Roller Skating

Today we took the kids roller skating for the first time.

It was interesting to say the least.  But the kids had a great time.

At first, Cainan was completely terrified.  He wouldn't go two feet without screeching that he was going to fall.  All I needed him to do was cross the carpet to the seat near the rink.  Poor guy freaked out.

But after a while, he relaxed and started to ask to go on the rink and skate.

The kids had these little walker-looking things that helped keep them upright.  Sort of. 

Arlington and Finley enjoyed going as fast as they possibly could.

And falling down often.

Cainan was keen to lean on the bars and move his feet as little as possible as we basically pushed him around the rink.

We stayed for about an hour and a half and I think we will go back again.  By the time we left, Arlington was sweaty and had some red spots from falling.  But she was happy.

After we got home, I took Finley and Cainan to an ice cream social at the school for Kindergarten students.  It was at the school's playground, so they had a great time.  At first, Finley told me she was nervous as we approached the playground with so many kids.  But once she was there, she did fine.  And she didn't even cling to Cainan, so it was great.

Tomorrow is our last day of summer.  And of course.....it is going to rain.  Sigh.  But it will give us a chance to get everything ready for Wednesday morning.  Onward.....school!

Crossroads

“We had no knowledge that our lives had just changed. You seldom sit at a crossroads and know it's a crossroads. But from that point forward, my life was not going to be the same.” - Raffe

The name of our church in Connecticut was Crossroads Presbyterian church.  

 Today, we made our final trip to Connecticut to say goodbye to our church family and clean out the rest of our stuff from the old house.

 

 Saying good-bye to our church family we have had for the last three years was hard.  Really hard.  It is a small church, but a group of the most giving people you will ever meet.  

 

Three years ago, Mat and I found this little church on the internet and decided to give it a try.  We packed up the kids and took them to church on a sunny morning in August.  A lovely little lady named Shirley met us at the door.  She reminded me so much of my Grammy Appolonia.  She opened the door and said hello to us and welcomed us in.

Today it makes me giggle to think that it was no big deal to Shirley that 5 people she didn't know just showed up on the church steps.  I knew then we had found our church home.  Within a few weeks, it was like we had always been there.

 

And then, news of Finley's diagnosis hit our family.  One of the first people I told was Pastor Ann.  Word quickly spread through our little church and they were praying and helping us fundraise.  There was no doubt what their direction was for our family - they stood behind us and stood with us even though we were so new to them.  It didn't matter.

Today - Pastor Ann spoke kind words to our kids and gave them sweet presents.  And then she spoke kind words to Mat and I and gave us beautiful handmade prayer shawls that we will treasure forever.  Whenever I am missing my church family, I will pull out those prayer shawls and remember all of them and all the great time we had.

 

The hardest part was finding the words to thank all of them for what they have done for our family.  Their kindness, their generosity, their love for us has carried us over the last three years.  We will never forget what they have done for us, and always know they will be there for us no matter where we live.

I find the name of our little church in Connecticut a perfect fit for our family.  We came to a crossroads in our lives 2 years ago when we found out that Finley was going to go blind.  We had to decide to sit back and let nature take its course, or to pray and to fight.  Crossroads Presbyterian has helped us chose our path and has always made us feel we have made the right decision.

 

I am sure that there are going to be weekends when I am going to want to go back to Crossroads just to among the people we love so much.  They will be there to welcome us.  And for now - that gives me the comfort I need.

"I don't cry because it's over, I am happy because it happened"

Last weekend of summer

It is hard to believe that summer is at an end.  That in just a few days we will be filling backpacks, lunchboxes and scrambling everyone out the door to get on the bus.  The time has come for schedules, early mornings, early bedtimes.

I think we are all kind of ready.  The kids are craving more of a routine these days and I think it will be good for them to get back to school.  And....a little good for me too.

