The Looming Return to Work

I go back to work in two weeks. TWO WEEKS. Where did the time go?

I am freaking out, to be honest. It wasn’t like this with Jack. Back then, I couldn’t wait to go back to work. This time is so, so different. I want to stay home with my baby and watch him grow! I want to be able to pick Jack up from school and help him get his homework done!

I don’t want to spend 3 soul-crushing hours a day in a car commuting to a job where I take care of other people while I pay someone to take care of my kids.

This all makes the daycare search harder. I mean, aside from the fact that there are so few places in my area that take infants (which feels like silent judgment that I should be home with my baby), it’s difficult to find a provider I trust. If I’m going to outsource parenting to someone else, I want them to be AWESOME and better than me! I haven’t found that so far, though. I’ve found one place that is acceptable, but she has a tiny house and limited hours and only takes kids until they are 2 years old. And because she’s the only one taking care of the kids and there is a toddler and a 6-month-old, she wouldn’t be able to help Dez get to sleep – he would have to learn (quickly!) to fall asleep in a strange place by himself.

It doesn’t feel right.

I’m still searching. I know it’s down to the wire and so incredibly close to the holidays, but I’m doing my best to shove any rising anxiety to the back of my mind and continue about my business. This is how I’m getting through things (like yesterday’s nightmarish task of taking Jack to get his blood drawn – he is deathly afraid of needles and pain in general).

It’s not strength – it’s denial. LA LA LA EVERYTHING IS FINE. JUST KEEP SWIMMING.

How about a cute baby picture to distract us?

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Calgon, Take Me Away

I finally downloaded WordPress onto my phone. I’m much better at using my phone while nursing than a laptop. I lack coordination. Hopefully this will lead to more blogging.

It’s been a rough couple of weeks. Jack was hospitalized with a blood infection. The baby and I got sick. And then I got a case of mastitis.

Jack is out of the hospital and doing fine, but he’s been on a rigorous antibiotic regimen that involves mixing medication and running an IV several times a day. The worse one is the dose in the middle of the night, but the afternoon dose hasn’t been a picnic, either – usually I’m mixing the IV drugs while using my foot to bounce Dez in the bouncer. I’d run away to join the circus but I’m already there!

This case of mastitis is a bitch. After several days of trying to unclear a plugged duct in my armpit and dealing with horrid shakes and chills and dizzy spells, I called and got some antibiotics. Unfortunately Dez was not tolerating them well at all! So I did what you’re totally not supposed to do – I quit taking them a few days in. Dez is doing much better but I’m not. I now have a mass in my right breast and it hurts like hell! I assume if I keep nursing non-stop on that side it will eventually work itself out (or the breast will fall off?). In the mean time, I want to stay in bed and cry and sleep.

But! Jack has follow-up appointments. And Dez needs shots. And I return to work in a few weeks so I need to find a daycare that takes infants.

Ain’t no rest for the weary…

Kids Notes

I have had so little time to write. It sucks. I need to write. I am much happier when I have been writing.

That’s not to say that I haven’t been happy – I’ve been surprisingly free of baby blues and depression! But how long can I maintain good mental health without participating in something I know keeps me sane?

Anyhoo…here we go with a mad-dash post typed with one hand.

Notes on baby Dez

Dez is a very good baby thus far. Although he absolutely hates getting his diaper changed and wails every time. I think we owe our neighbors some wine for putting up with it. So far I’m not too sleep deprived, but I bet that will change when he wakes up to the world more. And when I go back to work (sob).

David gave Dez his first bottle last week. He took it just fine and then went back to nursing with no problems. Yay for Comotomo bottles!

I got my first smile out of the little guy yesterday when I stuck my tongue out at him. It was awesome! After 5 weeks of nothing but naps and nursing and diapers…finally some interaction!

