Showing posts with label love. Show all posts
Showing posts with label love. Show all posts

Friday, August 27, 2010

August Update




Well, it's been quite awhile since we updated our blog. It's also been about two years since we learned that Quinn has Fragile X Syndrome. About a year ago I wrote this post, reflecting on how our first year after the diagnosis had gone. I guess the main difference between this year and last year in terms of our adaptation is that it's softened - more background than foreground.

There are moments when we are acutely aware of Quinn's special needs, but most of the time, we're just doing what most people do. We work, do chores, visit family, go to the zoo, wipe our kid's snotty nose, enjoy family meals, go on road trips, catch movies when we can, do laundry, and do all of the gazillion other activities that make up our lives while trying to remember how precious, awesome, and fleeting all of this is.

Quinn's doing amazingly well. He is already doing things I wasn't sure he'd ever do, especially in those dark days just after the diagnosis. He is talking more. He can name many shapes, including "hard" ones like ovals, rectangles, diamonds, and crescents. He can count from 1 to 10. He can follow simple directions. He can sort of put his shoes on, sometimes, like when the constellations are aligned, though even then usually they are on the wrong feet. He can drink from open cups or from straws. He doesn't use a pacifier anymore. He sleeps in a bed, sometimes, all the way through the night. He gives great hugs. He is still very, very happy. Contagiously so. In short, he is a wonderful little boy.

We continue to be lucky to be surrounded by supportive family, friends, neighbors, service providers, and other wonderful people that make this journey possible.

By the way, the great haircut in the pics was just done today, by a neighbor/daycare provider who's been watching Quinn this week while his usual nanny's been away. She did it just because she likes to cut kids' hair. He hasn't had a cut this good, well, ever. And apparently there were no tears. So much to be grateful for.

Saturday, July 10, 2010

Why You Won't See Us at the Fragile X Conference



July 23, 2005





Chesterman Beach, Vancouver Island, British Columbia, Canada


This is where we spent our honeymoon...and where we will be on July 23. In the same hotel, in the same room we were in five years ago. I can't wait! Thanks to all the grandparents and Quinn's nanny for making it possible for us to take some time away from our little angel. We hope to make it to the conference in 2012!

Saturday, December 12, 2009

"Da Da!"

Quinn unambiguously said "da da" and pointed at me this morning. He was holding one of his favorite books and wanted me to read it. Tonight he said "da da" a few times when he wanted to be carried when we were looking at the Thompson Avenue Christmas lights.

It was an extremely rare moment for me. I felt so proud of Quinn and so loved by him. It made my heart so happy. But there was melancholy too. I thought to myself, "So this is what those other parents are going on about all the time. This is the love and joy that they're always talking about. This is what sustains them when things get hard, as they inevitably do. No wonder they gush so much." I wonder how much easier parenting would be for me if I got those moments more often. I wonder how much more often I would get them if Quinn were more "normal."

When Quinn said "da da", I felt like I could endure endless sleepless nights, nurse him through an infinity of sick days, wipe a thousand runny noses and change a million poopy diapers with a smile on my face. All it took was a little recognition, a little declaration of his understanding that he knows who I am. Why are those words so important? I know he loves me. I see his face light up when I pick him up from school, I see the laughter in his eyes and heart when I play with him. I know he recognizes me. But somehow it isn't the same as when he says it. Why is that so important? I know part of it is that we've waited so long for him to speak, and to see speech finally emerging is like warmth on a bitter winter day. But this is different than "go" or "ah duh" ("all done"), as wonderful as it is to hear those, or see them as signs. It's ME. I'm "Da Da". What he said means me. And knowing my child means me; nothing has moved me the way that knowing has moved me. I suppose it's like the first time you realize that the person you're in love with loves you back, but it's along a different, quieter dimension.

Well, of course I tried, with mixed results, to get him to say it again and again and again. But Quinn is not one for command performances. I'll have to be patient and let "Da Da" come to me as a gift. I love you, Quinn. Da Da loves you.

Tuesday, August 4, 2009

One Year After the Diagnosis


It's been about one year since we learned that Quinn has Fragile X Syndrome. It feels like we've lived a lifetime since the day we got that call. I feel proud that we've made it with our sanity (mostly) intact. We both have a few new wrinkles and some battle scars, but we've passed through what might arguably be the most challenging phase of this journey. Quinn's diagnosis has opened up unexpected opportunities. To love, unconditionally, an adorable, happy little person. To see the delight on his face when he uses his hard-earned pointing abilities to ask for things and to show us doggies and trucks. To appreciate the miracle of human development. To meet (in real life and online) strong, smart, funny, wise, patient, inspiring people. To revisit high school genetics and biology lessons. To learn a new vocabulary. To reflect on our values. To experience deep gratitude for the people who have supported us. To join the movement for increased access to resources and opportunities for people with fragile x and other disabilities. To feel strong as a family, as a couple, and as individuals. We are probably not done grieving, but it's good to remember that we're still here, laughing, crying, loving, and being.

