Tuesday, October 21, 2014

A long, overdue, and bitterly honest post about baby

Deep inside me I have a secret. This miracle of life is a sacred secret that only God and I share – nobody else knows. Nobody else knows its kicks and tickles, when it sleeps and when it is awake. Nobody else knows the life giving joy that feeds my spirit just thinking about my secret or how I sit idle every night waiting…waiting…waiting…for any sign of stirring. Ben shares in my secret from time to time as he rests his hand on my belly, but even he, the man with whom I share everything, does not know our secret like I do.

This is not the first time I have carried a secret in my womb. I have had this joy twice before….but things are different this time…as they are different every time, I suppose. But as I catalogue the experience, the differences scream out like blinking neon signs. We didn’t know we were going to have a third. I suppose with the other two, we knew that there was the possibility, the twinkling, but unspoken and understated. This secret caught me totally off-guard. Unexpected.


As we sat, drinking wine, listening to the waves lap upon the shores of paradise, Ben mused about the idea of having more children. We hadn’t talked about it for two years…or more…I thought the conversation was finished. The last two years had been severely unkind and it would be irresponsible to bring a life into the world…into our dysfunctional situation. But for some reason, some inexplicable reason, that night, Ben concluded, partly to himself, partly to me, that another child might be nice.

Nice. I don’t know if that is grounds for creating life, but there we were. Perhaps, nice was the idea of conceiving life, not sustaining it…either way, as we talked…or he talked, I recalled the last week…then the last month…it wasn’t adding up. My mind started reeling. I counted; I scrutinized the calendar and my memory and into the next day until finally, I couldn’t stand it any more and sought out relief from my mental torment. One of the few times $15 can buy you peace of mind.

The same two faded pink lines that took my breath away over seven years ago.

Confusion.

Relief.


It didn’t feel like our regular rejuvenating escape. In fact, I think I came home more exhausted than when I left. This time, it didn’t take long. I never knew what morning sickness felt like until this past summer.

July 17th I wrote:

This one has been different…to say the least. They were all surprises, 
but this one caught me the most off-guard.

It’s been just 5 days since we found out and in the last 3 days I have had more nausea than I had in the first two combined. This morning it woke me at 4:30am and didn’t leave until I finally dragged myself out of bed. It is amazing how in just one short little pee on a stick you become so acutely aware of every sensation that goes through your body.

You also become acutely aware of what goes into your body.

It’s been just 5 days since we found out and we already have names picked out and know that we will find out what the gender is, (something we didn’t do with the first two.)

We are glad. I think we both knew we wanted more children but were always waiting for the right time…but the right time just never seemed to come. That being said we are also cautious and find ourselves caught in the tension of so desperately wanting to tell people but knowing that the risk of miscarriage is still great.


Here we are, roughly thirteen weeks later.
It would seem like this baby is a small glimmer in a darkened room.
The thought of it gives us joy, where joy is sparse.
The truth is, we won’t be able to care for this baby like we have cared for our first two. We cannot give it a home we own, or a room, or a bed.

Last week I wrote through tears:

Dear Baby,

I’m sorry. I am sorry that we aren’t ready for you. I am sorry that we can’t give you a room or a house or a solid place to land. I am sorry that your parents are such a wreck and I am sorry that your experience coming into this world will be so unlike that of your brother and sister. I am sorry that you will be the third child, whom nobody seems to care about or take an effort for and I am sorry that I don’t have the means to compensate for their apathy. Please know that I still love you. I still want the best for you and truly, if it were in my power, I would give you the best of everything. You would have a room, with a new bed, your name on the wall and a dresser waiting for you full of diapers and cute little outfits that people had bought for you. And you wouldn’t be surrounded by worry and despair, but joy, and peace, and hope and love. And no one would have reservations about you and we could just celebrate your being without being afraid that people are judging us. Baby, I love you and I for one, am glad that you are.


People often make having a baby out to be this purely joy-filled experience but sometimes, it’s hard. This time, it is hard.

But here is what I do know. While I can’t give my little secret, a room or a bed, I can give him or her a family. Tonight, I lay silently listening to Jakob gently and tenderly help Ella into her pajamas. Then he took her by the hand to pick a story from the bookshelf and led her back to their room where he read to her with all the expression and articulation of Ben or myself. When silence fell, I poked my head in. There he sat, in the chair where I find myself every night, beside her bed, holding her hand, just as I do every night. I kissed her forehead,

“Do you want Jakob to put you to bed?”

“Yeah”


And so I left the room.


Saturday, October 18, 2014

A New Addition

No, I'm not talking about the little peanut growing inside me - I am referring to a new addition to Ella's ever growing baby doll family. This baby doll however, is not like the others, this one is a Special Joy.


The truth is, I have a collection of dolls as well but not the kind you play with. My mother started buying them for me when I was young, as she too has a collection of porcelain dolls. Many of them...in fact, most of them are from the Ashton-Drake Galleries, so when Ashton-Drake approached me about reviewing their newest baby doll in honour of Down Syndrome Awareness month, I was beyond willing. This doll however, is unlike the dolls that live out most of their lives in cardboard boxes and glass cabinets. This was a doll for Ella.

Instead of being made out of fragile porcelain, this doll is vinyl and meant to be played with, loved, cuddled, kissed and carted around like many of Ella's dolls are on a regular basis. The doll however, still carries the carefully crafted details of many of my porcelain dolls including many features of Down Syndrome... Okay, disclaimer - when I opened the box, I thought to myself, this baby doesn't really look like it has Down Syndrome but then again, I often think the same thing about Ella. Because the reality is, each individual with Down Syndrome is still just that...an individual with their own beautiful traits, personalities and distinctive features that reflect their Mamas and Papas.

(Side-note: it's Saturday morning. My favourite time to write. Ella is beside me reading her books, as she usually does when I am working from my special home office [aka: my bed] and beside her is her baby. She carefully tucks her in and pulls the covers up to her chin. Priceless.)

So as I was saying, while the doll does not have the stereotypical face of Down Syndrome (which I appreciate) it does exhibit a slightly flattened bridge, palmer crease, small ears and a gap between the first and second toes. I also love the weight of this baby. It isn't like the £5 baby we bought from ASDA 3 years ago (the UK equivalent to Walmart). It feels like a real baby.

To Ella however, it is just a baby. Her baby. She doesn't care that it has those features. To her, it is just beautiful and a baby to be loved. I would like to thank Ashton-Drake for making such a beautiful doll and honouring the special joys in our lives. Please check out their online gallery at http://www.ashtondrake.com/aspecialjoy.


Unfortunately, at this time, "A Special Joy" as the doll is named, is not available in Canada. That being said, they have offered one to give away for free. But no matter, whether you live in Canada, the US or anywhere else in the world feel free to enter.

Just comment below, and you will be entered to win "A Special Joy" of your own. 

Share this post and let me know by leaving another comment making that two entries. 

I will leave the giveaway open until the end of National Down Syndrome Awareness Week in Canada, which is November 7th.

Please like, share and spread the word!!!

Oh, and Happy Down Syndrome Awareness Month!!


Thursday, October 9, 2014

A School Update: French Immersion for the Child with Down Syndrome

Nine – The amount of full days Ella has attended kindergarten.

Five – The number Ella counted up to unprompted, unaided en français at the breakfast table this morning.

Twelve – The pairs of panties I have washed in just 4 days.

Twenty – The amount of times Jakob says he takes Ella down the slide each day. (Not true... but this is the answer he gave when I asked tonight)

The past three weeks have been filled with so, so, so many victories… as well as some challenges. And when I say challenges, I truly do embrace them as just that – challenges: hurdles that we will conquer in time.

In short, school is going really well. Ella loves it. Jakob loves it.

How do I know they love it? I just do. Jakob was ready to go back and see his friends, especially after waiting out the month-long strike. He tells me that his favourite part of the day is reading and he can actually recall what he did in math. Friends, I take this as a victory.


As for Ella – she is always ready and eager to say good-bye in the morning when I drop her off. When I spy on her during the day, she looks like she is have a great time playing with new friends and at pick up she too, is excited to tell me about her day…even if I can’t understand her.

From the moment I met her teacher, I knew it would be a good fit. She is kind, nurturing and intuitive. She didn’t get defensive about the pile of literature I handed her just two days into school and was open to hearing about strategies for setting Ella up for success. Ella’s morning EA (Educational Assistant), on the other hand, I had reservations about. At first, she seemed quite distant and inexperienced. I found out later that she was used to working with Grade 6 and 7 students with Autism, which as you can guess, is a whole other ball game. That being said, her afternoon EA is also a perfect fit – nurturing but not, as she says, a Velcro-buddy. She knows when to stay close and when to give Ella some room.

Ella is a physical child. She needs physical affirmation when uncomfortable, tired, or just because. Her teacher told me that one day, Ella would spontaneously come up to her and just give her a hug. Ella needs to do that. She needs a hand to hold, a lap to sit on and to be held.

So let’s talk about some victories:

Ella is making friends. Her teacher read in class, the book that I had made entitled “This is Ella” and it was a hit. Apparently, the children were saying things like, “yeah, that is like me.” I noticed right away that she had indeed shared the book, as the next day at drop off, many of the kids were coming up and saying good morning to Ella. She was not ignored, she was not forgotten and she was not pointed at or ridiculed. I have seen her play with her new classmates both inside the classroom and out on the playground and it warms my heart. The nice thing about French Immersion is that the linguistic playing field is leveled. Ella is hard to understand…but then again, for most of these children, French is hard to understand. The teacher has helped this immensely by explaining, “It’s okay if you don’t understand. We are quiet and we listen.” It applies across the board.

Ella is learning the routine. She knows to go into class. Put her pochette in the bin at the door and then go and changer les souliers. She is understanding how the day works and between her aides, teacher and me, we are figuring out how to make their schedule work for Ella. For example, when she is over stimulated after coming in from lunch.


Ella is learning French. To be honest, we did not teach Ella any French before she started kindergarten – the reason being, we wanted to focus on English, as she will also need to be able to speak, read and write our native language. But just nine days into school and she has made amazing progress in her French vocabulary. She can clearly say Madame, Bonjour, Au revior, Merci…among other words. She can count to 5…something we previously had not worked with her on and when I asked her what sound an action represented she could quickly tell me along with the other action she had learned from the jolly phonics program. She is catching on quicker than I had ever imagined.

Everyone is on board. Yesterday we had a meeting…it was originally going to be just her aides, the teacher and the principal so that we could all get on the same page. I think however, the school board caught wind of the meeting and since Ella never had an intake meeting in the first place (because of the strike), they decided to join the party. So present at the meeting was the Inclusion consultant, the SLP, all three aides in the school, the principal, the resource teacher, Ella’s teacher, Ben and myself. No one really knew what was going on however, or what the agenda was so I went ahead and created a report to serve as a springboard for conversation. It included a personalized version of what we believe Ella’s strengths and weaknesses to be as well, a few goals and most importantly, our expectations of the school board and the school and, of course, what we feel our role as parents is. As it turned out, it was more of an introduction meeting chaired by the resource teacher but the report did serve as an appropriate replacement to the BC Centre for Abilities OT laden report (the OT was the only practitioner that actually took time to see Ella). What I took from the meeting however, is that everyone is on board. I was expecting some reservations or push back but there was none. Ella’s teacher raved about her progress thus far, and we were all focused on how to help Ella succeed.

As I said, however, there are also some challenges. We knew there would be. Isn’t there with every child? For Ella, I would say the biggest challenge centres around toileting. There has been a major regression in this area. I believe there are a number of factors at work here with the first and foremost being that everything is new. The building is new, the people are new, the toilets are new…and they are somewhat scary. Ella’s school is over 100 years old and I have a sneaking suspicion that the toilets haven’t been renovated lately. The bathroom is also not connected to the class, which is new for Ella as she has always had a bathroom in her classroom. I was hoping the toilet thing would be sorted out by now, but today,  after washing 12 pairs of panties since Saturday, I finally gave us all a rest and sent her in a pull up.

The other big challenge is getting Ella off the playground…I told the team, “I wish I had a strategy for you…but I don’t.” What kid wants to get off the playground and go back into the classroom?

And finally, we have the challenge of energy levels – not all day, but specifically after lunch, Ella crashes. Today was apparently better, but yesterday, Ella laid down on the floor and just wanted to have a rest. Unfortunately, there is no rest time in Ella’s class like there was in Jakob’s. They come in from lunch, sit and read a story and then they have their vocabulary game. But after an action-packed morning, Ella often needs to decompress or she becomes intolerable…by this I mean, floppy, languid, and does not want to do anything. I told her teacher and aide that at home she would play with her cars but we need to find something she can do that won’t disturb the other children. So today I sent her flash cards (for some reason, she likes to just go through them over and over).

So there you have it. School so far in a nutshell. I could go into more detail but it would seem this post is getting a little lengthy already - that being said, if you have suggestions for the challenges listed above I would be grateful.


Now friends, I am going to bed because this mama is beat.


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