Let Summer Begin

My kids are officially out of school for the summer. I already feel more at ease having them home. I don't have to worry that if I go outside I will miss an important email or phone call about Daniel. I have not blogged much in the past couple of weeks just because it gets so crazy at the end of school. I am ready to give you a brief run down on what has been going on around here.

Daniel had a field trip, kind of an end of the year reward, to go bowling. I think his teacher was really glad I came along, it meant she got to relax and enjoy the event too. =) We averted a meltdown over someone taking the perfect ball and we chased off a stinky low, but overall, he had a blast.

Sometimes bowling doesn't go like you want....

But sometimes it does.

Then, Taylor had a band banquet that we all attended.

The school provided the meat and rolls and the rest was potluck from the band families. Potluck in the South can be a beautiful thing.

My blue bears enjoyed the food and fellowship.

Sarah was just trying to get to the dessert portion of the meal.

Taylor and her fellow Bandies enjoyed the evening. It was sad saying goodbye to the Seniors but they will be forever connected.

Next, Miss Sarah had a field trip. The kids that had the highest total points in their reading program were treated to a day at a fun center.

There were bumper boats that squirt water.

Go Karts.

And put put golf.

That sometimes turns into a team sport.

Sarah had her final coach pitch game of the season. Her team won and they had tons of fun.

She received her first trophy ever and she was on top of the world.

There was graduation that the band played for. One of the girls in this class died a couple of years ago in a car accident so all the seniors pitched in to buy her cap and gown. They placed it on a chair in the back and included her in the speeches made that night. It was very special.

We finished the chicken's run. You can see pics over on their BLOG.

Taylor started her first job, she now works fast food. She also had her tryouts for drum major. She did not get it this time. She was trained in more of a disciplined military style and apparently the judges were looking for theatrical. It was a tough loss for her because she is good and is passionate about it. She has decided she will be marching next year playing the Mellophone instead of woodwinds.

Sarah received a trophy for staying on the principal's list all year with straight A's. She was very proud of herself.

Daniel finally made it through a semester without going over his demerit level. He earned a video game by ending the year with two demerits to spare. I know that he worked hard to accomplish this and I am very proud of him.

So we say welcome to summer and all the adventures it will bring.

My 10 Things

I was tagged by Cara over at Every Day Every Hour Every Minute. I am a little late in getting this done so while the rules say I must tag six people, I think every one has already been there done that. The idea is to write ten weird things about yourself. If you have not been tagged and want to play, please leave me a comment so I know to go check it out.

This is kind of hard because I am a bit of an odd bird anyway, so what is normal and what is quirky? The parts of me that are not odd are kind of boring. Well, here goes nothing...=)

1. I spent the majority of my life trying to get out of a small town and be somebody. I finally realized that being part of a small town and raising my family with the values and lessons of my past generations is what I was meant to do.

2. I have a rediculous need to research things.

3. I have no real talents to speak of but I am surrounded by very talented people.

4. Pack Rat is a term that used to describe me but since multiple health issues have entered our house I have turned into a person who streamlines. I still hold on to memory tubs for the kids and of course family history items.

5. There are several issues I should go to the doctor for but no matter what I can not seem to make myself find a doctor to visit and go.

6. Blue and I are slowly but surely building Redbud up to be a working hobby farm. Our next addition will be my favorite, goats. No matter what, they make me smile.

7. I have 17 Aunts and Uncles (not including spouses) which gives me around 50 first cousins. We have no family living anywhere near us. I secretly dream of having a family ranch where my kids could grow up surrounded by our loved ones, but it will never happen.

8. There was a time that I was a very social person. Now, other than Blue, all of my friends are in this magical box we call a computer.

9. I have a notebook full of inspirational quotes and words of advice that I will hand down to my kids. I also have a bible that I highlight passages and write notes in to pass on as well.

10. When I was in high school I never saw myself living past 20. I never saw myself being a mother. Now I have three beautiful children and married to my best friend, the greatest man I have ever known. I am absolutely blissful and I hope that others that have lost hope can realize that your world can turn around and be something you never ever dreamed.

Springing the past forward.

I love spring time. I love the warm nights and the smell of the rain and wet dirt. Waking up to the incredible green scenery every morning is a revitalizing way to start the day. The sounds of the birds in the morning and sitting on the porch in early evening watching the bats perform their aerial dance with such grace and such purpose, these are healing moments. Teaching my children how to identify the beautiful birds that visit our feeder daily is so rewarding. At last count we have identified 19 different kinds of birds on our property and two more in a nearby field and creek.

