Too Big

I was informed a couple of weeks ago by a co-worker (female) that no one could tell that I’d lost 40 pounds because I wear my clothes so big and baggy.

I shrugged and figured, who cares? I mean, I know I’ve lost. I can tell. I feel so much better in my (baggy) clothes, that I don’t really care if she could tell I’ve lost.

But then a couple of days later, one of my aunts told me that I looked great, but then she added that I’d look even better in clothes that fit.

I told her I was wearing clothes that were two sizes smaller than the ones I’d worn just four months ago.

She sighed and said, “Honey, yes, but those clothes were too big too and you’ve just moved to smaller clothes that are too big.”

Which…whatever. I am not willing to cram my still largish body into tight clothes that pinch and bind and stretch over my still pudgy stomach.

No thank you.

This morning, though, I was getting dressed and even I was able to see (by looking in the mirror) that the shirt I’d put on was too big.

That’s a big deal. I’ve noticed my pants slowly getting too big and that’s why I’ve steadily moved down two sizes (sometimes three depending the pants/brand/time of day.) But my shirts have been pretty consistent. Yes, they’re a little looser but nothing so baggy that it looks terrible (to me. Ask my aunt or my coworker and they’d probably have a different opinion.)

That shirt this morning was definitely too big. I’m learning, slowly with many setbacks, that I really do look better in clothes that fit. They don’t have to be skin tight, but when they fit, they show how much smaller I really am. I think I might have to actually embrace the idea of wearing slightly tighter clothes these days. Tight? No. Fit? Sure, maybe. It could happen.

Take Her Home and Love Her

Did you know that most doctors, when they think about Cri du Chat syndrome, think that those affected will never speak, will never walk, will probably never be responsive and most often than not, will die at an early age?

We got lucky. The doctor who finally diagnosed Olivia didn’t tell us any of those things. In fact, she told us not to research the syndrome because the research is often more than 40 years old and is based on patients who had been institutionalized from infancy.

She pointed out that everyone does better at home, surrounded by family members who love them, who want the very best for them. She said that even a typical child, if she is put in a crib and never held, never spoken to, never sung to, never taught will obviously not do as well as a child who is taken home, held in loving arms, sung to, talked to, taught.

That’s what everyone needs. Human interaction, touch, gentleness, nurturing.

Olivia’s developmental pediatrician specializes in children with Down syndrome because there are very few (any?) doctors who specialize in 5p- syndrome in the world. We feel lucky to have this doctor. She understands that every syndrome has ranges. She understands and communicates with us the importance of not setting limits, not putting a cap on all that Olivia might be able to do.

We only have to see this doctor every two years because we’re so incredibly lucky that Olivia enjoys excellent health. But I will admit to being happy when our two year appointment is due because I get to go show Olivia off to this doctor who might not have saved Olivia’s life but did save my sanity.

The best advice this doctor gave me and my husband was to take our daughter home and continue to expect as much out of her as we expect out of her older, typical sister. She said that Olivia will need more time to do the things that Alyssa does but we should never believe that she won’t do those things.

She told us to let Olivia show us what she could do, let her be the one to set the limits if limits need to be set at all.

And she told us that people with Cri du Chat can live long, healthy lives. There isn’t anything in the research to show that Olivia shouldn’t have a normal lifespan. That missing part of her fifth chromosome isn’t something that takes twenty years off her life. She’s healthy, she’s strong, we provide her with activities that build and help maintain her muscles as much as her low tone will allow.

We took our daughter home the day we got her diagnosis and we loved her. We continued to meet with therapists who got her up and walking just two months after received the diagnosis. She talked just six months after she started walking. She ran a year later, chasing her sister and her cousin, Jaxon. Those two people, Alyssa and Jaxon have been instrumental in Olivia’s amazing confidence. They treat her like the little sister, the bigger cousin that she is. They don’t count chromosomes, they don’t care that she’s a little weaker than they are, they don’t care she might trip a little more often than they do. They love her, they laugh with her (and yes, at her sometimes). They wrestle with her without worrying they might hurt her.

They’ve toughened her up even as I sit on the sidelines and bit my tongue to keep from telling them to be careful with her. She’s just Olivia to them. She doesn’t have special needs, she’s not missing a single thing they care about.

For these things, I am eternally grateful.

Going Green

We are basking in the spring that has sprung around here. When I get to my mom’s each afternoon to pick up the girls they are sweaty and flushed from running around outside for the hour between when the bus drops them off and I get there to pick them up.

Tom feels like he’s mowed the lawn seventy two times in the past three weeks, that’s how fast our grass (read: dandelions) are growing these days.

He’s already put our garden in, with plans to cover it this coming weekend to protect against potential frost.

We planted my mother’s day weeping cherry tree in the front yard yesterday.

The girls and I made our first trip to the park last weekend, after the girls has spent most of the day in our backyard as Tom worked in the garden and I hung load after load of sheets and blankets on the line to dry.

Yes, we’re loving the green that has sprouted around here. My lilacs are on the verge of blooming, the apple trees will do the same in another week or so, we hope.

