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.