When I woke up this morning to make Josh's milk, clean his feeding tube, and get his medicine I began to wonder what a day is like for a mother of an average one year old. This week will be very busy and exhausting for our family, especially Josh. So as Monday rolled around and I pulled out my planner to look over everything we have this week I started wondering what the mother of an average one year old is planning for her week. Then that curiosity built and I started day dreaming about all the questions I want to ask that mother. It's quite a list!
How many cups of coffee do you drink in a day? How many naps does you child need to stay happy during the day? Were you able to shower today? Have you eaten yet? What do you like to do in free time you get? If you were to write out everything you and your child had planned this week what would your planner look like? My last one, how much sleep do you get?
These are things I truly am curious about. I know I lead a very different life then other mothers. Sometimes I get envious, even sad, but I'm very happy with my life. I am grateful for Josh and everything, EVERYTHING, about him. There are times though, especially like this week ahead of me that I find myself thinking about the mother of a "normal" child.
Tomorrow Josh and I will be going to Carmel for him to have an EEG done. And EEG is a test used to find problems related to electrical activity of the brain. After that test he has an appointment with his neurologist. We are having this done because last week on Wednesday night Josh had his first seizure. We think it's possible he may have had others but they just weren't as noticeable as this one. I'v been asked if it was scary, for me to watch it happen. During the seizure I wasn't scared, I was just trying to focus on Josh and making sure he was okay and paying attention to what the neurologist said I'd need to watch for if and when he did have a seizure. Afterwards is when I became scared. I started wondering what this meant for Josh. Is his PMD getting worse? How soon could he have another seizure? But then I quit thinking because I had waves of emotions. Feeling completely helpless for my son, sad, and angry. Josh went to sleep and I sat up for a while trying to process how I was feeling that night. I can only describe it as walking through a dense fog and it was weighing me down. I'v been doing better mostly because I know tomorrow we may get more answers.
Gladly Wednesday the only thing we have scheduled is Josh's weekly physical therapy. Then the rest of the day we will be preparing for Thursday. Thursday we are going up to Chicago for an appointment with his spinal doctor at Shriners hospital. He will be looking at Josh in his back brace and helmet. I'm hoping at this appointment we can also set goals for Josh and what we need to do so we can correct Josh's scoliosis. One thing I'm nervous for at this appointment is for Josh's doctor to be unsure about our next step. When we first saw this doctor he had never heard of PMD. Which Iv come to realize is common for most doctors we see. Because of his lack of knowledge of Josh's condition he has seemed hesitant to begin any treatment. Also in the beginning we had to wait for Josh to gain more weight and develop more before we could start treatment. Since then he has learned more about PMD and how it's been affecting Josh so I'm hoping he is able to make more goals for us. On Thursday we will probably be getting home around 8:30 pm. Josh's feeding schedule requires him to have 6 meals a day, 3 hours apart. The last feeding is at 11pm and he usually falls asleep at 1 sometimes 2 in the morning.
Friday, Josh and I have to be at Riley Hospital at 8:40 in the morning for an appointment with his Developmental Pediatrician. But he has to eat at 8 in the morning so I usually plan on getting there way earlier than the appointment so I can find a good place to feed him. This appointment is mostly a check up but we may also have him get blood work done. His developmental pediatrician also wants to schedule a second swallow study to see if Josh is improving with swallowing and to check to see if he still aspirates. I'm hoping we can be home around noon. I also have to plan on taking a lot longer because I have to feed him before the appointment and after.
Gladly Saturday will be a much better day. A day that I'm looking forward to but will still be a busy day. My mother and her three friends are all coming to my house to help me organize and finish unpacking. Yes, we have lived here for a month but no we aren't fully unpacked. It's really hard to unpack while doing Josh and I's daily routine plus some night Christian works till 3 am and sleeps for a little while longer. So having these four amazing women come to my house and help me is a huge blessing! They are also all hilarious and so sweet so any time with them I know will be great.
Sunday is my goal. I know I'll get there physically but mentally and emotionally I don't know what state I'll be in. Josh and I have never had such a packed and busy week. So my goal on Sunday is to be able to enjoy a day at home, clean and unpacked, with Josh and Christian. In my pajamas drinking coffee and watching all of my favorite Netflix shows. My goal by the end of this week is to not be defeated and feeling so helpless. My goal is that when I think of the mother with an average one year old I don't envy her or wish I was her. I want to think of her me admire her for her journey through motherhood and look at it equal to my own. My goal is to look back on this week and be able to say I did it and I didn't fall to all the trails it may bring.
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