Could-have-beens

I read another moms blog today that made me sad. The entire post was about grieving for the mom she could have been if her child was born without challenges/disabilities. Her child was 5. I felt sad because I can't imagine how it is to spend 5 years wondering what could-have-been and mourning the child I didn't get. 5 years. Wow.

I frequently think back to the first year of Phoenix's life and the heart-wrenching grief I experienced. I wonder if it was so difficult because of how fully I embraced the sadness. It was difficult for me to focus on much else and in the end I needed to see a counsellor to move out of it. But when I had thought every thought about her future, and felt every emotion, and processed what it all meant to me, I was done. It was gone. I could move forward free of the what-if's and what-should-have-beens. Because these have to be the most pointless, self-defeating thoughts that we, as mothers of children with disabilities, can have. These thoughts are toxic, and soul damaging and they keep us from fully embracing the child that we have been given.

I also read this quote from another mom who has two children with DS. "Down syndrome is not bad at all. It’s not ideal, and most of the time it’s unexpected and unwanted. But it brings many good things for us." This is my experience of Down syndrome. It's not ideal. It was very, very, unwanted. But it has brought me and Husband more happiness and joy then we could ever have imagined.

Every single day I look at the wonder that is my child and feel grateful for her existence. I love her and embrace her fully. Her challenges, her delays, her strengths and her quirky little personality. I embrace her. There are no could-have-beens or what-ifs. There is only living in the moment of life with an almost-3 year old who drives me nuts and fills me to the brim with happiness, often within moments of each other.

I feel equally grateful that I have been able to leave the could-have-beens in the past, where they belong. It has allowed me to enjoy and fully appreciate the experience of raising Phoenix. I hope that other mom gets there too. It's a beautiful place to live.

Big Strides

I'm not sure if I just haven't been noticing the changes, but Phoenix seems to be making some really big strides lately. She has finally, after 6 months of work, figured out that sitting on the potty means we want her to pee. She loves everything else about potty time and has it down pat. The sitting, the throwing toilet paper in, the flushing and the washing hands. Everything except the peeing. But for the last week every time she has sat on the potty she has refused to get off until she pees. It often means sitting and waiting for 20 minutes or so until the feeling comes on, but she has been doing it! It makes  me feel really optimistic about trying to fully potty train this summer. The summer time is a good time for us to potty train because I'll be off work and i can really take the time to take her to the potty every hour or so. Of course, she can't yet pull her own pants up and down yet, but one step at a time, right?

The other big leap is in language. I am noticing more and more that Phoenix is putting two words together. And the more I notice, the more I am consistent with prompting her to expand her expressive language when she falls back to one word requests or sentences. I feel like we are really working as a team to help build her language skills. To use a very overused term, it feel like we have synergy. It makes me feel really warm and fuzzy inside.

Of course there are other areas which are not progressing at all. Eating for instance. Getting this child to eat fruits and veggies is really hard work. One of my recent shining examples of parenting involved Phoenix crying and me shoving a piece of orange in her mouth while exclaiming "It's not poison! It's just fruit!". Sigh. Not my finest moment, I'll give you that.

Big strides indeed.

Obnoxious

Is it obnoxious to brag about your kids accomplishments? Am I that mom, who talks about how great their kid is and only serves to piss off those around her who get tired of hearing how wonderful Phoenix is?

I don't know, that's why I'm asking. I talk to moms of typical kids pretty openly about how great Phoenix is developing. They seem to appreciate the updates and obvious pride I have for her. But with fellow DS parents I find I try to hold back a bit, at least in person. I don't want anyone to think that our children's development is a competition, because it is not. The fact that she is progressing well doesn't imply anything other than she is progressing well. I don't work harder than any of the other mom's I know to help my kid progress. We all work hard to help our kids and they all progress at their own rate. I think all our kids have bright futures. But I can't help but wonder if it pisses them off anyway.

Phoenix had a great assessment today. We went to our child development centre and met with the SLP first and then the PT. The SLP performed a standardized test on Phoe to measure her speech and language ability and then charted her results into percentiles. The results were amazing. Phoe falls at the 80th percentile for speech language, which is just under the normal range for her age group. So this is a mild/moderate delay. And yes, this is me jumping up and down with excitement that my child has a mild/moderate delay. Because you know what? Most children with DS have severe language delays early on. Language frequently takes much longer to emerge and progress in our kids. So the fact that she scored as high as she did is phenomenal.

But, we needed the PT assessment to come out lower in order for Phoenix to qualify for her preschool funding. To receive this funding children must have a severe delay in one area or mild/moderate delays in several areas.

Her PT assessment went well but she still only scored in the 2nd percentile, mainly because she can't run or jump. Surprisingly, this is considered moderate as well. Which makes me wonder, if  98 out of 100 children score higher than Phoenix on this test and this is considered a moderate delay, exactly how flipping delayed do you have to be to be considered severe?

So Phoenix has several moderate delays. That's wicked. And I am not being sarcastic. Because I know she is delayed. No one needs to tell me this. I can see with my own eyes that she does not have the same skills as the other kids at play gym. And she doesn't talk as well as they do. But she is trying, and learning and growing and having fun. And her delays are not considered severe, although I would love her just the same if they were.

So today I am celebrating. I celebrate her strengths, her weaknesses, and her presence in our family. Life is good. And if that is obnoxious, I don't care one little bit.