Sunday, July 26, 2009

Happy Birthday Sarah!

LSFX readers please wish Sarah, my lovely wife and LSFX co-author, a
most happy birthday! She is a super wife, super mommy, and deserves
much praise on her special day.

[I sent this from my iPhone, so please excuse any excessive brevity or
typographical errors.]
--Zachary Drake

Sunday, June 21, 2009

Happy Father's Day!


Happy Father's Day! Here is a picture of Zac and Quinn when the little guy was just about one month old. Zac is a wonderful, committed, fun father and I love being a parent with him.

Wednesday, May 20, 2009

Status updates

My posting to this blog has suffered recently, as I've been using Facebook as my primary venting/griping forum. For those of you not there, I'll transcribe some of my recent Quinn-related material. In chronological order:
Zachary Drake is with sick baby. :( How can I treat Sarah like a princess? Happy Mother's Day all (including those who are trying/hoping/attempting to convince hesitant partners!).
May 10 at 8:03am · Comment · Like

Happy Mother's Day Sarah! Quinn & I love you very much. You are so good to both of us :) :)
May 10 at 9:41pm · Comment · LikeUnlike · Share

Zachary Drake has read "Big Red Barn" far too many times today. Fortunately, I think Quinn will be able to go to school tomorrow. I was not optimized for extended bouts of special needs childcare. (Is anyone?)
May 11 at 6:17pm · Comment · Like

Zachary Drake needs D&D night like this planet needs to control greenhouse gas emissions.
May 12 at 4:57pm · Comment · Like

Zachary Drake another 4am wakeup. Resenting your own child makes you feel like crap. He's awfully cute though.
May 13 at 5:54am · Comment · Like

Zachary Drake Quinn built this tower with some guidance from his physical therapist. His skills are improving!

Zachary Drake So looking forward to watching episodes of "In Treatment" with my Yummy tonight.

Zachary Drake Quinn watches the garbage truck drive away

Zachary Drake Quinn's not napping because of gardener noise. I really needed that couple hours. But onward I trudge!!
May 15 at 2:29pm · Comment · Like

Zachary Drake got to see "A Streetcar Named Desire" last night. A play! How grown up!
May 16 at 7:04am · Comment · Like

Zachary Drake God, it feels so good to do real work. The show is largely intact in my mind and just comes pouring out if I'm properly focused. I just need to clean up a few spots and make sure I'm in proper mental and physical shape for the performance.
May 16 at 1:26pm · Comment · Like

Zachary Drake is buzzed from a very strong mojito. Yay parents' night out!
May 16 at 7:18pm · Comment · Like

Zachary Drake Quinn started making noises around 3am, and then really woke up around 5am. I've been walking and driving around with him for an hour now. Somehow I'm ok.
Sun 6:06am · Comment · Like

Zachary Drake Strolling through the mall at 6:21 am with Quinn, sleep deprived
Sun 6:27am · Comment · Like

Zachary Drake Quinn has a cold and a cough, so we're keeping him home. Another much needed day snatched away from us. God this parenthood thing can suck sometimes. Now I gotta change his shitty diaper. Oh, did I mention he's permanently mentally retarded? Sigh. (I apologize for the whiny nature of my recent status updates. I will return to political commentary and narcissistic self-expression as soon as possible.)
Mon 7:14am · Comment · Like

Zachary Drake Quinn took no nap today, but by stuffing my face with BBQ spare-ribs and fresh lychee nuts I've managed to stay sane.
Mon 4:41pm · Comment · Like

Zachary Drake Is ready for his show tomorrow morning!!!
Mon 10:32pm · Comment · Like

Zachary Drake got a partial standing ovation today. Happens with Dust Storm a lot: some people thing it's great and stand right away, some feel compelled to follow along, but it doesn't quite reach the tipping point where everyone feels they have to stand.
Yesterday at 4:46pm · Comment · Like

Zachary Drake Quinn's nose is still running like a river. Another day home from school. Another few hours I thought were mine snatched away. Another entry in the ledger of resentment. God this is hard.
8:42am · Comment · Like

Zachary Drake both of Quinn's nap attempts were ruined by bodily functions. What must I do to propitiate the gods?
2:32pm · Comment · Like
Reading these over, I'd say it's a decent sampling of the ups and downs.

