Grandma

Colleen has many people in her life who love her.  One remarkable woman is Ray's mom, who has embraced each of my children with love and delight.  We are fortunate she lives closeby and she genuinely "gets" each of my children.  James and Claire love talking with her and spending time with her.  Colleen gets so excited when she sees Mary Ellen.  Her smile simply radiates when Grandma walks into the house.  And, like most people who encounter Colleen, Mary Ellen is lifted by Colleen's vibrant personality. 

I can't say it was easy to tell those close to us that Colleen was diagnosed with Down Syndrome.  Ray and I decided to wait until it was confirmed, and to treat her as our baby first.  We knew about her heart defect before we knew for sure that she had DS, so when it was confirmed that she did in fact have an extra 21 chromosome we started to tell our family and close friends.  Shortly after Ray told his mom, she came over to our house to let us know that she was going to treat Colleen just like our other children and she would love her just as much.  I still remember that evening.  I was exhausted, overwhelmed, and a mix of emotions, and Mary Ellen declaring her love and support for this little girl was just what I needed.

There was a period of time when Colleen went through separation anxiety.  I think she was around 12-15 months old.  It went on for along time, like many of her stages, and the only people she would not cry for were me and Mary Ellen.  I have to say she is still Mommy attached, like all of my kids, but like all children she has outgrown it.  At least during that time I could have Mary Ellen watch her for the times I needed to leave her.  In a way it was reassuring because showing separation anxiety is a good cognitive milestone, showing good cognition on her part.  So I just kept telling myself that it was a good thing, and it too shall pass.

Thank goodness for Mary Ellen.  She is such a gift to my family.  And she is always greeted with the smile that lights up the room. 

A Little Girl Longer than Most

I missed a few days.  I figured it was better to get some sleep and perhaps I can even write two a day.  This weekend was busy but awesome.  I ran in my first half marathon in 10 years.  It was such a great feeling to tackle something that long, to be part of a big running festival, and to do it with a brand new group of friends.  After that, it was constant kid time.  By the time I get to the end of most days I feel like my head is spinning.

The days seem to go by so fast, everyone is getting older, and there are times when I just want to slow it all down and keep them young.  Other times, I am ready for more independence.  A great scene in the Office wedding Thursday night was Jim and Pam taking mental snapshots with their hands. I am going to start doing that.  It may even help to lighten the tone when things are rough, like taking a pretend photo of Claire trying to get dressed in the morning. Today she wailed because she wanted to wear shorts.  Really too cold for shorts, but I was willing to let her try even if it meant missing recess.  She went with capris.

Now to get to the title.  When Colleen was about 4-5 months old I found myself in my favorite store, Target, in the coffee/food section.  I probably had a Starbucks and both older kids were in school, James in K and Claire at afternoon preschool.  Colleen still had a nasal feeding tube but it was post heart surgery.  She was still small and had this plastic thing attached to her face.  Okay, so people look.  I was probably trying to get her to eat from a special bottle and then was going to put the rest of the milk down her tube.  Feeding her required thickening her food, lifting her chin with a finger, and squeezing her cheeks.  Not the typical babe with a bottle.  I caught the eye of one woman, looked like a mom of a bit older kids, and she had a nice but curious look to her face.  She probably said something, which opened the conversation, and then I got to tell the short version of Colleen: DS, open heart surgery, trying to teach her to eat again, etc.  She looked at me and said, "You will have a little girl longer than most."  Who would not want to have a little girl longer than most?  It was a great comment and one I go back to, similar to first the heart the rest will follow.  Touched by a stranger.

Colleen is the little girl I will have longer than most.  When Claire was three she insisted on wearing only dresses no pockets, buttons in the back.  Colleen, I can put anything on her, she is happy.  She still loves to play peek a boo and itsy bitsy spider.  It is easy to make her happy, and while she does have fits it is not the long drawn out battle of wills that some three years engage in. 

I know that one day she will be grown up and ready for her own life, her own adventures, her own story. In the meantime I am going to savor having my little girl longer than most.

