10/23/13

Buddy Walk!

This year was our first Buddy Walk.  Well, our first Buddy Walk with an official team anyway.  Daddy and I went when the boys were tiny just to check it out and meet people but we didn't have a team. I wasn't ready that year to "celebrate" Down syndrome.  I was so nervous before the event because I was afraid I would feel overwhelmed or see things I wasn't ready to see.

Some of our team. 

 But as we all know, I have changed a lot in the last two years and this year I was ready to celebrate!  In fact as we started the walk I immediately teared up and started feeling sobby because I was so proud of our family and the fact that we WERE here to celebrate. 

My kids were super excited about the Buddy Walk and Buddy can tell you all about the walk and how it is for Bunny and people that look like Bunny.  (The boy can pick out people with Down syndrome.  He says "They are like Bunny!")  Look at those proud sisters holding up signs!

And speaking of sisters, mine drove 6 hours after working all day Friday just so she could support her nephew!!  #1 Auntie. 

Of course my parents were there too.  I don't think I could have stopped it if I tried....not that I would!  And to show his appreciation, Bunny started signing and saying "Grandma" on Saturday.  We are still working on "Pa". 

I wanted a football theme because Bunny is obsessed with football.  When football is on the tv you better not even think of changing the channel because Bunny will throw a FIT!  Of course mommy will never allow him or Buddy to play football but we can crush those dreams later.

This is my friend from high school.  We have seen each other a few times over the years and I was so touched when she joined our team.  Her daughter came too and it was so fun to see them! 

This is Bunny's favorite teacher.  She was our EI for a year until he started preschool.  We still keep in touch because I love her (and so does Bunny!) and she said "of course" when I asked her if she wanted to walk with us.  We just adore her!!

Daddy's brother also walked with us.  I told him he was #1 uncle.  What single guy gets up early on a Saturday morning to walk in support of his nephew?  #1 Uncle does of course!!

My friend who also has a baby with Down syndrome also walked with us. Her son is still pretty young so when I told her about the Buddy Walk I asked if she wanted to join our team or walk as their own group.  Had I known anyone that first year I would have loved to join their team so it wasn't just Daddy and I walking with the boys.  They joined our team and I loved having them.  I adore her son (and her other kids) and it's fun to share an event like this with someone who gets it! 

Someone has mastered the fake smile
Speaking of getting it, I am not sure how much Bunny got about this event.  All his favorite people were in one place but I'm sure he didn't realize the whole day was in his honor.  I hope as he gets older and our team gets bigger and bigger that he will understand how much we all love him!!




It was a wonderful first real experience.  There was so much love everywhere and we just had a great time.  It is definitely something we will be doing from now on.  Oh and for being one of the first teams to raise $2000 we won an ipad.  Not to shabby for first timers huh? 

10/6/13

This Girl


Today while we were waiting for Daddy to get home from work, the kids and I sat around in the family room just hanging out.  Boogie came over to me in the chair and cuddled up next to me and I realized that I finally feel like I have my girl back.

We have been on quite a journey, this Beauty and I.

Last year I noticed that Boogie was getting increasingly angry and aggressive with us.  She was mean and angry a lot and it seemed out of character to me.  Then she started having these crazy tantrums.  One little thing would set her off and she became completely unglued.  Throwing things. Screaming.  Hitting me and Daddy.  I couldn't talk her down.  I have ALWAYS been able to talk her down

People told me I needed to set better boundaries with her.  I wasn't being strict enough.

I felt that something was really wrong.  The way my baby was acting did not match her heart.  My Boogie has always been kind hearted and compassionate to a fault.  I couldn't reconcile that girl with the one that was screaming at me and raging out of control.

I began to express my concern to a few people.  I heard theories of bipolar and oppositional defiance disorder.  I googled and read.  I was terrified but I knew that whatever it was we would get through it.  I just knew something was off.

Things got worse.  The rages were happening all the time.  She was refusing to go to school.  I was afraid when I was alone with all the kids because it was too much for me to handle alone and manage the other kids.  She never acted out at school but at home she was a nightmare.

I cried all the time.  I felt hopeless.  I felt like a horrible mom.  I felt alone.  I felt like I was in hell.

I began to read about food allergies.  I googled gluten intolerance and behavior.  There was not a ton of info out there but enough to make me think I was on the right track.  I kept food journals.  I started noticing things.  When she was in a rage her eyes were dilated.  She also started doing some nervous tics.  She was beginning to have ibs like symptoms.  Her eyes were puffy and her face looked dark to me.

I decided, after a particularly grueling, agonizing week that we were cutting out gluten.  Daddy thought I was crazy.  CRAZY.  I told him to just let me try.  I also got her in therapy.

Things started to calm down.  We still had some rages here and there but I knew that it could take awhile to see results.  I could tell when she cheated.

Then one night she had pasta.  She was fine at first.  Told me I was wrong and she obviously wasn't allergic.  Then almost 24 hrs later she threw up.  She had eaten normally the whole day and just finished dinner.  What came up first?  The pasta she had eaten 24 hours earlier.  Completely undigested.  It was crazy!  After than night she was on board...Daddy was too.

I spoke with an allergist earlier this year about our history and he says it is very likely that she has celiac.  We have not had her tested yet but we are very vigilant to read labels.  She knows all the code words for hidden gluten.

When people find out we are gluten free they say things like "Oh I could never do that".  Let me tell you, if you were losing your child before your very eyes you would do it in a heartbeat.  I will never look back.  It is worth every sacrifice I make and every donut not eaten.  I NEVER want to go back there.  I know that people think I can be extreme with our food but it is only because I am a believer in how the wrong food can mess up your body.  I have seen it first hand.  I use to let Buddy and Baby cheat occasionally until I started noticing that Baby was overly emotional on the days of her class parties.  So now no one cheats.

We have still had some lingering digestive issues with her so I have taken her off of corn and dairy for the time being and finally things are calming down.  I will let her slowly introduce them at a later date and see how she tolerates them but as this point I want her body to have a chance to heal.  She is also taking a good probiotic and we are experimenting with fermented foods.  Lucky for me she is pretty adventurous food-wise.

I asked her if I could post our story.  At first she said no.  She was embarrassed.  I told her that the gluten was making her have the rages and that anyone that knew her would know that is not who she is.  Then we talked about how putting our story out there might help some mom and some kid some day and she agreed.

Since we made the change I have seen similar stories online.  We are not the only ones.  I would hate for any parent to have to go through what we went through.  Hopefully, someone googling for help like I did will fall upon this post and find a possible answer.

Boogie loves school this year.  She is ready for school on time every day.  She does her homework without being asked and is getting straight A's.  She loves to help me in the kitchen and is always happy to go outside with Buddy or do some therapy with Bunny.  She is quite the fashionista and is usually styled and accessorized from head to toe.

Does she still sass me from time to time?  Absolutely.  She is 8.  Practically a teenager.  I will take the sass over the rages anytime.

I am so so glad to have my girl back.

10/1/13

National Down Syndrome Awareness Month


October is Down Syndrome Awareness month.  While I am not naive enough to believe I can blog every day of this month, I would like to kick off the month with a few words about down syndrome.

Truth #1:  Down syndrome did not end our life.

Do we have more therapy appointments then our friends?  Sure.  But that's just our new normal.  Many of Bunny's therapists have become my good friends and we have met many wonderful people in the process.  It has opened my eyes to a whole new group of beautiful children and I am forever grateful.

Truth #2:  You will love this child until your heart bursts!!

I have heard more than once that parents have a hard time connecting with their baby with down syndrome at first.  This was the case for me.  Now I feel an overwhelming love for him.  This boy brings so much joy to my heart!!  He plays hard to get...he is still holding out on saying "mama" but I know he loves me too.

Truth #3:  You will see the beauty in Down Syndrome

I never thought I would be typing those words.  My favorite kiddos on Instagram are Bunny's buddies with an extra chromosome.  I don't feel sorry for them or think of them as unfortunate.  I think they are some of the most beautiful kiddos and adults around!  I would have missed this change of heart had it not been for my son being born. 

So there are just some things to think about whether you are a new parent of a baby with down syndrome or even if you have no children with down syndrome. 

This year we are doing our first Buddy Walk.  I am so excited to celebrate with our community.  I never thought I would get there but I am.  We have lots of friends and family coming out to support my boy and it makes me happy that through our family other hearts can be changed as well.