I’ve been struggling with oversupply again. My body continues to think I should be feeding triplets. This means Dez is gaining weight like crazy and going through zillions of diapers. The cool part of oversupply is that I can pump 3.5 oz. in 5 minutes – on one side. There are lots of cons, though – green poop, gas, choking during letdown, more frequent nursing, so many diapers!!! I am managing better than last time since I know what I’m doing but it’s still frustrating. At least Dez is dealing with it much better than Jack did – maybe because it’s not quite as bad as last time.

At 9 days old, Desmond rolled from his tummy to his back…several times. And he has repeated that performance pretty much daily. He can also go from his back to his side…it’s only a matter of time before he can roll both ways. I fear the toddler years, which will likely come sooner than I would like!

It took a good 3 weeks for his umbilical stump to come off and the area still hasn’t healed so it will need to be treated with silver nitrite. The same thing happened with Jack. I don’t know what’s up with my kids’ belly buttons!

I’m slowly searching for a daycare provider to send Dez to when I return to work in December. It’s a stressful task, to say the least. I’m taking it slow so that I don’t go into a panic and decide to quit my job so that I don’t have to leave my precious baby with a stranger. I thought it’d be easier the second time around but nope! I hope we find a good one right off the bat so that we don’t have to go through everything we went through with finding good care for Jack.

Notes on Jack

Jack is a great big brother. He fetches all kinds of things for me and the baby and always tries to distract the baby during those torturous diaper changes. He’s been good at keeping himself busy when I can’t put the baby down. I’m so thankful we still have our reading and snuggle time together before he goes to sleep so that we can still connect.

He’s generally been in better health and made it to school most days this year. Just a bit over 5 months of treatment left!

We met with his new teacher and found out that he is behind where he should be for a third grader. The things the teacher has noticed are in line with what we’ve seen at home and are common learning problem areas for kids who’ve undergone chemotherapy. We asked his teacher to document anything she sees and we’re going to (again) seek an IEP evaluation – and this time we won’t back down. We’ll be in a better position to argue for the testing now that Jack has been going to school regularly and his teacher is actually noticing his difficulties.

He’s been struggling with his friendships at school. He is so upset when his best friend doesn’t want to play with him and says other kids don’t understand the imagination games he likes to play. I wish I knew how to help him. I had similar issues as a kid but I don’t remember being quite so upset by it. Jack is just so sensitive.

I’ve been very surprised that lately he’s talking more about cancer, too. He found a game in the app store that is all about destroying cancer cells and he loves it! He’s also been drawing blood cells and he found a plush cancer cell on amazon. It’s a little unnerving that he is suddenly so focused on it, but I also think it’s good that he is talking about it. Maybe therapy has helped?

 

Alright, I’d better post this before it self-destructs. More soon, I hope.

Summer Tastes Like Freedom

dance-32193_640School’s out for the summer! YEAH!

This is big for us. Probably bigger (and better) than it is for most households. See, during the school year, Jack spends weekdays at our house and then all but one weekend a month with his dad (who lives an hour away). In the summer the schedule flips, so we will actually get to enjoy weekends and have leisure time with Jack on a regular basis! We’ll get to have play dates with his friends, too.

Not to mention that for the next two months our household will have a break from:

  • Homework
  • Packing lunches (with foods Jack hasn’t gotten sick of)
  • Strict bedtimes
  • Dragging Jack out of bed for school
  • Worrying about Jack going to bed on time
  • Being late or calling into work due to Jack feeling ill
  • The small annoyance of Jack’s teacher spelling his last name wrong regularly (it drives me NUTS)

David and I will definitely be enjoying the quiet time on weekdays, too. With our baby due at the end of August, this is going to be the last couple of months where we get to have stretches of time alone together without any kids to take care of. We will enjoy that little perk of shared custody while we can!

We have an exciting summer ahead of us for other reasons, as well. Jack’s 8th birthday is July 13. His Make-a-Wish is underway and he should have a completed TARDIS console in his room by the end of summer. In early August Jack is scheduled to go to Camp Okizu’s oncology summer camp where he’ll be away from his parents for a whole week – EEP. We are nervous about it and we’re not sure he’ll actually stay the whole week, but we figure we’ll give it a try. We think it will be good for him to get a little independence.

