I keep waiting. Waiting for things to happen. Waiting for things to change. Waiting for Brady to talk. Waiting for Brady to concentrate and start to learn, play, and make some friends. Waiting for tasks and trips and family parties that used to be so fun and easy to get back to that.
I am waiting for so many things to change. I am waiting for all Brady's hard work to pay off. I feel our family has been patient. I feel I have been patient...but lately, the waiting feels like it will never end.
I am starting to wonder what exactly it is I am waiting for? This past week was a pretty tough week for me in my history of special needs parenting. I have challenging moments quite often, as I continue to grow into my role as a special needs mom. It's not a title I asked for, but it's mine now and I feel like I have embraced it.
There are days when I feel like I have it all under control and then there are days, like this past Friday, when I felt like it all just a little unfair and beyond overwhelming. I guess, I keep waiting for Brady to catch a break, especially when it comes to controlling his Type 1 Diabetes. I keep waiting and waiting for the Type 1 Diabetes care to get easier. If anything, this should be the simplest part of caring for Brady.
I'm a 28-year expert of diabetes care. But, like so many other parts of Brady's life, this too has been a mystery and an unending challenge. I know the mystery of a rare chromosome duplication will always be a struggle Brady faces, but I let myself believe that with diabetes...well that I could handle. Brady takes two different types of insulin to treat his diabetes. One is long-acting and is supposed to keep his blood sugar in check throughout the day and night. The other insulin type, the Humalog, is only used at meal times. The amount of Humalog given is dictated by the amount of carbohydrates Brady eats at each meal.
Every morning Brady and I have a very strict routine. A routine that is usually like clockwork. I draw up his insulin injection, I test his blood sugar just as he is rubbing the sleep out of his eyes and beginning to stretch his little body across the length of his crib. I give him his injection before he is able to jump up and welcome the day. Then we start breakfast, have his Humalog injection and move on with our day. Brady and I are creatures of routine.
Except on this day. I accidentally gave Brady the Humalog instead of the long -acting Lantus insulin. Three times his normal amount of insulin. My heart sank and then started beating frantically. Too much insulin and not enough food can cause a very low blood sugar and, if untreated, unconsciousness. I know this better than anyone. Panic started to creep in, I started shaking and crying with fear for my little one and anger at myself for making such a mistake. I dialed my husband at work without even remembering the numbers. I started shoveling scoops of oatmeal, then yogurt, then pudding and chocolate milk into my sweet boy, who looked up at me confused and delighted all at once. So many sweets So much food. He was giddy, but my boy knows his mom and he knew something was wrong. He saw my tears and heard the fear in my voice as I called his daddy. He may not understand in the traditional sense, but Brady knows when something is off.
Our supportive endocrinologist called us back within minutes and walked Joe and I through this pretty common error. In the end, Brady's blood sugar ran high all day, as my husband and I had given him more carbs than Brady could imagine and he was just fine when he went to bed that evening, but I was shooken. I was tired of waiting for things to get easier. This was my error but it is still part of the diabetes puzzle. A puzzle of unexplained highs and scary lows that make us wake our sleeping boy at night to fill him with juices and puddings to combat low blood sugar dips. A puzzle where one day the pieces of food, insulin, hormones and exercise all fit together and other days where not one fits with the other.
I am tired of not even understanding something that I do understand. I have been a type 1 diabetic for 28 years. I understand diabetes. I know diabetes. I can fight diabetes...but it seems to be winning when it comes to my son.
I am waiting for it to get easier. As a special needs parent, I know I will play the waiting game for a very long time. Brady has special needs that are unusual and difficult to understand or predict. Brady makes progress towards milestones, like saying "juice" or "Dada" and then the progress goes away and we never see it again. Brady was clapping regularly in response to questions he wanted to respond to in the positive. He did this for a few months. Then, all of a sudden, without warning or reason, Brady stopped. He stopped communicating. I am waiting for it to come back. I am not even waiting to hear my little boy's voice anymore, I am just waiting for him to show me what he means...just communicate with us somehow, some way.
This has been a challenging summer. Brady's milestones have come to a standstill in many ways. There have been some. Working on stairs and practicing a little bike riding, but I keep waiting for something big to happen. I hesitated to write this post and then to even publish this post. I know it is not very positive. I try very hard to stay positive. I try very hard to focus on what my son has not yet accomplished instead of what he cannot do. I try very hard to celebrate each and every little accomplishment, even if it seems simple to others. I try to never feel sorry for myself or for my family and especially not for my little boy. But there are days that are tough. There are days when I feel like all I do is wait and plan for all that I am waiting for. This was one of those weeks.
A good friend of mine, a mom who has three healthy little kids and many blessings, and who tries very hard to understand what I am experiencing with Brady, told me the other day, that "sometimes it is ok to feel bad and be down and have a rough week." I appreciate her willingness and effort to understand our challenges and even my tough days. She said everyone has them, these "bad days", regardless of what is happening in their lives, but I should let myself have a few more of those kind of days. It is ok to be sad. But it is not ok to feel sorry for myself. I don't want anyone else to pity me, so I better not pity myself. I want others to try and understand what we are experiencing as parents, so I need to stop and try to understand what Brady is experiencing, so I can help him in whatever way he needs. I have to let the bad days pass by quickly and learn to stop waiting for something and just enjoy the uniqueness and beauty that is my son.