Special Needs Life

  • Every 6 weeks Jack has an ophthalmology appointment to check on his optic nerve and make sure it hasn’t been damaged by excess cerebrospinal fluid.
  • Every 4 weeks he goes to the oncology clinic for a check-up and chemotherapy infusion.
  • Every 12 weeks the clinic appointment also involves a trip to the hospital for a spinal tap under anesthesia.
  • Every 4 weeks he goes in for a nebulizer treatment to protect his lungs from pneumonia.
  • He has blood drawn for labs every 2-4 weeks.
  • There are weekly dressing and cap changes.
  • Nightly flushes of the Broviac catheter.
  • Pills three times per day…

There are also the normal appointments with his pediatrician and dentist and optometrist that happen at various intervals.

We need to add occupational and/or physical therapy in there. We need to add therapy for anxiety, too. Oh and we’ve been meaning to get a follow up from the neurologist.

Can’t forget about the random trips to the ER or stays in the hospital.

Add in school and homework. Add in my own appointments, pets, a house and a full time job. There is just not enough time – or energy – for everything.

There is no time to LIVE. And I can’t afford to quit my job or get a nanny. I’ve done the math many, many times. (And, frankly, sometimes my job is a break from all the rest of it.)

For our family, some of this ends when Jack’s cancer treatment does. If we’re lucky, Jack will be completely cured and nearly all of it will go away – cancer will be a distant memory. That’s what we’re hoping for.

But I know there are so many families out there who don’t have an end in sight to the demands of special needs. I don’t know how you do it, day after day and year after year, especially those of you who see this and say, “that’s nothing!” Maybe, like me, you just do it and then marvel at all you accomplished after the fact. Or maybe you don’t even think about it.

In any case, I bow down to all of you out there living with special needs who have gone before us and will keep on living this crazy-making life. I’m in awe of all you do.


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Just Write [108]: In Charge

He walked into the bedroom where I was laying alone in the dark, hiding. A mountain of wadded up tissue was on my nightstand and my phone was in my hand. New tears popped into my already puffy eyes, even though I’d already been crying for hours. How could I still have tears left?

“I know I’ve said this before, but you need to ask for help. You need to tell me what you need me to do.”

“I don’t want to be in charge of everything,” I mumbled. I was completely enveloped in self pity.

“You don’t have to be charge of everything,” he replied.

I thought ‘you’re wrong.’

You need to tell me what to do.

That right there means I’m in charge. I have to know what needs to be done and I have to delegate the things I can’t do.

I never wanted to manage another person. Long ago I recognized that counting on other people to do things in my stead is not something I excel at. My childhood didn’t prepare me for that – it prepared me to take care of things myself. And that continued beyond childhood – I’ve made my career as an administrative assistant – someone else’s right hand. I’m the one people depend on, not the other way around.

Of course, being a parent means I am managing someone, albeit in a different way. I am the ultimate authority in my house about what happens with my son. I chose that role and I accept it.

I am not the best boss, but I fulfill my commitment. I’ve helped my son learn and grow and even thrive (despite his illness and my own shortcomings).

But taking care of a special needs child demands more of me than I ever knew was possible. I am not looking to unload the responsibility or shirk my duty. It’s just that sometimes it is exhausting. Because regardless of how many parents Jack has, I am still in charge.

I am in charge because I know more about him and his medical condition than any of his other parents – by choice. I am in charge because the doctors look to me first for information. I am in charge because I have the job that supplies the insurance. I am in charge because I have primary custody – again, by choice.

I am in charge because, in so many instances, I am the ONLY person Jack lets be in charge of things related to him.

I make his doctor appointments. I sort his pills every week and refill his prescriptions. I call the clinic…over and over. I refresh the test results page and I calculate his ANC. I arrange for childcare or changes to his schedule with his dad and step-mom. I know which foods he eats and which he isn’t into anymore. I know when he’s breathing funny or he is on the brink of a meltdown. I’ve documented so much of his life – on paper and in my mind – and I am the default caregiver because of it.

I could ask for help with all of those things, but taking care of Jack is so ingrained in me that it doesn’t even occur to me to ask for help. Why would I? It’s MY JOB. I’m his mother.

No one can lighten that load – I can delegate every parenting-related task I have, and I will still feel the weight of each responsibility because I am in charge no matter what anyone says.


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

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I Hate Cancer

I hate that it turns my affable little boy into a wild animal who growls and beats on everything in site.

I hate that a temperature of 99 degrees leaves me worrying that he is getting sick. I mean, it’s elevated by .04 degrees! That should mean nothing!

I hate that my heart breaks anew on a regular basis. Today it happened when Jack melted down for no real reason, then told me about his friend’s brother who got cancer in “a place we don’t talk about” (he pointed to his genitals). That is so SCARY for a little boy!

I hate that much of our quality time has been taken up by dressing changes and medication and doctor appointments and blood tests.

I hate that my own health has suffered, as well.

I hate that we don’t know what’s going on in Jack’s body, that we have to blindly trust that the medications are working.

I hate the fact that all the immunizations he had may be wiped out.

I hate that we have to deal with school and work when what we really need is a mental health day (week/month/year).

Much to my surprise, I hate that Jack doesn’t energetically pop out of bed on his own at 7am like he used to.

I hate that I have to give my child poison and make him feel even worse and risk damaging his vital organs.

I hate that I have to be strong for him when all I want to do is hide under the covers and cry.

I hate that I can’t wrap my brain around money because of all the stress…and I hate the credit card debt that has resulted.

I hate being so sapped and bone tired all the time.

I hate that I no longer have the time or energy to devote to friendships and family members and taking more than decent care of myself.

I hate that cancer is on my mind ALL.THE.TIME.

I hate the constant pull to just give up – that I can’t possibly listen to even a little bit.

Cancer is bullshit and I hate it. A lot.

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Joe interviewed a daycare provider on Friday and called me (which is amazing in itself because he never calls me) at work to tell me how ecstatic he was.  He was downright bubbly!  He emphatically told the daycare YES with the caveat that I would also have to meet them and approve of the place.

The providers were kind enough to meet with us on Saturday afternoon and we spent a good hour there talking and touring the house.  I was very much at ease and the daycare provider answered most of my questions before I even asked them.  Jack did not hesitate to play with all of the toys and interacted with the providers and their son as if he had known them for years.

The location is fabulous – right down the street from our apartment and along my bus route.  The providers are a Brazilian couple who emigrated here twenty years ago.  They started the daycare so that they could stay home with their two sons who are now 9 and 3.  Portuguese and English are spoken in the home, so Jack will learn a little bit of a second language.  Not only is the food home-cooked and focused on vegetables and non-meat sources of protein, but a weekly menu is posted for the parents to see.  That may sound not sound like anything amazing but I am a person who craves details!

It is absolutely settled.  Jack has daycare!  I am so excited for him to get to know these wonderful people and be in their care.  He will love it because they are going to care for him just as we would.  That is all I ever wanted.

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Guide to Your Kid

When we first sent Jack to daycare, I wrote up a one-page “guide” describing how to care for him.  I figured this would be great to have around because the daycare provider might not remember everything we told her and we could keep it on hand for the occcasional babysitter.  It has worked pretty well for us, I have to say.  If you are as neurotic as I am, and happen to need a quick write-up for a caregiver, perhaps you will find it helpful, as well!

I updated this version when Jack was about 7 months old.

Jack R. born 7/13/06
Mom: Crystal, cell # xxx-xxxx
Dad: Joe, cell # xxx-xxxx
Pediatrician: Dr. H, xxx-xxxx

Food:  Jack eats primarily breastmilk.  He is fed on demand with a bottle.  In general, he will take a two-ounce bottle every two hours, and he will usually take his first bottle right before his first nap (9ish).  He should sit fairly upright while being fed, and be burped after each feeding.  (Note: please swirl breastmilk to mix – do not shake.  Submerge bottle in hot water to warm.)  If he still seems hungry after 2 ounces, you can offer him more 0.5 ounces at a time.  It is rare for him to eat more than 3 ounces at a time.

Sleep:  Jack usually takes naps two times during the day.  His morning nap is around 9 or 9:30, and his afternoon nap is about 3 hours after he wakes from his morning nap.  It is not unusual for him to throw a third nap in during the day, as well.

He shows the classic signs of being tired: rubbing eyes, yawning, fussing.  Also, redness around his eyes are a sure sign that he is ready to sleep.

Jack gets “bounced/swayed” to sleep while lying sideways in our arms, pacifier in mouth, and usually while being “shhhed.”  He is used to sleeping on the bed with covers pulled to his waist.  He also sleeps with a fan on at home for white noise but can sleep without it.  It usually takes about 15 minutes to get him down to sleep.  If his eyelids don’t look heavy after about 5 minutes, you might want to wait twenty or so minutes before trying again.

Soothing:  Shhhing, swaying, sucking on a pacifier, a dark and quiet room, being held in an infant carrier – all of these things help calm Jack down.  He can often be distracted from fussiness by funny noises, raspberries on the belly, or toys that make noise.

Development:  Jack can reach for things, and likes to lunge to grab things he is interested in.  He can sit without support, roll over freely and “creep” occasionally.  He loves to sit in a bumbo chair or high chair. 

Jack is teething and we deal with this in a variety of ways.  We offer things for him to chew on, administer teething tablets or Orajel, hold him and hug him, and if he seems to be especially fussy and those methods are not effective, we administer pain reliever.

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