Playgrounds

As I watched Colleen walk across the moving bridge that was part of a playground near Claire's soccer practicetoday, I marveled at her accomplishment.  Colleen started walking at two and a half years, but before she could walk she loved playgrounds.  She really developed her gross motor skills last fall when her brother James had twice a week soccer practices at the local elementary school.  While he was practicing, Claire, Colleen and I hung out on the playground, usually with the son of a friend that loved to play with Claire.  Colleen was not walking, barely cruising, but she could climb.  And slide.  She loves the slides.  In just a few short weeks she became more confident in her control of her own body, and had a blast at the same time.  I remember thinking that on most nights from 5:30-6:30 we would be home cooking/eating/playing, but intead all of the extra time on the playground helped develop her confidence and skill. 

She still loves playgrounds, but now that she is walking she is really in charge.  She struts around, almost saying with her body "watch me."  And while I can't say she is doing everything a "typically developing three" would be doing, she is pretty close.  Now she wants to master climbing up the slide. Can't say I am upset that this is hard for her right now.

Playgrounds are also a very inclusive place.  There are kids of all ages, all abiliites, all everything.  And generally I am pleased with how other parents accept her.  Kids have no problem with her, unless they try to tell her something and get her to respond.  Most parents are friendly.  Most parents encourage their kids to introduce themselves.  I do have to watch the munchkin as she likes to push other kids.  It is a hard habit to get her to break.  And I have to follow her when she gets up in larger playgrounds, especially ones that have openings for things like poles or bars, but it is a small price to pay for that georgeous grin.

The Chapman Boys

It is late.  I need to head to bed.  I was thinking about what to write about today, and I thought back to a surprise visit by two of Colleen's cousins today, Cory and Kevin, both college students at Towson.  They had stopped by to pick something up, and Cory went to say Hi to Colleen who was watching a TV show with Claire.  Within a minute she had made her way to the front of the house and the next thing I knew she was in Kevin's arms giving Kevin a huge hug.  Massive hug.  Hug that goes right to your core.  These are the hugs that sustain me during a trying day.  Cory got the same hug, too.
 
This girl loves these boys, and the feeling is mutual.  Colleen has a way to bring out the best in people, and from the time she was little she has connected with the Chapman boys, Brian, Kevin and Cory.  They engage her, play with her, give her affectionate hugs, and talk with her just like any other child.  These boys have also been great with Claire and James, but they have really bonded with Colleen.  I hope it lasts as she gets older and loses some of the baby sweetness. I am sure we will all adapt, but I imagine Colleen will always be able to charm their socks off.  At least I hope so.  Kudos to Diane for raising such great guys.

Meals

It was a whirlwind day. The kids headed off to school (including Colleen for the morning) and I set off to do some warehouse and grocery shopping, and to prepare meals for two local families and the meals for a cooking co-op I am part of with friends.  I think I ended up with nine trays of food of two different recipes.  But what was most important were the ones for the local families.  One was for a friend who had her fourth ankle surgery who has four young kids, and another was for a family in my moms club that welcomed their second child. 

When Colleen was born, the Moms club I am part of organized the traditional five meals, and having a homemade meal delivered to your door is one of the best gifts for a new mother.  Then when it was discovered that Colleen had a heart defect and needed lots of doctor appointments and extra monitoring as we tried to get her big enough for open heart surgery, friends organized a meal a week for us for three months.  A friend I worked with organized teachers at my school (who are super busy in the fall) to also make a meal a week, she volunteered to deliver them, so twice a week we had a great meal.  It was such a gift when I was going through a challenging time.  So, while I am happy that my meal prep is finally over for the day, it was a good use of my time. 

It is funny how some of the meals stood out, not always for the food but for the person who delivered it.  Just prior to Colleen's surgery, and Instructional Assistant from Arubutus brought us a meal.  We had a nice chat, she was always someone I was friendly with but did not necessarily know well.  I found out later that she was about to go into surgery herself to remove breast cancer.  She never mentioned it.  She insisted to my friend that she was making me a meal.  Unfortunately she died last December after her cancer returned, and I cried and cried that this world lost such a generous soul.  One friend delivered not only a meal and the best brownies Ray ever had, but also bags for each James and Claire full of things to do while waiting at the hospital when they visited Colleen.  One peach pie stood out, especially since I thought it was apple when I bit into it.  A homemade pizza kit wasa hit, I need to track that recipe down now that I am thinking of it. 