Sunday, May 10, 2009

Where's Mommy? I want to wish her a happy Mother's Day!


Happy Mother's Day, Sarah. Daddy and I love you so much.

One of the many reasons I love being a mother

is because of the sweet and funny things I overhear.

Right now, my husband and son are in the bathroom adjacent to our office. Quinn is taking his bath. Zac says "Quack, quack, quack!" Then Quinn says very merrily, "AAH! AAH! AAH!". This happens again and again.  Quinn only started imitating sounds in this way very recently. 

Quinn got a fever today (which he's since recovered from), and I still have a yucky cough from last week. Yesterday, my friend's child, who is just a few months older than Quinn, answered the phone when I called my friend's house. I was shocked that a child that age could answer a phone. I had assumed (really) that some other child was visiting her house for the day.

I am so grateful for the Quack Quack Quack moments that remind me to enjoy this time.

Wednesday, January 14, 2009

Going Away Present

I am beginning to think that Quinn has a brilliant plan for the unveiling of new feats. This afternoon as I was driving Quinn home from school, I was feeling a little guilty about the work trip I am taking tomorrow. When we got home, I took Quinn out of the car, and he usually clings to me like a little monkey until I carry him inside. But today, he wriggled out of my arms and started walking down the sidewalk at a rather quick pace, in just his socks! I told him we should come back in the house and put some shoes on. I think he understood me (!!) because he didn't put up too much of a fight, and once his shoes were on, he was standing at the front door, bouncing in place, like Tigger.

We started back down the sidewalk, and at first I thought he just wanted to visit the little girl next door, but he amazed me by continuing towards the shopping plaza near our house. He has made this journey once before, but walking down sidewalks, in an organized fashion, is still very new to us. Many times when we want Quinn to walk down a sidewalk, he has a mini-tantrum until we put him in the stroller. So I was astounded when he started leading me down the sidewalk.

And he had a destination in mind! He pulled me into Petco to visit the parakeets and fishies, something we do almost every day because he loves them so much. When he sees the animals, he flaps his arms, bounces, and says "Ahhhh". It's quite a sight.

This was such a magical experience, it completely alleviated my angst. I had no choice but to be in the present, enjoying my sweet little angel.

And he made sure we had lots of time for cuddling the night before my trip, too. He refused to walk home, and I didn't have the stroller, so I carried him (all 35 lbs of him) all the way home.

Clever little fellow.

Tuesday, December 9, 2008

We measure up!


Many thanks to Vicki at Holly Daze for giving us the "measure up" award that's been circulating the blogs lately. People pass it on to others to say that their blog "measures up" - i.e. is good and worth reading!

Rules:

1. Say one nice thing to a man in your life.

Thank you so much, Zac, for being my hero last night as I prepared for a job interview. You did a number of wonderful things that deserve public commendation: You put the baby to bed, fixed our printer (and that involved leaving the house to get a new cartridge on a cold night!), fed me chocolate, and let me sleep in a bit in the morning. These are just a few examples of the kinds of gifts you give me every day. I love you.

2. List at least six ways that you measure success in your life (or for your blog).

I feel successful when...

1. When I ask myself, "If a bus hit me today, and I were lying in my hospital bed with only an hour left, would I feel regret about anything (big)?" If I can honestly answer that I have no regrets, then I feel successful.
2. When I am giving enough (not necessarily equal) attention to the things that matter most to me: family, work, friends, personal time.
3. When Zac and I seem to strike the right balance between recognizing and managing Quinn's specialness and letting him just be a kid.
4. When I do something at work that I feel truly proud of, because of the effort I put into it and because of the potential for positive impact on the community.
5. When I remember to be grateful for the many, many blessings I have in my life and allow my gratitude to dominate me, rather than what are, in comparison, relatively small complaints.
6. When I remember to give Zac the kinds of gifts he gives me (see above).

3. Assign this award to six other blogs and leave them a comment telling the blogger that you’ve assigned them this award.

Well, this is only five, but that will have to do.

X-Dad: Did X-Dad get this already? I'm not sure, but I think it's okay if he gets it twice. His sense of humor about FX and other parenting challenges is great. (Because you can't just cry all the time.) I still laugh to myself every now and then thinking about the last line of the "Feeling a little pissy" post.

Purses and Poop: This is a blog by a former supervisor and old friend with two beautiful adopted daughters. I like her blog because she blends the day-to-day with the big picture stuff so well, and the topics: parenting, work, health, and general life stuff are always interesting.

