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.

9/20/13

A Day in the Life


I think I might be able to say "I'm back".  I didn't intentionally take time off for the blog but summer just happened.  We were busy and exhausted by then end of the day.  At least I was!  I let myself off the hook this summer and instead of staying up every night making food and researching and what not I just read.  I think I read over 50 books this summer.  It was wonderful!!

But now I am way behind so I wanted to do a brief catch up on the kiddos.  I thought with Buddy the best way to explain him would be to give you a glimpse.  This was today:

 As we were getting ready to head out the door for Bunny's preschool I got an email from Boogie's teacher saying that there would be a birthday today.  (Translation: I needed to get a gluten free snack over to the school before 2:30. )  I started to load our stuff in the car so that we could swing by the school on the way to preschool.  

As I was loading, I called my friend to make sure she had heard as her daughter is also gluten free.  I was talking and trying to catch the little monkey that was climbing into my front seat at the same time.  He kept giving me the slip but FINALLY I got him buckled in and we headed off for the school.  The boy is freakishly strong for 2. 

When we got there I realized that because I was distracted on the phone, I did not see that Buddy's sandals were not in the car like he swore they were.  This meant that I needed to carry him (along with Bunny) all day starting with walking into the office.  Just to make sure we were all having fun Buddy decided to empty his entire water bottle on himself during our ride over.  So we went in soaking wet and trying really hard to see the humor.

That is my son.  He is a real life Dennis the Menace.  His curiosity gets him into loads of trouble.  When he is tired he doesn't get whiny....he gets naughty.  He has me on my toes more than any of his siblings before him.  He is very challenging.

And yet, he has the sweetest heart and the BEST smile.  He always asks for Bunny when he is not there.  He notices when one of the kids from Bunny's preschool is missing and worries about where they are.  As much as he is naughty he is hilarious and charming.  It's impossible to stay angry with him.

He started preschool a few weeks ago.  Just one day a week but he loves it.  I thought some big boy time would be good for him.  I was worried he would miss me too much.  He has become my little momma's boy shadow this summer.  We talked a lot about "mommy always comes back".  He is VERY excited to see me when I get there and he has a great time.  It's perfect.

With Bunny in preschool for three mornings a week, we get to spend lots of time together.  He is my little buddy and I am cherishing this time and am so grateful I get to soak him up by himself for a few hours.  Much of the twins life has been a blur so it's nice to slow down and see them as one little person.  I think it's also good for our relationship because it's easier to enjoy his mischievous ways when I only have him to watch.

And that's my boy in a nutshell.  Wild crazy and charming.


7/12/13

Big Boys

I think this was April
3months later


People keep telling me that Bunny looks so much bigger recently so I decided to take a picture of the boys in their chairs like I did a few months ago and see for myself (very scientific I know).  Look at the difference!  Bunny's head is so much higher in the chair!  He looks so much more mature too.  The first picture was only 3 or 4 months ago!

I will be the first to admit that the hair plays a part.  The first picture was right after haircuts.  Daddy and I decided we like their longer hair better.  We need to trim up the sides desperately but it's one of those things I avoid because it costs money and is not very fun for any of us.


I wanted to post this picture too as example of the glimpses  see of their twin brotherness.  They look alike to me here even though Buddy was a face shaped more like Baby (and me) and Bunny has a face shaped more like Boogie (and Daddy)

Incidentally, they were not depressed or having a terrible time.  I think Buddy was pouting because I was trying to take his picture and Bunny was mesmerized by the moving ground. It is pretty fun that I can put both of them on this swing now.  Bunny may not be able to hold his balance as well but that boy can hold on like a bull rider!!

Love my boys!

School Boy


This was a big week for my Bunny Bear.  He is now officially a preschool boy.  It was a strange week of adjusting for all of us but I think it's going to work.

On Monday, Buddy and I went with him and stayed the whole time.  It's 2 hours on Monday and 3 hours on Wednesday and Thursday.  Bunny wasn't super interested in the other kids or activities but I'm hoping that will come with time.  He didn't look around for me or seem upset when I wasn't with him but when I sat next to him I got a big smile.


