Parents I hate

Two days ago, I sat in a lovely cafe with a friend. We chatted over a shared plate of chips and salads. The meal was difficult enough for me since she had her baby the same week I did, and as the months tick by I see more obviously the developmental differences between the two girls. She is such a nice person and all she said were wonderful, encouraging things about my May; that, plus a plate of chips, made for a wonderful afternoon.

Then, the inevitable. The worst part about eating in lovely cafe in the middle of the day. The other mothers.

A Frenchwoman with her gorgeous blue-eyed child approached us. Her girl was about one-year old and tottered about the cafe holding on to her mother’s fingers. The girl was drawn to May’s buggy, where May lay sleeping. She peered over the edge of the buggy, pointed at May and squealed with delight.

“Sorry,” the woman said.

“It’s not a problem,” I said. I moved the buggy a bit so that her girl could see May better.

Then, the questions began. How old? What is your baby like? What does she do? In my head, I thanked May for being asleep so I didn’t have to watch this woman calculate silently what May should be doing now, but can’t.

“One-year? And, your baby is toddling all over the place,” my friend said with a complimentary smile to the Frenchwoman.

The woman rolled her eyes with the weariness only the mother of an over-achieving baby can muster. “Oh, it is terrible,” she said, “I never get a moment’s rest. She is always up and always walking. She never leaves me alone. It is awful. I’m always exhausted. I hate it.”

And, I hate parents like this. How can you take for granted the wondrous things your child does?

If May is able to walk and wants to do it all day long, it would be the greatest gift she could give me. If she is able, may I always be exhausted and always love it.

This week I’m… (swimming update)

Tonight in the bath, as soon as May lay back in her bath seat she let out a tentative kick of the water. She paused with a look of total (baby) concentration and then let out a thrilled chuckle; paused again, another kick, more chuckling.

I love these moments where I can almost see May connect up separate ideas. Pool… water… kicking. Bath… also water… kicking!

 

Small Steps School for Parents (update)

Small Steps contacted me to say that they don’t have a place for May. They didn’t explain why or if a place might open up. They did invite us to another one-off session late in January. Does this mean we are still being considered?  They did say “please rest assured that we are thinking of her.”

I’m not sure what “thinking” means. Is this a vague British-ism meaning “still considering her for a place”, or a vague British-ism for “we thought she was a very sweet child”?

I’m now in the strange situation that they may actually read my blog and see this, as they saw my original posting about them. So, if I can just add, I hope they don’t mind me quoting that tiny bit of a larger and very friendly email.

I could have asked them all the above personally rather than write it here. But, this post isn’t a plea for them to respond. Besides, they must have thought either 1) May wasn’t needy enough, 2) other children were more needy, or 3) there were not spaces available in the level class May requires.

Until I received the email, I don’t think I realized how much I’d pinned my hopes on a place. Sometimes May’s care, regardless of the professionalism of the experts, seems so haphazard. I see someone one week and then not again for three or four weeks. I do everything they ask, but do I do it effectively, long enough, frequently enough, in the correct alignment?

I never know. I can’t know. How can I keep track of everything? It is a lot of pressure to feel that I am by far the greatest influence over whether my daughter maximizes her potential.

Once a week, to surround myself with other mothers like myself, in that kind of instructive setting, would have done me as much good as May.

A waste of good trees

May received her first sight therapy session last week. Her eyes move in a coordinated fashion, she reacts to light and seems to focus, but there are all kinds of other skills involved in sight and May does not seem to have them all. My husband and I are concerned that she can not follow with her eyes. Maybe she has no depth perception. Or, maybe she is not identifying what she sees. We really do not know what the issue is.

The session was evaluative. May basically played with some toys that lit up. At the end of the session, I asked the therapist for some activities for May. She was kind enough to personally deliver materials to us later in the week.

This comprised a massive, activities journal and recommendations for sight-impaired children produced by the government called ‘Early Support: Helping every child succeed.’ When I say massive, I’m going to estimate the first volume to be about 100 pages, double-sided.

That may sound incredibly supportive to the average person, but for a parent traversing the exercises of several therapists’ advice every week, 100 double-sided pages is not nearly specific enough to support my daughter.

If I manage, between physio, OT, play therapy, swimming, brain scans and prescription hunting to read through this volume, here are some recommended suggestions to improve May’s sight:

“Talk to your baby while cuddling them… your voice and physical contact is reassuring.”

“Do things which get your baby to smile or chuckle.”

“Let your baby finger familiar objects that they come into contact with.”

I have spoken to May’s sight therapist today and asked her to please prepare some activities for next week  that are more specific to May’s needs. She is a very pleasant woman and did not seem surprised at my response to the materials. She said that these were government guidelines and that “most parents found them frustrating.”

I am trying to give her the benefit of the doubt, but I already feel my frustration brewing into something more like anger. What does she, or the government, think of parents such as myself if we are given materials that recommend we cuddle our babies? I am also concerned about her assessment of May’s sight, since the activities cover a multitude of skills she already, very obviously has, such as smiling.

It’s just not good enough.

This week I’m… swimming.

This story is a bit naughty. Last week, we had a lovely swim in the pool at my gym. I had never swam with May before and decided on a whim to try it out. But, I didn’t have any swimmer diapers.

