Happy Halloween!

I learned years ago that holidays are not for Sarah. She does not like the commotion and the NOISE. This includes Halloween. It is not her thing. This includes even giving out candy. People knocking at the door are startling to her. She finds it unsettling and she gets cranky at times. So, happy halloween everyone, but there will be no costumes on this blog-lol. Yes, it's a bummer, cause I loved celebrating it with the boys as they grew up, it was lots of fun. And there were lots of photos and lots of candy to secretly rustle through after they went to bed :)
But those days are over and we are concentrating on the Tobii this week! Tomorrow the represenative is coming out to show me how to make communication squares, grids and pages. I have a lot of questions for him. Meanwhile, I am playing some of Sarah's favorite Youtube videos on it for her and she is mesmorized. She leans in REAL CLOSE to get a good look and is practicing touching it, which then turns the videos off and on. She is having a blast! I am so happy.

My sickie chickie

We are having a wonderfully quiet weekend while Sarah is feeling poorly. Yes, the weather is beautiful, crisp, shiny yellow and sweet smelling. But we prefer the comfort of the inside, surrounded by blankets, music and yummy snacks.

And, we get to do it all over again tomorrow! Pure bliss.

Spoke too soon

Yup, as soon as I posted that things were rolling along nicely, she gets sick. Isn't that always the way? It's a cold. Big deal, right? Well, for her it is a big deal, which means for me...very little sleep. Grrrr.
Colds for Sarah lead to problems. Problems such as vomiting, poor fluid intake, ear infections, and croupy coughs. Medications become essential, such as, antibiotics, steroids, tylenol, antihistamines and vicks. And let's not forget the vaporizor! And doctor visits!
So we are on day 3 of this lovely affair. Still gearing up. Such fun :)

Where did she get this cold? Most surely at the pediatricians where she had her checkup earlier this week! Of course! lol.

update

Sarah is running smoothly. LOL. No, the child cannot run, but all systems are running well. As in ticking right along. She just had a yearly checkup and a flu shot. The checkup was uneventful, mostly bringing the pediatrician up to speed on Sarah's chronic issues, which, thankfully are only simmering right now.
She's hanging at 69 pounds and that seems to be her final weight. As in, adult weight. As in, thank goodness that's all it is. Because we have to lift her. She looks good, slim but not to thin. No one is worried. She's 4'10" tall. She wears a size 11 toddler shoe. The rings she wears are meant for 'little girl' fingers. She has worn the same size shoes and rings for over 5 years now. She wears a gold bracelet that has fit her since she was 4. Still fits on those tiny wrists 10 years later.

My petite girl. With the not so petite teeth and hair. I don't even know what to say about her mane of loops and waves. She was blessed with abundance in that area. Interesting, huh? When she was little and my mom was alive, she would say that the hair was wearing the child. Ha!

Sarah's Mytobii has arrived. I have fooled with it a bit, but waiting for the rep from the company to come out and help me with the setup.

Sarah has discovered Sarah Brightman and Andrea Bocelli, the opera singers. I play their YouTube videos for her on the Mytobii and she loves them. She leans in real close and examines them as they sing. Very cute.

Her school yearly IEP is coming up. It will be interesting as the school is cutting everything possible. They don't do much for Sarah(my choice) but there are a couple of certain things that I want them to continue to provide for her. We shall see. I am not stressing over it. Things go as they are supposed to go. It's up to me how I respond to them.

Unless it is a medical issue, then I kind of freak out and have a hard time remembering that things go how they are supposed to and it is my choice how to respond. In this case, I respond with paralyzing anxiety where I become practically as sick as the child. (Any one of my children, actually). It is a problem. I become a mess. My friends and family are well aware-lol. I have no control over it and that is very frustrating.

Anyway...we are treading water here these days, which is a good thing!

Acceptance

In one of my online support groups there has been a recent discussion about having a life other than Rett syndrome. And how to do it. Parents had helpful suggestions and ideas for each other. Parenting a child with Rett Syndrome can be stressful. The girls(and a few boys) require a lot of care. Not only that, but it is also difficult to work with some school systems, insurances and doctors. The whole ball of wax can be overwhelming. Not to mention, time consuming. It is a full time job, for sure. People need to get away, take a break, somehow.

