Letter To My Daughter

Monday, 23 December 2013

Dear Kayla,

I will be the first to admit I'm not a great mom. I know I have many faults and have made many mistakes in raising you. The incident over the necklace is just one example of those parenting mistakes.

When I picked you up from school the other week and your aide told you to show me what your friend/classmate gave you I was expecting it to be another one of those rubber band bracelets you've been coming home with.

I wasn't expecting to see the dainty, silver necklace with the "K" around your neck.

I admit to having almost two simultaneous thoughts. The first being absolutely touched that your friend gave you a gift like that. I had to hold back the tears.

Immediately following that thought was a feeling of dread in the pit of my stomach as I thought to myself that this gift was going to end up broken in no time.

I was surprised to even see you wearing that necklace. You don't like to wear anything on your arms, around your neck, or in your hair. So while I was touched by the gift she gave you I also felt like it was kind of wasted on you as it would end up sitting on your dresser, or more likely, broken.

On the way to therapy I kept pointing out your necklace and how nice it was of "I" to give it to you and how important it was to take care of it. I kept mentioning that you had to be careful with your necklace so it didn't break.

You were great about keeping it on the rest of the day. That night after I finished making dinner I went upstairs to get you and noticed all the lights were off. I found you in bed with your pajamas on. You said you were tired so I cuddled up beside you and started rubbing your back.

I don't know what made me think about your necklace, must have been intuition, but I reached up to your neck and asked you where you necklace was. You said, "It broke."

I admit I reacted a bit too strongly to the news of what I figured would happen had happened so soon after receiving the gift - that it didn't even last a full day.

I jumped out of your bed and said, (ok more like yelled), "What?! Kayla where is your necklace?!"

You told me it was on your dresser and there I found it split in the middle - no way for me to fix it.

I was so upset and didn't control my feelings well at all. I yelled at you about not being responsible and taking care of your things and look at what happens you end up breaking your stuff. Then I continued in my childish ways and stomped down the stairs so frustrated.

You came down for dinner and sat at the table where I was still fuming over the broken necklace and I didn't let it go. I continued to be upset about it and harp on you about breaking a necklace that someone gave you and how this was such a special gift.

Of course it was no surprise when you left the table and I heard you in the bathroom crying.

I sat at the table and cried too.

Cried because I was ashamed at the way I just reacted and cried at the way that I treated you and cried that I yelled at you and mostly cried because my actions caused you to cry.

I heard you in the bathroom crying and saying, "It broke itself. I didn't do it, it broke itself."

And there I went again, "Kayla it didn't just break by itself! You had to have done something to cause it to break the way it broke. You did something, you weren't careful!"

More tears. From both of us.

I finally went to you and in a more calm voice asked you if you were trying to take your shirt off when you changed to your pajamas; and when you pulled your shirt over your head did the necklace get caught and break? You said yes, but it's hard to know if that's what really happened.

I pulled you in to a hug and apologized to you. I told you I was sorry for yelling at you about the necklace. I told you I still loved you. I know it didn't make everything better, but I wanted you to know I was sorry and that I still loved you despite my less-than-desirable behavior. 

I don't even know why I was so upset over the necklace. I tried to find the words to explain it to you, but I don't think we got very far.

I think it was because this necklace meant more to me than it did to you. I think I've always put a lot of importance on material things ... attached memories to them and they became my memories. Material things became important to me. I had scrapbooks filled with things from my growing up years. Things that I kept because this person or that person gave it to me, or tickets to this movie or that movie because I went with so-and-so.

I was so touched that this girl gave you a present, I think maybe for Christmas. I don't know how many other girls she might have given a gift to as well, or if you were the only one, but either way, you were one that she did chose to give a gift to. You were included. She thought of you and wanted to give you something and I wanted that to mean something to you.

And you were happy about it- I could see it in your face when you showed it to me. But I wanted you to be like me. I wanted you to be responsible like I was when I was your age. I wanted you to take care of your things. I wanted you to just know how you were supposed to take care of the necklace. I wanted you to take pride in it.

I think my anger was anger at myself that I unfairly directed at you. Anger because of my own image of you doesn't always reflect the person who you are. Anger at myself because sometimes I blame your having Down syndrome on things that frustrate me. I had the fleeting thought that if you didn't have Ds you might have cared more about the necklace, might have been more careful when changing your clothes, might have just known how to be gentle with it. I know that's not fair and that is one of my faults. I never said I was perfect. I know I'm far from it.

