suffering to breathe. I feel both selfish and selfless, my heart goes back and forth, because I want you back, but it was best for you to go. You held on too long, in fact, for us. Up until that last moment, I suspect you held on for us.
Please keep sending me light. I am trying, but now is when I need it.