I was surprised that the kids at the class were completely different kids than the ones I met 2 months ago.  I was originally very happy that Bunny would be in a class of non walkers so he wouldn't get trampled.  Imagine my surprise when we show up on Monday and not only are there a few more kids but they can all walk but one!  I think it will be okay though.  They have one on one for the kids the whole time.  There are also two other sets of twins which I love.  All of the kids are very sweet too. 


Tuesday we dropped him off.  It was so weird for the three kids and I to not have Bunny with us!  Buddy kept asking where he was.  But we survived and so did he.  We got big smiles when we picked him up. 

Signing "Mom"
I also met the therapists this week and I especially like the OT and think I like the other two.  All of the teachers and helpers seem to genuinely like and care for the kids.  I hope I will get a few more chances to go with him to class so I can observe more.  It feels weird to drop him off and then have no way for him to tell me what he did in those 3 hours!  I feel cheated of moments!


I feel like he is on the verge of some major breakthroughs. He is picking up speed for sure.  He pulls to stand on anything with a ledge for him to grasp.  He can now 4 point crawl with just one of my hands to support his belly (Before I also had to wedge his legs because he likes to "tripod").  His signing and speech is really taking off.  He signed "Mom" for the first time this week.  He now signs "Please" (been working on that forever!)  Tonight when I was singing "Slippery Fish" to him he did the "Oh no!" motions and said it without my prompting.  I also heard a "Little Star" last week when we were singing "Twnkle Twinkle".  He is also putting two signs together like "More Water". 

 

Last week he started hitting his head with his hand at random times kinda hard and poor Daddy was freaking out.  After watching when he was doing it, I figured out he is trying to sign "star" or "sticks" and sometimes "mom" I think.  It seems to be his default sign for things he can't quite do or has forgotten the sign for.  Pretty funny!

I am glad I went with my gut on this one.  I think the preschool is perfect for him right now.  He seems to be wanting input and the preschool gives lots of it!  I am pretty sure I have already been red flagged as an overbearing mom because I told the nutritionist that we see that I was shocked and appalled when the kids were offered candy at snack time.  She was also shocked and works with the OT.  It was pretty obvious to me that something was said because on Monday I got a very long explanation for why they might give candy.  I told the OT that if they want to make suggestions about textures to me I would be happy to find a healthy substitute for him.  Oh they are just going to loooooove me!!  Ha!

6/30/13

Hummingbirds


 For Mother's Day this year I told the girls that I have always wanted a hummingbird feeder.  I am honestly not a huge fan of birds in general as I think they are dirty but I do love the hummingbird.  They are so tiny and quick and magical.




I put my feeder right outside of the window where I do dishes so I can watch them.  We see quite a few but today the feeder was THE place to be!  I think the poor birds are dying in the heat.





Swimming!

It has been HOT here!  In our area it usually cools down to the 70's around 7pm even on the super hot days so we have never missed an air conditioner but we are in the midst of a MAJOR heat wave and as I type it is just finally at 75 (it's 11:00pm).  As I was laying in bed last night sweating and trying to fall asleep I decided we needed to skip church and hit the pool today.

The pictures are not from today but they are cute and on topic


Our local Y has an indoor pool which is muggy but at least I don't have to worry about Bunny turning into a lobster.  I had already told the girls I would take them to the outdoor aquatic center but I wanted the boys to have a chance to cool off too so all of us packed up and headed to the Y for a quick swim.  I knew I could never manage both boys myself even in the kiddie area and I have been dying to get Bunny in the pool for therapy.



We had SO much fun!!  I don't really have to worry about the girls there because the whole pool area is somewhat shallow and they can both swim.  The kids area is super shallow and has a slide and squirting water features.  The boys were in heaven!  Daddy and I had permasmiles the entire time because we were having so much fun with the boys.



We ran home for lunch and to put the boys down for a nap and then the girls and I headed for the aquatic center.  We had never been but knew it had a kiddie area, 2 water slides (Boogie is obsessed) and 2 huge pools to swim in.  The place was PACKED.  I knew it would be which is why I chose to go to the Y with the boys.



Boogie immediately got in the waterslide line while Baby and I worked on her swimming.  I had Baby swimming last year when we had our above ground pool but she is nervous when she can't touch the bottom so I have been wanting to practice with her when I am there so she can gain confidence.  It's hard to practice in a pool jam packed with people but we made do.  She can now tread water and will swim around in areas she can't touch the ground in.  Success!  Of course we will keep practicing!