I know there was no reason to be so upset over a $5 necklace from Claire's. The "K" charm on it was still intact; all I had to do was replace the chain. I did apologize to you, but I'm saying it again that I'm sorry I went overboard. I was just hoping the gift of this necklace would last longer than an afternoon.

I did go to Claire's and get a new chain. But by then I had traumatized you about the necklace because you refused to wear it. I convinced you it would be ok to wear it to school and that your friend would be happy to see you wearing the gift she gave you. You finally relented and I've been able to get you to wear it a few times now.

It looks so pretty on you.

I'm not the best mom, but I am trying to be better. Thank you for forgiving me for my faults.

Love, your Mom.

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Family Resemblances

Thursday, 21 November 2013

I've always thought that Lucas looked quite a bit like my brother Michael when he was a toddler.

I don't have a lot of nice, clear quality pictures of Michael from years ago, but here are a couple.

 A sampling of pictures during Lucas's toddler years...

But then Joe's mom shared this picture of Joe as a kid.

My first thought, "Wow that could be Lucas!"

Kayla and Lucas both thought this was Lucas, "Who am I playing with?"

I showed this to my mom and she said, "Where was this taken and who is Lucas with?"

My sister realized this was an older picture and therefore not Lucas, but her response was, "That's not Lucas! That's Michael!" Ha!

And seeing how I think he resembles my brother, he must somewhat resemble me too when I was a baby.

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The Day After

Friday, 1 November 2013

Another October has come and gone. Another 31 for 21 finished.

Thanks to everyone for participating in the annual blogging challenge for Down Syndrome Awareness Month.

I know some people express that it gets harder every year to blog every single day in the month of October; especially about Down syndrome specifically. I know it feels like you've come to a point where you've said (blogged) all there is to say about Down syndrome.

But please don't be discouraged. From the beginning (Tricia) said that every single day didn't have to be a post that was Down-syndrome related; and that still stands today. The point of the challenge is just that - a challenge to yourself to blog every day. If you miss a few days - it's ok! - the blog police are not going to come get you!

And even if you feel like you've said all there is to say - just remember, you never know who all is reading  your blog. Every day there is a possibility of a new family getting a Down syndrome diagnosis and they might stumble across your blog. You never know who you are reaching. You never know who might come away from your blog that day with a better understanding of life with a child with Down syndrome.

Maybe it's time to change the name to National Down Syndrome Awareness and Acceptance Month. I know there is some consensus in the Down syndrome community that awareness has been raised and we don't need to raise anymore awareness; that people are aware and what we need to be advocating for is acceptance.

I agree about acceptance, but I'm not so sure the intentions behind awareness have been fully met. Yes people are aware of Down syndrome. They know of Down syndrome, but there are still stereotypes. There are still misconceptions. There are still negative and false assumptions about people with Down syndrome.

For the new parent receiving the diagnosis of Down syndrome are they really aware of what that means today? Or do they still have an outdated image in their mind of what Down syndrome was years ago?

Has the right kind of awareness been raised outside of the community? The kind of awareness that paints a more accurate picture of the capabilities of people with Down syndrome? Or are people still not aware about Down syndrome until they have a reason to be - until they have a loved one with Down syndrome in their lives.

I don't claim to have all the answers, but I don't think we can totally stop the campaign to raise awareness either. I think we need to expand that campaign from awareness to include acceptance though. Hmm... should I start a change.org petition to get "Acceptance" added on to that monthly designation?

Since today is also the day after Halloween here are a few Halloween pictures of The Supergirl, The Pirate, The (not-so-bandwagon) Red Sox fan, and The Civilian!

 

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Ten Years In

Thursday, 31 October 2013

I've been doing this for ten years now.

I've been a parent to a child who has Down syndrome for ten years. A decade's worth of experience, yet I feel like I have no great wisdom or advice to give.

I experienced the roller-coaster of emotions upon realizing that my first born child has Down syndrome: through being in a fog, to guarding myself, to depression, to acceptance, to moving forward. Yet there is no way I could write a memoir.

There is nothing in my experience that would be overcoming anything and coming out the other side unscathed.

Even though everyone has their own story, there is nothing in my story of having a child with Down syndrome that would stand out.

I had no major turning point, but rather a slow day-by-day grasp of finding my footing of being a new mother and a mother to a child with a diagnosis.

I have one vivid memory of an 'a-ha' moment. Kayla was a newborn and I can't remember if we had our 2 week visit with the pediatrician at that point or not. I just remember trying to find something, anything, on Down syndrome. Something that would give me a glimpse into what this meant and what to expect.

