The love of a brother and a sister

Anyone who knows us since Calleigh was born knows Ciaran has been slightly obsessed with Calleigh since the day she came home.  He was totally fascinated by her from the first moment he saw her through the glass into the NICU.  I remember holding her up and showing her to the boys and while they were all excited Ciaran just had a different reaction.  It was immediate love and devotion.

When Calleigh finally made it home he was always all over her.  I must have said a million times "Ciaran, get out of the baby's face".  He just couldn't help himself.  He has to be all in her space all the time.  When she was about three months old we went to the mall.  Calleigh still had her cleft lip.  Naturally, people looked at her.  Most people are surprised to see a baby with some type of deformity.  It never bothered me but people did look twice at her.  At the very young age of 3 years and six months Ciaran realized people were looking at her differently.  As we strolled through the mall he stopped me and said "Mom, I weally don't like all these people wooking at my sister".  I was so shocked he could tell people were looking at her differently.  It was in that moment I realized Calleigh would be protected for the rest of her life.  Regardless of her age no one will ever be able to treat her badly.  There would be consequences doled out by not one but probably three over protective brothers.

As Calleigh gets bigger he continues to smother her with his LOVE.  With all of her trips to the hospital he would get so upset.  He would cry and ask me if she was going to die.  He would pray for her at night and tell God how much he loves her. 

I'd say the past 1 1/2 years he would drive her crazy.  She would push him away, swat at him and tell him no.  All he wanted was for her to reciprocate all the love.  He would say "Mom, why doesn't she like me?  I just love her".  Even though she pushed him away he still persisted.  He never gave up hugging her, kissing her, carrying her but most of all just loving her. 

Now, you know we took her off gluten for sensory issues.  This was part of the problem with him always being near her.  She didn't want him touching her all the time.  When she wanted attention it was fine but when she didn't....LOOK OUT.  A few months ago he started filling her sippy cup with milk for her.  (This is the fastest way to get Calleigh to love you) 

For the past three weeks things have changed.  She suddenly loves him just as much as he loves her.  It's been a transformation.  She hugs him.  She kisses him.  She asks him to get her her milk.  She will now only take a bath if he goes with her.  When I change her diaper she says "Ciaran, lay with me".  To see the pure joy on his face is priceless.  He keeps saying "Mom, she really loves me".  She holds his hand.  She lays on top of him.  As I type this she is playing hide and seek with her brothers.  She just found Ciaran and tackled him.

She is also smart enough to use it to her advantage.  She wants for nothing.  All she has to do is ask Ciaran and he will do it.  She knows this.  She uses it.  But Ciaran is just so happy she is giving him attention he doesn't care what her motives are.

She has made so many changes lately and Ciaran is her biggest supporter.  He cheers and claps for her.  He carries her around.  He stays behind her on the stairs to make sure she is safe.  When she says something he says "Wow, Mom she said that so clear. SHe is getting so much better".  She loves to dance with him.  Their brother/sister relationship might be the cutest thing I have ever seen. 

The past few weeks have brought so many changes to our lives.  Drastic changes to Calleigh in so many ways.  While I am so grateful for all of these positive changes.  Watching Calleigh and Ciaran together has made me the happiest I could possibly be.  I honestly feel she has loved him the same all along but wasn't capable of all the affection or attention.  She couldn't handle it.  She now embraces it and it warms my heart and soul.

God Bless any boy that EVER tries to date her.  Seriously, he will have to get through three brothers first but his biggest obstacle will for sure be Ciaran.  I hope they always have such a magical relationship.

Ten on Tuesday

Haven't done one of these in a while....


1.  Today it is 55 degrees in January and tomorrow it will be over 60 degrees. I love it especially since last week was the coldest week ever!  We will be heading to the park.

2.  One of my new favorite sayings comes from Cormac.  When he really likes something he says "MOM upside down"  He cracks me up.

3.  Calleigh continues to be a happy little girl. She has yet to cry going into school again since she is gluten free.  I am at a loss for words to describe the transformation she had made. We go into the city on 2/14 to meet with the specialist on Celiac's Disease.

4.  I finally bought the boys beds.  They have only had box springs and mattresses since they came out of cribs.  It took me forever to find what I want and make it work in their room.  However, last night I went upstairs and they were all in one bed again.  I am starting to think I should have saved myself some money and just bought them one bed!

5.  Gluten Free shopping is very expensive.....

6.  Catholic Schools Week is going on.  The kids are enjoying all the fun activities planned at their school for the week. 

7.  Calleigh might know more sight words than the average 1st grader!  She is so funny how she can just rattle off the words.  I guess she takes after Cormac with her reading skills.

