The Question

I did a few post awhile back about typical questions we get in regards to Bella.  Of course one of the most popular questions is "How is Bella doing?"

Well that one is kind of boring for me to answer.  Besides commenting on whether she is currently sick or not, sleeping or not, etc.  Nothing much changes.  I thought I would give you an idea of what I mean.

This first video is of Bella when she is 1 1/2 years old.  How you see her acting and talking, is pretty much the same thing she is capable of to this date.  And it's now 5 years later.

This second video I have posted before, but is the most recent video of Bella talking and laughing.  

So yes, Bella is doing alright, but what you see right now is pretty much what I assume Bella will be for the rest of her life.  Of course she does have minor developments and I have talked about them before.  But unless you ask me two years from now how she is doing, there really isn't too much to report.

Kindergarten is Over

Bella finished up Kindergarten.  It’s a school tradition that the kindergarten class and their families go to Deanna Rose Farmstead for a field trip picnic during the last week of school.

Bella had the smallest class.  I think there were under 10 students, while the full day class and the morning class had over 20 students.

Bella’s last day of Kindergarten I tried to get some pictures to compare from her first day.  She wasn’t really cooperating.

I put her in the same outfit on purpose.  I think maybe her face has gotten a little longer/less round.  Otherwise it’s really hard to tell any difference.

We really enjoyed Bella’s Kindergarten experience.  Now how to keep us occupied over the summer!

Inclusion

It’s been awhile since I have written about the kids.  Beyond the fact that we have been busy battling colds/flu constantly, life has been going on.

Bella’s school works on the inclusion policy.  They try to include Bella in all activities that she can possibly participate in, and they probably include her in more than she can really comprehend.  In truth Bella just watches life happen around her.  In order for her to participate in anything she needs an adult to make that happen.  We are lucky that at school she has an adult with her at all times that pushes her to do things and be a part of things.  The kids in her kindergarten class are also doing a great job seeing her as a part of their class, even though she isn’t in the room full time.

Bella got invited to a birthday party for girls in her kindergarten class.  She has been invited to parties before and I always decline them.  This time around I really debated on what to do.  The school makes such an effort to include her and the kids do such a good job seeing her as one of them. 

I’m not sure if the girls asked their mom to invite Bella, or if their mom wanted to invite all the girls in the class, but if I want Bella to be seen as someone who could be a friend, then I need to have her participate outside of class.

That would all make you think that saying yes to the party would be an easy decision…..except as I said, in order for Bella to participate in anything she needs an adult to make it happen.  The party happened to be in the evening after school.  Generally Bella is really tired after a full day of school, and Bella likes to be winding down and going to bed around 7pm.  The party would only be halfway over at that point.  Plus we already had plans that evening we would have to cancel in order for me to take her to the party.

And logistically, I had never been to this person’s house.  I would have no idea if they could accommodate Bella’s wheelchair or have an area that she could lay down, or a place I could try to hold her.  I wouldn’t really know anyone there either, and Bella can’t really help with that part, she wouldn’t really interact with the girls there, she would be watching for the most part.

In the end I regretfully declined the invitation.  At some point I know I need to step it up and help Bella get included in activities, but it still seems like an impossible task, and a lot of hard work on my part.  I really just wish I knew whether she would enjoy the hard work put forth to include her or not?

Children’s Programs

I know I have mentioned this before, how weepy eyed I become whenever I watch any children’s program.  This time I am specifically talking about the Children's program that we watched at church the other night.

This time around it was a little different as my emotions were pulled in two different directions.

Half the time I was thinking that Bella should be up there, she should be able to enjoy putting on a Christmas program for her family and friends.  Would she be the child that was shy and just standing up there?  Would she be the child that was constantly waving at her parents the whole time?  Would she be the child that was proud of herself and singing every word and doing every action?

The other half of the time I was thinking that Oliver would be up there signing next year.  And the songs were simple and cute enough, I knew that if he had been up there this year he would already know all the words and actions.  He does pretty well with memorizing kids songs.

But pretty much the whole time I had tears in my eyes, just ready to spill over as I kept telling myself “Get it together Kristen, there is no reason to cry”.  “Eyes, dry yourself out, there is no reason to cry”.

I wonder if it will ever get easier.  I wonder what will happen next year when I am watching my son, starting to do all the things I wanted my daughter to be able to do.

School Carnival Time

This weekend Bella’s school had a fundraiser, a school carnival.  We were also in charge of watching the class pet, a stuffed frog named Tad.

Bella enjoyed showing Tad all her favorite toys.

They became good friends.

Bella and Oliver have been enjoying “Despicable Me”, we are currently borrowing it, but I’m thinking it needs to be added to our collection.

I made pumpkin pancakes while Bella and Tad supervised.

Then we headed over to the school carnival.