I was in my room and picked up the Mayo Clinic Complete Book of Pregnancy and Baby's First Year that was sitting on my dresser. I found the section on special needs and Down syndrome. I can't remember a thing that was in the book about Down syndrome, but I remember it was the first time I came across Emily Perl Kingsley's "Welcome To Holland."

I know people either love or hate this poem. But for me, in that moment, it was what I needed to read. Maybe it was because I found it on my own and I didn't have it thrust in my face from so many people right after Kayla was born.

By the end of the poem I was crying (I'm sure postpartum hormonal fluctuations played a role in that, too).

Yes, when I read the line, "But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland." it spoke to me. It opened my eyes that I couldn't sit around and be depressed because I would miss out on the experience of being a new mom; the experience of this beautiful, adorable baby in front of me. So it did help give me perspective.

But here I sit after 10 years and I've heard over and over the usual cliches about being a parent to a child with Down syndrome and find that I can't identify with most of them.

I don't feel that Kayla was sent here to teach me a lesson. There is nothing that Kayla does with the intent and purpose of teaching me, or the world a lesson. She is simply a child, living her life. She does not exist so the world can learn from her.

She has not taught me to be more patient. Although I should be more patient, it is a 'lesson' that I've just resigned myself to not getting. I do get irritated and impatient with her; just as I do with Lucas.
 
I don't feel that having a child with Down syndrome has changed me as a person. I am still the same person I was before I gave birth to Kayla. The only thing that has changed is that I'm more aware of Down syndrome whereas I had no connection with it before her birth. Giving birth to her did not cause some seismic shift in my personality, in the core of my being. I am who I am and that didn't change just because my daughter was born with Down syndrome, anymore than it changed when I gave birth to my son.

I don't feel that having a child with Down syndrome has made me a better person or parent. I fail at being a parent every single day.

I can say that I can't imagine my life without Kayla, but it has nothing to do with Down syndrome. It has to do with the fact that she's my daughter and once someone important is in your life, of course you can't imagine life without that person in it. I can't imagine my life without my husband, my siblings, my parents, my son. It's not Down syndrome that makes me say I can't imagine life without Kayla in it.

She's a blessing in my life, but not because of having Down syndrome. Again, she's a blessing simply because she's my child, she was a very much wanted first-born child. She's a blessing because she's my daughter and I always wanted a daughter.

She hasn't taught me the meaning of unconditional love because she has Down syndrome. I would love her unconditionally if she was born without Down syndrome and I know she, and Lucas, love me unconditionally because I am their mother. Down syndrome doesn't play a part in understanding what unconditional love is; it's unconditional because we are a family.

My journey is not extraordinary. It's a journey like hundreds and thousands of parents, all doing the best we can with what we have and what we know.

There is nothing special and there are no great life lessons to be learned from my journey.

So, no memoir from me (there are some great ones out there though!). The single piece of advice I could give a new parent of a child with Down syndrome can be summed up simply and it is live your life. Live your life with your baby the way you planned to before you received that diagnosis.

Having a child with Down syndrome does change some things (school decisions, employment, independent living, planning for the future in a more precise way) but it doesn't change everything.

You have a baby with Down syndrome, and just like that old TV show ... Life goes on.

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Royal Fairytale Ball

Sunday, 27 October 2013

We have taken the kids to a few plays at Creative Spark Center For the Arts and they have really enjoyed them. They are close to the action and the cast involves the crowd in parts of the play.

I saw they were having a Royal Fairytale Ball and the whole family was encouraged to dress up. I knew this was something my kids would enjoy so I signed us up. I only had to buy one item to complete our Royal Family transformation.

I was a queen. I wore the red bridesmaid dress from my sister's wedding and pinned my kids' dress up king/queen robe to my dress and wore the red headband crown from Kayla's outfit.

Kayla was a princess in a red and gold gown that my mom got her last year for Christmas. My dress matched hers almost perfectly. She wore the tiara that she wore when she was a flower girl in the above-mentioned wedding.

Lucas wore the knight cape with his shield and sword that he got for his birthday last year. He thought it was pretty cool that he was the only knight. (considering there were only 2 other boys, one a toddler and one a little older, odds were in his favor!)

Joe could have went as a king, but he opted for the jester hat that I picked up for him at the store. Every royal family needs a jester.

Joe wasn't alone in his jester-ness!

Twirling and dancing (notice she couldn't keep her tiara on as referenced in my sensory post; nor the necklace she tried on at home or the one they gave her there.)

Protecting the jester and chasing the Giant from Jack and the Beanstalk

Having her palm read.

Also, this family won the best dressed royal family award. One of my kids will be attending a free summer class next year!