8.  Advanced Bionics is coming out with a new behind the ear processor.  It's set to be released this Summer.  It's AMAZING!!  It has some awesome features.  Now, will be get approved for it???  Cross your fingers for us.

9.  Basketball has started for the boys.  Cormac doesn't want to play.  He says he just doesn't like it.  Strange because he asked to play soccer, lacrosse and to do gymnasitcs.  He likes to only go in at the end when they play a game.  I told him he has to decide in or out.  He can't choose to play only parts of the game.

10.  I am totally ready for Winter to be over and for Spring to get here.  I am determined to complete as many triathlons as I can this year!  Now, I just have to get training again.

Coco Key

I took the boys to Coco Key for an overnight stay Sunday into Monday.  We were off from school so we needed something fun to do.  We were able to use the water park on Sunday sleep over and use the park again the next day.  The boys thought it was a fun adventure.  They think hotels are awesome for some reason.  Frank was working so he didn't come and I didn't take Calleigh.  I wanted the boys to be able to just do what they wanted without us having to worry about Calleigh.  The boys can swim and I don't have to be with them every second.  I would have had to stay with Calleigh every minute and been distracted from the boys.

This was our first time in a water park.  I never took them before mostly because Cormac was not able to hear in the water.  With the waterproof Neptunes things are different.  We loved them this Summer on the beach.  We loved them in the pool.  We now love them at the water park.  While I was there I kept thinking how difficult it would have been if he couldn't hear me.  I also kept thinking how much different the experience would be for him not being able to hear his brothers, friends and the life guards.  Not to mention all the other kids around him who were talking to him. I never brought them to a water park before because of this reason. 

On our second day at the park I looked down and saw a tiny little peanut of a girl and to my surprise I saw a bright pink Neptune!!  I got so excited.  It's so rare see someone else with an implant let alone a Neptune. She was a little one.  Only two years old. I immediately went over and talked to the Mom.  Turns out her daughter goes to NYU for mappings like Cormac and had surgery at the same place.  We chatted for a while.  I told her Cormac was in the lazy river and he would be very exicted to see another child with a Neptune.

A few minutes later I walk over to the lazy river and I showed Cormac the little girl.  He ran right into the pool and went up to the girl and said Hi.  He talked to the parents and showed them his Neptunes.  I honestly don't know what he said because I was not in the pool with him.  I figure he is old enough and perfectly capable to have a conversation in the water because of the Neptunes.  He was so excited and the parents looked thrilled while he was talking to them.  I know when Cormac was little it gave me such hope and comfort to hear other children with implants speak and see them just being kids.  It let me see how bright a future was possible for Cormac.  I hope he was able to do that for these parents who are new on this journey.

All in all the experience was amazing.  Cormac went down a HUGE slide that was totally dark inside.  I can't believe he wasn't terrified.  I went down after him and it scared me to death.  He loved it and to see him coming shooting out of it all smiles and hear us all cheering for him was awesome.

The night before we left weh I told Cormac where we were going he made this:

 

Here are a few pictures from our fun days in the water.

 

 

      

A New Calleigh?

Where do I start?  Many of you know already Calleigh has never been an easy kid.  She is loving and sweet and adorable but mostly on her terms.  She has some sensory issues and was also prone to tantrums.  I know, what three year old girl doesn't have them, right??  But to me  they seemed different.  A bit more frequent and a bit over the top.  You also never knew what was going set her off.  Bright lights or too loud music at a store in the mall, an uninvited touch by someone when she wasn't expected.  It was hard to predict.  I know some people might say she is a "brat".  I knew this wasn't the case.  I felt something else was going on.  It's not for lack of trying to figure it out.  I still say to this day some times I still feel like we are treating a lot of symptoms but not finding the main cause of her various unrelated medical issues.  A link has never been found between her medical conditions by an doctor or geneticist.

So why am I telling you all this?  A friend (THANK YOU JENNIFER ROOT) of mine shared an article on Facebook called The Gluten Made Her Do It.  When I read this article I could totally sympathize with this Mom.  While Calleigh is no where as severe as the child in this article I could relate.  It sounded like Calleigh.  I decided it was worth a shot to try eliminating Gluten from her diet for 30 days and see what happens.  I couldn't hurt, right?  She had her last Gluten on Saturday January 5th. 

