Day 6: 31 for 21: Trying Too Hard

So, as I knew I would, I missed a day yesterday.  It was our Buddy Walk, so we were out of the house early and pretty beat by the time we got home.  I was just going through some of my old posts to see what I could give you today, and came across this one, from October of 2010, when she was 4 years old, about trying to make fun, positive, memorable experiences for our children.  A lot of what I had written below still holds true today, although my understanding of Samantha's reticence has grown and my ability to recognize triggers and environments that will not work for her has become more finely-tuned, so I'm able to avoid them.  Samantha is able to give me her own opinions about things, so sometimes just asking her will give me the answer I need before we barrel into a situation that becomes unpleasant for us both. 

It's not easy for a lot of parents.  It hurts when our children are unhappy, and it hurts when our children resist things that we, ourselves, would deem as highly enjoyable.  We expose them, little by little, to new things, new places, new ideas, we hope they will adapt more as they grow, and we learn to make concessions to avoid what we know to be disastrous.

Are there things I wish Samantha would enjoy doing?  Ohhhh, yes...  I could go on and on about those.  Have I set them aside and stopped badgering her about doing them when she clearly doesn't want to?  Mostly.  Am I hopeful that one day she'll change her mind or her triggers (whatever they may be) will disappear and she'll be ready, willing and able to do them?  Absolutely.  But I won't count on it, just to be safe.

October 4, 2010

Sometimes I feel like I try too hard to ensure that Samantha is having great and varied experiences.  I'll read the blogs or Facebook posts of other people and wonder, "why can't we do that?"  For example, people will take their young children (including those with Ds) camping, or to ball games, or hiking, or to music festivals.  And I'll just think, "no way on Earth will Sammi sit still for that," or, "she'd have a meltdown - not worth chancing it."  But I think we should.  Lastnight we watched a sitcom rerun where a married couple accidentally picks up the wrong family's pictures at the drugstore photo-processing counter.  They become obsessed with the idea that their lives are dull and that they should try to do all the wonderful, adventurous things the other family did.  So they tried, and felt rediculous.  They realized that their lives were rich enough with the experiences they had, mundane as they may seem.  A pretty timely program to have watched after yesterday, but I didn't actually realize it until now, as I write this post.

So I do try to take Samantha to different places, but her difficulty in transitioning often leads to frustration for me, and, what I perceive to be torture for her.  Granted, she's certainly better than she used to be.  And sometimes she really does have fun.

Yesterday started off well-enough.  It was probably the most beautiful day we've had in about 4 months.  I had gotten her pretty excited about going to a pumpkin pick on a farm run by a lovely family who open it up to our Down syndrome association every year for a day of festivities and celebration.  Her aide, N., came with us.  I'm always happy to have an extra set of hands, and thank goodness I did yesterday.  Samantha, who has remained dry for all but sleeping hours for the better part of a few months now, fell asleep in the car on the long ride to the middle-of-nowhere.  She was wearing a pull-up (I haven't gotten brave enough to eliminate them yet).  She was soaked when we got there.  Sopping wet.  Complete nappy failure.  And, horribly ambitious (?), optimistic, unprepared mom that I am, I didn't have a change of clothes.  Or a clean pull-up.  What kind of mom does that???  Ugh.  So N. stayed with Sammi at the car while I ran to the group to filch off the good-graces of a few folks with kids that may be approximately Sammi's size.  Bingo.  A fresh pull-up and a pair of pants.  Hooray! 

Next adventure of the day, a still-tired, super-cranky child who became obsessed first with cookies, then with an open police car, set up to allow kids to explore.  Pulling her away and re-directing her from both was not pretty.  But we were there to take a hay ride out to a field to pick pumpkins, and damnit, that's what we were going to do.  That was the wonderful experience I was bound and determined to make for her.  Here was the result:

 

 

These photos really, really pain me.  I feel so guilty for dragging her out there, forcing her to pick out a pumpkin, forcing her to sit for a photo that she didn't want to sit for, but that I wanted to have so we could see later what a fun time we had.

I'm pretty sure PMS fueled some of my own crankiness and insistence.  But it's not like she didn't have any fun at all...there were moments, mostly captured by someone else's camera, since smiling for mommy was not on the agenda. 

 

By the time we got back to the car, we were all completely done.  Nothing could possibly feel better than to sit in the air conditioning and get the heck home.  Except a quick need by Samantha for the portable potty I carry around in the trunk.  As I loaded up the car, N. pulled Sammi's pants down to situate her on the little toilet.  Unfortunately, there was a miss, resulting in the soaking of the borrowed pull-up and the borrowed pants (sorry, Heather!  They have been re-washed, though...), and there was a bottom-less ride home.

