Today. It's 8:21 am as I'm writing this and I'm tired.
I've been up since 3:15. I woke up without a voice. I took some medicine and started packing the kid's bags. Made some coffee. Laying their clothes out. Matt gets Wesley dressed. Packing some toys. Getting myself dressed. Still trying to fix my voice. Brushing my teeth. Trying to remember snacks for Wesley's sister Ava. Thinking about grabbing a sippy cup for her; ultimately forgetting to grab one. Making sure Wesley's medication and bandages are all on their way to infusion with us.
Searching for toddler shoes. Matthew and I putting the kids in the car. Running back for back packs. And my coffee. And an iPad. And blankets for the kids because it was cold at 4 am. Getting gas and we are on our way. Where on earth could someone be going at 4 am?
Every Friday and maybe the occasional Thursday. Infusion day. Most days the mornings run smoother than this. Maybe when I have more sleep, maybe when I'm not sick. But generally it's the same. Wesley has had two medicines added to his routine since last infusion.
His nighttime medicine tastes absolutely disgusting and has ruined him from taking any medicine easily. He used to do so well, but this has put his medical trauma through the roof. Wesley has had reactions his last four infusions. This is a big deal. Because it means Wesley's body is rejecting the medicine that will help him. I now have to administer his first dose of pre-infusion medicine sometime around 5am...
Normally he actually gets it around 5:30. In the car, at our midway point of the nearly 4 hour drive to Children's Hospital. This morning I was mixing meds in a styrofoam cup in my car underneath the dome light as the sun had not even begun to rise. I put it in the syringe and chase him around the car, cornering him into the front seat. Once he knows he has no choice, he normally takes it and swallows quickly. Not this time. He opened his mouth like all was well and as I pulled the syringe away he decided to spit it all over himself, me, and the car. I lost it. I yelled at him. I was so angry. I couldn't take this. Why? How could he do this?? Why did he do this? We are already running late. He knows he has no choice but to take it. Now I have to make more and try again. All these thoughts as I threw the syringe onto the ground to rummage through my back pack with one hand that is on the other side of the car praying he doesn't decide to sprint and run across the parking lot.
As I'm trying to make more medicine the capsule isn't coming open so I try my bandage scissors. I end up completely cutting it in half as the powder sprinkles everything white. So I try again. Finally something doesn't end in disaster and I'm stirring and trying again with one of my back up syringes.
My mom ends up having to hold his arms and legs while he is half propped in her lap as he has transformed himself into an octopus. Squirt it in the back of his cheek and cover his mouth hoping he decides to swallow. One down, one more to go. And this is a new medicine. To try and keep him from reacting. From a medicine that will help his body, but all he knows is this medicine is new and so he fights it worse. This is just one part of medical trauma. All of this is going on while I'm crying because I am at my limit. Yesterday was the same. The day before that, was worse. It's been a hard week. I felt bad for getting angry because I realized he is just as done as I am. He's had a rough transition coming back from vacation and I don't blame him. This shit sucks.
I've been up since 3:15. I woke up without a voice. I took some medicine and started packing the kid's bags. Made some coffee. Laying their clothes out. Matt gets Wesley dressed. Packing some toys. Getting myself dressed. Still trying to fix my voice. Brushing my teeth. Trying to remember snacks for Wesley's sister Ava. Thinking about grabbing a sippy cup for her; ultimately forgetting to grab one. Making sure Wesley's medication and bandages are all on their way to infusion with us.
Searching for toddler shoes. Matthew and I putting the kids in the car. Running back for back packs. And my coffee. And an iPad. And blankets for the kids because it was cold at 4 am. Getting gas and we are on our way. Where on earth could someone be going at 4 am?
Every Friday and maybe the occasional Thursday. Infusion day. Most days the mornings run smoother than this. Maybe when I have more sleep, maybe when I'm not sick. But generally it's the same. Wesley has had two medicines added to his routine since last infusion.
His nighttime medicine tastes absolutely disgusting and has ruined him from taking any medicine easily. He used to do so well, but this has put his medical trauma through the roof. Wesley has had reactions his last four infusions. This is a big deal. Because it means Wesley's body is rejecting the medicine that will help him. I now have to administer his first dose of pre-infusion medicine sometime around 5am...
