Friday, July 29, 2011

I Will Miss This

I will miss this when Cheney goes back to college.  I love watching the way they love each other.  I love seeing Davin's eyes follow Cheney until Cheney talks to him or goes over to him. 

Hands down, watching my kids' relationships has been one of the best things about being a mom. 

Thursday, July 28, 2011

I Have Clearly Lost My Mind

Yesterday in Davin's communication notebook, I got a note saying that he is to be in charge of the limbo at school on Friday.  At first I thought it was because he is non-verbal and they were trying to find a way to include him.  Then, I thought about it and realized that all of the kids in his class are non-verbal and he is just probably the bossiest, so he got the job:-)  His teacher is very funny and loves Davin's sense of humor, so she asked me if Davin had a coconut bra to wear for the limbo contest.  I have clearly lost my mind because I went out today and bought one.

Monday, July 18, 2011

Another Lesson

One morning last week, Davin was not on board with the schedule.  I explained to him why we were on a very tight schedule and exactly what I needed him to do.  He did not feel like doing what I asked.  I was frustrated.  I gave a big speech about how Jesus was not very happy with his behavior and that neither was I.  I went on to add that life does not revolve around Davin and maybe he needs to stop living like it does.  How many times has my Heavenly Father probably had the same thought about me?  Heather, the whole world does not revolve around you, so maybe it is time to stop living like it does. 

I learn so much by teaching my kids.

Wednesday, July 13, 2011

The Same is GOOD!

Davin and I drove down to NJ yesterday and had his neuro appointment at 8 am this morning.  Now we are already back "home" in NY.  Thank you to all who prayed for our appointment.  I had such peace going to the appointment.  After I spoke with the neuro on the phone about a month ago, I was left wondering if Davin did not actually have CP, but had something that was changing.  Today I had all of my questions answered.

I have never had neurologist that I liked.  Never.  Until today:-)  Today we went in expecting to see the doctor that I spoke with on the phone, but instead we saw a nurse practitioner who was amazing.  She answered all of my questions.  She went over the results of the MRI with me bit by bit and explained everything.  She asked me a couple of different times if I had any additional questions.  She sat next to Davin and rubbed his arm every once in a while, looked in his eyes and smiled at him.  Davin was acting like wild thing, but it was funny. 

Today I learned the underlying cause for Davin's CP and for the severity of his CP.  He has a condition that happened when his tiny little brain was first developing.  The NP said that I probably didn't even know I was pregnant when all of this happened.  There is some possibility that genetics is involved.  The NP is going to speak with the geneticist and let me know if she feels we should dig further. The only reason it matters at all is just for our other children to know.  Finding out anything else does not change anything for Davin. 

And that, my friend, is the good news!!  He is the SAME!!  The things that his MRI showed are not new things.  They are things that happened and all explain his CP.  I am assuming the MRIs are different or this information is different than it was 18 years ago when Davin was diagnosed and had his only other MRI. 

The other cool thing that God did through this is that He let me off the hook.  When other people would talk about kids with disabilities they might say things like "God doesn't make mistakes".  I, of course, know this to be true, but  never felt like it applied to our situation.  Generally CP is a brain injury that happens before, during or right after birth.  When Davin was diagnosed, the wonderful (I jest;-) neurologist told me that there was no reason to investigate why Davin has CP because it would just make someone feel guilty.  Can you guess who took on that guilt?  Yup, that was me.  I was always afraid I had someone hurt Davin or allowed him to be hurt.  Today I am freed of that.  Thank you Jesus. 

By the time I got to the appointment today, I knew that if Davin's condition was getting worse or if it was staying the same, I had the same huge God walking beside me and everything was in His hands.  He has equipped me for the journey so far and He will continue.

Tuesday, July 12, 2011

My Least Favorite

Davin has a doctor appointment tomorrow with my least favorite kind of doctor.....the neurologist.  Apparently the MRI that he had done in April came back with a lot of abnormalities, etc (which is weird since when he had his first one done, I think the doctor said it was "normal" whatever that meant).  He had not had one done since he was an infant, so we do not know if things look differently or not.  It is not an appointment that I am looking forward to, but I also have peace.  Oh, how these neurologists can rock my world.  If you would pray for me tomorrow, I would appreciate it.  My biggest concern is that I will have wisdom as to if Davin needs to leave the room when the doctor is talking.  There is no reason for Davin to feel badly about himself and I need discernment for the right time, if any, to let my sister take him out with her.  I have peace, but I sure will be glad when it is over. 

Monday, July 11, 2011

Would I?

I live in the world of "different". I live in the world of "doing things another way". I live in the world of "disabilities". I didn't choose to live in this world, though. (and of course, you know I went kicking and screaming as is my usual course:-)

Today I was pondering how I got here versus how many other families get here. I read a lot of blogs about adoptions. There are so many families that choose to live in the world of "different". Would I? If God had not chosen this path for me, would I have been able to choose it for myself?

I am very thankful for the view from here...this world that is slightly different. The perspective is different from here and I am so blessed to be able to see it.

The Best Part

The best part of the morning was the bus pulling up and my friend "A" waving to me!!  "A" happens to sport an extra chromosome and he waves to me most every day when Davin gets dropped off.  For summer school, he is on the bus in the morning, so that was a BONUS!  I am not sure I would recognize "A" if I saw him in person somewhere.  I only see him through the bus' tinted window, but he sure brightens my day:-)

Sunday, July 10, 2011

The Fun Continued!

Whew!!  We packed a bunch of fun into one week!!  We finished off the week by taking a family trip to the Corning Glass Museum.  Did you know that kids and teens are free, there??  Fantastic!! 

Even my biggest boy (who wasn't free because he is no longer a teen:-) enjoyed the day and took one of the classes.  Watching Cheney in his class, reminded me of when he was 7 and took an art class.  Head down, concentrating on the task at hand.   Alan took a class, too, and made me a necklace.  I can't wait to get it in the mail!! 

Best part of the trip...spending the day with my best guys! 

Cheney may have bought a special prize for "someone", but sorry I cannot show a picture of that;-)  She sometimes reads this blog and I don't want to ruin the surprise!

Friday, July 08, 2011

When you go to school in the summer, you need to cram a lot of fun into a couple of weeks of summer!!  So, we have been busy doing some fun things with Davin.  In the picture above, Davin is moving a can up a belt to feed a goat that was just waiting and waiting for some food.  Davin is not unhappy here although it does look like he is. 

We went out for dinner to Sticky Lips and enjoyed our boys. 

We picked cherries with our friends that Daddy and big brother later got to enjoy:-) 

Davin pumped water.

It has been so nice to have Davin home for a couple of weeks.  He is enjoying sleeping in and having some lazy days in addition to our busy, fun-filled days!  Tomorrow, we are off to Corning for a visit to the glass museum and Norman Rockwell Museum.  Don't you just love summer?

Wednesday, July 06, 2011

Doesn't Get Any Sweeter..

It doesn't get any sweeter than watching your littlest boy hold out his hand for your biggest boy to take it and then watching the biggest boy know right away what the littlest wanted and hold his hand while walking down the street. 

Too bad I couldn't get my camera out fast enough. 

Another Difference

Alan and I have been on a journey together.  We are walking the same path, but we walk it quite differently. Our goals are even different, and yet the journey so much the same.  At the beginning of the year, Alan decided he was going to eat healthier.  After much kicking and screaming:-), I jumped on board a couple of months later.  We have been exercising five days a week, we are always looking for ways to get "more cardio", and we eat very differently than we used to.  Fast food has basically been cut from our diet and although we do splurge sometimes, we really think through our choices. 

We have both been loosing weight steadily.  Alan's whole goal in this is to be healthier.  He tells me over and over again that it is NOT about the weight.  It is about his overall health.  I, on the other hand, announce every half a pound shed with my hands up in the air and my knee bowed like I have just won some great prize!  Next, I sent out texts to my girls and my sister.  Alan rarely ever mentions his weight even when I am bugging him to tell me!!  He really believes his philosophy and I really believe mine.  My goal is to weigh a certain amount and I love to see my clothes get looser and try on things that were tight before.  Alan tries to tell me that his clothes always fit that way and there is no difference. 

The best thing about our journey is that we have been doing this together.  We are supportive of each other and feel like we are on the same team.  We are both excited when I buy a new healthy cookbook and give a new recipe a try. 

It sure is nice to have him, even if we are just a little bit different.

Sunday, July 03, 2011

All About the Food

Tonight Alan, Davin and I went down to a local fish hatchery and park. Davin quickly caught on (because he is so stinkin smart:-) that some other people were feeding the fish.  He nicely pointed out the fish food dispensers so that his Daddy could get him some to feed the fish.  After that, Davin pointed out every single dispenser even though he was told repeatedly that we were done feeding the fish for the night. 

Because we live in upstate NY, we had to go out for icecream afterwards:-)  I have never lived in a place where going out for icecream was such a way of life.  I love it!

Friday, July 01, 2011


We just had the 10th annual Duffers for Davin golf tournament.  I am so humbled when I think about the last 10 years and God's provision for Davin to attend intensive physical therapy.  Some of our faithful golfers and sponsors first started with us back when Davin was 9 years old.  We are blessed.