So I was reading everyone's emails over the course of a few days. They were supportive and encouraging. People were responding to each other and conversations were enlightening and inspiring. There is nothing better than an online support group if you have a child with special needs. Other parents are the best sources of information and assistance. Better than the doctors, better than the schools, better than the therapists...I have found. If I had given birth to Sarah 25 years ago, I would have felt so alone and lost. There is no other child like my Sarah around here. I would have had no one to talk to. No one to learn from. I would have been all by myself with this very unusual child. So I am grateful for the internet. For the other parents willing to share and listen, willing to give of their time and experiences.

But this time, I was reading this recent thread about 'life other than Rett" and I felt a bit lost. I couldn't relate. But lots of Rett parents could. After a while, I wondered if anyone out there was like me, so this was my email:

I just wanted to chime in here. I think there must be something wrong with me.....it seems like I am one of the few with a special needs child who is not stressed by it. Not at all. Isn't that strange?
I should be stressed! I am a single mom who lives paycheck to paycheck. She is my youngest child(14 years), her 2 older awesome brothers are in their 20s and are living their own lives now(as they should). So it's just me and my girl at home. And a crazy cat :)
I don't know. I am very happy. I am so grateful that she is alive, not in pain and enjoys her days. I work 4 evenings a week and school her at home. I cannot worry about the future. I simply enjoy her day to day. I just drink her in and it fuels me. My main worries are financial, nothing to do with my girl. I am very content with her just the way she is. I have no desire to change her. Odd, huh?
Yes, her needs are full care, full time, with a lot of appointments which are a pain, but at the end of the day we are home and happy to be there. I guess it comes down to the fact that I am quite aware that I could lose her unexpectedly at any time, so I treasure and memorize to heart every day I have with her.
We look forward to when the boys come home to visit. I chat with my girlfriends on the phone, sometimes getting together. I love to read. My daughter loves to take day trips so we do that, she loves restaurants and the mall, so do I!
Mostly, I am grateful. Grateful to have been given this exceptional jewel of a child, so different than most, so sweet. Her smiles make my days. I don't feel like I am missing anything 'out there', I notice that I am happier than most people. Life is short, goes by in the blink of an eye and it is all as it is meant to be.
Isn't that nauseating? I know. I know. I have been asked if I was ever angry, sad or frustrated with my daughter's (and subsequently my) situation. And the surprising answer is No. Never. I am simply thrilled to have her. Cause tomorrow I might not.
I think I am in the minority. Not sure what it's all about, but just wanted to throw it out there.

And surprisingly, there are a few parents like me. But then we wonder, with all this acceptance, are we too laid back for our girls? Are we pushing them enough? I have struggled with this thought occasionally over Sarah's 14 years. But what I have learned from Sarah is that I cannot push her. She does what she can and that's it folks! I give her theraputic riding, an eyegaze communication device, academic instruction, books to read and fun day trips. What she takes from these experiences is purely up to her. All I can do is offer with smiles. She is her own person who knows for sure that her mama loves her just, exactly, the way she is and I wouldn't change her for the world.

This she knows. I couldn't ask for more.

Sunday Funday

Today we went to Ptown. It was a brisk day with warm sun. My sister, Ali, came with us. We did the usual, strolling around, enjoying the sights, eating and cemetary visiting. Cemetaries are very interesting. Lots of stories there. Ptown has a very old one. In fact, it only has one, but the stones date way back. The pilgrims landed here first, you know. I could spend an entire day in a cemetary, especially an old one. That and libraries. I could spend an entire day there also. Which, now that I think of it, has a lot in common with a cemetary. Lots of reading stories in both places :)

Anyway...it was a nice day. Here are a few shots from the day.

Christmas

Life is funny. You just never know.

This morning I woke up feeling kinda sick. A little nauseous and a headache. Blah. Just out of sorts. Tired too. It was a long stressful night at work last night and I am feeling the effects this morning.