Working on our "Family Roots" yard project has been a fun and meaningful journey. It will likely be an ongoing project for many years but we have really gotten off to a great start with it. We have planted or placed thirteen different types of plants or decor items in honor of loved ones so far, with many more to come. This summer, when the kids are out of school, we will be making path stones and markers to chronicle the items. I have also started a journal that will explain the meaning behind each item and a bit of a backstory about the person being honored. I am hoping it is something that will be passed down and in some way will keep these wonderful people's stories alive for generations.

A couple of examples of our project are the Blue Moon Hydrangeas and the Red Hens & Chicks. The Hydrangeas were chosen by my husband's aunt. When she was a little girl growing up in Holland her Oma had beautiful blue Hydrangeas in her garden, this has always been a fond memory for her. I planted three of these bushes, one in honor of her Oma (or my husband's great-grandmother), one for her (my husband's aunt) and one for the new generation. All those years ago, Mrs. Heuberger made a decision to plant these beautiful bushes in her garden, not knowing that three generations later, half way around the world, similar plants would be placed into the earth as a reminder of her and those she has touched. I only hope that the ones in my garden have the same affect on my kids or my grandchildren.

The Red Hens & Chicks are for my Aunt. The Red color reminds me of the Oklahoma ties that bind us. The land that she lives on and has raised her family on, including me here and there, was attained by her husband's family in the Oklahoma Land Run. Over the years, she and her husband not only raised their own house full of kids but they also took in over 100 foster kids. Since her husband's death she has continued spreading the love and care for kids on her own. She is a mother hen who always has been and always will be surrounded by baby chicks to care for. Now when I see these succulents in my garden and I watch them multiply and grow stronger with numbers, I think about her and her strength. I think about how many lives she has not only touched but changed and made better just because she is an incredible Mom.

Yes, spring is full of new life and new promise. Raising the chicks, teaching the kids how to care for them and now preparing for goats, these things offer so many teachable moments. Planning a garden, deciding as a family what should be planted and later preparing the food for storage, such as freezing or canning, can be a chance for the kids to buy into our vision while learning important skills. Once we get past all of the end of school activities we will be able to really focus on having some fun here on our little hobby farm and hopefully grow closer by combining the past with the present while working toward our future.

The Good and The Bad = Balance

My last post sounded like I want only the bad parts of diabetes to be shouted from the roof tops. You know what? Some days I do. Now, I started this year saying that I was going to be more positive and try to be more beneficial. For the most part I think I have stayed on track but sometimes being real, even if it is negative, can be beneficial too.

I find myself at that crossroad lately, you know, if my life were on a GPS the bell would be going off telling me to choose a road. I want to be positive, I want to hide all the bad stuff from my family, I want to only talk about the blessings and to post pictures only from the mountain tops. Reality forces me to know that to have blessings, to get to the mountain top, to be positive, I must travel those icky roads of thorns, steep inclines and disappointments.

If I am reading blogs, looking for that validation that I am not alone, the happy go lucky, always up people can't do that for me. It is the ones that tell their real life story that I can connect with. Don't get me wrong, I refuse to always be gloom and doom, but my real life story is full of MS, Type 1, Asperger's, teen struggles and a little girl trying to get the attention she deserves. We have lots of good and joy in our lives. We have lots of love and smiles to share. Sometimes though I have to share the frustration and tears too.

Going to a minor league baseball game with my family is a joyful thing. All the preperation to get there is a pain in the hiney. Enjoying a burger at the park with your kids is a fun thing. Having to have the discussion with your son as to why he cannot have cotton candy is heart breaking.

Sitting in the car for a while after getting there while Daniel has a major meltdown because of anxiety and being overwhelmed, not so good. But him being able to go inside, even if that means hiding in mom's jacket for a while until he gets his balance, is a good thing.

Still being able to go to events with my husband is a wonderful thing. Even when we have to leave early, which can be a difficult thing.

Having a teenager that will still be seen with us in public is an incredible thing. But sometimes having a teenager is a challenge in itself.

Still having a child that can be happy in the moment and sit on mom's lap is beautiful. Knowing I don't give her as much lap time as she would like is a guilt inducing thing.

