Ending the private pity party

Last week, we visited my sister for her birthday. We were heavily loaded with the necessary items for a one-night stay away from home with a baby. I let Callum out of the car and he ran towards the house to greet his aunty and cousins. Matt and I grabbed all the items we could manage, with my load including the beautiful Miss Claire Matilda.

I struggled towards the house with the too many items I had decided to carry. When I reached the flat area closest to the house, I had a fleeting image of lowering Claire on to her feet and watching her toddle towards the front door. I swear I viewed the complete process in my mind as I continued toward the door with luggage and Claire tucked into my arms.

I laughed the moment off in my mind, but it has played repeatedly in my mind since. I just keep thinking how easy it would be if Claire could walk into the house. How cute it would be to see her shake her ruffled little butt as she wobbled unsteadily across the lawn and up to the door.

I celebrated my private pity party in my head for a few days, feeding the disappointment with other silent observations…Wouldn’t it be great if I could just place this meal in front of you and you could feed yourself? Wouldn’t it be nice if you could just eat what we were all having tonight? Wouldn’t it be easier if you could hold your own bottle? I looked at photos of myself and Callum at about Claire’s age, and gave myself more unrealistic expectations to measure her development against.

A couple of days later, I read this honest post from another CDC mother who was having similar feelings, 10 years on. She shared the challenge of the daily caretaking involved to support her daughter. She shared how difficult it can be to know that your child won’t quickly be progressing into a self-sufficient stage anytime soon. It compounded my fears that this was not a feeling that would easily pass, but at the same time it encouraged me to know that what I was feeling was completely normal (I think you’re normal, Tiffany. That’s a huge compliment from an Aussie :)).

This is such a new journey for us all. We are only 20 months in, and if I think about it logically, I know that there are many children without a disability who are not doing many of the things I dreamt of for Claire this week. This difference lies in the diagnosis, and the understanding that in all likelihood, it could be a REALLY long time before Claire is able to do any of these things. The baby phase and the toddler phase just feel like they are going to last forever! It’s a lovely thought on some days, but other times it just feels exhausting! I am a forward thinker and a planner… if I just lived in the here and now, I’d probably find this all a lot easier.

I have been feeling a little sorry for myself lately and I really want to move beyond that. It has been so long since I have blogged because I have once again set almighty expectations for myself and now that it has been so long, I convinced myself I needed to right something inspiring or amazing, or interesting. I think I’ve just written something a little depressing!!  I am hoping that releasing these thoughts into cyberspace might release them from my psyche and alleviate some of the weight on my shoulders.

One of the most difficult balancing acts for me, is being true to myself and honest with friends and family while at the same time remaining positive about Claire and her achievements. I am adamant that people view our daughter and our family life positively. I hate the pity parties and the looks that say ‘poor you’ or ‘poor Claire’. It can however, be exhausting to maintain that positive attitude myself when I have so many fears and concerns about the future. Please understand this, and separate my grief from my relationship with Claire and my absolute adoration of her.

Claire is such an amazing blessing and I know that the extent of that blessing is yet to manifest itself. This little girl is going to be true to the meaning of her name and bring so much light into the lives of so many.

In the last month, she has become significantly more vocal, and even started to say “Mum” on my birthday. She now babbles a lot, often in the middle of the night. She is pulling herself up onto all fours, rocking forward and back, wanting very much to crawl. I have no doubt that she will get there eventually. Claire also managed to get herself into a sitting position from lying on the floor a few weeks ago and has been trying to replicate that maneuver ever since. She is becoming much more interactive with others, particularly Callum. She is getting a lot cheekier too, and is showing a defiant side that is rather cute, but that is another cause for worry!

I have a hell of a lot to be grateful for. It may have just taken a blog post for me to remind myself of that. The day Claire walks into Aunty Jane’s place, there will certainly be cause for celebration, but in my life, there is cause for celebration every day.

Be kind to yourself. And if you see me, remind me to be kind to myself too 😉

This party’s over.