Jack Is 9 Years Old

My first baby turned 9 years old on Monday. It’s simply unfathomable to me that 9 years have passed since Jack was born – nearly a decade since he was conceived. As I wrote in his birthday card, there must be magic or trickery involved in the passage of time because it feels like only yesterday that he was born.

IMG_7417

Proof he was once a baby…

Jack has grown and changed so much in his 9 years. It’s highlighted especially next to his babbling, roley-poley baby brother who can’t walk or say a single sentence. Jack is writing poems and stories and reading novels. He has ideas about how the world works – and he expresses them clearly – and they are all his own. He is goofy and laughing one minute, and the next politely requesting that I not jokingly call him a weirdo. He is 4’4″ – less than a foot of height separates us now! His feet are sure to eclipse mine in size soon, too.

IMG_5614.JPG

Tween boy!

There are still some very kid-like qualities to him, of course. He still prefers imaginative games over board games. Although his diet does not resemble that of most kids (he would live on raw fruits and veggies if he could), he is still a pretty selective eater. He has branched out a bit – in the last 6 months or so he finally decided he liked pizza – but for the most part he eats like he did when he was 3. He loves to draw (as he has since he was 2), and has taken a liking to coloring, as well. He still loves to have books read to him before bed – we just finished Nightbirds on Nantucket and Harriet the Spy, and now we are reading The Tale of Despereaux and Alice’s Adventures in Wonderland. He could easily read these books to himself (he is reading Harry Potter & The Goblet of Fire on his own) but he is attached to the routine and loves the one-on-one time. (I love it, too.)

Jack is a cerebral kid – always has been. He has zero interest in sports and other physical pursuits, although he does run around on the playground with his friends (as long as they are imagining they are monsters or aliens at the time). He loves science fiction and is currently devouring any form of media on aliens he can find. He was perfectly happy to get a bunch of books for birthday presents this year – something that initially bummed him out at his 8th birthday party (although he appreciated it later). He poses questions about the world that are incredibly challenging to answer – and he likes to listen to science and history podcasts with me.

IMG_5414.JPG

Looking spiffy in a suit and tie.

Our relationship has changed somewhat, partially due to his age and partially due to the addition of Desmond to the family. I’m less the default parent that he turns to when he needs something. This has made his bond with David much stronger, and Jack seems to want to learn from David more and more. He has grown more independent, as well – he will disappear into his bedroom for extended periods of time to read or write or just be by himself.

He is such a sensitive, caring kid. He is funny and kind. He is smart, quirky, and just seems to have a special light inside of him.

I’m so glad that I get to be his mom and watch him grow up.

IMG_5536.JPG

10 Months Old

A catalog came in the mail a couple of days ago that advertised first birthday party supplies. It wasn’t until then that I realized that I need to start planning for Desmond’s first birthday. It’s only two months away – and the summer months tend to fly by at a quicker rate, it seems!

But let’s talk about Dez at 10 months. This recent picture caused me to dub him my muppet baby.

baby with crazy hair

Muppet baby!

It fits, no? That wide-mouthed grin and fuzzy hair is exactly the thing Jim Henson was all about. In fact, we’re thinking of dressing Dez up as Kermit the Frog for Halloween this year.

Or, even better in my opinion – Beaker!

Desmond doesn’t have real words yet, but that doesn’t stop him from orating steadily. He raises his hand to the air to call for attention and then lets out a steady stream of babble. It’s adorable. (Except when we’re trying to watch Orphan Black and can’t hear anything over his ranting.)

He is generally a happy little guy, but he does have a temper. When something is taken away from him (usually it’s a piece of fuzz he managed to find on the ground and attempted to eat) he stiffens his whole body, puts his arms down at his sides, and lets out a squeal of rage. He is pretty quick to get over it, though, once you distract him with something else – like the TV remote.

Baby with tv remote

Yessss Yessss, now I control it all!

