Picture Update



Bei blowing out Kai's candles!

Fireplace Completed!   Even after 20+ years I am still impressed with Dan's talents.

Kai Kai Sweetie Pie's Braces

Birthday Kiss!  Sweetie Pie turned 3!

DIY

 We will be in our house 1 year on February 24th.   We LOVE our house, the design, the neighborhood, the yard, it is all great.   However, the fireplace is a little out dated.  We had to put the picture horse on the fireplace above because the people who owned this house previously built this odd structure in the middle of the fireplace.   It is the brownish/orange underneath the picture and there is an outlet in the middle of it.  We don't know if they had a T.V. hung there are what the purpose was.   

The tiles and the odd "art piece" with the outlet in the middle was removed.

 New sheet rock was added

A recessed light was added above



I am grateful that I have such a talented husband that he can tackle most Do it yourself (DIY) projects! 

 . 

I LOVE Holland!!!!

 Kai with my friend Wendy.  Do you like his new haircut?

Bei contemplating the "big wish" before he blows out the candles!  He just turned 6 years old!

One of Kai's teachers sent me the story listed below and I thought it did a great job explaining how you need to shift your thinking when your child ends up having a disability.  For us, we chose this route.   We knew that Kai would have a medical special need, we just didn't realize he would have multiple needs and they would be life long...that is our Holland.   We LOVE Holland and I am actually glad that we didn't land in Italy. 

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Welcome To Holland
by
Emily Perl Kingsley

©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.

Social Graces and LifeSavers

I think Lucas really likes Kai's chicken nuggets!

Connecting with other mom's from NV's that have hearing impaired kids has been such a blessing to me.   It is so nice to talk with others and hear that they went through the same struggles.   I was talking to a mom of a child that has graduated from NV's and is now mainstreamed for Kindergarten.   She warned me that hearing impaired kids some times do not have the same social graces that other children have because of their hearing impairment.  She said that she is getting called by the school all the time because her daughter touches other kids to get their attention and non-hearing impaired kids are not used to be touched all the time.   Great!! Let's  just add one more thing"my list" of things to worry about Kai as he gets older...calls from school for touching others.   Well the very next day, I was dropping Kai off at NV's and Bei has to ALWAYS go to the bathroom while we are there.   I walked into the bathroom and looked and there was a man in bathroom!   I stopped in my tracks, starting laughing and said "oh, I am sorry, I thought it was the women's bathroom".   With that I looked at the door and it said, "WOMEN"    He said it "It is the women's bathroom."   Okay, I don't have much of a poker face and must of given him the "what the hell...???"  look.   He pointed to his little daughter and said "My daughter has to go to the bathroom."   I realized once he spoke that this guy is hearing impaired.   Both Bei and I ended up going to the bathroom with the man still in there.   Kind of WEIRD...   Oh brotherhood...is this the social grace that mom's are talking about???   Do I really have to teach Kai that you don't ever go into a woman's bathroom?   However, I am going to give Kai the benefit of the doubt and assume that by the time he is in his 30's he will know not to go into women's bathrooms...

Bei started full day school on February 6th!   He has handled it like a champion!   I am so proud of him.   I thought for sure that he would really give me grief about it, but he has done really well.    He also recently turned six and all he wanted was a cotton candy machine.   We bought it on-line, but didn't realize you have to buy the mix separately.    So instead we throw 3 life savers in the machine and it makes the MOST delicious cotton candy that you ever had, while it spew's strings of sugar all over the kitchen.   Honestly it is worth it!!   I'll have to order the mix, but I bet it won't be as good as the Life Savers!

The Amazing Race

 Are you wondering what Bei and Nanette are so excited about???

His volcano erupted!

My life is feeling like I am participating in the Amazing Race on a daily basis. Here is my schedule on Monday's and Wednesday's. Get up at 6:00 a.m. get myself ready, get the boys up, feed them their hashbrowns and eggs, dressed and out the door by 7:50 a.m. Making sure that both boys have their backpacks filled with everything they need. For Kai that is an extra change of clothes and winter clothes to go outside, hearing aids in, epilepsy medicine taken and a bottle for after class.   Bei it is a lunch and winter clothes. Race to Roseville which is approximately 30 minutes to make Kai's 8:30 class. We then race back to Stillwater to make it by 9:00 for Bei's school. I haven't it made it on time yet, so Bei is racking up the tardy's which Bei's teacher spoke to me about.    This past Monday, as I was pulling into Bei's school parking lot, I yelled for him to unbuckle, get his back pack and get ready to jump out of the car as soon as we stopped. It was 9:00 on the dot, we raced up the backstairs and I shoved Bei into the class room where I met the teacher face to face, it is now 9:01 a.m. With excited anticipation, I asked , "did we make it?" "No, you are the last team in, you are eliminated from the race". Dang!!! Off to the office again for a late slip. I laugh because the office ladies always demand to know the reason why and no matter what I tell them they write the same thing "Ride Late". Duh!!! I suppose they could write "irresponsible mom" but they are being kind. Then I run home and clean the house and I am headed back to Roseville at 11:20 with a stop at Burger King because I know Kai will be starving. Then we race back to Stillwater to pick up Bei from his lunch period.

Tuesday is the opposite. We go to Bei's school first and then race to Roseville to make the parent/child class held from 9:30 - 10:30. From there we race back to Stillwater to make Kai's 11:00 speech therapy at Courage Center. We then race over to the school to pick up Bei by 12:00. 

 The good thing about being an older mom is that I know that everything with these kids is such a short moment in time.     Oh...but one thing that may help is that I am enrolling Bei into full day Kindergarten in February.

A New Day is Dawning

This little boy is changing this momma from a Type C- personality to Type A! 

I am breathing again.   Kai started school at Northern Voices last week and it went really well!   He absolutely loved it.   Today, we went for our parent/child day, where they teach me the curriculum, so that I can reinforce at home what he learns at school.   During the session I swore he said "car" and possibly "open".   Hooray for Kai Kai Sweetie Pie!!!  Okay, none of you would recognize it for a word but this little boy has gone from being totally non-verbal to babbling.   Alot of it has to do with him wearing his hearing aids for longer periods of time.  All that babbling just makes this momma's heart warm to the core.   The day I dropped Kai off at his school I was a little weepy but for a totally different reason than I was with Bei.   Kai I cried because I am so hopeful for his future now.   I am so grateful that N@rthern Voices took Kai since they are a private school they could have denied him.   There are other children with special needs at NV, but I've been told there is only one little boy who has more medical challenges than Kai.   I met that little boy today and oh my word, I can't wait for the time that Kai can converse with me like this little one did.  

We also received some really positive news from Kai's geneticist.   Last Friday he had a CT scan done to look at his ears and also an MRI to look at his brain.   From the beginning we have been told that Kai probably has a malformation of his cerebellum and that is why he walks around like a drunken little sailor (Ataxia).   Instead, Kai's brain is structurally fine!   There is no abnormality to his brain!!!   Ironically, the fact that his brain is not malformed means that we know less than we did before about the Ataxia and the epilepsy.  We don't know why he has Ataxia at this point, but the geneticist said there are more test that we can do.    However, it is a hopeful story that he can just continue to progress.  My little worker has already come so far!    Additionally we were told that his ear show no structural abnormalities either.   

This little guy is doing great also!  He had a very special weekend with his cousin Ben.



Waiting to Exhale...

Tomorrow Kai Kai Sweetie Pie starts school at Northern Voices.   It has been a long road getting there, but I am filled with hope and promise for Kai's future.