August will bring our baby and a new school year – Jack will start the 3rd grade. And then things will get messy (messier) again.

So for now, I’m going to try to enjoy a little bit of freedom!

Too Many Things

Yesterday involved a lot of things. Too many things, which ended up overwhelming me.

These things included:

  • Cleaning up the bloody nose Jack had when he awoke. And then worrying if this was a sign of low platelets (it wasn’t).
  • Drawing blood to determine ANC (not related to the bloody nose) and running the vials to the lab.
  • Getting Jack out the door on time to make it to school (put your shoes on, take your meds, brush your teeth, do you need a jacket, don’t forget your backpack). It was dicey for a bit because he couldn’t put two words together and walked around like a drunk man.
  • Calling the vet to make an appointment for my cat who has a skin issue that just won’t go away, likely due to a thyroid problem.
  • Trying to remove the nail polish from Halloween and being left with blue-stained nails.
  • Calling the Department of Child Support Services to determine the status of my account, which has seen no activity since July. Apparently the DCSS has requested that the DMV suspend Jack’s dad’s driver’s license.
  • Notifying Jack’s dad and step-mom about the license suspension. In case they missed the memo. And worrying about the (almost for certain) blow-back that will likely occur.
  • Worrying about leaving the country (and Jack) in a couple of weeks.
  • Calling and leaving a message for Jack’s oncology case manager to ask about the results of the labs, which showed that the acidosis had gotten WORSE despite the changes in medication that happened two weeks ago. The case manager was not working today.
  • Contacting Jack’s pediatrician in an attempt to understand why Jack’s acidosis has gotten worse instead of better and find out next steps. Apparently the next step may be consulting with a nephrologist.
  • Letting the home tutor know we might not need him but, hey, it’s early in the week so ask us again in a day or two because Jack hasn’t made it to school more than two days in any given week over the last three months.
  • My day job, but from home.
  • Setting out the rest of Jack’s pills for the week and, then, ordering more.

That was all capped off by a full blown anxiety attack. ‘Cause this was all too much for one person to handle on any day and there will just be more tomorrow.

Hasta Luego

In less than three weeks, David and I are taking Jack to school, boarding our dog, and jumping onto a plane headed for Madrid, Spain.

No, we can’t afford it. It will increase the already sizable amount of credit card debt we carry. But we are going anyway.

Jack will spend Thanksgiving week with his dad (who gets holidays on odd years) and my employer has issued an office-wide mandatory vacation for that week. So I have a week where I can’t work if I wanted to and I won’t have my kid. A whole week!

And lord knows we need a vacation! David and I haven’t had a true vacation together since our honeymoon three years ago. We are lucky if we get to spend an hour together each night, and usually that time is spent talking about Jack’s health. We are tired and depressed and even though we see each other daily, we miss one another.

So yeah, we’re leaving the country and getting as far away from our day-to-day troubles as we can. We are going to dedicate that week to taking care of ourselves and renewing our relationship. It’s all about us! We can wake up when we want to and go wherever our mood dictates.

I am excited and so very hopeful. I hope that the radical change in location will help us set aside our daily stresses and replace it with awe over a different country and culture. I hope we can stop talking about Jack’s health for a while and instead talk more about how fortunate we are to have this wonderful family. I hope we can reconnect and enjoy our love. Maybe we can even plan for the future.

Mostly, I hope we will come back feeling refreshed and energized and better able to handle the challenges that come at us constantly.Jack has a year and a half of treatment left. Hopefully this break will fortify us enough to make it through.

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Hey, look! I’m participating in NaBloPoMo! You can, too!

Just Write: He’s Okay…Mostly, I Think

“How’s Jack doing?”

I’ve been asked this question at least five times so far today. Each time I give the same answer in the same way, “Yeah…well, eh, mostly. He will be okay, I think. He’s just not feeling well after chemo yesterday.”