He loves, loves, loves the TV remote. Our cell phones and the Playstation controller come in a close second. When he spots one of these items within his reach, he starts chuckling to himself. I’m sure he is saying to himself, “Yesssss, yesssss, I will soon have them all where I want them!”

Maybe he should be The Brain for Halloween…

He still prefers the army crawl over the more traditional crawl. He spends most of his time standing now, though, with a bit of cruising thrown in (if the TV remote is just out of reach). He hasn’t quite figured out how to get down from standing, so he usually just hangs out like that until his legs get weak and he falls over. Or he whines until we finally can’t stand it anymore and help him down (and then he cries because he didn’t want to get down, stupid parents!).

baby standing in crib

His two bottom teeth are in. One is slightly crooked, which just adds to Desmond’s charm. He’s getting more hair all the time, but the majority of it is still in the top middle of his head and it likes to stick straight up (see the part about being a muppet, above). I can no longer see any traces of positional plagiocephaly – which, whew! He still struggles with a nasty cough after his bout with RSV in April, though. He hacks like the most addicted little smoker, but it doesn’t slow him down. The pediatrician said he’ll likely grow out of it by age 2.

Food makes him incredibly happy. He will eat anything and seemingly never gets full! He is very demanding about sharing our food, particularly if that food is pizza or mashed potatoes. I now keep those little cereal puffs within reach at all times so that I can actually eat my meals.

baby eating mashed potatoes

Mashed potatoes on his face!

Dez can clap (which he does constantly), wave (which he does sometimes), reach for people, and he is starting to hold onto me when I carry him. He is ALWAYS moving, so he crawls off of me in the middle of nursing (but then always comes back for more) and he will not stay put on the changing table!

He loves the bath. He splashes and splashes, then cries when we take him out.

baby bath splash

We’ve started calling him the “gateway baby” – a term I first heard from comedian Jim Gaffigan. Think you don’t want kids? You may change your mind after meeting Dez – he is THAT charming!

We love our sweet second child and can’t imagine life without him!

IMG_5605.JPG

Hanging with Mom.

No Way Out But Through

When Jack was diagnosed with Leukemia three and a half years ago, I focused on the “End of Treatment.” I thought we would do what we could to get through the difficult treatment process, but that eventually we would be done.

Well, to be perfectly honest, I thought we would be done when the Induction phase (where remission is achieved) was complete – 30 days after diagnosis and the beginning of treatment. Then I readjusted my thinking – we would have most of the hard stuff behind us after Consolidation – the chemo-heavy “blast the hell out of any remaining cancer cells” phase. I figured Maintenance would be unpleasant, but easier that those prior phases – I thought we would pretty much be done once we got to Maintenance. But then Maintenance lasted over two years and while much of it went smoothly, we did not feel done at all – instead, the hardship of all we’d had to endure up to that point caught up to us.

THEN I thought – End of Treatment is the ticket! End of Treatment would come and this business would be behind us! But, well…

I’ve lost count of the number of therapy sessions Jack has had at this point. With this latest therapist, we’re at least past 10 sessions by now. This therapist has been the most helpful, and Jack has had two successful blood draws! By “successful,” I in NO WAY mean easy. There was shaking and tears, and both times I thought we would not get the draw. But Jack managed to push past his fear and do it!

The first time he was successful (after 8 therapy sessions and countless “needle exposures” at home), he felt jubilant and accomplished afterward! He even said it hurt much less than he thought it would. But the second time was harder for some reason, and afterward he felt tired and defeated and weepy. It didn’t help that one of the phlebotomists in the lab muttered, “He’s never going to be ready,” which Jack heard.

Two steps forward, one step back. Can I bill the lab for the therapy appointments, ya think?

As the therapist delves deeper with Jack into the medical trauma he has experienced, the emotions (mostly negative) get harder to deal with and manifest that difficulty comes out in various ways. Fear randomly comes and goes, insomnia often plagues him, and Jack has felt more of a need to cling to his parents. Some OCD tendencies showed up during the second blood draw, something we hadn’t seen in him before, and then again in his therapy session the next day. Depression – a despair that no 8-year-old should even be able to contemplate – came over him at bedtime on Sunday.

