I certainly thought I knew myself as a parent, before I was one (ha!), better than I did. This has by far been the greatest, best, most difficult and even most anxious time of my life as a settle in.
My current anxiety is about Gia becoming mobile. I already have help and am never alone in the house with Gia, but I still worry of the unknown. Once she is mobile we will use the skills we have used to figure out the infant stage and figure out what works best when she wants to be in everything.
There will likely be more baby gates, and safe spots she can be content in while I can’t be all hands on and we will be multi-tasking baby and life in a different way. That, will for sure bring some laughs and creativity I’m sure I will write about.
In many ways our life is as normal as the rest. Gia looks to me for comfort like any other 4.5 month old, she laughs as I turn up the music and change the song lyrics to be about her or our day, she wakes me in the middle of the night, she stares deeply into my eyes as if she knows what I’m thinking or feeling and keeps staring, she plays with me, loves books read to her, loves to be rocked to sleep, and all of the many things as parents we do have in common.
What has been the hardest part actually parenting, however, has been what I cannot do for her at this stage. I have gotten wonderful support from a Moms with Muscular Dystrophy group, and am eased in knowing many of them went through this, and some are still going through it.
I always have to have another person who can help me with Gia physically at this age around. I cannot pick her up when she’s crying, I can’t make her bottle, I can’t change her diaper, I can’t change her clothes. But I still parent and am a part of all of those areas I can’t do alone.
I entertain her at bath time while another washes, I hold her when somebody puts her in my arms, I talk to her and distract her while she’s getting changed, I pick out her clothing, I decide how and when things get washed, I have somebody give me the bottle and prepare it for me, I cuddle her and nuzzle her back as she leans into me.
Still, knowing all I can do does not for me take away that anxiety when she’s crying looking right at me as somebody else comes to put her in my arms. I am always deep in my head. I wonder what she’s able to think and understand at this age.
From the moms with SMA and similar disabilities I’ve heard and believe this part gets easier. But what will I worry about next? I have never let worry stop me and pushed through but I also expect a lot of myself and consider motherhood my biggest challenge yet. I don’t want to always be in a state of worry, I want to smell the roses more.
I may always worry, and my worries will change as she grows I’m sure. But that too, being concerned and wanting the best for your child is what most parents do. So, I think I’m doing ok, and realizing that we all parent different and that is what helps to shape the uniqueness of our children. I learn from you, lessons, new ways of doing things, and not to be so hard on myself… And, I hope you will learn from me as I take you in the deep end with me at times, and the shallow play waters of laughter at others.
Right now I will leave you on a lighter note, with one of the funniest things I can think of off the top of my head that has been a part of our daily life. Gia is already a rebel like her mom. You’d not believe how many strangers come and ask if she’s mine and how I had her. We go out and we are a little circus show almost! She, however, loves the attention usually, but she has a habit that I think is hilarious. She always poops her diaper, when there’s people staring and no place to change her privately nearby. And she’s all smiles at them while doing so! When we can’t get privacy or go to the car, we just put a pad and blanket down on her stroller, and as much as possible turn away for as much privacy as can be had. Of the few times this has happened, she certainly has made a “Stink” at just the right time!