Oliver really wanted to go down the big slide, but the poor kid couldn’t make it up the stairs.  He tried a total of 5 times to get up, but in the end he had to settle for the plain moon bounce.

Bella also got to enjoy the moon bounce.  She wouldn’t smile for the camera, but she was definitely smiling while being bounced around.

Both Bella and Oliver got their faces painted.

Bella also did the cake walk and won a cake.  Then we headed down to the cafeteria for some carnival food.  Bella and Tad had to watch, as there was nothing for them to eat.

They were so exhausted from the busy morning they ended up taking a nap as Jesse and I watched the football game.

It was a good weekend, but I think Tad realized he spent a lot of the time upside down!

October Roundup

I thought I would post any pictures we took in October that I never got around to blogging about.

I made these pretzel rolls from scratch….delicious.  Recipe Here.

We did sneak in one pumpkin carving time for Father and Son.

Bella had picture day at school.  She wouldn’t hold her head up for me, so I’m pretty sure the class picture is going to have Bella with her head down !

Bella also had her first Dentist visit this past month where they actually cleaned her teeth.  We finally went to a special dentist that just got in her mouth and did what needed to be done.  Bella actually did a great job and I think because we were there for almost 2 hours towards the end she was getting very cranky and did start crying, otherwise if we could have kept it shorter (less waiting around) it would have been a huge success.

She did get a balloon for her troubles, and cracked me up that she held it the whole ride home (doesn’t happen very often).

We also took a short trip to Minnesota and the kids went to grandmas…post coming soon.

Field Trip–Pumpkin Patch

I joined Bella’s class for a filed trip last week.  We headed to a local pumpkin patch.  At the pumpkin patch there really isn’t much that Bella can do.  I did carry her on the wagon ride so she could experience that, and then had to carry her around for about 20 minutes while all the kids picked out pumpkins.  One of Bella’s kindergarten friends picked a pumpkin for her.  And I even got a couple offers from teachers, parents, who would carry Bella for me if she was getting to heavy.

After our ride back on the wagon, Bella got back into her wheelchair.  I wanted to take her to the giant bouncing pumpkin, as I thought that was the activity she could do and would enjoy the most.  As Bella and I wondered over to the bouncing pumpkin, many little kids would pop out of whatever activity they were doing to say “Hi Bella”.  If a parent was around they would usually say “Oh, this is the Bella we have been hearing so much about”.  One mother even said they had prayed for Bella one week when Bella was out sick for a couple of days.  These were kids/parents that are not even in Bella’s actual Kindergarten class they were in the morning class, or full day class.  Bella is pretty well known around the school.  And I can’t say enough how grateful we are to be in this great community.

Bella and all her girl classmates at the Pumpkin patch.

Bella’s afternoon Kindergarten class and teacher at the Pumpkin patch.

I think Bella had a good time and it was a gorgeous day.  She did in fact enjoy bouncing on the giant pumpkin, lots of smiles!  The next day my arms were super sore and I couldn’t figure out why, until I remembered I carried her around for 20-30 minutes.

Bella Bella Bella

I got yelled at the other day.  Well I didn’t really get yelled out, but I felt like a little kid getting a lecture.  I wasn’t making Bella wear her orthotics as often as I should.  She is supposed to wear them every day all day long.  Yeah, I wasn’t even coming close.  Now with her back brace, she should also be wearing that every minute that she is awake.  Again I fail.  It just looks so uncomfortable.

I do realize that having messed up muscles/bones, is way worse than wearing the braces.  But I’m not sure Bella understands that.

On most morning I do make her wear her brace to school.  Except when she looks sick and decides to have coughing attacks while wearing it.  Then I go ahead and let her off the hook. 

And every day for school I send her in her shoe orthotics. 

Since she should be wearing them everyday, this year Bella and I went shopping with the orthotics on and finally found some shoes she can wear over them.

I’m excited the weather is getting colder and we can break out the new boots.  You can’t even see she is wearing the orthotics under her boots.

Do you notice how it looks like her head is slumped into her shoulders?  That’s because she has the back brace on, which does a great job of holding her upper body upright, but then her little neck just disappears because she refuses to use it.  So Bella pretty much looks like she is wearing football pads under her clothes.

I think she would grow 3 inches or so if she would just use her neck.

She does her best to not look at me while I am trying to take pictures.

She is actually wearing the white tunic I made for her a couple of weeks ago.  As you can see, I ended up pairing it with some leopard skinny jeans.  Love the skinny jeans on the little girl with no legs…only skin and bone on this kid. 

What defines you?

I really tried to hold off as long as I could.  I feel like half the time on this blog I am talking about sickness (in my defense more than half the time someone is sick), but I really didn’t want to keep having to bring it up.