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Mother-Son Time

Sunday, 13 October 2013

Since Lucas started Kindergarten I don't get many chances to spend time with just him anymore. I remember the same feeling after Kayla was in school and Lucas was born ... not having much mother-daughter time with Kayla. It was rare to get to spend some one-on-one time with her.

I know it's important for each child to have some alone time with each parent for that undivided attention, and while my intentions are good for trying to schedule that, I often fail at finding the time. Weekends are usually pretty packed doing things together as a family that we don't get much time to go our own ways with each child.

As preschool was winding down for Lucas I was treasuring the last few times we were able to do things together like the occasional breakfast at IHOP which was a treat for him since Kayla can't eat there.

Looking back on my time with Lucas before he started Kindergarten I feel like I didn't take advantage of all the 'free' time we had together. That I didn't get us involved in enough things. That we didn't have enough special days together exploring our community. Although Joe said it seemed like I was always telling him what Lucas and I did over the week; I look back and can't remember much of what we did!

A couple of weekends ago I had planned for us to go, as a family, to Drayton Hall since it was free for Smithsonian Museum Day. We've been to this plantation before, and while the kids aren't too interested in the house tour, it is nice to walk the grounds and take the trails by the river and the marsh walk.

Kayla ended up having a friend over to play that day and when her friend wasn't going to the plantation Kayla wanted to stay home instead. Lucas said he still wanted to go to the plantation and since Drayton Hall is part of the Charleston Explorers Club we could get the kids' passports stamped.

So Lucas and I spent a nice afternoon together; just the two of us, exploring the grounds of Drayton Hall, and counting all the large spider webs on our marsh walk. And it reminded me that I need to make more of an effort to find time for Joe-Lucas, Joe-Kayla, Me-Kayla, Me-Lucas time together!

 We thought it was pretty neat to see how this tree grew around this old railroad tie and eventually lifted it off the ground.

 

How do other families fit in time with each child to have one-on-one time with each parent?

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Lucky Number Thirteen

Monday, 16 September 2013

Who says 13 is an unlucky number anyway? Poor number 13 - always getting a bad rap.

13 is just another number, and today it marks 13 years that Joe and I have been married!

Charleston Restaurant Week ended yesterday. SpiritLine Cruises dinner tour participated in CRW. When we moved here in 2010 Joe mentioned wanting to book a dinner cruise for our anniversary but he wasn't sure if I would want to do that or not what with my motion sickness and all!

This year I decided to give it a shot and booked our dinner cruise to celebrate our anniversary. It was a bonus that this past weekend was CRW!

So we got all dressed up and enjoyed a 3 hr dinner cruise on Saturday night. I have to say the 3 hours passed by quicker than I thought it would ... and happy to report no motion sickness! For the most part I didn't even feel the boat move.

Happy Anniversary to us!

 

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Lunch Box Notes

Thursday, 12 September 2013

Last year I put notes in Kayla's lunch box throughout the year. Not every day, just randomly, when I would remember. She never said anything about the notes and eventually I forgot about putting them in with her lunch.

This year I wanted to do better about putting a little something in the lunch box for Kayla and Lucas. Something to bring a smile to their day and hopefully encourage Kayla to have a good day/stay in a good mood!

I'm not sure if I'll get through every single day of school, but I'm trying!

We were only in the second week of school when one night I was making their lunches and already ran out of ideas of what to write on their notes. I felt like anything I put would already be a repeat. So I thought it would be ok if I skipped a day; and I didn't think they would really notice anyway.

The next night I was making their lunches when Kayla says, "Mooom! What about a note?!"

Me, "Oh! Did I forget to put a note in your lunch today?"

K: "YES!"

L: "You forgot my note too! I was looking all around wondering where it was!"

M: "Do you want a note in your lunch?"

A resounding "YES!!" and giggles from both of them.

Me: "Ok, I guess I better remember to put one in tonight."

K: "I got it, Mom, I got it!"

Kayla ran to the drawer in the kitchen and took out the note pad and pen. She wrote her name on the paper and then wrote 'bus.' (I sometimes put whether they are bus or car riders). Then she said, "What else?"

I told her to put "Friday" because I would've written "It's Friday!"

K: "Ok, what next?"

Me: "Love you."

K: "Got it!"

And then Kayla proceeded to put the note that she wrote herself, as if it was from me, in her lunch box.

Guess she wanted to make sure she would have a note in her lunch even if she had to write it herself!

When I told Lucas I didn't know what to write every day he said "You don't have to write something all the time, other days you could just draw a picture."

Me: "I don't know how to draw very well."

L: "Just do what I did and keep practicing over and over and then you will be a better drawer!"