It is amazing how the gift of a meal can help a family during a challenging time.  It is something I do not forget.

Anniversary

Today is my wedding anniversary.  It was a georgeous day twelve years ago, bright clear sky, crisp air, lots of fun celebrating with family and friends.  I am looking forward to getting out for a quiet dinner with just Ray, as we rarely get to do that these days.  Life is busy.  I am not sure I realized how busy things could be with three kids.  And Colleen is in a very busy stage of life.  Even though she is three years old, it feels like I have had a 18 month old for months and months. 

I wonder what I used to do with my free time, it seems such a long time ago when the only person I answered to was myself. I wouldn't go back and make any changes.  I was excited to get married. Still happy to be married, most days.  I really wanted to have kids.  I always pictured myself with three kids and a dog.  And here I am.  But, boy is it busy!

.I know Ray and I need to make time for ourselves, for our relationship, people keep saying that.  But it is hard to make happen.  Perhaps I need to demand it more, to set up the babysitting, to make the plans, so we can spend time as a couple, working on this thing called marriage, because our marriage really depends on it.  And our kids need us to do this!

Twelve years married, three kids, three dogs (one dog living), and hopefully many more years to go.  But three kids is all I am in for!

And Dog makes Six

Colleen loves dogs.   In fact, it is one of her clearer words, evolving from da da da to a noticable "g" sound on the end.  Her brother and sister love dogs, too.  Before Ray and I had kids we adopted a collie shepherd mix from my sister Cheryl, his name was Riley.  He was a great dog for us, lots of personality.  He died when James and Claire were 2 and 4, and James cried and cried.  We all did.  We then adopted Brandy, a sweetie that also came from North Carolina who needed a new home.  She loved to run and loved the kids.  Unfortunately, she had epilepsy and it got worse shortly after Colleen was born.  But Colleen adored her.  Brandy let her do almost anything to her, she loved the attention.  Brandy died a month before Colleen turned two. I don't think Colleen understood what happened, just one day the dog was not here.  Claire and James understood, and I still get questions, they still miss her.  We read Dog Heaven and talk about Brandy and Riley.  They have stuffed animals that look like them, Claire still sleeps with hers.  They miss their doggies.

We needed some time.  We have never had a puppy, and honestly I don't think I have it in me to train a puppy.  I did not start looking for a dog, sort of hoping a dog would find us.  Well, today we are adopting a dog that needs a home.  His first home did not work out, my understanding is they were a bit overwhelmed with life and he was left outside to bark, and a friend has been taking care of him for a few weeks.  He is a yellow lab, about one year old, he passed the Colleen test (hands to mouth and face, no nipping) and the Ray test (good dog, likes that he is a he) and he will meet Claire and James today when we go to pick him up to bring him home.

The kids are ready, Ray is ready, but I am ready?  Guess I will just have to jump in and do my best.  I know he will be great for our family.  And I know Colleen will love him and give him lots of attention, plus treats from her high chair. And James and Claire need a dog, they love their cousins dogs and really miss having one.  Gulp!

Welcome Cody! I will post pictures on FB soon.

31 for 21

I am a few days behind but a friend has inspired me to join the blogging community this month that is called 31 for 21. October is Down Syndrome awareness month so the goal is to blog for 31 days about having a child who has an extra 21 chromosone. Many of you know how I feel about the ray of sunshine, aka Colleen, but here is my chance to write about her and all the ways she has affected me, my family, and our community. If you would like to post a blog about Colleen as part of my 31 for 21 let me know, that would be awesome.

When Colleen was born and we were told she may have Down Syndrome, a friend told me on the phone that I would always be loved. During those first days, weeks, and months, I held onto her words, as I really didn't know if I had what it took to be a mother to person with Down Syndrome. I did not know anyone well who has Down Sydrome, nor did any of my friends have children with Down Syndrome, so I was in new territory. Colleen also was diagnosed with a heart defect when she was 7 days old that would require open heart surgery, and after an old friend commented on a sentence in an email "First the Heart, the rest will follow" (okay, this is a bit like a U2 song) that became my mantra. So we are working on the rest while following our hearts.