Boogie surprised me today.  She has always been somewhat timid when it comes to trying new things.  She usually wants me by her side.  First, she walked right to the line of the waterslide and then waited in line by herself while Baby and I hopped in the pool nearby.  Her little face coming out of the waterslide was priceless.  She was so proud and having so much fun.  We both went on the waterslide later while Baby waited for us at the bottom and the girls got quite a kick at seeing Mommy ride a waterslide.  Waterslides were always my favorite thing!



Later I suggested we go check out the other pool.  It is 13 ft deep and most areas are for lap swimming but they have 2 small sections for rec swimming.  The areas are next to a high dive.  Boogie saw the high dive and begged me to let her try it.  Again...this is my timid child!  So she stood in line with a bunch of teenage boys and waited for her turn.  I could tell she was getting nervous as she got closer but she climbed right up.  I stopped myself from yelling "jump way out!" (being forever traumatized by the Greg Louganis incident) and just watched her.  She walked right to the end and jumped off like a pro.



When she came up for air she had the BIGGEST smile on her face!  I was SO proud of her.  My little girl is getting brave and I love it!

Fun time was definitely had by all today....especially mommy.  I am exhausted but in the very best way!

The Comments

I really try to be a good larger family mommy ambassador.  I want the world to know that having 4 kids is not that big of a deal.  Having 2 and then twins?  Challenging yes..but not unmanageable. 

To me, being a good mommy ambassador of the larger family means not being that hassled mean mommy dragging her kids through Target barking orders.  It's being the woman who has a smart and polite answer for all of the "Wow!  You sure have your hands full!" comments.  I hear this comment a million times a month and I want to find the perfect answer.  One that isn't smartass or make my kids feel like a burden.

Let me give you an example of how NOT to be a GMALF (good mommy ambassador of the larger family shortened from here on out because it's 10:20pm and I have a lot of laundry to fold!) :

Friday we had to change our "Fun Friday" plans to take Baby to the Dr.  Poor Baby had an ear that was all clogged up and painful.  I try not to drag all of us to the Dr at the same time but because it was short notice I had no choice.

Opportunity #1:  We walk into the office and a women with 2 kids is walking out and says

"Wow!  You have your hands full! (shocked face)  Are they ALL yours?" 

(Now keep in mind that our Dr has 4 kids himself and their picture is displayed in every room.  4 is not the Duggars people!  In fact..most of my friends have 4 kids!)

I said yes to the lady and smiled and she said "I don't know how you do it!!"  I decided to go with my humorous response and said "Lots of coffee!".  It got a laugh from all the ladies in the office and we made our way to our room and got settled but I really don't LOVE that answer.  It makes me feel like I am agreeing with the original asker that 4 is way too much to handle.  At least it isn't rude.

We left the Dr with a prescription for a case of swimmers ear and headed to Target.  Our Dr is about 40 minutes away and the kids were ready for a snack so I figured we could stay local and get a snack at Target and sit in the Starbucks (ironically) while we wait for the prescription.

I made the very stupid mistake of giving Buddy his way when he said he wanted to sit in the cart.  I put Bunny in the strapped in seat and let Buddy sit in the big basket area.  If you are going to be a good GMALF you have to make sure you are not adding to what could already be a stressful situation.  Buddy kept trying to stand up and I kept repeating "Sit on your buns!" while I started to stress sweat (coincidentally I remembered as I started to trickle sweat from my forehead that I forgot to put on deodorant that morning because of course I use crunchy homemade deodorant and of course in the heat it was melted and I needed it to firm up in the fridge and then forgot about it)

We dropped off the prescription and paid for our snack and then strolled over to the Starbucks.

Opportunity #2:  A lady was sitting at a table watching our chaotic show of ordering drinks and handing our snacks and said

"Wow are these all yours?  4!  What a blessing!" 

Ready for my big fail?  I mean she made it so easy for me.  All I had to say was "Yes they are" and what does bad bad mommy say?  "Somedays they are!"

I immediately felt terrible.  Talk about making your kids feel bad.  The girls didn't hear me because they were too busy fighting over the snack at the table but that was a major fail. 

