Walking by Faith

On Fridays, Sadie and I go to the Foundation for Blind Children where they have an infant program. It's 2 hours, from 9-11. For the first hour they set up stations for the kids to experience different things with their hands, there's usually a station with a story, something sensory, etc. then they do music therapy all together in a circle. The second hour the parents get to break off and have a meeting by themselves. This is really why I go.

Sometimes in the parent meeting there are guest speakers, sometimes we learn something related to a vision impairment, sometimes we just talk. Today, we talked. As we went around the table and told about our children and their diagnosis, we were supposed to share something we like about parent meetings and something we'd like to see more of (or less of). It was mentioned many times that we'd like to have some more time to just talk to each other. The thing about Friday mornings is that every minute is used for something. So, if want to just talk to Lara about how we found a respite person, I'd have to stand outside at the end, while both of us hold our children (mine usually screaming) and have the conversation there. It's not ideal.

Once this was brought up (by me, of course), lots of ideas were thrown out: having a shorter music time and a longer meeting, going until 11:15, starting a parent resource group on Facebook, or having a potluck day on a Saturday or something where we can come and just hang out and let our kids play. This last idea is what I want to talk about.



I love coming to The Foundation for Blind Children because there is so much diversity among children. Some only have a visual impairment and are otherwise developing normally, others are like Sadie and have multiple things going on, which usually stem from some kind of birth trauma. Going there was the first time I had really had the opportunity to be around other children with CP, to see how they acted, what their development was like, and to talk to their parents. I came looking for hope, and it's what I find every week when I go. Because Sadie is one of the youngest children who attend, I have the advantage of hearing other parents say, "if we had started when he/she was Sadie's age..." I can see Maddie at 20 months using her hands more and rolling, I can see Ceagan, at 7 months sitting unassisted, and I can see Camilla at 21 months participating in music therapy. And these give me hope for Sadie. But I also see Abbe's mom smiling and playing with her during centers. And I hear Aaliyah's mom talk aout all the new therapy equipment they just got that they're excited to try. I see the joy and love Camilla's mom showers onto everybody because Camilla is her SECOND kid who's been through the program. And these moms give me hope for myself.

Once it was brought up that we could all get together outside of Friday mornings and let our kids play while we talk, one mom spoke up with something I never expected to hear. She said she'd love to do something like this, but sometimes she feels bad that her child's only impairment is visual. She made it clear that nobody has ever made her feel this way, just sometimes she looks at her otherwise perfectly healthy, normal child and is sad for those of us dealing with multiple diagnoses. And after a number of other moms spoke about this and gave their perspectives, I put in my two cents worth.

I told them that I've had my share of jealousy, especially when I go to the grocery store, but that I have never felt jealous of anybody at Friday program. I told them that I love hearing about the things their children are doing or the great things the doctor told them, and it doesn't feel like they're rubbing anything in, because someday I hope it's me talking about those same great things. When I hear it, it gives me hope because I think that if your child can do it, so can mine! I told them that despite your childs impairment, we're all in the same "club" and we've all got our issues to deal with whether it's just a visual impairment or it's multiple life threatening diagnoses. There was a new mom and baby this morning and I spent much of music watching them (because Sadie and I were in the rocking chair napping instead of singing) and I was amazed at how much fun she was having and how well she was doing, and cute she is! And after learning her story that she is a surviving twin, born at 24 weeks with severe brain hemorrhaging, I was even more impressed. But she had a feeding tube, so I know it isn't all rainbows and unicorns in their lives either, so I'm not jealous...not even one bit.

Here's what it comes down to: None of us know what the future holds for our children whether they are perfectly normal and healthy or struggle with severe disabilities. It's just that those of us who have children with special needs might wear our worry more on the outside where everyone else can see it. As parents, we have to walk each day by faith, knowing that God has our children in His hands. And we have to know that no matter what our child may or may not be, it's still our responsibility to be the best parents we can. God gave us to our children because He knew we'd be the perfect parents for them. I also think that whatever the future holds, it's important to remember the good in our own child and instead of focusing on the car screaming and the constant bouncing. So I think about that Sadie can suck on a pacifier, she can sleep all night, and she has a beautiful smile that can light up a room. And that's really why I love the Friday program, because I see ALL of us parents doing exactly that.

