Just Another Week

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. 

A Warrior for a Son

People say I am strong for what I go through. I wish you’d see me alone at night, when Josh is asleep and Christian is at work. People say they don’t know how I do it, well I honestly don’t know either. Take a moment and think of your children, if you have any. If they were born and had the disabilities Josh has you’d fight for them every day wouldn’t you? Simply because they are still the child that you love today. Josh has disabilities but he is capable of very much. Capable of making hard hearts soft. He is capable of opening eyes and showing a new perspective when people’s eyes had been closed to these difficulties. Josh is capable of laughing, and pushing his toys off the couch, and fake crying so I pick him up. He is capable of love, fear, pain, and strength. He has conquered every obstacle, every trial, and every battle that has come his way SINCE BIRTH. I would like to believe Josh is capable of more than some people are without disabilities. So when you look at me and wonder how I don’t break from everything going on in our life right now, it’s because I have a warrior for a son.

I thought I would have to teach my child about the world when in fact I have to teach the world about my child. All the while Josh is teaching me about the world. For a long time I didn’t want to share Josh with everyone. I didn’t feel comfortable posting photos on social media or updating people on what we were doing. I even asked my parents to wait until I was ready to share him. Now though, I see the world needs Josh. So I encourage you all if you have the chance to get to know Josh or someone else like Josh to not hesitate. Being loved by someone with special needs or disabilities gives you strength. Loving someone with special needs or disabilities gives you courage. 

This is Permanent

I wish I could have known my Grandma Smith better, and had more time with her. She passed when I was in second grade. Stories I hear from my father I think she would have been a great role model for me and someone I'd be very close with. I always love when my dad tells me more about her. The way she described her ways of coping with difficult situations was to put it in a box and store it away. She'd have many different boxes for many hard things, and I'd say I'm the same way. My boxes though, don't stay closed. Some like to come out and open their lids and overflow so I have to look what's inside and clean the mess up. I wish I could speak to her directly about how she kept her boxes organized in her head because recently all of mine have overflowed and I'm struggling to clean up the mess. 

As I've said before we just recently moved into our first house. There has been a lot of stress but slowly we are settling in. It seems as if we have a lot of unpacking to do still. My biggest project this past week was to get all of Josh's clothes organized into his dresser and getting his room to be done unpacking. I had his bags sitting by his dresser all week and every day I'd look at them and say I was putting the clothes away but I never did. Partially because I had little to no motivation but also because every time I looked at them I felt deflated. Finally, I said enough was enough and once I got started it wouldn't take long and I would be done. I really didn't know how emotionally challenging it would be to go through and organize his clothes. The first bags were clothes he can fit into now and all of his socks. Those bags were a piece of cake to just fold and put in the dresser. The last bags were his first newborn outfits. I knew ahead of time I'd be sad to fold them up and put them in bags to give away, I just didn't know it would take me all night. 

I think every parent can agree it's hard watching their baby grow. It's been exciting watching Josh learn and grow into a big personality. Looking at his newborn onsies and pants really showed me just how much time has already flown by. I started thinking of what it was like to have a new born and how things were in the beginning. We have gone through so many different periods already with Josh. 

When he was born and we were trying to figure out what his diagnosis was I consider that our waiting period. If you know me at all you know I am not a patient person. This waiting period really tested me and forced me to give up control and be patient. Then he was diagnosed with Ocular Albinism and this was the blur stage. Doctors told us he could hardly see and his vision may never get better but he would be okay other wise. Would still be able to go to school and learn to crawl and walk and would be a healthy boy. For a short while it seemed like I could vision what our life would be like and I was okay with it. I had even looked into books that I could learn Braille so I could teach him when the time came. Very quickly it became clear something was being overlooked. He still wasn't hitting milestones and was struggling to gain weight and keep his food down. Then the next period is when he was diagnosed with PMD. I haven't found a name for this period. Honestly I wouldn't call it a period in our life with Josh. Simply because this one is permanent and one that isn't just for a short time like the others. This has been harder for me to digest. I look at Josh and see my perfect little boy who has the biggest and purest heart. My own heart has grown since becoming his mother and it's overflowing with love and joy and excitement for this life with my son. But my heart also aches and makes me feel deflated. 

When we got the diagnosis for Josh they couldn't give us definite answers as to how it would affect him directly. They told us he will always have low muscle tones and he may not be able to eat or talk. They told us its possible he could have seizures and respiratory issues. They also told us he could get strong and may not have seizures and his breathing could be fine for many years. Hearing all of this was very frustrating and still is, because I just want them to be able to tell me what it will be like for Josh to live with PMD. Every boy with PMD is different and is affected in many different ways, some severe and some very little. Recently though Josh has been showing more symptoms. He is needing to take medicine for reflux issues so he can tolerate his feedings, and he's needing to take medicine to sleep because he'd be up all night and day which was exhausting for him. Also recently he's had a muscle spasm in one leg but nothing major, which is good. I look at his muscle spasm and worry it'll get worse, like the doctors warned us, and he will have to take medicine for that as well. These are all things the neurologist and other specialists told us could and most likely would happen for Josh. It's one thing being told it'll happen and seeing some of them start.

I have been fearful for things getting worse for Josh and I get frustrated with myself for not making it better for him. There are things I can try to help and correct, such as his scoliosis, but I'm not a healer that can take away my son's disabilities. I have to remind myself many times throughout the day that I believe in a God that can bless my son and give him strength through these trials. During the waiting period I felt very close with God, constantly praying for patience and guidance to the doctors to help us find a diagnosis. During the blurred period and our recent diagnosis I have felt as if I have lost my relationship with God completely. I let my anger, confusion, and pain push me away from Him and I put Him to blame for all of the pain we were going through. Slowly I have been hitting more and more breaking points. Long nights Josh won't sleep that I become exhausted, or days he won't work through therapy and I feel defeated, or feedings he pukes up even when I do everything right for him. After all of those breaking points I felt a tug at my heart to speak to God and many times I didn't listen. Finally God spoke to me in a way I couldn't turn away from Him. So at my breaking points I have found comfort in Him. Instead of blaming Him for the pain I feel, I lay it at His feet and ask for mending and grace. 

Last night many of the boxes that held my fears, anxieties, and pain about my son opened up and overflowed. All because I folded his newborn clothes. There are days that I am truly okay with our life and I look ahead and I am excited to watch Josh grow. Other days my heart is weary and I struggle to look past the mess and chaos. I hit a breaking point and part of me felt crushed, but I'm learning and growing and becoming stronger than I had ever thought was possible.