Opportunity #3:  Being guilt ridden from my mean comment I decided to let the kids ride the money trap rides in the mall.  They had a blast and we spent a bundle of money but it reset my mood.  Right as we were leaving a women came up to me and said

"You have a beautiful family!

And I finally got it right and said "Thank you.  I do"

Maybe it is just our area but I feel like 4 is the new 17 when it comes to kids.  The last ladies' comment made my day because I really do feel like each and every one of my kids is such a blessing and I am so lucky to have them.  Yes things do get hard.  Daddy has been working A LOT which makes my days very long but I have been trying to focus on the blessing that my babies are.  Which is why I want to be a good GMALF.  I want my kids and the world to know that I count myself as one of the lucky ones.


6/24/13

My Birthday

A few months ago we were offered free tickets to the aquarium through Hope Services.  Bunny gets his PT and EI teacher through Hope so we get lots of free events and fun things from them.  We could ask for as many tickets and we wanted but the only drawback was that we had to name a specific date.  Daddy is going into summer mode which means he works most Saturdays and this was definitely not a trip I would do solo so I decided my birthday would be the perfect day.



As soon as I decided we would go for my birthday I also decided I would have more fun if the adult to child ratio was a little higher so I invited my dad to come with us.  Turns out he had NEVER been to the aquarium!  My mom went out of town on my birthday (the nerve!) so it worked out perfectly.



The kids were really excited.  This is not a cheap outing for us so we only get to do it every few years and the boys had never been.  I kept telling the boys we were going to see the fishies.  In fact when I woke Bunny up the morning of I said "You ready to see fish?" and he signed fish.  My little smarty!!


As you can see I did not get much sleep the night before.  Boogie had a bloody nose in the middle of the night and Buddy woke up at 5:00am.  Fortunately, everyone behaved themselves and we had no major meltdowns.  It helped that Daddy brought me Starbucks in bed to start the day!


My favorite is always the seahorses.  I think they are amazing.  Bunny and Buddy were not all that impressed with them.  The jellyfishes were by FAR Bunny's favorite.  I would hold him up to the aquarium and he would get the HUGGEST smile.  It might have helped that they were doing a groovy theme with jellyfish and had lots of lights and mirrors....two of his favorite things.  I myself just think "ouch" when I see jellyfish. 


Our aquarium has a few activity/learning centers for kids and we went through one of them and smartly avoided another one (splash zone?  I learned my lesson the hard way a few years ago.  $30 is a lot to pay to have your kids splash in water for hours on end!).  Buddy and Baby had a fabulous time at the touch pools.  The Bat Rays were not close enough to touch this time but they were fun to watch.



Towards the end of our short but productive time there it did get quite crowded.  My mom always says she hates the aquarium and that she is scarred from overseeing field trips there.  I totally get it now.  They keep most areas very dark so you can see the tanks and when there are a million people and it's dark it's easy to lose people.  I had a few mini heart attacks. 



It really was great fun.  I love doing stuff like that and it's fun to experience it through my children's eyes for the first time.  But we weren't done having fun yet!


I also decided that since we were so close to the beach that we should make a quick stop and let the boys experience the ocean for the first time.  Buddy was in hog heaven!  Notice my Dad's tight grip?  He would have ran right in if we let him!  He has not developed his healthy fear of the ocean yet. 



Baby, however, is completely traumatized from our last trip and she would get nowhere near the water.  Boogie got bowled over by a sleeper wave a few years ago and she is still a lover of the ocean.  The last thing I said before we got out of the car was "If your clothes are wet you are not getting back in my car".  She rode home in her shorty shorts.



Bunny, lover of water, was also a huge fan.  I didn't get a picture of him with his feet in the water because I was the one holding him but he loved it and even stood holding my hands for 2 minutes watching the water. 

It was a perfect first beach experience because we weren't there long enough to get burned and super sandy but long enough to make a good memory.  It was also a perfect way for me to confirm that there is NO WAY I am taking all 4 kids to the beach by myself.  So hopefully the boys hold onto this memory for a good long time.

It really was a great birthday.  Daddy kept telling me today what a fun time he had yesterday.  We may just have to do it again next year.