On Monday January 7th Calleigh woke up and went to school.  She didn't freak out or melt down at the door.  She didn't almost vomit from crying at the door.  She was agreeable and went to school happy pretty much for the first time since school has started in September.  That day her teacher said she had an OK day.  Fast forward and she went into school Tuesday, Wednesday and Thursday HAPPY.  Yep, no crying.  No hysteria.  No looking back.  Each day her teacher said she had a "great" day.  Friday she was a little upset going into school but nothing compared to normal.  I realized later she had eaten gluten Thursday evening without me realizing it.  We are still new to this whole gluten  thing and they sneak it in EVERYWHERE. 

It has been like a magical transformation.  She is like a new kid.  She seems so much more pleasant.  She has been over the top affectionate.  Kissing and hugging like crazy.  She gave her teacher's aide a kiss on the cheek during class.  She doesn't have a melt down when you try and change her diaper.  She enjoys her bath.  It seems she is suddenly the child we always knew was in there but only got small glimples of in the past 3 1/2 years.    This is a kid who I didn't want to take shopping because for fear she would melt down and just scream the entire time.  It was actually starting to impact how much I did with her.  It sounds horrible but to take her with me when I was alone with the other kids could just be too much.  I hated I felt that way but it was the truth.  It's not something I talked about too much but it was my reality. 

I have been almost testing her the last few days.  I picked her up from school on Friday and before I got the boys I took her to Loft (shopping, her worst nightmare).  She went right into the store.  She said Hello to the lady working there.  She walked around smiling and laughing.  She was talking to the manequins.  I don't think she ever noticed them before because she would normally be too upset.  She never cried. She never got upset.  She played Peek a Boo with me in the racks of clothes.  She accidently hugged a stranger's legs and starting laughing when she realized it wasn't me.   It's usually not worth taking her because I can't get anything accomplished.  This was a whole new experience.  I even took her to another store after and she was the same way.

I also read this article about Gluten Ataxia.  The list of symptoms are frightening close to Calleigh's unexplained symptoms.  We have been trying to figure out her balance, growth, clumsiness for so long.  Could this be it?  Could we be on to something?  I don't know for sure but we plan on continuing Gluten free.  The balance issues won't resolve over night.  It's not clear if it goes away but they said you might see changes in six months to a year.  I need to figure out what doctor to take her to get the information needed.  I am praying if this is the cause of her issues we are not too late and we will see changes in the next six months to a year. 

She hasn't really noticed the change in her diet.  We are not all going gluten free but small changes in everything are simple.  We used gluten free bread crumbs for meatballs and no one noticed a difference not even Frank. (I don't eat it so I couldn't tell you.)  Pasta is the biggest issue but I found spaghetti made of corn and she loved it and it seems almost the same as regular spaghetti.  I think the hardest part is convenience items and snacks.  No more grabbing things on the go.  I need to know what is in everything. 

I don't understand why none of her doctors have thought of gluten.  This is a child who is seen by six specialists every 4 months.  She sees her pediatrician every six months just to keep track.  Not one of them ever suggested it to me.  Her pediatrician is awesome, trust me.  He comes highly recommended and has seen all my kids since they were born.   I somehow feel like I have failed her in some way.  I feel like I should have tried it sooner.  I cannot tell you how many hours I have spend researching possible syndromes she might have or not.  Gluten NEVER came up in all these years.  I am so thankful my friend, Jennifer, posted this article on her page.  Can I say for sure it is the Gluten??  That's a big NO but just the changes in her sensory issues make it worth all the hassle. 

Stay tuned....we just might be on to something. :)

The New Normal

I have heard this term so much in the last few months in regards to life after Sandy for so many people.  It sort of was getting on my nerves because when I looked around and saw so many people who lost so much and lives were turned upside down it seemed like too much.  Thousands of people are still displaced.  Many don't even know when or if they will be allowed back to their homes.  I just kept thinking "the new normal?" .  There is nothing normal about any of this.  No one should have to experience the aftermath of such a storm.

As a volunteer mentor for Advanced Bionics (Cormac's implant company) I speak to lots of parents of children who are just finding out their child can't hear.  They are in shock.  They are terrified for the future.  They don't know why it's happening to them.  I share my experiences with these families hoping I can help them through this most difficult time.  I tell them it's an amazing journey.  It's a journey one would never choose for their child but once you are on it you would never change it.  This journey is what makes your child who he or she is.  You will meet people you would have never had a chance to meet.  You will experience joy most other parents could never understand.  The first year is overwhelming and it seems like so much is going on. 

BUT do you know what I always tell these families???  I always tell them when I talk about our family?  It might not be normal to others but it just becomes your normal.  Your new normal.... At this point I don't even think of it as our new normal.  It is just our family. Our new normal is just our NORMAL.  If that makes any sense. We are just another family.

My hope for all those whose lives were forever changed by Sandy is that their new normal  becomes just their NORMAL.