I love watching the girls bask in the beauty of a soft spring evening. Olivia runs up the slide (yes, up the slide. I let her do it at home but not at the park when there are other kids there trying to go down the slide) and I am amazed at how much she can do.

I watched Alyssa play with her toy dogs and horses last weekend and I’m so thrilled that in so many ways she still so little. I want her to hold tight to her childhood and keep puberty at pay just a little longer.

I’m hoping all this green and sunshine will wash away the latent grouchiness I find myself wallowing in. What is my problem? Sleepiness (thanks every so much, Liv)? Busyness? I have a bridal shower coming up in a few weeks that I’m hosting so I’m trying to clean my house, plan a menu, gather door prizes, etc. I don’t know. I do know that I’m trying hard to let it go, to see the beauty of the spring and the coming summer. It’s the very least I can do for myself and my family.

Awareness

This week is Cri du Chat awareness week. I don’t use the Cri du Chat title very often when talking about Olivia’s syndrome. I usually call it by the medical name of 5p- syndrome. Why? Because Cri du Chat mean, quite literally, Cry of the Cat. It describes one symptom of Olivia’s syndrome, a symptom that went away.

But most people know 5p- as Cri du Chat.

So yes, Olivia has Cri du Chat syndrome. She is missing part of her fifth chromosome, part on the short arm, the p part.

Most people have never heard of Cri du Chat. It only affect 1 out of 30,000 to 50,000 people. It comes with a variety of symptoms. Low birth weight, small head, low muscle tone, cat cry at birth, universal developmental delays and yes, mental retardation.

It’s hard for me to write that. It’s hard to read it. When Olivia was seen by a geneticist soon after her diagnosis when she was just over two years old, I sat and listened to this doctor list everything about Olivia. It was a very cold, very clinical visit.

When I got the report from the geneticist, it stated, in black and white, that mild to moderate mental retardation was likely.

I threw that report away.

Now, I know that just tossing a piece of paper in the garbage isn’t going to make the words go away. It isn’t going to take away the possibility of mental retardation out of the equation for Olivia, but I couldn’t have something like that laying around, even filed away in our home. Our home was a place where possibilities are endless, where Olivia was already proving doctors wrong and I wanted to keep that hope alive and not dwell on a single piece of paper that was sent from a doctor who was cold and clinical, who looked at Olivia like she was a science experiment rather than a person, a human being with feelings and potential lie everyone else.

Olivia was the first person this geneticist had seen with Cri du Chat. She’s likely going to be the only person any of her teachers or therapists ever come into contact with who has this syndrome. She’s teaching us all every single day, even as she learns herself.

It took over two years to get O’s diagnosis because she doesn’t have the facial features that are common in children with Cri du Chat.

People see her bright blue eyes, her curly blond hair, her wide smile and her contagious giggle. They might hear her soft, higher-than average voice, but they often think she’s just shy.

But Olivia is verbal, she’s mobile, she’s active, she’s smart. She often keeps things to herself until she masters them and then she’s off to show the world how amazing she is.

Early intervention is very important for babies born with Cri du Chat. They need to be shown how to do things that come naturally to typical children. Olivia had no instincts for sitting up, crawling or walking. But she has muscle memory and once she learns something, she doesn’t forget how to do it.

Most of all, children with Cri du Chat love. They love life, they love the people in their lives, they learn, they laugh. They are beautiful, loving children and adults who want nothing more than to share their love of life with those around them.

The Party

Olivia attended the party of one of her classmates this weekend. You know, the one where I had to call the mom and ask if it was okay if I stayed during the party. For the record, whenever I send out invitations to a child’s birthday party, I always put at the bottom of the invitation that parents are welcome to drop their children off or stay for the entire party. That right there saves calls like the one I had to make.

Ahem. Right. So the party.

When we got there, the birthday boy and his cousins were playing on the bounce house. The birthday boy, let’s call him Diego because that’s the name I wanted to use for him all freaking weekend, was thrilled to see Olivia. She…was not quite as thrilled to be there. She was intimidated by the cousins, children she’d never met and she wouldn’t set foot inside the bounce house even though it had a slide.

A slide!! She’d asked me for days if I thought Diego’s bounce house would have a slide. She was so excited about the prospect of a slide and yet, the actuality of a slide didn’t overcome her shyness around strangers.

Instead, she and I stood just outside the bounce house for twenty minutes, with me pushing her onto the outside edge of the bounce house, where she’d laugh and leap right back up to grab my hands again.

But then, twenty minutes after we arrived, the most wonderful thing happened. The only other girl in Olivia and Diego’s class arrived. We’ll call her Lucille. Lucille was late due to T-ball pictures but when she arrived, Olivia felt as if the scales had tipped in her favor. Suddenly, there were three classmates (Olivia included) and only two cousins so, yay! She informed me that maybe she’d just get in the bounce house and go down the slide just one time.

I told her that was a great idea, took her shoes off her and in she went. And…she didn’t come out until the party was over, an hour and a half later.