Jesse mentioned last week that Oliver was sick.  And boy was Oliver sick.  I would say this was the first time in his life he really battled something stronger than a weak cold.  He was out of service for 8 days, out of school for 5 1/2 days, had a fever for 6 days, went to the doctor twice and the hospital once (for a chest x-ray – came out inconclusive).  We had plans to head to Nebraska last weekend for some fun Mom and Dad time while the kids stayed with grandma.  Except everyone was still too sick to go.

I waited all week and finally last Friday at noon came the dreaded call from Bella’s school, the one that said “Bella’s sick she needs to go home”.  And then Friday night I started to get a fever.  The weekend was alright, kids were still sick, we took it easy and they napped a lot.  But for the past 10 days Jesse and I have not been getting much sleep as it’s a constant rotation to help the child that can’t stop coughing, crying, or has a temperature.

Oliver’s first full day back at school was today.  Bella was out of school yesterday and ended up coming home early again today.  And again tonight, I am getting a fever and burning up.

So I’m tired, sick, feverish, emotional, and my body just aches.  I need help.  Isn’t that what we are supposed to do…ask God when we need help.  When we get to the point we throw up our arms because we can’t fight anymore…and ask for help.  This is me asking for help.

I started reading a new book today.  It’s a young adult fiction book, and I am finding it a great read.  They are turning it into a movie soon.   It’s called "The Fault in Our Stars".

I’m not sure if it’s because I am emotional and tired right now, but I am finding that this book is bringing me to tears at points, and I am finding similarities between the main character and myself.

The main character is a 16 year old girl who is fighting/surviving cancer.  It was thyroid cancer but had moved to her lungs and now she has to carry around an oxygen machine everywhere she goes.  She is not able to go to normal school anymore because she is too sick.  She feels that she can’t have her same “normal” friends anymore because they don’t know what to say, and her cancer is always there.  She feels that everyone always stares at her because she always has the oxygen machine with her, the visible sign of cancer.

And in a weird way today I felt that having a special need’s child like Bella, is similar to having cancer.  It might be a strange and bold statement, but the parallels are there.

As soon as Bella was born, my life revolved around her.  Just like cancer would sweep in and take over, Bella takes over my world. 

I do not, nor can I ever have what I would consider a “normal” life, or even what I dreamed/aspired to do when I was young. 

We can’t do “normal” activities as a family because Bella can not participate. 

We have friends, “normal” friends, but it can be hard to keep up the friendship when either you always have to go out without your kids, you try not to bring up your kids because it’s a downer, or if you do an activity with your kids you are always the outcast.  As in we are always easily spotted as being different and dealing with a special needs child. 

We don’t want to stay home and be recluses, but you can see how the tendency might creep up when doing any activity takes twice to three times the amount of work.  Just like cancer it’s one of the labels you are always stuck with and always judged by.

I often think when I walk into a room people are thinking – “Oh there comes that mom, you know, the one with the special needs daughter that can’t walk or talk or do anything”.  The child who is over there making strange noises in public, with her head down and to the side.

Don’t get me wrong, I am not saying people are mean.  In fact most people are wonderful and nice.  But let’s be honest….it’s still a label I will live with for the rest of my life and Bella will define me for the rest of my life.

It’s up to me to not let what defines me bring me down.  And most times I can do that.  But there are times when it gets hard, when I do feel sorry for myself, when I do allow myself to wallow in pity.

I should probably take this hot bod to bed (because I have a temperature and am burning up, not because I think I am good looking), and get some precious few moments of rest before the coughing in the house begins again.

Happy 6th Birthday Bella

Bella turned 6 this week.  It was a very sick household this week, so luckily we had celebrated Bella’s birthday earlier.

The previous weekend we headed to the planetarium to check out a show.  I thought Bella might like being able to recline in her chair and watch a show all around her.

She did a good job watching the show.  It was hard to tell if she enjoyed it, but she certainly paid attention.

The weekend before that we actually made her a cake and sang happy birthday, plus opened some gifts.

For Bella’s birthday we finally bit the bullet and bought her a special needs stroller.  We haven’t taken any pictures of her in it yet, but it seems to be a little more comfortable ride for her.  It should hopefully last her quite a few years, but even with the very high price tag, it’s actually not made that well.

School picked up the slack for us on her actual birthday.  She got to celebrate twice, once in her kindergarten class and once in her FOCUS room.  Her kindergarten classmates made her a picture book of her favorite things to do.  They used a collage I had sent in for inspiration.  Most of the pictures involved Bella being in the water, either the pool or on a boat.  It’s definitely something we will have to save to remember.

Meet the Teacher Night

It was meet the teacher night at the elementary school.  I debated whether to go.  You see we have done all the kindergarten informational meetings, round-up, etc.  It’s a lot of information, but little to none actually pertains to Bella.  So when this next night in the line up of teacher-parent information came up, one that required you get a sitter because kids were not allowed, I wasn’t quite sure if it was worth it.  And when we couldn’t find a sitter, well, I debated even more.