Having gone through trauma therapy myself, I know how hard it is and that when you are in it, it feels like nothing will ever be okay. There are many forces within our minds that try to protect us from feeling the pain of trauma – they tell us to run from even distant memories of it. It’s exhausting to fight your own brain. It takes a fierce, stubborn person to do it, and lots of support.

I have no doubt Jack can do it. We will support him every step of the way.

But he has many doubts and fears. After the therapy appointment Saturday, which had him so upset that he started to run around the room near the end and stopped being cooperative, I tried to reassure him that it’s all worth it.

“It doesn’t feel worth it! It feels terrible!”

I know, buddy. It really, really sucks.

The blood test results – what much of this effort and urgency is about – look pretty good. Jack’s immune system is recovering, which is very reassuring. But for some reason, his iron is super low and that leads to other worries, more medications (thankfully, just a liquid iron supplement at the moment), and additional tests.

We don’t want more worries, more medications, or more tests. Our cups not only runneth over from these things – they’re being crushed by the weight of them. We don’t want anymore, thank you!

We have no other choice, though, so it’s one foot in front of the other. I’m coming to terms with the fact that I have to stop thinking in terms of when cancer will be behind us. When you’re in it, you can’t see through to the other side.

You just have to keep going anyway.

Sharing Our Story About Pediatric Cancer

Saturday we attended the Grand Finale event for the Leukemia & Lymphoma Society’s Man & Woman of the Year campaign (Bay Area Chapter). Jack and Celia, the Boy and Girl of the Year, handed out the awards to the participants and the winners were announced. The grand total for the campaign was also announced – 10 weeks of fundraising resulted in $804,000 for the Leukemia & Lymphoma Society. Candidates who raised over $50,000 are able to directly choose a research grant to fund with that money. Pretty awesome!

I am hopeful that after my talks with some of the candidates, they are aware of the issues in childhood cancer treatment and will direct their funds toward those research grants.

Jack Boy of the Year

At dinner during the event, I sat next to the President & CEO of the Leukemia & Lymphoma Society, Dr. DeGennaro. He is a very nice man and it was clear he cares deeply about what the organization does. I took the opportunity to let him know what it meant to us to be part of the Man & Woman of the Year campaign, and also to emphasize that we need more focus on new, better treatments for kids (an area that is consistently underfunded). He said it’s one of the issues at the forefront in his mind (as well as prevention!), and that one of the challenges with getting new treatments for kids is that many in the medical community see the high survival rates (over 90% for ALL, for instance) and think their work is done.

Researchers, physicians, and advocates…we are nowhere near done. Cancer treatment for kids takes YEARS and it’s incredibly hard on the whole family. While the treatments usually work, they are not great – they cause secondary cancers, organ damage, learning problems, and other terrible (and sometimes deadly) side effects. Most of the time during Jack’s treatment, I didn’t worry about the cancer killing him – I worried about infection, which was statistically more likely to be a problem.

Friends, this is my challenge to you – please share our family’s story whenever you can. My wish is to spread awareness and hopefully get more funding diverted to childhood cancer research – for reference, only 4% of federal funding is devoted to childhood cancer through the National Cancer Institute. This is despite the fact that cancer is the #1 disease killing children.

Here is our family’s interview video that was made as part of this campaign. Please feel free to share it far and wide.

Note: I’ve read that if you donate to LLS, you can earmark the funds for pediatric cancer research by making a note in the memo section that states: RESTRICTED TO PEDIATRIC BLOOD CANCER RESEARCH. Additionally, for those who are donating at least $10,000 LLS says you can tie your donation to a specific research portfolio.

A Much-Needed Date Night

Since Desmond’s birth in September of last year, David and I have been out alone ONE TIME. That’s right, one measly time in over 8 months. And do you know what we chose to do that time?

