This week has been busy and mixed, to say the least.
It started out with my last post being featured in The Mighty, a website which celebrates diversity and overcoming challenges. The piece was one I struggled to publish, because I knew it didn’t portray me in the best light. I was being honest, which is what I’ve tried to do all along, and I knew that I was taking a risk.
While friends and family and my blogging buddies have been nothing but supportive of me, some of the readers of The Mighty were less than. On their facebook page, my post generated comments ranging from
“I can’t believe a judge gave this child back to this misguided mother. Who knows when she will need more “vacation” time.”
“Children aren’t supposed to be disposable-we can’t brush them off on someone else to live and care for and pick up the pieces, while we shuttle of to relax in Hawaii.”
“This is her child she is talking about, not a car or a computer she has considering purchasing. We all feel there emotions from time to time, it’s called parenting, and its not easy. Not for any of us. Typical child or not.”
to other commenters who thanked me and said they appreciate the honesty. This woman’s one stood out.
“I am the mother of a daughter diagnosed at birth with spina bifida. The emotions that come with the birth of a disabled child are indescribable. I kept my daughter and she is now a young adult trying her best to learn how to live independently. The only ones justified in condemning this mother are other mothers who have been in the same situation. If you have not faced the roller coaster of emotions that come from the fear and grief of this being unexpectedly thrust upon you, please delete your comments. Thank you Tessa for publishing this article. It would have helped me tremendously to have read this 23 years ago. What a relief to know that I was not the only mother to feel this way.”
I’ve always known my honest approach may come back and bite me. I knew that not everyone would see it how I saw it and understand my story. I’ve been waiting for it, but it still stung. I guess one of the reasons is that I’ve always known some people must feel this way, but in person, people have kept their opinions to themselves. Which I’ve appreciated. Seeing those thoughts and that anger in writing just reminded me of not only other people’s judgment of me, but my own judgment of my actions.
The post they were responding to was very specific. It didn’t go into the Peanut’s (I got told off for calling her that too) diagnosis or other events that have happened, it was a snapshot of my emotions during our time apart. It was (as some readers commented) all about me. It was about my emotions and my time apart from my daughter. As a stand alone piece it could be read in a number of ways.
After reading those comments, despite the positive ones, and despite knowing these people don’t know me or what has happened in the last year, I contemplated stopping writing for a while. I thought, I don’t need this, on top of everything else. I’m happy. The Peanut is happy, we don’t need this in our lives. I’ve never been very good with things like this. I feel my pulse accelerate and a sick feeling building in my stomach.
And then my brilliant sister commented on the thread saying this.
“Many who’ve angrily commented here seem to feel that a person honestly describing a difficult time in her life necessarily amounts to “glamourizing” that experience. Or the idea that as a reader, to read and reflect painful account and feel some empathy for that experience is necessarily some kind of “glamourization”.
Or that anyone, even the parent of a seriously multiply cognitively and sensorily disabled child, is in a position to judge how another person felt in a time of huge stress and shock.
It’s a cruel kind of solipsism to say “I reacted in this (implicitly “better” – lucky I’m so perfect) way to a similar situation (or maybe not that similar – how much can you tell from one short blog post?). Any other reaction is wrong/should never be spoken of.”
It’s toxic and isolating to suggest that even a moment of pain, or doubt, or depression, or moral struggle – even if those things are what really happened – should never even be mentioned. If it is, it needs to be shamed and shouted down.
What that amounts to is the idea that there’s one correct script that you’d better keep to, at all times, not even lapsing for a moment, even if that script does not describe your own actual experience, or you’ll be attacked and shamed for wrong-think.
Parenting is a challenge. Parenting children with special needs has more than its fair share of additional challenges. I just wish one of those challenges wasn’t judgment, vitriol, and ungenerous scorekeeping from other members of that same community.”
My sister is very good with words. Her post reminded me of one of the key reasons I’ve kept this blog going. There is no script for dealing with this, and there shouldn’t be. What there should be is understanding and compassion, particularly from the relevant community. There should be the ability to recognise how hard this adjustment is for some people, and the acknowledgement that your brain might take you to some pretty dark places.
I have received nothing but love from the CHARGE online community, but it’s clear that there are pockets of people out there in the special needs community, and I guess just in the general population, who consider their way the only way and the right way, which means if your feelings don’t align you feel isolated and alone. Not everyone reacts to stress and shock and their life turning upside down in the same way. It feels so important for other parents, and me, to know that that’s ok. That other people have felt this way. That the world will keep spinning, just give it some time.
I put my life out to the world, so I’m not surprised that at some point I have received this kind of feedback. I was expecting it and I’m sure it won’t be the last. I am not trying to change the world, but I know when the Peanut was first born all I could find were positive people who were living their lives and I couldn’t relate. I needed to hear from someone who had felt like I had. Who acknowledged the low points.
Thanks to my sister and friends and some other internet strangers who stuck up for me, by the end of the day I was feeling better about the whole situation and read the negative words without taking them onboard.
The day didn’t get better from there. The facebook comments coincided with me taking the Peanut back into hospital. Not great timing. She has had a cold and cough for a couple of weeks and on Tuesday her cough started to worry me. I tried to see if we could get away with a simple GP visit but as I suspected, they sent me to the hospital to be checked out properly. When a baby like the Peanut gets sick, they don’t take any chances. It’s hospital or nothing. They checked her out and thankfully, because they’ve gotten to know her so well and know what her baseline looks like, said that she wasn’t too bad. We were admitted all the same just to keep an eye on her, but thankfully the doctors agreed with me that she was on the improve and they only kept us in for two nights. After the last admission taking two weeks, I had been prepared for a fight, but was very relieved they saw what I saw.
While the week started off poorly, this discharge from hospital turned it around and today it took a steep step upwards when the Peanut’s BLENNZ worker (Blind and low vision education network New Zealand) visited with a “little room” for the Peanut to explore (truth be told, it’s not that little and I have no idea where I am going to store it). The idea is that you put her in there with various things she can reach out and touch and she gets to explore on her own, learning about her affect on the world around her. I’m not supposed to talk to her or move things in the little room, which is incredibly hard to stick to, but I’m doing my best.
Here’s a clip of her first go in the little room. You can see she’s really liking it! The fake pearls seem to be a fave.
It’s so fantastic to see her interacting and exploring, and the other benefit is it keeps her occupied and I’m supposed to leave her to it and not interact with her, so I have a window of time to get a few things done! The Peanut can’t play in the same way as other babies her age, so it’s so nice to have something built for her that can keep her occupied and happy and stimulated.
So we went from vitriol and hospital admissions to exploring the little room in just a few days, and tomorrow the week will get even better when my brilliant big sister of the message above arrives in Wellington for a few days. She lives in Vancouver, so this visit is very exciting. She will get to meet her niece for the very first time and enjoy her old stomping ground for a few days.
This week has been interesting but we are ending on a high note.