It’s A Hard-Knock Life (For Us Parents)

I have a migraine right now and my hip is fucking killing me. I would love to go to bed – I don’t even care that it’s not even 9pm on a Friday – but I can’t go to bed because Dez is trying to go to sleep in said bed and my presence is not conducive to him falling asleep.

This is parenthood. Sleep is like vacation to me – better, even, because it requires much less planning (and yet is no less elusive at times).

David and I are involved in a tag team effort at bedtime these days. I nurse Dez, then David steps in when Dez decides maybe he doesn’t want to go to sleep and tries to make a break for it. Daddy means business, though, and when he walks in the room, Dez knows his attempts at delaying bedtime are doomed.

Being the parent of a toddler is hard. I had forgotten just how hard. I guess that’s what happens when you wait eight years to have a second child! This little person who is most definitely his own little person and yet can’t do a damned thing for himself yet (except stuff too many yogurt melts in his mouth at one time) can make you question your choices in life, your sanity, and your self-worth. I had forgotten, but now I remember: I do not like the toddler years, Sam-I-Am.

Frankly, the pre-teen years aren’t seeming to be much better at this point. I’ve been meaning to write about all kinds of Jack-related things but it’s a big ball of complexity that I barely want to think about. The shortish version is this – he has been diagnosed with ADHD, dyscalculia (a math learning disability), and anxiety brought on by medical-related experiences. And in a year he goes back for more testing because the neuropsychologist isn’t sure she was able to get him all figured out.

At nearly the same time that we got the diagnoses and the rest of the results of the neuropsych testing, things at school got particularly bad. Jack and his teacher are at complete odds. It’s partly Jack’s fault and partly the teacher’s fault, and both of them are less than flexible people. We are working on Jack’s behavior, though I think we (and the teacher!) will just have to accept that Jack will have some bad days.

Therapy has been successful, though, so that’s a plus. Yay! I’ll take all the victories I can get.

Back to Dez…he’s a weird little fellow. He’s no longer that magical unicorn baby. He is vocal and can be clingy and so very quirky. He took his first unassisted steps a few days before Christmas, and then hasn’t walked since. He just goes around walking on his knees (which are now quite callused). He doesn’t say much, either. He has some words but very few that are clear. That doesn’t stop him from chatting, though. He talks a LOT – just not in English.

He also doesn’t sleep for shit. He is a terrible, no good, very bad sleeper. I think he must have gotten it from David because Jack and I both excel at sleeping!

He is a great eater, though. He’s got Jack beat on that!

So clearly we’re living a hectic existence right now. I know it won’t last forever and one day I will look back and miss the moments where Jack helps his brother walk around the living room or Dez snuggles up to me for midnight nursing sessions…but right now I am dreaming of peace and quiet.

Fewer headaches and a massage would be lovely, too.

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.

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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.

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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.

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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.

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So Many Appointments

Jack has so many appointments. ALL THE TIME. Chemotherapy is only part of cancer treatment – there are a lot of extras that come along with it. Bonuses, if you will. (Ha!)

This is a snapshot of Jack’s January appointments – minus the things I’ve pushed off into next month, like the one that checks that his spinal fluid pressure isn’t damaging his optic nerve or the echocardiogram to measure organ damage from 3 years of chemo. It also doesn’t include the learning and psychological assessments he’s had at school this month.

January 2 – Ultrasound to check for damage to veins from Broviac catheter (looks good! whew!)

January 9 – Therapy

January 12 – Pediatrician due to dizziness, fatigue, headaches, nausea (inconclusive!)

January 15 – Lab draw (to hopefully explain dizziness, fatigue, headaches, nausea)

January 16 – Breathing treatment

January 20 – Lumbar puncture, oncologist exam, chemotherapy infusion

January 21 – Eye exam

January 22 – Dental cleaning (if his platelets and white blood cell counts are high enough)

January 23 – Therapy

January 27 – ADHD Assessment

As you can see, the longest stretch we’ve gone without making a trip to Kaiser was 7 days. BUT! Add on Desmond’s well-child check (January 5) and that stretch disappears.

I think we might spend more time at Kaiser than at home.

I Don’t Wanna Grow Up

I still tuck Jack in at night. We usually read two books before bed to help him wind down and then I turn off the lights, lay down with him, and we chat for a few minutes. Last night we had to skip reading books because he hadn’t done his homework at the after-school program. Homework ended up eating up the evening and I tucked him in after 9pm.

