I write a lot about the positive side of raising Abigail because often that is how I feel. I love her and her little personality. I would not change Abigail for anything, but I am not as strong as some may think I am. Often, people will comment about my faith or my strength or my endurance as I write about our life, but often I feel like I do not have any of those things. Here, we simply take one day at a time because we just do not know what tomorrow will hold.
That is hard for me. I am a planner. I love lists and schedules. Part of me wants to already be looking for a school for Abigail or planning our vacation for next year (this year is already planned). That’s me. My husband says I plan way too much and way too early. He describes himself of flying by the seat of his pants but in a controlled way. He was that guy in school who wrote his paper the night before it was due and then made an A on it. I was not that person. I loved syllabus day because that night I would lay out all my syllabi and make a semester long schedule and calendar of when I would start every project or paper. Everything was done with days, if not weeks in advance of the deadline. I do not work well under pressure! I tell you all this to show you that this new life is not my favorite.
Babies mess up schedules. I usually plan out in my head how my day will go hour by hour. Even though it does not affect anyone but me if things change, I just like having order. But I have learned that babies do not live on schedules. That’s a tough one for me to learn. You never know when Abigail will have a day when she will not nap so there goes my hour I had planned to clean or organize the house. My ‘perfect’ made up schedule gets ‘ruined’ a lot. It used to bother me more than it should, but just the other day our plans got changed last-minute and my husband said that I was handling it a lot better than I used to! That was a huge compliment for me!! I am improving.
But all this is just petty worries that I am learning to dust off and move on with. There are some moments where it all just hits me that we have no idea what the future holds. There are some moments where I completely doubt myself and my ability to mother. There are some moments where I am jealous as I watch other two-year-olds with their mothers. There are moments when I fear, worry, and analyze way too much. There is no book that tells you how to parent. There definitely is no book that tells you what to do when you hear the worse about your child. That something is not right with them. One day at a time is all I can do sometimes.
We met with our Babies Can’t Wait counselor this past Thursday. Babies Can’t Wait is a program that helps special needs parents work with the local school system to prepare your child for an easier transition into school once they reach that age. She was explaining to me about the process of getting Abigail in preschool in the next few years. Then she asked the dreaded question I try not to think about “has anyone mentioned to you about getting a wheelchair and other equipment?” Yes, a wheelchair. I know that’s a huge possibility in our future, but no one in the medical field has ever asked that before and it broke my heart. I want my baby to walk and explore and be able to get around on her own. I know amazing people in wheelchairs, and I know it would not be the end of the world if Abigail was placed in one as she gets ready to go to school. But it is the thought that my baby would once again be seen for what she could not do rather than what she could do.
One day at a time. That is what I remind myself when the fears of the future prevail. Today Abigail can wiggle and twist all on her on. Tomorrow she could stand. We simply do not know what she is capable of, but I have seen that child do things I would never thought she could do. Yes, therapy helps her a lot. Yes, I work with her some at home. But she does a lot of things all on her own. She is learning and growing everyday. So no, I do not think I am strong or even capable of mothering this stubborn blonde-headed baby but I know that Abigail is strong and we will continue to fight for her each and every day!
“Anxiety happens when you think you have to figure out everything all at once. Breathe. You’re strong. You got this. Take it day by day.” – Karen Salmansohn