Today Sadie was a SuperModel

Today, Sadie and I went to PCH to take some publicity pictures. They are re-doing a lot of their marketing (I'm assuming because of the new building they just built), so they've spent the last couple of weeks taking pictures of kids with doctors and in different places in the hospital. We were originally supposed to be taking pictures in the cardio department with a doctor there, but, like with anything, plans changed.

So instead, we just stood there and looked pretty while they snapped away.

Sadie DESPERATELY needed a nap when we got there, and she fell asleep immediately. I actually had to wake her up to take pictures. And in typical Sadie fashion, she was happy and smiley as soon as she woke up.

Unfortunately, we probably won't get to see these pictures until the spring. But, I will make sure I show them to everyone! Or who knows, if you live in Phoenix, maybe you'll see us on a billboard or the side of a bus telling how great PCH is!

Respite, take one

We had our first interview for a respite person today. It's kind of a big deal because while I am really eager to get this going and have help, I also want the right person to be in my house and alone with my child. I'm sure you understand.

I had a list of questions prepared. Things like, if Sadie screamed for hours and hours and you couldn't get her to stop, what would you do? Or, What is your experience with children? With special needs children? I wanted to know her feelings on cloth diapers, and if she was okay helping with chores, is she allergic to cats? And can she drive a stck shift?...because my car is a stick and that's the one with the baby seat. I also wanted to make sure she is physically able to bounce Sadie on the ball, take her for walks in the stroller, and play with her on the floor.

At 1:30, Zahira (pronounced "Cida") rang my doorbell. She wasn't what I was expecting, but ended up being so much more!

We talked for a little bit, I asked her some questions, she seemed to have all the right answers, I learned that she's 20, and going to school to be a behavioral health counselor. She's worked since she was 16 taking care of disabled adults and children. Right now she mainly works with an after school daycare for boys with behavioral special needs (she said many of them are autistic).

Then I handed her Sadie and that's when the magic started to happen. It was love at first sight...for both of them. Soon Zahira was on the ball, and Sadie was asleep in her arms, with the pacifier. Sadie loved every second of it, and when she woke up, she thanked Zahira with one of those magical smiles.

The best thing about Zahira is that she was willing to do anything. She said she doesn't know how to drive a stick, but was willing to learn. She had no experience with cloth diapers, but wanted to learn to sew so she could help me make them (and to know how to sew). She said she likes to clean and would definitely help with housework. And she was very flexible with her schedule, she even said she would come over on the weekend so Brian and I could go on a date!

Once Sadie was awake, Zahira changed her diaper, then they played on the floor together with Sadie's toys. She sang to her and kissed her and loved on her a lot. She was like an instant member of the family. She told me she has 7 sisters (no boys!!) and 16 nieces and nephews, so she really likes babies...and it was obvious.

I have another person to interview tomorrow, but I think I already know I want Zahira.

The thing about the paci is...

I love that Sadie will now take a pacifier. It's made so many things so much easier. But the thing about the paci is that she's not real good at it. She'll suck on it, but often you have to hold it in her mouth or she'll inevitably spit it out. This isn't a big deal if she's sound asleep...but if she's not she'll wake up immediately when she realizes there's nothing in her mouth to suck on.

Usually by this age, actually way before this age, babies have enough dexterity that they can put the paci back in their mouth. That would be nice, I could lay her down in her bed, she could grab the paci and stick it in her mouth and suck herself to sleep...maybe someday, but not yet.

So, am I a bad mom that I want to rig up some device to keep the paci in her mouth? A friend told me that when she would swaddle her babies when they were real little, she would just wrap the swaddler thing over their mouth to hold the paci in. So, I'm not crazy...or the first mom to consider something like this. I got the idea the other night when I laid Sadie on the couch and kind of angled her downward, putting a pillow up against the paci to keep it in her mouth, she fell right asleep.

I was thinking some kind of elastic that's not real tight, so that it can fall out if her mouth is agape with sleep, but tight enough to keep it in there so she'll stay asleep. This would eliminate the need for me to sleep with one hand against her face at night so she'll keep sucking. Is this dangerous? Should I just tough it out? I am desperate. Any other ideas?

UPDATE: I did it, and it sorta works...at night. It didn't work too well at nap time once she realized I wasn't there she woke up. But she did nap for 10-15 minutes! See?


We'll keep working on it!

A New Way to Bounce

We found a crack in the bouncy chair.
I'll let that settle in for a moment.