Normally he actually gets it around 5:30. In the car, at our midway point of the nearly 4 hour drive to Children's Hospital. This morning I was mixing meds in a styrofoam cup in my car underneath the dome light as the sun had not even begun to rise. I put it in the syringe and chase him around the car, cornering him into the front seat. Once he knows he has no choice, he normally takes it and swallows quickly. Not this time. He opened his mouth like all was well and as I pulled the syringe away he decided to spit it all over himself, me, and the car. I lost it. I yelled at him. I was so angry. I couldn't take this. Why? How could he do this?? Why did he do this? We are already running late. He knows he has no choice but to take it. Now I have to make more and try again. All these thoughts as I threw the syringe onto the ground to rummage through my back pack with one hand that is on the other side of the car praying he doesn't decide to sprint and run across the parking lot.
As I'm trying to make more medicine the capsule isn't coming open so I try my bandage scissors. I end up completely cutting it in half as the powder sprinkles everything white. So I try again. Finally something doesn't end in disaster and I'm stirring and trying again with one of my back up syringes.
My mom ends up having to hold his arms and legs while he is half propped in her lap as he has transformed himself into an octopus. Squirt it in the back of his cheek and cover his mouth hoping he decides to swallow. One down, one more to go. And this is a new medicine. To try and keep him from reacting. From a medicine that will help his body, but all he knows is this medicine is new and so he fights it worse. This is just one part of medical trauma. All of this is going on while I'm crying because I am at my limit. Yesterday was the same. The day before that, was worse. It's been a hard week. I felt bad for getting angry because I realized he is just as done as I am. He's had a rough transition coming back from vacation and I don't blame him. This shit sucks.
We came home from vacation and Wesley had a pain management appointment. He now has disgusting medicine he has to take every night so maybe he can stop hurting enough to sleep. Thankfully it helps him. The downside, it is one of the nastiest medicines I have ever tasted (yes, I taste all of his medicine so I can be prepared for his reaction). He hates it. He hates taking it. He hides when I start getting it ready. It goes a lot like what happened this morning. He tries to spit it out. We have to hold him down. It is not something I look forward too.
That same week, the day after he got that horrible medicine. He had an echo-cardiogram because his chest pain had been increasing more and more. They said no change. Exactly a week after, on our way to infusion I had to stop the car twice and get him out of his carseat to comfort him because his chest was hurting him so badly. I called and asked them to consider a heart monitor and they did. He now has to wear one for 30 days. He is allergic to the glue that holds the patches so it's always raw underneath even though we change them once a day to try and avoid his skin from breaking down, which we have done for one week.
Bringing us back to today.
As I was getting him into his car seat he was still crying. I was still crying. I wanted to turn around and go home. I held him and apologized for yelling because I was wrong. I apologized because not only was I guilty of over reacting and getting angry but I felt guilty for him having MPS in the first place. I told him I was sorry he has to do this. That I was sorry that his life turned out this way because this is not what I had planned. That this was not anything like I wanted and it wasn't fair to him because he deserves a better life than this. And that's true. He's tired. He dreads hospital trips. And infusion. And night time medicine because it tastes disgusting. He hates his heart monitor. He is angry. And I hate all of that for him. He doesn't want to do any of it and that's understandable. That's why it's so hard for him to come back from vacation because that's the life he wants. He wants to be free. He wants to be a kid.
This has been a hard few days. For all of us. Today I didn't win Mom of the year. Today, this is what rare disease looks like. This is what MPS looks like for us some of the time. Other times it looks like sleepy smiles and playing peek-a-boo with my 5 year old over and over and over. But that wasn't today. Today it was ugly. And the ugly days are the hardest. Where I feel the most guilt and want to scream how I hate MPS and all that it is stealing from my son from the top of my lungs.
Please pray for us today. Please pray for peace and comfort and rest for Wesley and our family. Pray for a good infusion and that his new additional pre-infusion medicine works. Pray we have a safe trip home. Pray the doctors see what they need to see on Wesley's heart monitor to figure out what is causing him pain.
Thank you.