We are enjoying our last weekend.  Last evening my sister and brother-in-law, Jess and Tom came in for an overnight visit.  They are attending a wedding in Boston this weekend, and we were so happy to have them in our neck of the woods.

We had a great visit last evening and they spent most of today with us before they headed off to Boston.  It was great to have them here and, of course, the kids loved it.

After they left, we broke out the sprinkler and let the kids get into their suits and run through the water.  It was a hot and humid day, so they were happy for the relief of the cool water.  Plus - I put the sprinkler near the plants so they got watered while the kids played.  It was a win/win.

Mat and I spent the afternoon in the yard while the kids played.  We dug up a few more bushes and planted a few more plants.  We are SO CLOSE to having the front yard ready for grass.  It is really getting exciting.

This evening Arlington and I watched Harry Potter 5 since we just finished the book.  It was fun watching that together and knowing now it is on to book 6.

Tomorrow we are returning to Salem for a few hours to clean out the old house once and for all, and also attend our old church one more time.  We are spending the whole day in Connecticut and will finally close that chapter on our lives.

About A Boy

Today it is Cainan's turn.

On August 13th, 2007 - Mat was handed a 14 month old little boy who was full of smiles.

While other new kiddos around Cainan were crying and unsure of these unfamiliar faces - Cainan took to Mat and started to play with the toys Mat brought him.

I met them at the airport on August 23rd, 2007 - and he was wide awake and smiling - even though it was nearly midnight.  When we got home, he ate, and played and crawled all over us before settling down to sleep.

He slept through the night from the beginning.  Ate like a little piggy right from the very beginning, and fit right into our family like a glove.

He did have a hard first year with us due to 6 major surgeries to fix his cleft lip and palate, and give him ear tubes.  We spent many weeks in the hospital and then weeks after our hospital stays with recovery.

But to watch his appearance change was nothing short of amazing.  He went from saying nothing but "eh" to speaking in short sentences in less than 3 months.

His very first word was "mama" about 6 hours after his lip was repaired.  It was the best to watch him be able to form words with his new mouth.  And know he could now drink his precious sippy cup without issues.

And once that palate was fixed - he was a talking maniac.  And by the time he was also walking.  18 months old and well on his way.  The palate repair was by far the roughest recovery, but he did great.

And here we are - 4 years after his adoption with a bright, funny, little boy who completed our family.  He is all boy all the time and full of energy from the minute he gets up until the minute he goes to bed.

If you look to the right - you can click on the link to read the whole adoption story.  If you go back to the very beginning dates of this blog, you can see what he looked like in the beginning.

You can read how he has changed, but the one thing that hasn't changed is just how darn happy he is.  His smile may have changed some, but he has always been a happy boy.

As we get ready to send him off to Kindergarten, I am excited to see him grow.  But I am also a little sad that the little baby who met me in the airport 4 years ago is growing up so fast.

  And I think the winner is:

Finley's IEP meeting before school starts

 Today - I will share the pictures I took of Finley.  I was going to do Cainan's pictures today to go along with him meeting his teacher, but I forgot to take my camera to the school.  And then we had an impromtu meeting about Finley, so I went with her.  Tomorrow Cainan gets his day.

Today, I met with the whole team for Finley's start of school.  Besides her teacher and the principal - whom I have met before - today I met her 1:1 aide (whom I loved), her teacher for the vision impaired (who is going to be fantastic and has already started gathering products for Finley and signing us up for things), her orientation and movement specialist (who was really great and has a good handle on things at the school), the Kindergarten aide (who will sub for Finley's 1:1 aide if she is sick - she has been there a long time), and a specialist from Perkins School for the Blind.

I was blown away.  They pulled all of this together for the start of school with only a few weeks to work on it.  (remember we sprang our move on them at the end of June).  I expected to have some things in place, but all of this?  Wow.  I was really excited.