Sammi's gauge of how people are feeling when she suspects something is amiss is to ask, "you happy?"  On the ride home, she said, "N., you happy?" to which N. replied, "Yes."  N. said, "Sammi, are you happy?" to which Samantha replied, "Yes.  Mommy mad."  Yikes.  (Reassurances to the contrary followed, btw.)

When it rains, it pours.  I know I probably just need to chill out a bit, take the time to smell the roses.  Put my camera away...? 

Nah.

 

 

 

Day 4: 31 for 21: 2012 Q&A

I posted this back in 2012 during 31 for 21.  It was Part II of a Q&A.  Happy Saturday, everyone!

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October 2012

I'm a little bit sad because I don't actually have anything to do planned for this weekend.  And, like I said in yesterday's Q&A, I feel guilty for those lazy weekend days when we don't do anything.  Especially if the weather's as beautiful as it's supposed to be tomorrow.  Ah well, there's always a pumpkin patch/petting zoo/library/mall/playground just waiting for us.  Maybe it's time to pull some playdates out of a hat...

So, back to answering questions, here's one of the triple-barrel variety:

Q.  When did you feel like everything was okay?  And when did you stop wondering what others thought?  And where is your favorite place to shop for Sammi's amazing clothes? 

A.  Good questions!  Feeling like everything was "okay" is pretty relative.  While still in the hospital, with the support of my husband saying everything would be okay and the information given to us by the social worker showing me a glimpse into a possible future for Samantha, I kind of felt like things would be okay.  Like we could do this after all.  But was I truly okay with it?  Not at all.  It wasn't an overnight transformation, although I was able to put on a brave face and show people, honestly, how in love with my baby I was, how happy I was to have her.  But I did mourn the child I didn't get, the future she certainly wouldn't have, and the struggles she would have to face.  How can I protect my child???  That was what really broke my heart. 

As Samantha grew and thrived, both before and after her open heart surgery at 4 months, her personality began to really shine through.  The brightness in her eyes and her smile, the magical way she captivated us and anyone who came into contact with her, her strength and determination, that's what really made me begin to realize that things would be really okay.  Already, the vision of that blank, slack-jawed, woman-child shuffling along behind me was gone!  Just like that.  Already, I began to see snippets of our future lives together, the things we would do, the things we would see, the things she could accomplish.  And then I knew it would be okay.  Certainly, it wouldn't be without bumps and struggles, but those were nothing compared to what I'd originally envisioned. 

It took a bit longer to stop wondering what others thought.  I never actually worried what they thought of Samantha - she usually had everyone eating out of the palm of her hand on first glance, and I never had reason to think people had negative thoughts about her or about Down syndrome.  No negative comments, no sideways glances, no signs of disdain.  But I had this weird, irrational thing in the first year where I worried that, because I seemed (was!) so happy with my daughter, because I didn't wear a my daughter has Down syndrome badge on my arm or across my forehead, that people would think, "oh, poor thing, she *doesn't know.*"  Irrational, like I said.  And so, during that first year I felt compelled to bring it up in conversation all the time, usually with complete strangers.  I'm sure part of that was born out of my need to talk about it myself.  I'm not exactly sure what spurred the turning point after that time, but just after she turned 1, I began blogging.  I'm sure it's no coincidence that that's when I stopped caring what others thought.

Okay, fun stuff - Sammi's clothes!!  Stay tuned for my new blog I'm going to put up, likely not until the new year when I can get everything together.  It'll have photos and information about Sammi's clothes, and where to buy cute kids' fashions without spending much money.  In the meantime, I'll tell you I get them from any number of sources.  I buy bits and pieces that can be easily layered or combined with others, almost always on sale.  We have a great children's thrift store selection nearby where I've been lucky to obtain some amazing finds!  But as far as retail stores go, I usually get things from Target, Naartje (check out their website - amazing prices and sales, gorgeous stuff!), and Children's Place, along with anyone else who happens to be having either an end-of-season or going-out-of-business sale.

Stay tuned for the next set of questions!  Thanks for indulging me...  :-)

Day 3: 31 for 21: Wonderful Wonderful Life

Steve put this video together back in 2008, when Samantha was just a month shy of 3 years old.  The song's lyrics are so fitting, and the images, all tied together in a montage of her first 3 years, show the unadulterated joy this amazing child brought and continues to bring to us.  It shows just how wonderful life really is, how Down syndrome has not brought us sorrow or sadness, despair or darkness.  If I can pull it together, I'll do a follow up to this, broadening the scope of time as it has passed now over these 8 years she's been in our lives.  There's so much to show, so much to tell. 

Enjoy. 

