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. 

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.

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.

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.

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. 

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:-)

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!

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?

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.

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!

D4D

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. 

That R Word

I know I used to use it.  I know I am extra sensitive about how harsh it sounds now.  I read a lot of comments on facebook that use the word retarded and I cringe.  Somehow it hurts me to read it, to hear it.  I have heard my kids say it.  I read a lot of posts on facebook that use that word in their status updates.  Sometimes I want to respond, but I usually don't...until the other day.

A couple of days ago, a teenager that I know used it.  He was comparing something that he didn't think was very good to someone who was retarded.  I thought and decided to write something.  I simply said that the item he was talking about must be amazing and wonderful.  He got it.

Very shortly after I left the comment, the post was totally deleted and I had a sweet message in my inbox.  He said he was very sorry for insulting me and Davin and that he was glad I had said something and that it helped him to grow.  What a sweet boy.  He would NEVER have hurt Davin on purpose.  Never.  I told him that I knew that. 

So, maybe that is how we make a difference....one person at a time:-)

His First Baby Girl

My girls have always adored their Daddy.  Our Ashleigh and her Daddy fell in love the moment they met.  Alan was not present for her actual birth, but met her when she was about 9 hours old.  It was love at first sight....on both sides. 

When Ashleigh was little, Alan was away a lot since he was in the Navy.  She had such a hard time handling long periods of time without her Daddy.  When Alan was gone on a med-cruise for 6 months, she carried around a picture of Alan holding her when she was a newborn and she would not just cry...she would sob....she would wail.  It broke my heart. 

Alan and Ashleigh are alike in so many ways and that always gave them a bond while Ashleigh was growing up.  She always felt like her Dad handled her much better than I did during some difficult times in her life.  I don't necessarily agree with that statement, but I am glad she sees things that way;-)

Now that Ashleigh is married, she doesn't spend as much time with her Dad, but she loves him just the same.  Alan just got the sweetest note from her for Father's Day and it meant so much to him.  There is just something special about a Daddy and his girl.

Tired

After a week at camp and a super early morning today with Davin's golf tournament, Davin is exhausted!! 

By the way, camp was a huge success.  If only I could get some information out of Davin, though.  I guess what happens at Handi-camp stays at Handi-camp:-)

He is There.....

We spent all weekend packing up and making sure Davin had everything he needed for camp.  It was all a bit overwhelming to try to write down everything that his counselor needed to know, but thankfully I have a bossy boy and Davin will help his counselor out if needed:-) 

This morning, Davin, Ashleigh and I headed out and drove an hour to Camp Malaga.  Davin was checked out (he offered to show his stomach, of course, but they did not find that necessary), checked in, and got a new camp t-shirt.  (Of course we put it on right away!)  I stayed for a little while and showed Sam (Davin's counselor) where I had put things in his bag and then showed how I feed him. 

Then, it was time....I wasn't sure how I would feel leaving him, but I just knew.  I knew it was time.  He was ready to start the camp experience and he couldn't do that while I was there.  God was gracious and gave me enough time to feel comfortable that Davin was in great hands.  It also helped that his counselor has been doing this for 20 years. God so knows I am a baby step kind of girl. 

Here is a picture of Davin and Sam:-)

P.S.  I have already received a phone call from the camp nurse.  Just Davin up to his old tricks:-)

Big Kids

I have been the mom of big kids for quite a while now.  It is not the same as being a mom to younger children.  It is an amazing time, but it is very different.  There are a few things that I have learned so far and have been pondering...

Be a cheerleader!  The bigger my kids got, the more I saw a need for a lot of positive reinforcement and less correcting.  This is a hard one for me to work on.  When I see things that need work, I want to address them, but have found it better to bite my tongue a  lot more.  (At times to the point of it bleeding!)  It is also very difficult because the bigger the kids, the bigger the problems can be, but I want to be that Mom that my kids know is in their corner and believes in them.  The training has been done (well, most of it;-) and now it is time for them to use what they have learned.

Put your hands on them!  Especially when my kids started getting into their teenage years, they would not always want me to touch them anymore.  I did not let that stop me.  I continued to love on them, hug them, and touch them when I was talking with them.  I am convinced this continues to show love to them.  Even now, when I put my arm around my 20 year-old Cheney during church, he doesn't get upset with me.  I think he still sees it as love.  (Maybe inside he doesn't;-)

Be Dear Abby!  Although I try not to address every issue I see in my children's lives, I try to be available for those times when they want advice or to talk something through.  I try to make that a priority, even over the other important things in my day.  Just yesterday, my biggest girl called me and I was in a store.  I usually hate to answer the phone when I am in a store, but I just slid into an aisle where there weren't other people and we had a great conversation about a big decision she was making.  I try to be better about listening and helping them sort things out. 

I still have so much to figure out, but I am thankful for this time of life...a time when I look forward to being with them, talking with them and enjoying their company.

I Know the Look

This is my fourth time around having an 18-year-old in my house and all that comes along with that.  I have raised at least one very verbal child, at least one medium verbal child and one non-verbal child.  All of them, no matter how verbal, had the look to go with the saying "I am 18 years old and I will do what I want."  It has become kind of a joke in our house.  I am guessing since the world says that at 18, you are officially grown, that my kids have bought into that big time and we spent a lot of their 18th year hearing that familiar phrase and seeing the look that goes along with it.  Just because Davin is non-verbal, don't think I don't see the same look and I KNOW what he is thinking. 

This morning was one of those mornings.  I had to remind him over and over again what our purpose was during breakfast.  He knows we have a strict schedule in the mornings and I am pretty sure he is familiar with the routine by now!  It seemed that he had other plans for today, though.  After a rather frustrating breakfast time, Davin looked at me rather pleased with himself and I saw it.....the look.  It was as if I could read his mind.  I know.  I know.  You are 18 and you will do what you want. 

Quite a Difference

I find it so interesting that in order for me to welcome an adopted child into my home, I am asked if I have screens in all of my windows, what my childhood was like and how I dealt with my grandmothers passing away.  To welcome a biological child into my home, I only needed to produce a satisfactory car seat.  To raise a child that has a severe disability, I was simply sent on my way with a list of tests to further overwhelm me. 

Of course, I will do it, because it is so worth it, but what a difference.