Yes!! Olivia and Lucille and Diego played and ran and the other kids beat the candy out of a piñata, everyone grabbed the candy off the ground. Even Olivia exited the bounce house long enough to get some candy and eat a little cake.

I was really proud of her. She played alongside her classmates. I’m not sure she interacted with them a lot but she was right there, playing where they were playing, laughing with them, maybe not talking to them a lot but definitely answering questions and having a blast.

She was so tired when we got home. But it was a good tired, a well-earned tired.

She made me proud. But then, she usually does.

His First Time

Although yesterday’s IEP meeting wasn’t my first, it was Tom’s. In the past he’s opted out of the meetings, trusting me to go and represent our family.

As I was packing lunches yesterday, I casually mentioned that I’d be at the school at 2:00 if he wanted to join me. He told me he trusted me to take care of it.

I thought that was what he’d say.

But as I drove toward the school at 1:40 later that day, he called me and asked where I was. I told him and he said he’d meet me at the school.

I was glad for the support. I was glad for his input when the teachers asked questions or made statements about Olivia.

It was nice to show up as a united team, both of us there for Olivia, both of us with our own experiences with her.

Since Tom is the one who is home with her each morning before school he has a unique point of view. Olivia doesn’t respond to him as well as she does to me. So he gets a bit more of the ‘deliberation’ from her, similar to what her teachers experience.

See, I am Olivia’s very favorite person in the whole world. She would choose me over any other person if given that choice. So…she talks to me. She makes her wants and needs known to me more so than she does to anyone else, including her dad.

I think it was good for her teachers/therapists to meet him, to hear how he responds to her and how he get responses from her. I was so glad that he decided to join me at the school.

I’m not sure he plans to ever do it again but I’m grateful for this year’s participation.

I for Independence

So I’ve been to, let’s see…about eight IEP meetings. I sit, I listen to them tell me who Olivia is during the hours that I’m not with her. I nod and agree with a lot of their statements, qualifying comments in areas where I feel they might not be quite right.

I’ve gotten good at playing the concerned mother, the advocate, the one who wants the very best for her child. Obviously, I am a concerned mother, an advocate for my child as she struggles to find her own voice and I definitely want what is best for Olivia.

But at times, these meetings feel like a waste of my time. I feel like I’m pulled in because they have to meet with me. They don’t really want my input, they don’t really care what she can do at home because, well, she won’t do those things at school and they can’t grade/rate her on what she won’t show them.

And I understand their frustration with my child. Hell, I felt it myself last night as she wriggled and turned and poked at me as she fought falling asleep. I know how stubborn she can be. I know she often pauses, seems to be deliberately refusing to do something, defying me or whomever else is in authority at that moment.

But understanding frustration doesn’t mean I think they’re right about Olivia’s deliberation. None of us really knows how her mind works. We don’t know how she processes information or requests. We don’t know if she’s being stubborn or if she’s just thinking really, really hard.

These women are good people. They really do want what I want. We all want Olivia to succeed at school. We want to push her just enough to get her to reach her potential but not so much that she’s overwhelmed and shuts down.

But to them Olivia is a job. I know this and I understand it. I just hope they know and understand that to me, she’s a way of life. She’s my baby, my heart. I worry about her at a near constant level. I worry about today, tomorrow, next year, the next decade. I worry every single time I get in the car that I might die and who will love her as much as I do? Who will rub her back and let her take long, hot baths? Who will listen to her as she tries to get her thoughts out of her head and into the world around her? Who?

I also worry about lunch next year as a kindergartener. I know this sounds so silly but Olivia will not be able to carry a lunch tray. And she might not eat what I pack for her and then she’ll be hungry! I know how silly that is in the grand scheme of things but it’s a worry that’s been nagging at me.

There will be an aide in the kindergarten class next year. But I was told in the meeting yesterday that this aide is not there exclusively for Olivia. This was made very clear by the principal. I get it. O will have help but she won’t have someone who is there just for her.

I worry I coddle her too much too. I mean, so she’s hungry for a couple of days during the beginning of school because she got distracted and didn’t eat as well as she does at home when she has a parent sitting next to her, cajoling her to eat or hell, even feeding her bites of her food until it’s gone. I should step back, out of my own worry and think that this might be a good thing. She might learn from the hunger of the first few days and learn to eat her lunch on her own, without help, without someone looking over her shoulder making sure she’s eating.

This is her chance to be independent, to show us how much she can do without help. I want that independence for her so, so much. I want her to prove us all wrong.

My problem is that I don’t want her to suffer was she’s gaining that independence. I know we all have to learn and grow at our own pace and make our own mistakes and I know this is true even for my girl. But it’s so hard to watch her walk away and know that I can’t make everything easy for her, right for her. I can’t make her mistakes for her and suffer her pain.

She has to do it all herself, because that’s what independence is.

The main goal of her IEP is for Olivia to learn to voice her wants and needs in a clear, audible voice. Isn’t that the goal for everyone? Don’t we all just want our kids to be able to stand up for themselves, make their wants and needs heard?