Playing on the Trampoline

Zuri's favorite summer activity is jumping on the trampoline with the sprinklers--in fact she loves any water activity--but sprinklers on the trampoline takes the cake!

VIK

In May I had the opportunity to present "Zuri's Adventures" to her class for her VIK-- "Very Important Kindergartner."  It is a way for the class to learn more about the student.  I was originally going to make a poster with Zuri's interests and talents, however, she had a different idea.  She wanted pictures of all her adventures.

I tried to incorporate as many as I could (Lake Tahoe, exploring Georgia, white sand beach in Florida, floating down the Chattahoochee river, hiking Stone Mountain, Sand Dunes, Colorado, Monarchs Game, Bees Game, ice castles, camping Yosemite, etc), but there were still some that I couldn't fit in, such as our time in Zion National Park, Cascade Springs, and hikes in Tahoe.  While I was putting this collage together, I realized that most of our adventures were pre-Kai.  As much as we try to live our life as normally as possible, with Kai I have come to the sad acknowledgment that we are not nearly as active as we used to be (as evidenced my my waistline ;-) ).  We can't just get up and go at a whim.  Even day adventures require quite a bit of work and planning to accommodate Kai.  There are places that we simply cannot bring him because they are not wheelchair friendly, or his stamina is just not where it needs to be.  His vent has a battery life of about five hours, so if we are going to be out longer, we need access to a power source.   

Life was so much simpler with just Zuri to cart around, and she was a willing adventurer.  Now, it feels as though we spend too much time inside our house.  With Kai, and now River, getting out is much more complicated, yet we persevere.  Practice makes it easier, right?  We have some fun trips planned this summer (so stay tuned!).  Zuri will also be pretty busy with swimming lessons and summer dance class, along with a few new adventures to add to her collage!

Be Brave

Zuri's spring dance recital was titled "Be Brave."  They danced to the classic, "Old Time Rock 'N Roll."  Her dance class started out the year with six girls, but by the end of the season, it was down to just two--Zuri and Sophie.  There was one other girl who would still come intermittently, but she was out of town for the recital and didn't show up for pictures. 

As for the dance itself, I think both girls suffered a little stage fright.  They knew the dance fairly well beforehand, but when they got up on the stage, it was touch and go throughout the performance.  Still, they were super cute in their outfits, and they get an "A" for effort!

Seeing Me

I read an article a few months ago that has really stuck with me: The Mom Stays in the Picture. Here is the portion of the article that hit home for me:

I avoid photographic evidence of my existence these days. To be honest, I avoid even mirrors. When I see myself in pictures, it makes me wince. I know I am far from alone; I know that many of my friends also avoid the camera.
It seems logical. We're sporting mama bodies and we're not as young as we used to be. We don't always have time to blow dry our hair, apply make-up, perhaps even bathe (ducking). The kids are so much cuter than we are; better to just take their pictures, we think.
But we really need to make an effort to get in the picture. Our sons need to see how young and beautiful and human their mamas were. Our daughters need to see us vulnerable and open and just being ourselves -- women, mamas, people living lives. Avoiding the camera because we don't like to see our own pictures? How can that be okay?
Too much of a mama's life goes undocumented and unseen. People, including my children, don't see the way I make sure my kids' favorite stuffed animals are on their beds at night. They don't know how I walk the grocery store aisles looking for treats that will thrill them for a special day...
Someday, I want them to see me, documented, sitting right there beside them...
I'm everywhere in their young lives, and yet I have very few pictures of me with them. Someday I won't be here -- and I don't know if that someday is tomorrow or thirty or forty or fifty years from now -- but I want them to have pictures of me. I want them to see the way I looked at them, see how much I loved them. I am not perfect to look at and I am not perfect to love, but I am perfectly their mother.
When I look at pictures of my own mother, I don't look at cellulite or hair debacles. I just see her... I didn't care that she didn't look like a model. She was my mama.    (Article condensed)

I know over the years I have ducked away from the camera more times than I care to count.  I am sporting an extra forty pounds from my three kids (eek, did I just admit that?).  How many pictures have I deleted because I didn't like the way I looked?  Yet, what happens when I am gone?  I want my kids to not only have memories of me, but pictures--actual tangible evidence--that I was there with them.  Day in and day out.  I was there.  I'm not saying that I have to be in every picture, but I need to include myself in the pictures even when I am feeling less than stellar, because seriously, how often do we really feel we look the best, or have the picture taken at just the right angle to make you look good?

My grandma is a perfect example.  For years and years she avoided the camera, so we don't have many pictures of her looking at the camera smiling.  We have candid shots here and there that we were able to sneak in, but what about all the missed shots?  I want to be able to proudly show my children their great-grandmother when they are older.  See, she was there.  This is your great-grandma holding you; playing with you.

A picture is worth a thousand words.  A picture can bring back memories long forgotten.  A moment captured can remind you of so much more than just what is visually in front of you.  



This picture, for example, reminds me that we went to Cascade falls, and that it was one of our first "real" outings with Kai.  It was before he was vented.  He had been fussy so I was holding him and J thought it was a perfect spot for a picture.  Zuri had been fascinated with playing with a stick and didn't want to come over for a picture at first.  It was a testament to us getting out and not letting Kai's disabilities keep us from doing the things we love.  It was a first step in showing him the world.

I want my children to see me.  Forty pounds extra, hair messed up, and even pajamas on; because this is me--now.  So, I am going to make a tremendous effort not to duck away when the camera is pointed my way.  I am going to be included in the pictures, and even start doing *gasp* selfies with my children, because honestly, when you let go of "perfection," aren't they fun?