He was doing just fine last night. In fact, he was very energetic and LOUD, humming or squawking while playing with his Legos. It was overwhelming to me, as I’d just come home from my trip to Type A in Atlanta. I wanted quiet.

This morning, though, it was too quiet. Jack crawled on the floor from his bedroom to the living room. He laid down on the couch while eating breakfast and I covered him with a blanket while pushing play on iTunes so he could listen to The Postal Service at low volume. He ate his waffle slowly, and afterward he leaned on me to get to the bathroom to halfheartedly brush his teeth. Then I picked him up and carried him back out to the couch.

He talked in hushed tones and complained of stomach pain. I smoothed his hair away from his face as I took his temperature – 98.0 degrees. I asked if he wanted to try to go to school for a bit and see if he felt better. His big brown eyes squinted up at me and he said, “I just don’t have any energy, Mom.”

“Okay, honey. I’ll tell David to come home from work. You just rest,” I replied.

I looked at our finances while I waited for David to come home from work. I wondered if we could somehow make it work on one salary so that I could stay home full time with Jack. I worried this was a pattern that would not go away. I added and subtracted and, with a knot in my stomach, acknowledged that it was impossible – we have too much debt and a large mortgage payment.

I called the clinic to get confirmation of Jack’s ANC. The nurse told me it was sitting at 690, which is fairly decent but not great. She asked how he was doing and then said, “Call us if he isn’t feeling better by the end of the week.”

I called the school and answered the question again. Then I drove to work, where I told a few more people that Jack wasn’t feeling well. I got a call from my sister in the afternoon, and I spoke to one of the care providers at Jack’s after-school program – both asked and I explained in that halting way.

Jack’s okay…mostly. I think. We’ll see.

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This post was inspired by Heather’s Just Write – an exercise in free writing your ordinary and extraordinary moments.

When Self-Care Comes In Second

Jack is back to school! It’s his second week, in fact. And it’s his fifth day making it to class. Yesterday was picture day and he was told by the photographer that he looked like Harry Potter, which made him very happy.

Antibiotics are done and chemo has restarted. As of Sunday Jack’s ANC was an outstanding 1296! All very good things. Whew, we can breathe again.

Life is back to what is ‘normal’ for us, which means it’s catch up time.

Now that things are moving again and we’ve returned to our regularly scheduled life, fatigue and stress are hitting me hard. I can function like nobody’s business when in the middle of a crisis but as soon as it’s contained, I need to sleep for a month! I wish it wasn’t this way – I wish I had been able to rest more while we sat in the hospital room doing a bunch of nothing. But when I napped, I had nightmares.

So ever since we came home from the hospital, I’ve been caught between needing very badly to get some rest and downtime, and stressing out about that rest getting in the way of catching up on all the things I couldn’t do during that week in the hospital. Mostly that’s a lot of paperwork, bill paying, laundry, and house cleaning. Oh and my job. But there is a big chunk of it that is taking care of myself and also getting time with my husband, things that always seem to get pushed behind everything else.

I’m tired, I’m overwhelmed, and I’m in desperate need of both time alone and time with my husband. And I’m depressed because I can’t see any way around this pile of ickiness.  I just have to go through it.

Family leave should include two parts – the part where you take care of your family, and then the part where you recover from taking care of your family. Where’s the downtime for the caregiver?

I know it’s only a matter of time before I feel like things are okay again. I’ll be able to look on the bright side more readily and I will feel less irritated by things that aren’t going smoothly. Maybe I’ll even be able to blog properly.

Of course, if you hear I’ve run off without a word to anyone, it’s likely I’ve found a very deep hole to hibernate in until the storm in my head has passed. I’ll come out in my own time.

Maybe.

On The Mend

Today is my first day back at work after two and a half weeks of being off to care for Jack. I’m not gonna lie – it’s hard to come back to work. It’s hard not to have the option to nap some time during the day. But it’s also nice to be doing something that has nothing to do with my son’s health.