We spent an hour and half talking about Finley - how her vision is now, what may work/not work.  Things the vision people would like to see changed.  They were going to continue to work until school starts next Wednesday and then will see her quite a bit in the beginning until they get to know her better.

Once things gets settled, she will have her braille instruction on Tuesdays, Thursdays, and Fridays for 45 minutes each day.  She will see her orientation and movement specialist once a week.  She will have an occupational therapy consult once a month.  She will have the 1:1 aide in the class with her that will accompany her to all specials and any extra help she needs in the classroom

They are going to do a braille letter every Monday with the whole class and I am going to come in and talk about it.  Then we will do a project around the letter.  It is going to be a lot of fun.  Can't wait.  And the teacher for the vision impaired is going to work with the kids in the class as well and talk with them.  They have a lot of great ideas in place and I think it is going to work out great.

I was so nervous leaving Salem and starting over with this whole process after we worked for a whole year to get things where we wanted them for Finley in her old school.  But our new school has had vision impaired children before, the school has been remodeled within the last 10 years - some parts within the last 5 - and is easy for her to get around.

I breathed a sigh of relief when I left today.  All is going to go well, and I know the communication will remain open.  As her vision is always changing, so will her accommodations.  And I have confidence that we are off to a good start.

As I drove home it hit me (like it sometimes does) that this is serious and Finley does need help.  As normal as she seems to us, she actually needs all of these people to get through her school day safely and successfully.  I take for granted the sight she still has sometimes, and "forget" what we are really dealing with.  It is days like this that bring me back to the reality that is having a child who is vision impaired.

Kindergarten is going to be great.  She is going to have a blast.  There are 15 girls in her class and only 8 boys, so we hit the jackpot.  I can't wait to see her wings spread as she takes her first leap into independence.

I have one more thing I want to say.  I have been having a conversation with my friend Jennifer Stevens (see her blog HERE) about what we are doing for our kids.  Jennifer was our families inspiration to start a foundation of our own.  We saw what she was doing for her child with LCA and we knew we had to do the same.

She and I have been talking about families who have children with LCA but are waiting their turn for a cure to come along.  We both find this kind of surprising.  We know that fundraising is difficult and it isn't for everyone.

BUT....But.  Would you lay down and do nothing for your child?  This is the part that Mat and I have a hard time understanding.  Don't get us wrong - not everyone wants to, or is even able to do what we have done with our funds/foundations.  But to do NOTHING? 

You don't lay down and do NOTHING for your child.  A cure is at our fingertips.  But even if it wasn't - I can't imagine not doing everything I could to keep Finley from going blind.  When she is 15, and entering high school, and CURED - I hope that she is happy that we did everything we could so that she could see.  So that she sees every sunset.  Every friend.  Every mountain.

And if the cure doesn't come?  We know that we did everything we could.  We NEVER stopped fighting to save her vision.  NEVER.  All the fundraising, the constant pushing is all worth it.  Every second.  I wouldn't give it up for anything.

Life is hard.  Life is busy.  But that old saying "don't put off tomorrow what you can do today"?  Those are words to live by.  If I kept saying "oh, we will start tomorrow.  Start looking for that cure tomorrow".  Or worse - WAIT.  Wait for it to come to me.....where would we be?  With only 85 people in the country with Finley's type of LCA?  Where would we be.

You got it.....nowhere.  And Finley would lose her vision and become completely blind before it became "our turn".  Think about that.  She would GO BLIND while we waited.  Could you really live with yourself if that happened to your child?  I know I can't.  I would hate myself forever if I just did nothing.  Who lays down and does NOTHING for their child?  I don't care what it is - as a parent - our responsibility is do something.  Always. 

Life is 10% what happens to you and 90% how you respond to it.  When Finley graduates from high school, and she turns to us in the audience and SEES us - I will know that I made the right choice.  That doing SOMETHING was worth EVERYTHING.

Enjoy the rest of the pictures.

She started to get punchy and silly:

And I THINK the winner is: