I’m trying to focus on the positive: in my daily life, what I write about in this blog, and what I present to others. I know that focusing on the positive is what will give us the strength to continue this difficult journey with Madeleine. But I cry.
Every day. It helps me to get rid of some of the emotion I’m feeling, and re-focus on the positive. It gives me space and time to mourn the loss of the “typical, developing-age-appropriately baby” I thought I was going to have. It helps me to get the energy to do Maddy’s therapy with her (every hour or so and sometimes more we work on something). It helps cleanse some of the resentment I feel.
For a long time now, when talking about Maddy to others, I’ve qualified it by saying, “I know that raising children isn’t easy. I know that the life of parents of a typical baby isn’t easy.” I met with a counsellor last night to help work through some of my feelings. She said some things that really resonated with me, which were later reinforced by my sister, Lindsay when I was debriefing her about my session. The first thing was that I don’t need to qualify my feelings. Raising a special needs baby is hard. It is harder than raising a typical baby. They wouldn’t say they have special needs if it wasn’t inherently more difficult. When I am expressing that I’m struggling with raising Madeleine, in no way am I minimizing the struggles other families have. If someone who hears me interprets me that way, that’s something they need to work through. I need to stop worrying about accidentally offending others – I already have too much on my plate to focus on.
The second thing my counsellor told me, was that parenting brings out the best and worst features in everyone. But that for us, it’s testing our best and worst a thousand times stronger than it is in parents of a typical baby. It’s normal to behave in ways that you’re not proud of (read, be mean to hubby for no apparent reason) – she said this is just a testament to how much stress I have in my life. All we can do is try, apologize, and try to do better. Deep in my heart I know I am trying. I am giving this all I’ve got. I’m also very good at apologizing. I’m so thankful Eric is the kind, loving, forgiving man he is. He understands how hard this is for me, and when I apologize he truly forgives me. Maybe it is easier for him to forgive me now, because he knows I am not the same person I used to be… and hopefully, my previous, kinder, more tolerant self will return sooner rather than later.
My counsellor expressed to me that the guilt I feel over Eric taking on so much in our lives (cooking, cleaning, caring for Maddy) was typical “mother/women” feelings. We would rather carry the burden ourselves than worry about those we love. I already knew that Eric understands why I don’t do more – frankly, I wake up most days on low or empty, and by the end of the day I would rather eat a bag of chips than work up the energy to cook a meal. He gets that, and that’s why he helps me so much. I need to work on not feeling guilt over that, and trust that if it gets too much for Eric to carry, he will let me know. Our communication is very good, and we debrief every night about how we’re each coping. I need to trust more in that process.
I need to take better care of myself. Just yesterday, I almost hit two cars in my drive to Blue Balloon for Maddy’s therapy, passed three exits before I noticed I had missed mine (making us late for our appointment), found my “lost” flat iron after purchasing a new one, and left meat sitting out over night after I had just purchased it. If I’m going to survive this, I need to work hard at making myself a priority.
I also have lots of good news to share:
We had our final (for now, anyways) PT session! Maddy has managed to work from gross motor delay into about 50th percentile for gross motor skills! Baby is a super star!
Maddy gave me my first cuddles!!! It required that I hang her upside down repeatedly for about a 5-10 second cuddle, but it felt so good. I can only hope there will be more of those in her future.
The tactile desensitization we’ve been working on is starting to show some positive results. We still have a long way to go, but we are hopeful.
Over Easter, my parents told us that they wouldn’t even recognize Maddy as the same baby. She has had that much improvement – smiling, exploring, eating. The world is finally starting to make some sense to her and it shows.
The last thing I’ll leave you with is this picture:
At the end of a tiring day, I always know I can find beauty by looking at our monitor.