I am really glad the last two and a half weeks are behind us! A mystery illness causing febrile neutropenia, a hospital stay, tests galore, so many medications on a very rigid schedule…and so much boredom. There are only so many movies to watch and so many crafts to work on. We’ve watched Seasons 5-7 of Dr. Who several times over and Jack has either drawn or built several incarnations of the TARDIS.

Jack’s ANC recovered on Friday, so he was able to get off of the antibiotic he’d been on for two weeks, but then he was diagnosed with a bacterial infection called c. diff. It’s something that attacks a lot of patients who’ve been on antibiotics for a long time because antibiotics strip the good bacteria from the gut. So Jack started a new medication for that, in addition to restarting his chemo. Thankfully the new medication is not one that has to be given on a strict schedule so I am no longer getting up at 5 and 6 am. Yay!

And tomorrow Jack gets to start school! WOOHOO!

I’m excited for this school year. He’s starting relatively on time (this week will be the first homework week, so he hasn’t misses much) and his best friend is in his class this year. I met and spoke with his teacher last week and she is really great! We’re all more accustomed to the school/work/medications routine than we were when he started 1st grade, as well, so I think it will be a smoother year. I hope.

Now that Jack’s ANC is back up, he’s back on maintenance levels of chemo, and he seems totally fine, I’m feeling much less worried about him. I’m so thankful he’s on the mend and things are getting back to normal!

Summer Hibernation

I’m working on stress relief this summer. So far it’s going well. I’m taking a multi-pronged approach and I’m already feeling much more like my old self.

I like to call this my “summer hibernation.”

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Firstly, inspired by Jack’s love of drawing, I’ve picked up the meditative art of zentangle. It’s super easy to start and you don’t have to be ANY good at drawing – it’s all dots and lines. In fact, I have the hand tremor of an arthritic old crone and I’m still able to do this:

Zentangling helps quiet my mind when my thoughts are racing and I’m feeling anxious. And it gets me off of my iPhone when Jack wants me to sit with him while he draws. The repetitive motions are soothing to me and unlike the glare of a laptop or smartphone, paper and pen don’t glow and overstimulate me or bother my eyes.

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I’m catching up on television shows that everyone else has already seen – we just finished season 2 of Homeland and are about to start Shameless from the beginning. In between that we’ve been catching some comedy through Amazon Prime (Zach Galifianakas and Bill Burr). Jack recently introduced me to Dr. Who so I’ve been checking that out (we started off with the 11th doctor and he is my favorite right now!).

We’ve gone to the movies quite a bit. We’ve taken Jack to see Monsters University, Epic, and Despicable Me 2 (Monsters U was the best of those, IMO). David and I went and saw World War Z, as well, although I wouldn’t call that relaxing in the least. We came out of that theater feeling like we need to build a bunker ASAP!

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We attended High Sierra Music Festival over the Independence Day weekend. That involved camping, swimming, eating, and seeing a crapload of musicians perform LIVE – including the very epic Robert Plant! My new favorite performer is Sarah Jarosz (we got to watch her perform with just her guitar in an “MTV Unplugged” type performance at a late night session). This song is breathtaking live:

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I bought a Groupon for my husband and me to receive three massages each. We’ve both gone once so far and it was definitely the right choice! Two more sessions should help oust what’s left of last year’s balled up tension.

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I’m being conservative with social plans, too. Usually when Jack goes to his dad’s (during the school year it’s on weekends, during summer he goes on weekdays) I tend to get all the ‘fun’ in but I’m slowing down and taking it easy. I’m allowing myself to be a bit anti-social so that I can recharge before the summer break ends. I love people so much, but they tend to wear me out. (It might surprise some of you to know that I’m on the introverted side.)

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Other than that, it’s certainly helped my stress level that I’ve been able to focus on getting caught up (and ahead!) at work during the week since Jack is with his dad. Our debts are finally getting under control a year after we bought our house, which also takes a huge load off! Maybe soon we’ll even be able to decorate the place.

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School starts in a little over a month. Until then I think I’ll keep hanging out in my cave.

What are you up to this summer?