Raising a little advocate

Raising a little advocate

In 2010, our oldest daughter was diagnosed with Polycystic Kidney Disease and in 2012 my second oldest was diagnosed as well. After diagnosis my husband and I traveled to our first PKD conference. We had no idea what to expect. We were just hoping that we could educate ourselves enough to advocate for our girls. In 2017 they were diagnosed with a second genetic disorder called Erythromelalgia. It’s taken years to get where we are today. (I’ll cover PKD and Erythromelalgia in a another post.) Raising two children with¬† chronic diseases is probably one of the most difficult challenges that has been thrown my way. I went through all of the stages of grief before I found some sliver of hope. Then that hope grew. I personally went from not being able to talk at all about the girls illnesses to acceptance. That then grew, to wanting to share our story to help others.

Today isn’t about my story though. Today’s blog is about my oldest daughter. I want to share something incredible that I witnessed.

For the last three days my oldest has been in a lot of pain. Chronic pain and PKD go hand in hand. Usually PKD affects people later in life. My girls have an aggressive mutation and have become symptomatic much younger. So when she has days that she doesn’t want to get out of bed or spends the day on the couch, we don’t get too excited about it. That is our normal.¬† However, when day two rolled into day three, and day three to four, I knew something wasn’t right. I called her Nephrologist and she made the call that we needed to go to the emergency room. The emergency room is kind of our one stop shop to getting urine, blood and ultrasound done fast and results the same day.

My oldest wasn’t happy at all about going. She was tired and in so much pain. The thought of a car ride and everything she knew would be coming, was a lot on her. We talked a lot on the drive to the hospital. All of the things she was nervous about and how she just needed the pain to stop.

Over the years it has been a priority of mine to always fight for the best interests of my girls. When it comes to PKD, unfortunately I am more educated than most Doctors. We looked for two years before we found our forever Doctor. Now that my girls are a little older almost 12 and 13, I am hyper focused on teaching them to speak up for themselves. Especially when it comes to their medical care.

Here’s the thing, I only have a certain amount of years left that I am in charge of their health management. Part of my job as their mother is to prepare them to be away at college and handle an ER visit. To be able to go to their appointments and verbalize what they are thinking, feeling etc. They need to be able to take charge of their health one day. When we are at appointments and the girls are asked questions they have always looked to me to answer for them, or they say ‘my mom can explain it best’. I would then explain and say ‘I think… Is that right?….’ At least this way the end of my thoughts were put back on the girls to confirm or elaborate.

This hospital trip was honestly brutal emotionally with what we heard. BUT, I watched my little girl find her voice. It was one of the most beautiful things I ever witnessed.

After they started the IV and were taking her blood. My daughter politely said ‘can you please not pop those tubes in so hard? Every time you do, it shoves the plastic piece farther into my arm and it really hurts me’. The nurse said ‘of course honey’ and immediately started to pay more attention to taking the tubes out and putting a new one in. (That’s my girl)

Four different people, came in and talked to her. They all asked what was going on and where the pain was. My daughter looked at me the first time and I said ‘go ahead, I’ll chime in if you need me.’ She held my hand and started talking. I was blown away that not only was she accurately describing what she had gone through the last three days, but she was also making comparisons to previous hospital stays and gauging her pain and what she thought was going on from those stays. (That’s my girl)

When it was time for her ultrasound. I watched her face hardening and her breathing deepen. Before I could say anything, my daughter said ‘I know you need me to stay still and I will hold my breath, but can you please not push so hard? When you do I have to move’. She then went on to explain that she has a cluster of cysts that always give her problems on the lower left side. She advised the tech to focus on that area. The ultrasound tech said ‘of course! I’m so sorry. Does this feel better?’ During the Ultrasound my daughter was intently watching the monitor. She’s had so many that she knows what a normal ultrasound for her should look like. When the tech started taking measurements that we both new weren’t her cysts, my daughter immediately began asking questions again. (That’s my girl)

My daughter was doing such an amazing job advocating for herself that the Dr was asking her, what pain medicine she had the best luck with. She was the first one to say I don’t need morphine again, I’m ready for the pills. The Dr. was asking her if she needed another bag of fluids. Every answer my daughter gave, I agreed with. (That’s my girl) When the Dr. was explaining what they saw on the ultrasound and what my daughters new plan of care would be. She found humor in what he was saying and cracked jokes. In the next breath she had appropriate questions. I honestly watched in awe and thought, That’s my girl.

Going through any kind of illness with your child is difficult. The greatest gift we can give them is the power to believe in their voice. To make them a part of decision making. Yes there will be times that your decision is in their best interest and trumps what they want. The majority of the time though, it’s all about delivery. You can say this is what the Doctor is recommending and this is what I think is best but what are your thoughts? Does what the Doctor said make sense to you?

Our children grow up so fast. We have a limited time window to fit in as much knowledge and advice that we can. One day soon, my girls will be making their own decisions and I may not always agree with what they choose. I will know that I have given them all of the tools that I knew to give them. Being a parent doesn’t mean that I have all of the right answers all of the time. Being a parent is a promise that I will never stop finding answers.

They will have big decisions coming their way. Dialysis, transplant, medications etc. They need to believe that what they choose is what will be best for them. They need to be confident asking questions and not just following Doctor recommendations blindly. Most importantly they need to know that as a parent, I may not know the physical pain they go through. But, I will always be there for the emotional ups and downs that come with their diseases. On the days that they want to scream because this isn’t fare, I’ll scream with them. On the days that they are calm and need to talk about all of their feelings, I will calmly listen. On all of the days, for the rest of my life, I will be there. I will always be so proud and my heart will always be so full remembering the day that my little girl became a little advocate.

For more information of Polycystic Kidney Disease please visit: https://pkdcure.org/

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