In the end I figured I should go.  I didn’t want Bella to be the only child whose parent didn’t show up, even if the information I was going to hear didn’t pertain to her.  Jesse stayed home with the kids and I headed over by myself.

Every single parent was at that meeting, so I was extremely glad I had made the choice to go.  It was a 30 minute session where the teacher laid out all the things the kids will be doing in the classroom and what they will be bringing home for homework, etc.  In most cases Bella will not be participating in their normal routines, she will not be bringing home the homework to complete, she will not be doing the reading assignments, etc.

But at the end of the meeting, Bella’s Kindergarten teacher made a point to talk about Bella.  She talked about how much they loved her, and how special she was to all of them.  She said how they were all super disappointed and asking where she was on the day she was sick and stayed home.  She said that even though Bella can not communicate with them, she still teaches them so many things.

Then she said that every time Bella comes into the class room they all sing her a song.

It goes like this:

HELLO, BELLA, COME ON IN.

HELLO, BELLA, COME ON IN.

WE LIKE YOUR SMILES AND YOUR WHEELCHAIR TOO, WE ALL WANT TO BE FRIENDS WITH YOU.

HELLO, BELLA, WE’RE GLAD YOU’RE HERE.

One of the mom’s later on, said her son was singing this song at home, and she had been trying to figure out where it came from.

Bella’s teacher also went on to say that her class and all the kids at Morse were going to benefit so much from Bella and the other kids like her in the FOCUS program at their school.  The love they will learn from these kids would impact them in great ways.

She quoted to us from the local news something she had just heard that evening “The level of love you allow yourself to reach for a person of unfathomable innocence is far beyond any love than most people will ever know in their lives.  That is their greatest gift in life”.

She basically talked about Bella for about 5 minutes and kept thanking me for having Bella at the school.  Both of us were near tears at the end of her speech.  I thanked her for all that she is doing, and that I am delighted to have Bella in school with them.

And I walked away thanking God again for the people he has put into Bella’s life.  In this respect I know we are blessed.

These are picture of Bella’s classmates in the Focus Room.  They were told to bang on drums as loudly as they could to get Bella to hold her head up.  If she stopped holding her head up they had to stop.  They were very excited when she held her head up so they could make noise!  And as you can tell from the photos she enjoyed watching them and was having a good time herself.

First Days of School

I really wanted to create an interesting photograph for Bella’s first day of Kindergarten.  I saw the idea to use sidewalk chalk and have the kids laying down.  Hey Bella can lay down.  Let’s give it a try.

I took lots of shots, and the one below is probably the best.  But of course I couldn’t get her to actually look at me.

And we ended up with a face full of chalk.

I have been looking forward to this day FOREVER….or so it seems.  Bella reports back from her teachers is that she is doing great, and she has been super happy when she gets home from school too!  She has officially completed two days of school.

Bella is in a FOCUS room.  Most of us would have called this a resource room or something similar.  I believe she has 5 or 6 classmates and they all have varying degrees of disabilities (metal and/or physical).  There is one other boy in the class who is in a wheelchair like Bella.  The kids in this class are all of varying ages, Bella being the youngest and only Kindergartner, all the way up to 5th grade.  This room has a teacher and paras.  Bella is assigned a para for each of her activities. 

She is in this FOCUS room a little more than half of her day.  The other part of her day she joins her kindergarten class.  This year is a little interesting in that Bella is there for a full day, but she actually participates in all three different kindergarten classes (morning only, full day, and afternoon only).  So she in fact gets to meet every single Kindergartner in her elementary school.

Bella joins her kindergarten class for things like art, music, PE, recess, lunch, reading time, spanish (it might seem weird but it’s mostly sung at this age and they think she will enjoy the music), and any all school activities or classroom parties.  But again, when she joins the kindergarten class she has a para with her at all times.

It will be a little bit of a learning process as they get to know Bella.  She already tested them the first day by not really eating from them.  I think she will quickly learn if she doesn’t eat from them, it's a long time till she gets home and fed by mom or dad.  And by the second day she gobbled up every single thing I sent (breakfast, lunch, and snack).

During recess the first day it was reported she went on walks with her para.  That evening I got an email from her teacher, it said that she had meet all her kindergarten classmates that day and they were asking questions about Bella, was it alright if they talked to the classes about her?  Of course it is alright with us, we are completely open about everything with Bella.  The second day we got a report home and Bella had gone on walks again during recess but this time she had some kindergarten friends that went with her.

And that made my day!

Bella’s First Day of Kindergarten

I will have a longer post later…but I thought I would give you a sneak peak of the pictures we took this morning.