...

This means it's just a matter of time until we are at that crossroad again: do we buy another bouncy chair or search for an alternative? This one was supposed to be transitional, only a fall-back while we learn a new way to stimulate her vestibular. But she hates the swing we bought. I think it's going to have to be like learning to drive a stick shift...you're not gonna really do it until it's your only option.

However, tonight the bouncy chair wasn't doing it for her, actually nothing was. So, I sat on the big yoga ball with Sadie on my lap and bounced that way. Soon she calmed down and I was able to put the paci in her mouth and bounce her to sleep. I got this idea from my littlest brother, who successfully put Sadie back to sleep the other day while bouncing on the ball.

The goods of this: she'll have quite a while to grow out of it. Hopefully in a couple of years she'll be able to do it herself.

The bads of this: whoever is bouncing her can't really do anything else until she falls asleep.

Now I know what to ask when interviewing people for respite care: "How do you feel about strengthening your core while you're here?"

1-1-11

It's the beginning of a new year and Sadie started it out well! After a good night's sleep, Sadie spent much of the day eating, entertaining herself on the floor and napping. There was only a little crying, but it came with poop...how's that for a silver lining? She even managed to suck a half ounce or so of water out of the bottle! This is our big goal right now that we're working on daily. That she can do it at all is HUGE progress.

Because Sadie required so little maintenance (except that she still needs to be held when napping) I was able to make bagels, greek flat bread pitas, and some hummus to dip them in! I really enjoy my new mixer I got for Christmas...now I need to figure out who to give my bread maker to, since I no longer need it or use it! I'm starting to think having a disabled child has its blessings, since I can still lay Sadie down on the floor and she stays there, I am able to do more than I might if I spent all day chasing her around the house! As much as I want her to be mobile, I will appreciate the convenience her immobility is for now.

I also bought Sadie a birthday present today, it's probably the only thing she'll get from me (besides her party). It's a shirt with a 1 appliqued onto it. The idea is that she'll get one for her birthday every year to take a picture in...maybe next year I'll be organized enough to make it myself instead of spending $11! You should check out this lady's etsy shop, she has some fun stuff. Trisha B. Designs I love etsy. I also bought a birthday banner from her...something else I didn't get around to making! At least I'm organized enough to get these things at all in time for her first birthday! Some people manage to take pictures of their babies every month and write down every first in their baby books. I have a baby book, that's about it. And if I can get her picture taken every year in a shirt with her age on it, I'll consider it success!

Sadie's first New Year's Eve

Last night we participated in Midnight Madness. And madness was really what it was. I found this 3 mile race to run on New Years Eve months ago when I was looking for races to enter to prepare for my half marathon. I always planned on doing it. But then there was talk of Brian having to work on New Years...in Vegas. So, I called my friend and asked if she wanted to walk the course with me, after all, it said dogs and strollers welcome! We got it in our heads that we were going to do this. Then Brian's plans changed and he was going to be here after all...and we invited our husbands.

This was before we knew it was going to be the COLDEST week in Phoenix EVER!! Seriously, down to the 20s in the night, barely getting to 50 during the day. It's like we never left Oregon...except that it's dry. But if there were any kind of moisture, it would probably snow. How weird would that be?! Snow in Phoenix?! We majorly layered Sadie up: a onesie with socks up to her thighs, fleece footie jammies, pants and a sweatshirt, a fleece coat and mittens. She was still cold. One thing I learned though is that the weighted blanket actually makes you COLDER if it's cold outside, because it's filled with glass beads. So, those get cold and make the fabric cold. Good thing we brought a different blanket also!

Anyway, the race didn't start until 10:30. Sadie whined for about the first mile, then the screaming started. She was cold and tired (and she can't just fall asleep in her stroller...how I long for the day she is able to put herself to sleep!) and she wasn't having ANY of this 3 miles of walking business! So, we finally just ditched our friends and started running. Then I carried her for the last half mile or so.

When we finally reached the finish line, I held her tight, put the pacifier in her mouth, and she was out in seconds. Silly baby. On the way home, I sat in the back with her and held the pacifier in her mouth (she's still learning how to keep it in there herself), and she fell back asleep. It was nice that she was so tired because when we got home, we were all able to just go to bed...no hours of bouncing and nursing trying to get her to sleep. And I held her tight under the covers because the poor thing was SO COLD!