Daniel making friends at the ballpark is a proud moment. The fact that he would only talk to them through the DS is a reminder that we have a long way to go.

Finishing the chicken house is a fulfilling thing. Knowing what it did to my hubby to work so hard is a sobering thing.

Moving the chickens into their new home as a family is a moment that gives you warm fuzzies. No negatives here. =)

Watching my kids play with the chicks and make sure they are happy and taken care of is priceless.

A New Member

I just had to take a moment out of this busy day to write about a new member in the Type 1 world. As you all know we moved here to TN from CO a few years ago. You also are probably aware that I am a huge fan of college football. While my football loyalty is with the OU Sooners and my husband has his connections to Auburn and Notre Dame, we found ourselves pulling for Vanderbilt. Partly because that University is where both my guys are treated for their health issues and in large part because they are such underdogs. They had a shining season when they were led by quarterback Jay Cutler and it was exciting. Cutler went on to be drafted by the Denver Broncos and we found ourselves both proud for him and kind of felt that weird connection to him. (No, not stalkerish weird connection)

Now we have even more of a connection to Mr. Jay Cutler. He has been diagnosed with Type 1 diabetes at the age of 25. You can read the article HERE. As the article says, this disease is manageable. Sort of. He can still have an outstanding career. But they don't say how he will have to work ten times harder now that he not only has to foster all of the plays and thinking that goes with being a quarterback but also all of the 24/7 mental fatigue of Type 1. He is the quarterback of a team that still holds everyone in comparison to John Elway. That is a lot of pressure, especially for someone so young. Now he will have so much more pressure trying to prove to his body, as well as everyone else, that this illness will not stop him from being the athlete he is meant to be. Just once I would like to read an article like this one that tells the truth, and nothing but the truth. I think it would go something like this:

Denver Broncos quarterback Jay Cutler recently received a blow to the gut with the diagnosis of Type 1 diabetes. Cutler who is 25 years old will spend every day for the rest of his life being his own surrogate pancreas. His new role will require injecting insulin and checking blood sugar levels multiple times during each day and night. He will count every carb he eats/drinks and monitor himself very carefully during physical activities.
While his business manager assures the world that Cutler's illness will in no way jeopardize his football career, the truth is that he will have to work ten times harder to make his job possible. There are many other athletes that have made Type 1 fit into their plans and have been successful but it is definitely a huge undertaking.
The positive side of all of this is that there is a huge diabetes community that are ready to surround this young man with support and encouragement. Mr. Cutler also has the opportunity to be a role model for younger Type 1 athletes and to get the word out that the world needs a cure for Type 1 diabetes.

The Simons Simplex Collection

A while back I mentioned that we were participating in an Autism study. We don't typically do a lot of studies for the simple fact that I don't want to put Daniel through any more than he already deals with. Sometimes I think he must already feel like a lab rat, what with all of the appointments and doctors that comes with Type 1 and Autism. Then when you add that we track his every move, every bite, every number, every day, it just seems like a lot for a kid.

This study came along shortly after his diagnosis of Asperger's and it's purpose is to study the genetics of Autism. I thought it would be good to help them figure out the genetic role in families dealing with an ASD and it could reaffirm for me that his diagnosis was real. I know how that sounds, but there is a wrinkle of time that everyone around you tells you that all the things that are causing your concern are normal. Really? For example, I know that there are tons of kids who do not have an ASD that like anime, but most of those kids like other things too. My son has lived and breathed anime related things since he was three, no trace of interest in any sport or other subject. How about when teachers say that he appears to not have problems socially with the other kids. Then you find out that those other kids call him weird and laugh at him, not with him. While other kids are running in packs, my son usually has one friend. When my son is getting in trouble every single day for being rude and saying things that are not appropriate, what he thinks he is doing is acting in any necessary way to make the other kids like him. He repeats things from cartoons, thinking it will make them laugh, he doesn't realize that it is out of context which makes it just sound mean. He approaches other kids, like a kid wanting to make friends, but when he starts talking to them it is usually mid thought and always about something anime. They do not care and try to walk away, but Daniel follows, still talking, like nothing is wrong. Most kids his age can tell you what they think they want to be when they grow up. Daniel knows he will be a computer programmer and he will create video games. He sneaks his dad's programming books so he can learn, he has attempted to sign up for college classes online and his room is full of notebooks and loose paper with characters and story lines written for the games he will create. His Christmas and birthday lists always have reams of copy paper on them, just for this purpose. These people that tell me his actions are those of any other boy his age, they have never seen a fully loaded meltdown because of a change in plans or because an activity had to end before it was finished. They have never witnessed the uncontrollable rocking of a child that is excited and can't express it. They do not get to see his obsessive compulsive rituals that he adheres to at bedtime or site changes. These things are only a tiny part of the beautiful creation that is Daniel, but these people, in that wrinkle of time, can make you doubt yourself.