He didn’t think he could fall asleep without reading books. He told me that they helped him with his fears. He is so scared and he doesn’t even know why. I think it probably has a lot to do with all of the VERY BIG THINGS he has to handle at such a young age, along with his great imagination. The world can be big and scary when there is no end to your imagination and you know that bad things can happen to good people.

Like cancer to a child.

I looked at him, his eyes wide with fear while he tried to hold back tears. I told him he would be okay, that we would protect him. Nothing could come into our house and get him – he has parents and a big dog to keep watch.

We can’t keep cancer away, though. He knows that. His fear persists.

I studied his face, looking at the nose so like mine and the eyes just like his dad’s. Suddenly he looked so grown up to me, even with the fear and the tears. “You are growing up so fast,” I murmured.

The tears burst from him and he exclaimed in a panic, “I don’t want to be grown up already!”

“Oh, honey, don’t worry! You’re still a kid! You can take all the time you want to grow up! I know you’re still young – you just look big to me, especially next to your little brother. Don’t worry, you’re not grown up.”

That seemed to calm him somewhat.

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Jack holding his little brother.

Then we talked about getting ready for Christmas – picking out our tree this weekend and maybe watching A Charlie Brown Christmas. He’s never seen it, so I told him about what a dope Charlie Brown is and how he picks the worst, saddest little tree. Jack laughed out loud at that. Ridiculous Charlie Brown!

Then he said, “Maybe he picked that tree because he knew no one else would pick it. He was being nice.”

“I think you’re right,” I told him, and we said goodnight.

Write a Letter to Santa and Help Wish Kids!

Between November 7 – December 24, visit your local Macy’s store or Macy’s Believe online to submit your child’s letter to Santa and help make dreams come true for Make-A-Wish kids around the country. For every letter received through December 24, Macy’s will donate $1 to Make-A-Wish (up to $1,000,000).

Jack LOVES the idea of Santa. In prior years he has written Santa several letters, made him cards, even even built a shrine in his room. At eight years old, it seems that he might be starting to waiver in his devotion and questioning a bit more, but still – he wrote a letter to Santa this year, asking for a haunted house and asking that Santa respond if he got the message. He included his very own “return receipt,” which was a drawing of some toys and dashed lines to indicate where to cut.

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Santa dutifully responded and Jack was beyond excited. He just knows Santa will come through for him.

David and I set to work looking for a toy haunted house. We didn’t find much, but we didn’t want Jack to feel let down by Santa, especially on the last year he’s likely to believe in him. So we bought a dollhouse and developed a plan to paint it, sand it, and turn it into something haunted. I was also able to find a “monster bucket” on (post-Halloween) sale so that should help us haunt the place up.

This may seem like a lot of effort, but Santa is just one small thing that adds magic to Jack’s life amid all the hardship he endures due to Leukemia. Make-a-Wish helped in this effort this summer, as well, when Jack was granted his wish for a TARDIS bedroom makeover. Jack is still delighted by his room and with the granting of his wish, we saw a happiness in him that we haven’t seen in a long time.

He's in love.

He’s in love.

This holiday season Macy’s is helping to bring magic to more kids with their Believe Campaign by working with the Make-a-Wish Foundation! This year marks the seventh year of Macy’s Believe campaign, which invites believers of all ages to drop off letters to Santa at any Macy’s store by depositing them in special, designated Santa Mail letterboxes. You may also submit your letter online at Macys.com/believe.

For each letter received by December 24th, Macy’s will donate $1 to Make-A-Wish, up to $1 million, to grant the wishes of children (like Jack!) with life-threatening medical conditions. Last year, Make-A-Wish granted the wishes of more than 14,000 children across the United States. A wish is granted every 38 minutes!

Here in the Bay Area, Make-A-Wish is working on granting the wish of 4-year-old Joysse, a girl from San Mateo who was diagnosed with Leukemia. For her one true wish, Joysse asked for a princess party complete with purple and pink decorations, a princess dress with a cape and crown, cake and ice cream and more! She is so excited that she asks her mom, Gabriela, about it every day. Her party is scheduled for January, but as a surprise, Macy’s will be helping her prepare for her wish with a very special celebration at the San Francisco Union Square location.

To help kids like Jack and Joysse this year, make a trip to Macy’s or visit them online to submit your child’s letter to Santa. It’s totally free for you and yet you will get the satisfaction of knowing you’ve helped bring some magic back to the life of a child with a life-threatening illness!

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