Raising children with a chronic illness is one of the hardest things I’ve ever walked through. Their health is never great but we go through long stretches where it isn’t awful. I think it’s hard for others to look at them and remember just how sick they are. As I say that, my next thought is that I don’t want people looking at them like that anyways. My girls have special mutations. Because just having PKD isn’t enough, for some reason they both have aggressive mutations. While most people with PKD shouldn’t be symptomatic until they are in their 30’s or 40’s, mine have been symptomatic since the ages of 4 and 7. My girls are warriors, I don’t want them pitied and treated differently. I don’t post about Doctors appointments or test results because those details really aren’t for everyone to see and hear. I am open about their diseases and advocate strongly for funding and research. We’re raising little advocates, that part is beautiful to watch.
From the outside my girls look healthy and strong. They are smart and immensely talented. We don’t talk about their illnesses everyday because that would be incredibly depressing. They are warriors inside and out. My Littles are just as strong. They have become advocates for PKD and EM, they probably know more than most Doctors do. Other parents, friends and family members look at them and tell me how great they look. When they ask how things are going, I tell them right now, we’re doing okay. I’m content with that.
Like every mother out there, I can read my kids like a page turning thriller. I am constantly watching how much they drink, what their mood is like, if they’re walking a certain way or favoring one side over the other. I count in my head how many trips to the bathroom they take. It just never ends, my head is always spinning. Then my worry flips to the littles. Did they get enough love today, make sure you read an extra story etc. Because of the Big’s illnesses, the littles have to adapt to whatever is thrown our way. Since they were babies, they’ve been carted to every doctors apt. We show up at appointments and tests with a bag of games and goodies. They are strong and confident when it comes to their big sisters. They are outspoken and mature beyond their years. This is our normal.
A month ago, my daughter was injured while playing a soccer game. Turns out she’d been playing through the pain for quite some time. Her cysts had started bleeding and calcifying. This is something that is usually seen in 60+ years old patients in end stage renal disease. The pain that comes with PKD is brutal. During times like now, when my daughters health is front and center, when scans and blood work and pain levels are like nothing I’ve ever seen and nothing that the Drs have ever seen (in someone this age). It’s really hard to be strong. It’s hard to not let your mind spiral. My daughters quality of life is all that matters to me. I know we will have transplants coming our way one day. I know we will have more set backs and new challenges to overcome as this disease progresses. Until then, all I want is for them to have a happy, pain free life.
My daughter is really struggling, her pain continues to worsen. It’s hard to want to be around people and pretend that I’m happy and that we’re okay. Like all parents in my shoes, we train ourselves to keep the brave face. At appointments, at home etc. We are strong. It doesn’t matter what we hear, we never break in front out kids. Right now though, I’m drowning… there’s no other way to say it. I am strong for my girls. In front of them, I am constantly reassuring that everything is going to be okay. I hold them and comfort them and make them believe that we’ve got this. That no matter what is thrown our way ‘mommy will find a plan’. When my other three are constantly asking if their sister is going to be okay, I look them right in the eye and tell them I’ll make sure she’s okay. I tell them daily what bad asses they are. I tell them that we’ve got this. I remind them that we’ve been through worse and always come out on the other side. They believe me, they trust in me that some how I will navigate this rough patch and we will find a new normal. Everything will be okay again. At night when I’m alone, I’m constantly praying that what I’m saying will happen.
These girls constantly blow my mind with the empathy and love they have for each other. I had to cancel last minute on working the book fair at school. The littles had talked all week about me coming and having lunch with them. The little’s missed two soccer practices because I couldn’t leave their sister. It’s not always like this. Even so, it doesn’t dull the sting that right now, I’m not enough for all of them. They love me through it. They forgive me for snapping at them. When I’m not being fully engaged when they are telling me about their day. They understand why dinner isn’t made at the right time. I’m constantly on the phone with Doctors and my heart sinks every time they run in the room, just to see me hold up my finger to stop talking. When I’m not paying attention, they ask me why my face looks sad and I tell them it isn’t, that I was just thinking about sardines and they laugh. These girls are such a testament in my darkest moments that my husband and I are doing something right.
When my husband walks in the door and we lock eyes I want to break. He sees me and he gets me, but he’s also dealing with this in his own way. He wakes up every morning and somehow goes out and provides for us. We know each other’s tells. He doesn’t openly speak about his worries. I see him too though. I see him not sleeping, I see him laying with our girls and cracking endless jokes to make them smile. I see him taking them on to trips to the store to help him work on some project. I see him show up. He has this ability to always finding the best in everything. I see him trying his best to be strong.
I’ve shared with family and close friends, the details of what we’re walking through right now. I’ve given my worries and tears to my husband. There have been days when I thought I was fine, until I heard one of my family members voices. I’ve spent hours at night talking to my dad, don’t worry he’s not talking back yet. I always know what he would tell me though. I’ve spent countless hours talking to the big man upstairs. Sometimes I pray with love and other nights I’m so angry. I’m watching this beautiful girl inside and out dwindle away because of her pain. I’m watching the spark that makes her one of the most unique human beings I know fade. I’m unable to stop it right now.
We’ve had so many people stopping in to see my daughter and show us their support. We are really lucky in so many ways.