We sat down as a family and talked about this study. After all it would require all of us, not just Daniel, to participate. Each of us would have to give a blood sample. I thought this is where we would lose Sarah, but she was all for it. As a matter of fact, when we went to do the blood draw, they could not get her blood but she was brave and was up to a second try. Eventually, we all gave the blood, we all were weighed and measured, Daniel was interviewed and I answered a ton of questions about his history. All of the people that we dealt with were caring and sweet. When it was all done, we received a research report from a licensed clinical psychologist, including treatment recommendations for Daniel, that of course reaffirmed everything we knew. We were also compensated for our time, which was nice, but we would have done it anyway.

The study is being done by The Simons Foundation. The goal is to have two thousand families from across North America to join the study group. If you are interested in participating, the eligibility requirements are:

• Only one child with an autism spectrum disorder (ASD), age 4 through 17
• One or more siblings without ASD, age 4 or older. Families without siblings or with siblings under 4 will be considered for participation as well.
• Both biological parents who are willing to participate
• All participating individuals willing to provide a DNA sample

The Family Compensation is:

• Participation in a nationwide research project to advance our understanding of autism
• Children with ASD will receive a diagnostic and behavioral assessment provided by a team of clinicians at no cost
• A research report from a licensed clinical psychologist, including treatment recommendations, will be provided after participation
• Compensation for the family’s time will be provided
  

Here is a list of their research facilities:

Baylor College of Medicine, Houston University of Michigan, Ann Arbor
Columbia University, New York University of Missouri, Columbia
Emory University, Atlanta University of Washington, Seattle
Harvard University, Boston Vanderbilt University, Nashville
McGill University, Montreal Washington University, St. Louis
University of California, Los Angeles Yale University, New Haven
University of Illinois, Chicago

You can learn more and contact them HERE.

The Tri-Meter Project

I have been MIA for a bit and I apologize. I have been sick for over a week, but I am on antibiotics at this point and starting to feel better. Just be warned that this post may not be fully coherent but I am attempting it anyway. =)

Meters, meters, everywhere! Would you be interested in knowing that this morning at breakfast, my son did a triple test? That is right, he used three meters all with the same finger poke! Is that a record or something? Please understand, he is not losing his mind or wasting strips. Although, I guess, technically that is a $3 blood sugar test.

Daniel has always used OneTouch meters. There have been other brands here and there that he has tried but somehow we always find our way back to the original. For sometime now he has been using the OneTouch Mini, I think the colors won him over, and the fact that it is small. When he got Zak he received the BD meter that had the wireless capability to communicate with the pump. I am not sure we ever even tried it. He always has 3 to 4 meters in use at all times. One at school, one in his d-bag in his backpack, one at home and one in the d-bag we carry in the car. So, being that all of those meters used the same strips, none of which were BD, it just did not seem practical to use the pump's meter.

We have received and started testing out WaveSense Keynote meters. Daniel does a double test when he pokes his finger so we can compare the readings from his Mini and the Keynote. But yesterday he received yet another meter. This one is the OneTouch UltraLink that has the wireless technology to communicate with Zak. Of course we had to try it out, because my boy is a techie at heart and new techie type toys is always a good thing. So, there he was at the kitchen counter with all of the meters laid out in a row and trying to squeeze a big enough blood drop to cover all three.

It is a full time job trying to get one meter to always spit out the numbers you are looking for. When you have three meters in front of you, all saying different numbers, it is kind of a surreal moment. Of course we are dosing off of his Mini because we are using it as the control meter, but it really makes you stop and question how good of control we really have when you see the range of readings that come from the same drop of blood.

I know some of you are all over this and have great explanations. I would love to hear your thoughts. For the record, the numbers from breakfast were: 167, 179 & 201. That is a 34 point range! When it comes to dosing insulin, I think that is a significant difference in results.