We went to the movies.

Now, we like the movies but it’s not exactly quality time. We couldn’t talk to one another and we didn’t even see something romantic. We saw Birdman (it was weird – but good – and not in the least bit romantic). Afterward we ate at a crummy Thai place and then went home. The night was more about checking a task off our list than it was about spending time with one another.

That was back at the beginning of February, so we have been in dire need of a real date night – with time to connect and be US! The problem was that we didn’t have a babysitter to call. Believe it or not, I haven’t actually used a babysitter since Jack was about a year old! I’ve always relied on friends or just stayed home. (Mostly the latter.)

Enter UrbanSitter. I signed up to become a member and was instantly able to search for someone who had infant experience, was CPR-certified (because Dez is putting everything in his mouth he can get his hands on!), and had a background check on the website (I’m a little on the paranoid side). I filtered the results further by searching for sitters close to my house and those that are known through my local parent networks (in this area, Berkeley Parents Network is a go-to for all kinds of things!).

When I connected my account to Facebook, I saw that some of the sitters in my area had been hired by my friends! Further, I got a personalized welcome email from a representative with the site who provided recommendations .

I searched and found a couple of babysitters in my price range that I wanted to interview, and I also posted my request for a sitter on the Jobs section of the website. Almost immediately, responses from sitters who were interested in the job started rolling in! I selected a couple more babysitters to interview from that pool of people.

The phone interviews were super easy to schedule – sitters plug their schedules into a calendar on the website and keep them up to date, so you can look directly at the individual calendars, find a time that works, and click to request the interview spot. The sitters then log in and confirm the time – then the site emails a confirmation with contact information. Easy peasy.

Every interview (four total) went perfectly. It was a tough choice and ultimately the person I choose had to cancel a couple days later when she got sick (which, I completely appreciate – we’ve had so much illness in our house already). By that time, the other sitters I had interviewed had all taken other jobs, but it was not a problem at all! I ran a search again with the date/time I needed plugged into the search parameters, and found a couple more sitters who were available on short notice. I scheduled two interviews and ended up booking the first person I spoke with right over the phone!

Meet Jane (yes, that’s her real name). She is a nanny, a former non-profit employee, and a future Waldorf teacher.

babysitter

Jane and a peacefully sleeping Dez

Dez took to her within 5 minutes of her (perfectly on-time) arrival. She was warm and friendly and started playing with him right away. We chatted and got to know one another for a good 20 minutes, then David and I took off for our date night. Dez didn’t even make a peep when we walked out the door – he was completely absorbed with the strings on Jane’s hoodie.

We had a blast! We went to a wine & tapas bar close to our house and treated ourselves to everything our bellies desired. We talked about anything and everything (podcasts, vacation, plans for our house and future), somehow managing to branch out beyond the topic of our kids. We were able to truly relax and enjoy ourselves for the first time in months!

Cheers

A toast to us!

After dinner, I checked in with Jane just to make sure Dez hadn’t turned into a monster while I was gone. He had fallen asleep and all was well. David and I then hopped over to another restaurant for dessert, Prosecco, and coffee. I will admit that I got a bit tipsy (but it was totally worth it!).

When we arrived back home, I thanked Jane, paid her with my credit card through the UrbanSitter app, and David drove her to BART while I snuggled with my baby.

MamaDez

Nighttime snuggles!

Dez slept super well that night and we couldn’t have been more pleased with our experience. UrbanSitter may have just saved our marriage, you guys (or, at least, our sanity)!

I highly recommend the site for your next date night or quick getaway. You can find all kinds of care for your child – in advance, last minute, overnight – and have access to wonderful caregivers who are reviewed by other parents or have a background check. If you use the code FORFREETRIAL when you sign up for your UrbanSitter account you can get a free month to try it out (normally membership is $14.95 per month).

When is the last time you went on a date night or had some precious personal time?

I was selected for this opportunity as a member of Clever Girls and the content and opinions expressed here are all my own.