But when everyone leaves and the girls are asleep, my husband asleep on the couch, my mind starts wandering. All of the uncertainty creeps in. The truths of our situation, the guilt that I’m making promises that I’m not sure I can keep. The anger that I have towards these diseases is unlike anything I’ve ever experienced. The hard time I have trusting my faith, because how could an all loving God allow my baby to be in so much pain. I find myself getting angry when my mom tells me that it will all be okay. When someone says, she seems to be doing better today, I want to scream. I want to say ‘ya this moment is good but this morning when she cried for two hours, she wasn’t okay’. Sometimes I just want someone to tell me that they get it and that this freaking blows.
There’s a pattern that goes with receiving bad news about the girls. In the beginning I’m surrounded. Family and friends, everyone wants to know what we need. Then slowly as the days pass, everyone starts to disappear. The visits slow down, the daily calls stop and the texts grow fewer. Their lives are still going, their busy and working and have their own problems. They stop telling me about their bad days or they do tell me and say but that’s nothing compared to what you’re going through. I hate it more than any of them know. I want their problems, I want to still feel like I’m helping them. It’s comparable to after someone dies. Right after the death you have more food and support than you could ever dream of and then everyone’s gone. That’s when it hits you, when it’s quiet.
I sit and wonder at night what my dad would tell me to do. I think about how my grandpa would be at every appointment with me, refusing to leave until we had answers. My dad would be here everyday before work, even if it was for 15 minutes to check in. My dad was my person, when I’m at my worst I find myself wanting him so badly it physically hurts. He actually listened. He always supported me no matter what. He had every encouraging word I needed to believe I’m doing everything I can. The reality has set in that my husband and I are the adults now. That we don’t have the wise men in our lives anymore to go to for advice. That we are expected to know what the right choices are. That in itself is terrifying.
I pray like I’ve never prayed. I pray, for hope, a plan, a treatment, anything to restore my girls quality of life. I hold her while she cries and says she’s not strong enough to do this anymore. I pray for her, I pray for me. I pray for my husband. I pray for my girls. I pray for strength. I pray for wisdom for the doctors. Then I sit and think again about my dad. How I know that if he could show up he would. He would help me fix this mess in my head. He would listen for hours. He’d return every phone call. He’d probably show up with whiskey. He’d know, without my saying a word, that I’m drowning. He always answered the phone. Not many people do that anymore… My head was going down a dark path and I could feel the funk that I would be in the next day coming on. I could see my dads face, I could feel him holding my hand. He was reminding me that he was here.
It wasn’t long after that, my daughter woke up and was crying in pain. We were getting ready to take her back to the hospital. I didn’t want to take her. We already know why she’s in pain. The Drs are working to come up with a plan. We’re getting close. I didn’t want to put her through the pain of the drive and more tests, to tell us the same thing. I was so worried that they would only give her morphine and that once it wore off she wouldn’t be able to handle the pain that she can tolerate now. My little girl was broken. Mentally and physically, in that moment she couldn’t take anymore. I thought of my dad… I vividly heard his voice telling me to ‘get her out of her bedroom. Don’t let her be alone…’ I asked my baby if she trusted me and then I told her Papa Dan gave me an idea. She just stared at me, but actually had a little grin on her face.
At 3am I woke my husband, who then followed me blindly and didn’t question me as he and I were tearing apart her bed and moving it to the living room. Rearranging furniture and getting all of her favorite stuffed animals. It clicked in my head that sitting in her room thinking of the pain caused it to be excruciating. She was going down a dark path, thinking she wasn’t strong enough anymore. Living with chronic pain is something I wouldn’t wish on my worst enemy. When you are stuck day after day, your mind starts telling you that this is the way it will always be. My dad could see it all, and he was right there with me…
Once her meds kicked in, my husband and I sat on the couches and turned on her favorite movie, we told silly stories and laughed. Her pain didn’t completely go away, but she wasn’t stuck in her head anymore. She went from feeling hopeless to some relief. She was at least talking and laughing. I knew we had made the right call. The next morning my husband was out buying a reclining chair. We were all in. We were going to do everything we could to keep her comfortable at home. Her smile started to return and she just kept thanking us. I said ‘don’t thank me this was all your Papa, remember?’. She laughed and rolled her eyes, but still thanked the sky above.
My house is in shambles… nothing where it once belonged. I couldn’t care less. I know we will get her through this. Sometimes I get so lost in my head that I forget to trust the process. Sometimes, I’m so sad at the circumstances that I forget we have so much good. We are surrounded with so much love.
By the end of the day I wasn’t feeling sorry for us anymore. My dad isn’t really gone. My grandpa isn’t really gone. We are still guided by those above. Even when everyone goes away, I’m never really alone. During my worst moments, when I feel that I’m not enough, I will repeat these sentences over and over until I believe them. These girls were put into my life for a reason. I was chosen to be their mother for a reason. On my worst day, I will straighten my crown, because I’m Dan Brown’s daughter. Because he never left us, He’s still on this journey with us pulling strings up there, just like he said he would. That’s what I will focus on. During every doubt and every tear we shed I know we will be okay. There will always be hope that tomorrow will be better. I will let myself have my moments and then I will pull up my big girl panties, get tough and take on the world again. My girls deserve nothing less than everything I have. So that’s what they’ll get.
As parents there’s nothing harder than not being able to fix it all for your kids. If I could take her pain I would. For now, I’ll trust these Doctors that I spent years finding. The ones that are going above and beyond for my girl. I’ll pay extra attention to the guidance from above. I’m never truly alone. We are never truly alone.
If you are raising a child with a chronic illness message me your coping strategies. It takes a village and I love hearing from moms that don’t have it all together. You are my people.