Sarah is sitting in her rocking chair next to me, watching her Barbie DVD, while I type. Suddenly, I hear Barbie singing a christmas song. And something stirs in my brain, something rises above my dreariness and I feel happy. Just happy. The bleakness ebbs and is replaced by a sliver of joy. Christmas. That's when the boys are home for a few days. That's when I am joyful and animated. Because they will be here. With us. I love that feeling. I love looking forward to it.

What's interesting is that for years and years growing up, it was well known in my family that I did not like Christmas. I could never put into words why, but I just didnt like it. I found it stressful and I felt anxious. Perhaps it is because when I was 10, I was very sick with a stomach ulcer, at Christmas time, and every year after that Christmas reminded me of how sick I had been...or perhaps it was that in high school I was unable to spend Christmas eves with my boyfriend because we were different religions and his parents wouldn't allow it. It's hard to say, but I did not like the Christmas season.

I remember when I had first had my oldest son, Jimmy. My mom said that now I would enjoy christmas because I had a child. Well, it was better, true, but I couldn't entirely shake the Christmas issue. Then came John, who was born the day after Christmas. I hoped that the combo of the holiday and my sweet boy's birthday every year would be the trick. Again, it helped, but not really. I went through the motions but the past was haunting me.

And Sarah came, the years marched in and out, Christmas was OK, but I just wasn't feeling it. Of course the kids loved it, we had family over, we did the decorations, made the cookies and cooked a turkey. It looked great on the outside but I felt sort of down on the inside.

And then Jimmy left for college. Far away. And I only saw him on holidays. And that was when everything changed. It was a weird feeling for me. I was LOOKING FORWARD to Christmas. At first I felt odd, I was anticipating the holiday like everyone else. I didn't really know how to do it. But each year I got a little better at it. The tree started going up earlier and staying up later. I bought some christmas cds. I put wreaths on the house. I started to think about what Christmas was all about. I felt joy. Jimmy was coming home!

Now with 2 boys arriving every year, I am practically ecstatic. Sometimes I pop in a Christmas CD during the year to 'borrow' the feeling for a few minutes.

So this morning, while feeling blah, I hear Barbie singing We Wish You a Merry Christmas and suddenly I feel better. Christmas is coming and so are my boys. Granted, it's still a few months away, but it IS coming. I feel a sparkle of joy and my headache backs off. So now, I'm going to get up and feed my girl, and think about snow and christmas lights.

Yay for Christmas! It's all about family. For me anyway. And I love it. Who ever would have thought? It took me 50 years to fully get here, I feel like I'm 5 years old, anticipating Christmas with clapped hands :)

"You are strong"

Am I? Am I strong?

My father says I am. My co-workers say I am. And they don't mean physically. Do I feel strong?

No.

My father means it in the general way, as in, he told my son "She is different and she is strong". My co-workers mean it in the way I care for Sarah. All I do with her and for her, I guess. The thing is, I find it such an odd statement. I am strong. Am I? I don't feel strong. Why do they think I am? It implies that taking care of Sarah is HARD, difficult.

Here's what I do feel. Confident. I feel confident. In the way I raise my children. All my children. I am good at it. I love doing it. Mothering. It has 'me' written all over it. I was meant to do it. And that includes any kind of child. At any age.

Enter Sarah Scott.

I am curious why taking good care of Sarah is seen as 'strong'. Would they do any different? Like, not take care of her? What would an 'unstrong' person do? Seriously, what would they not do? Feed her, change her, teach her, protect her, advocate for her?

I am well aware that it is intended as a compliment to me. That I have taken this challenging experience and done well with it, handled it, strongly. I think that's what they mean. But, I think what they really mean is that they aren't sure if they would be up to the task. But the piece they are missing and don't seem to understand is that it isn't a task, an experience or a hardship.

You don't need to be strong at all. You just need to love. That's it. Just love. For me anyway. The rest comes naturally with absolutely no effort.

Well...except for that 70 pound lift multiple times a day :) But according to the doctor she is keeping my back healthy and strong!

So, I guess that's what I want to share. It is a joy, a privilege. And children such as Sarah are a big positive, not a negative. You don't need to be strong to do it. Not at all. You just need to love her. And she makes that irresistably easy.

Period.

It's that easy, even for the weak:)