Good advice, son!

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Rite of Passage

Friday, 23 August 2013

If you grew up in the military you know that military brats have a 'rite of passage' that happens when they are 10 years old.

10 years old is that magical age when a military child can have their very own I.D. card. It's exciting! You feel more grown up with this I.D. card that you see adults showing everywhere they go on base.

I still remember the day my dad took me to get my first I.D. card. 

It was a big deal to be able to show my I.D. card when we went to the BX, or movie theater. I learned to never leave home without it!

Leading up to her 10th birthday I kept talking to Kayla about getting her own I.D. card after she turned 10. Shortly after her birthday we drove past the base and she said, "What about on base? What about my I.D. card?"

I don't think it'll mean the same to her as it did to me ... mainly because we don't live on base. When I was growing up we always lived on base. And when we lived at Hanscom AFB in MA it seemed everything was pretty much in walking distance. I walked to the Youth Center, Bowling Alley, BX, Commissary, movie theater, pool. Different place, different time.

I will have to make sure to take Kayla's card with me when we do go on base. I know she'll want to show the gate guard (even though she doesn't have to) because she sees me do it. I'll have to take her to the BX so she can buy something and show her card to the cashier.

So a rite of passage passed down from one generation to another:





And the picture of myself, at 10 years old, getting my first I.D. card...

 

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Milestone Decade Birthdays

Thursday, 1 August 2013

Kayla and I both had those milestone decade birthdays this year.

2 weeks ago for Kayla; today for me.

1 for Kayla. 4 for me.

4 decades. Really?!

It's going to take some getting used to answering the question, "How old are you?" with the reply, "40." Forty doesn't roll off my tongue that easily. It feels weird saying it. But then again, when you're an adult how many times do you actually get asked your age?

I feel like I should be doing something big and great to celebrate the big 4-0, but I kind of stopped celebrating birthdays years ago. Thankful for another birthday, but still just another day all the same.


But it's 4 decades!

Shouldn't I go jump out of a plane or some other big risk-taking activity? Parachuting isn't likely - I don't even like roller coasters!

What does everyone else do to celebrate 40? 

Maybe I should make a bucket list of 40 things.
Or 40 things about me.
Or 40 things I've learned.

But 40? That's a lot of things for a list; who would want to read a list that contains 40 items?

So, I'm 40 today. No great words of wisdom from me on turning 40!

I received a card yesterday that had the following quote:

"It's not the years in your life that count, it's the life in your years."

I like that. I'd like to think that the life in my years have been pretty great, fulfilling, and full of love.


  

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Flying Wish Paper

Friday, 19 July 2013

On one of my mom's visits she brought Flying Wish Paper with her. She thought it would be a neat thing for the kids to do. They drew pictures and she lit their papers and they lifted off in the air to 'fly'. They had fun with it and there were plenty of papers left over to use for another time.

I had forgotten about that paper until I was trying to think of what to do to mark the 1- year anniversary of my father's death.

That evening we got out the Flying Wish Paper and sent our notes up to Heaven to my father; their Pepere.

I was really touched by what Kayla and Lucas came up with to write on their paper.

Lucas wrote, "Lucas loves Pepere so much that I can not forget you."

He was only 4 when my father passed away. I wonder how much of my dad he will actually remember. Kayla was 9 so she had a little bit more time to make memories with my dad, but I was 8 when my dad's mother passed away and my memories are very few and faint of her. I know we have to just keep talking about my dad and looking at his pictures to keep his memory alive for my kids.

Kayla's note said, "Dear Pepere, I like you. Don't die. Don't get in the coffin ok? I like you Pepere."

I know Kayla knows that he did in fact die, and he is in a coffin - they were there for the funeral. So I wonder if she was actually trying to express that she wished he didn't die, but she didn't know how to say that.

 

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Blue Ridge Mountains

Thursday, 18 July 2013

A last few random pictures from our vacation 2 weeks ago. We had a wonderful time staying up in the Blue Ridge Mountains in Sapphire, NC and being able to travel throughout the area there.

Mining for gems...
 



Some of the wildlife we found during our stay. Actually, on one of our drives I did spot a small black bear on the side of the road. I think I might have just freaked everyone out a little bit when I started yelling, "A bear! A bear! There's a BEAR right there! Look! On the side of the road!! Joe turned around so I could try and get a picture of it, but a truck coming the other direction scared it further back into the forest. It was still pretty neat to see!







They enjoyed being able to climb on this old train, pull the bell, and holler out "All aboard!"





Lucas found a hiking stick, and Kayla found a leaf as big as her face.

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