 

Day 2: 31 for 21: A Lifetime of Happy Heart Days

I missed an important 8th anniversary this week.  One that gets harder and harder to remember every year, as it gets pushed further and further into the past.  I still pay homage to it, albeit a bit later every year, and it is still something present in some way, even as a tiny, brief flicker of a thought when Samantha is changing her clothes and the wide white snake of scar tissue plunging down her breastbone becomes visible for a moment.  But really, it's something that's just there, now.  And, when I stop to think more carefully about it, to realize its implications, I am eternally thankful for its presence.

Today I thought I'd go back in time a bit today - to an anniversary when the memory was not so distant, 4 years post-surgery.  The post is old, but the sentiment will always remain.

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9/29/10

4 years ago today, I handed my sleepy, happily cooing, probably very hungry, nearly 4-month old girl over to two nurses and a gurney. We’d gotten up at the crack of dawn from our lumpy bed at Ronald McDonald House (a truly amazing place!) and headed over to CHOP (an even MORE truly amazing place!) where we waited for what seemed like hours in a room that was way too cold to justify the teeny tiny lightweight cotton hospital gown they made us put on her. I had asked for and received some towels or receiving blankets to put over her to protect her from a chill, ignoring my own chilly discomfort.

Just hours before, as we were getting her ready for bed, Samantha decided to grace us with her very first all-out belly laugh. Imagine the guilt we felt at that, knowing that it could be a very long time before we would see that again. Maybe somewhere in that baby brain of hers she would forever associate happy laughter with the pain and discomfort of impending surgery. The mind is a complicated thing, after all.

Our surgeon met with us briefly in his office to explain what he would do and what we could expect. Then he left us to trade his 3-piece suit for scrubs, a mask and gloves, his uniform for the delicate procedure ahead. I kept looking at his hands, thinking about how they would soon hold my daughter’s life in them. But we trusted him implicitly. He is, after all, one of the best in the world. Can’t do much better than that.

Then we waited. There wasn’t any wringing of hands or pacing – we knew we could only. just. wait. Ate breakfast, wandered the halls a bit, anything to keep busy. We got word from a nurse after only two hours that the surgery was over and the surgeon would come see us shortly. He said everything went very well, that Samantha was successfully taken off all of the machines, including her breathing tube. It wasn’t until more recently, when I’ve read the blogs and heard the stories of people whose children had to be weaned from that tube to breathe on their own, that I realized what a huge thing that was. Again, I was fascinated by the surgeon’s hands and what they had just done and what they had just held.

4 days later we came home with an oxygen tank that we were able to shed in just a few weeks. Again, it wasn’t until more recently that I realized what a HUGE thing it was, too, that we were able to come home so quickly. A perfect repair, with a slight residual murmur. No need for future repairs, no long-term medication, no restrictions on activity. Just our baby.

I’ve been seeing a lot of Happy Heart Days in the last week or so, announced via blog and Facebook. I love that so many people have this miraculous event to celebrate, to look back on as part of the distant past. To me it’s more of an early Thanksgiving. Thankful for my healthy girl, thankful for that joyful belly laugh that we hear every day.

Day 1: 31 For 21: Let's Roll...

I wasn't going to do it.

I wasn't even going to entertain the thought of doing it.

I didn't do it last year, although I did feel the pull of it, the desire to do it, the need to take advantage of it...

But, in the pre-dawn hours of semi-sleep this morning, when my body had decided that 7 1/2 hours of fairly restful slumber was quiteenoughthankyou, I started thinking about it. 

And I had an idea.

31 for 21 (thanks Michelle!) is the way Down syndrome bloggers have to commemorate the month of October, also known, in our circles, as Down Syndrome Awareness Month.  By blogging all 31 days to help bring awareness of, advocacy for and information about the 21st chromosome that graces the complete corporeal existence of our loved ones with Down syndrome, we can put so much out there for the enjoyment of our peers, the assistance to new parents just starting out on this amazing journey, and new and enlightened understanding to those not connected in any immediate way to the Ds family.

My idea stems from the fact that I have very little time to blog these days, and a whole 7 years of posts stored here.  7 years of writing that may have not seen the light of day in, well, perhaps 7 years. 

896 published posts (okay, 897 by the time this one hits the blog) to choose from, to enjoy all over again, to re-share with all of you this month by re-posting some of my favorites that pertain to the awareness of the beautiful and often misunderstood 3rd copy of the 21st chromosome found in the genes of more than 400,000 people in the US alone. 

Today I'm just posting to let you know I'm gonna do this, gonna take the plunge, gonna bring back some moments from the dark, dusty, nearly-forgotten corners of this blog, and to  invite you all to enjoy the ride with me - I'm excited about this!  There will be some new material written, too, so keep an eye out for that.  And for you bloggers who may be reading this, I pledge to read as many of your posts as possible, and will drop you a comment or two to let you know I've been there.   

So, Happy Down Syndrome Awareness Month!  Let's roll!!