  

Five Months

This little one is five months!  Wow, the time really does go quickly.  She is no longer confined to her play mat--she rolls all over!  She can roll from her back to her tummy, and from her tummy to her back with ease.  Pretty soon I am going to have to start baby-proofing the house, especially since everything she gets her hands on goes into her mouth!  She even managed to get her diaper off and enjoyed chewing on it.



I had been getting her dressed for the day and Kai needed my attention for a minute, so I left her in her crib with some toys and when I came back (seriously less than two minutes later), this is what I found!  She was very proud of herself.


Bath time has become more fun since she has "discovered" the water.  She will kick her legs and splash.  She even tries to "grab" the water and put it in her mouth.  It is way too cute!


Since she is so busy and loves to be upright, I pulled out Zuri's old exersaucer and she loves it!  She figured out how to spin and push the buttons right away.  The batteries still worked after five years.  How great is that!

Chick Hospital

Earlier this year Zuri's class had the opportunity to watch and take care of some chicks.  They cared for them as eggs in an incubator and watched as they hatched.  It was a great learning experience for the kids, and they even had other students come and they told them about the chicks.  The parents were also invited and Zuri's class posed as "veterinarians" complete with "lab coats" and stethoscopes.  They answered questions and talked about the chicks.  So cute.

After the chicks were all hatched and the class had shared all they learned, the chicks went to a good home where they have plenty of room to roam around. 

Zuri talked about the chicks for weeks.  She would talk about the eggs being in the incubator and "you can't touch the incubator."  She loved when they could touch and feed the chicks.  Zuri's teacher mentioned getting pictures of her holding one of the chicks, but I haven't seen it yet.  What a great experience for the kids!

IEP/Preschool

Kai now attends preschool!  I can't believe how big he is getting.  His preschool is twice a week for two hours, and the bus comes right to our door to pick him up.

It has been so strange with him gone.  The first day, I took the girls and we went for a walk and visited some neighbors.  It was so nice to get out of the house and enjoy the sunshine.  The other two times he has been at preschool, I have been watching kids, but we still took advantage of the outdoors for a short time.

Before preschool started, we attended what is called an IEP (Individual Education Plan) which outlines Jeremy's educational goals and guidelines.  We met with Jeremy's teachers, the principal of USDB, OT, PT, and a whole host of others.  The meeting was over three hours as we went through a comprehensive history of Jeremy and and his goals throughout the next year.

We had been undecided whether to send Kai to a local elementary school or to USDB (Utah Schools for the Deaf and Blind) since he qualifies for both.  USDB has a longer day--four and a half hours four times a week--than the school district.  The program at USDB is rather impressive, and we really liked the school itself.  We did have concerns about Kai's stamina and the school itself is set up more for just deaf disability rather than a multiple disability person like Kai, especially intellectually; the decision was ultimately made when the principal of USDB thought the school district would be a better fit, since she didn't even know about some of the things which we discussed for Kai's goals.

As it seems with everything, we find out new things when we have big meetings.  Our vision specialist, when giving the report on his vision with information she had received (with our permission) from the ophthalmologist, mentioned Kai having CVI (cortical vision impairment), which was news to me.  It was his corneal abrasion which led us to having a vision specialist come in, since he has severely limited vision in that eye, but we were under the assumption that that was the only issue with his vision.  Well, turns out, her services really were justified because although he can see, his brain just doesn't always process the information that he sees.  Huh, that should have been information we had known, but wasn't given to us.

However, with the knowledge of CVI, Kai now has a deaf/blind specialist that will stay with him throughout his school career, which is pretty cool.  We met her on the last visit from the vision specialist (or PIP Vision to be correct). 


Kai has done pretty well in school.  He enjoys the bus ride because it is bumpy.  They transport him, stroller and all on the bus.  Makes it fun.  On his first day of school I had the urge to follow the bus to school and peek in on him in his class.  I didn't, but I think the only reason I didn't was because I trusted the nurse who was along with him.  The two nurses who rotate to accompany him at school are both trusted, which makes it easier to let go. 

My schedule seems so empty without all the therapy appointments for Kai.  What am I going to do with all the extra time?  Ha ha, I still have an infant and a six year old, so there really isn't extra time.  Kai's school and Zuri's school are on opposite times.  Zuri has school in the morning and Kai in the afternoon, so just as Kai gets off, Zuri comes home (at least until summer break).

For his part, Kai has been super happy when he gets home, although reports at school have been that he gets fussy throughout the day.  He even fell asleep one day.  Overall, though, he seems to be doing well.

We did have one incident where Kai's nurse reported that the school nurse had come in and saw Kai's nurse holding him.  The school nurse told our nurse that Kai is no longer a baby and shouldn't be held.  Well, the mama bear came out in me and I wrote a pretty lengthy letter to the Kai's teacher.  The gist of the letter is that although Kai is not physically a baby, he is developmentally still in the 4-6 month range, and if 5-10 minutes of holding him calms him down, it is better than him being upset the whole time he is there.  He needs time out of his stroller and school is supposed to be an enjoyable place for him.  I also listed alternate ways to help calm Kai down, but ultimately, he loves physical contact, and holding him is the quickest, almost sure-fire way to a happy Jeremy. 

I talked with his teacher the next day, and she was on the same page I was, which helped.  She said that she overheard what the school nurse said and hadn't agreed with it.  She said if any kid in her class was upset, that she would hold them.  It made me feel better, especially when she mentioned that getting Kai out of his stroller makes him seem more accessible to the other kids.  The stroller can be kind of intimidating to them.  So far, no more incidents with the school nurse.  One more reason I am glad that a trusted nurse is along with Kai.  Hopefully, as he becomes more adjusted to school, that he will have less periods of fussiness, and really enjoy the experience.