Being the inventive genius I am, I wrapped her diaper in a plastic bag (legs inserted through holes I created) and then wrapped another diaper over that and another plastic bag. May looked like she had elephantiasis of the tush.

I thought, “There is no way they are going to let her in the pool like this.”

On the way in, an attendant ran up behind us. “Here it comes,” I thought, putting on my most innocent of expressions.

“Miss! Miss!” she cried, “Please, let me help you carry your car seat into the pool.”

This took me so by surprise I had to glance down before I remembered the car seat gripped in my hand. Car seats don’t fit in gym lockers. “Oh! Thank you!” I said.

She took the car seat and placed it next to the pool.

A second later, another attendant. “Miss! Miss!”

“Yes?” I said, turning around with anticipation.

“You left your blanket behind in the locker room.”

I smiled, “Thank you so much.”

This was followed by a dip in the pool with May: beaming smiles, lots of kicking and splashing and even some yummy, chlorinated water drunk.

She LOVED it.

Removing her from the pool was not so easy. She weighed about a half-a-ton. You may know what this genius inventor did not: diapers are absorbent. They had collected about half the water in the pool.

I’m taking her again tomorrow, this time with swimmers. The water supports her body and gives her a wonderful freedom of movement. And, she LOVES it.

Midwives by Chris Bohjalian

Why am I reading Midwives? Why, why, why would I, after being through all I have, in particular a 65-hour long labor, read a book about a midwife who, due to a maltitude of unfortunate circumstances, has a woman die during a delivery.

I must have some kind of demented need to torture myself. Sometimes, I read passages that physically chill me. Every day, I tell myself to put it down and then every night I pick it up. It is such a compelling read.

It goes to show how much I am not over my delivery. Some nights, the labor runs over and over again in my mind, like a movie-real. Moments click over. Scattered medical phrases. Waves of fear. My husband sitting, forever sitting on that chair near my bed.

The hospital is clearly convinced that it was not the delivery that caused May’s brain damage. They sat us in a conference room they had organized for the purpose, three weeks after May’s birth, to explain just that. Unlike many parents in this circumstance, they did not hide my records or May’s. They printed out every machine read out and I have a thick, manila folder underneath my bed burning with its contents, of which I never read.

I sway between total acceptance of the situation and storming the hospital demanding answers. There are on-going investigations of May, but not of the labor itself. And, there may never be an answer for either.

I don’t want to wrap myself up in pain and anger. I want to move forward.

Maybe that is why I keep reading Midwives. Maybe it is my small way of facing all this.

Thank you!

Thank you to everyone who has written in to me. Please forgive me if it takes a few days to get back to you. There was such a lovely outpouring of warmth towards our story.

In the meantime, business as usual on the blog! A new photo of May at a costume party last night and a more detailed entry tomorrow on how she is doing.

Guardian Article

Today, The Guardian publishes an article about May and I.

The manner in which they published it has really pleased me. I was concerned that the title or photo would showcase the misery of our situation.

I imagined a photo of us, our faces bent forward under the weight of our tragic lives, beneath a title reading something like, “The Ever-Suffering Life of the Brain-Damaged Baby” or “Pity This Poor Brain-Damaged Baby.”

Having re-read those gems, it’s probably a good thing I’m not a sub-editor for The Guardian.

Instead, the editor and photographer picked up on the positivity of the piece, and reflected the love and admiration I have for my amazing daughter.

I’m one proud Mama today.

Dear Small Steps School for Parents,

Dear Small Steps,

Please, please, please let my daughter join your amazing, special school.

Our Tiny Steps session yesterday was awesome. I loved the atmosphere of your school – how demanding you were of the children (and I mean that in the most positive of ways) while at the same time how much fun May had. She smiled and laughed her way through activities and stretches that, at home, I struggle to get her to do at all.

Your approach, that every single action of play should improve the physical and cognitive abilities of the children, is wonderful.

I understand now why spaces in your school are in such demand.

Please please please. Look, I’m begging. I have no shame.

Thank you,

Mama Lewis

 

Service has resumed

When May was first diagnosed, I assumed the major stresses of our lives would be emotional, as we faced her physical and mental challenges. The reality is that it is the administration of her care that has caused me the most anxiety.

In previous weeks, I spent hours, days sometimes, on the phone and in person, chasing up unusual prescription requests, appointments for tests that were never made, pushing for therapies to start and trying to reach various professionals influencing May’s care.

Last week, I reported about my meeting with the Boss. His response to my concerns was immediate and thorough. My faith in May’s care has increased ten-fold as a result. He is an amazing practitioner and I admire how relentless he is to find an answer to the how’s and why’s of May’s brain damage.

In addition, the team attached to May in the community have come through for May in a multitude of ways. As they grow to understand her needs, and ours as well, they now anticipating requests well in advance of her needing them. This is anything from ordering her special equipment – such as the Squibble playmat which we hadn’t even heard of before they had acquired it for us – to simple common sense forethought like an email I received from her physio today noting a clash in a scheduled appointment.

Perhaps they don’t realize how helpful and comforting it is to know that professionals are organizing, even the most simple or mundane of tasks. It can be very disconcerting to feel you are doing everything yourself, especially when facing something as extreme as brain damage. I am often overwhelmed with the magnitude of it all. It is a relief to know that others are looking out for May.