Princessa Sianessa's Distraction: A great, well-written blog by one of my oldest friends. Her recipes are wonderful and she has a wry sense of humor I always enjoy.

Llama + Duck = Love: Really fun and interesting blog about family and geeky topics by another IRL friend.

If I Had A Photograph of You: Adorable kids, terrific photographs, and a very sweet approach to life.

Sunday, December 7, 2008

Quinn & Sarah sledding

The city of Martinez creates a short artificial sledding run as a
fundraiser. Here's Sarah & Quinn after a successful run.

Saturday, October 18, 2008

PECS

So we're starting a little picture exchange communication system (PECS) with Quinn. I was a hesitant at first, thinking, "But he's gonna talk any day now, so why do we need that?" But it's become clear that: 1) It might be awhile before Quinn speaks; and 2) He has a lot to say, as evidenced by his numerous adorable requests for assistance by putting our hands on stuff. Today, for example, Quinn got Zac to open the car door, buckle Quinn in, and drive around the block - all by putting Zac's hands on what he wanted. (For the drive around the block part, he nudged Zac towards the front seat - Zac had been sitting in the back seat with Quinn - and Zac took that as an indication that Quinn wanted Zac to drive the car.) We wonder, did Quinn want to go just anywhere (like around the block) or did he have a specific destination in mind? We hope that as Quinn's PECS power increases, he'll be able to tell us lots of things. We can't wait to learn more about what he's thinking and wanting.

Some technical notes for others who might be curious about PECS: the pics shown above are just a few of the ones we made. Some of them are pictures we took, and some we found using google image search. We printed the pics on our home printer using picasa's handy "contact sheet" collage function. Then we glued the pics to corrugated cardboard and laminated them using no-heat-needed laminating sheets from Target. Finally, we stuck small pieces of velcro to the finished cards. Yup, it's a PITA. But we hope it will be worth it. We just didn't think Quinn would respond to the standard PECS.
Posted by Picasa

Tuesday, October 7, 2008

Love and Survival, Part II

Love: I'm not even sure it makes sense to try to describe how I love my son. I guess it's like the love most parents have for their children, but since I only have one, I have no basis for comparison. Our child is very special. Not just special needs special, but special in the totally pre-euphemistic sense of the word. His smile lights up his face, our faces, and the faces of everyone he's with. He gives great hugs and slobbery kiss-like things. He loves books. His awkwardness and delays are quite charming. He walks like a tiny Frankenstein and sleeps with his butt in the air. He has developed a habit of taking our hands, bringing us across a room if necessary, to ask for things in the only way he can - by putting our hands on what he wants - videos, outside play, blocks. I love being dragged about my home by this little authority figure in a puppy sweater. I love how he smells (usually), how he picks up his sippy cup so earnestly and drinks his milk like he is tasting the sweet nectar of life itself, and how he laughs at many, many things. Like velcro and the swiffer wet jet.

Then there's the love for my husband. My exhausted (see below) sweetheart, who dreams of hiding in a cave for a long, long time to play d&d wows me every day with his tender and funny interactions with our more-than-a-handful child. He gives me frequent backrubs and is patient with me as I bore him with the tedium and stress of our over-scheduled new life (see below).

Survival: We are tired, oh so tired, all the time. Our son doesn't sleep well. Though he makes progress every day in little ways, the milestones are a long time coming. We see everything coming for months, and sometimes years. Unlike many of my friends with typically-developing kids, we never just "wake up" to find that our child is doing a new feat. We are thinking of having a first word party, because already we've been waiting about 1 year longer than most parents do. We might even have a bye-bye party, because he doesn't wave bye-bye either. Though there are benefits to this slower development (we still don't have to run to catch our toddler; he just doesn't move that fast and he has little interest in leaving the stroller when we're out), the downside is that we put in a lot of effort, and our rewards come less often and less dramatically. He has 4 therapy appointments per week, not including any extra appointments, like our upcoming visit to the M.I.N.D. Institute, regional center service review meetings, dentist appointments, regular doctor check-ups and sick visits. The therapies could be an entry unto themselves, but for now let's just say they are wonderful and our therapists are all incredible, dedicated, knowledgeable people BUT...we end up with a lot more on our to-do lists beyond the actual time spent in session. There is homework, and sometimes special supplies are needed. So, we don't just play with our child; we know we should play the right way. Here's what I got in the mail yesterday: a bill from a medical provider related to his care, a form to fill out related to his care, and a letter thanking me for my donation to FRAXA. There's also email and phone calls related to all of the above scheduling, doing, early intervening. I have honestly thought of hiring a personal assistant to help us with the logistics of it all.