The other 5%

I often tell people that raising Laura is “normal” 95% of the time.

We wake up at the crack of dawn most mornings to an almost three year old telling us to wake up because she’s hungry/thirsty/bored/{insert other complaint here}. She begs for TV 24/7 even though she knows full well that it’s not about to happen. We read, play, run, eat, sleep and generally do everything that is typical of a toddler girl with an abundance of energy.

Laura goes to gymnastics and swimming lessons and she begins preschool (home-school – more details to come) in a couple of weeks.

95% of the time, this is how we function as a family. It’s that other 5%, though, that people tend to focus on when they hear about Laura’s history – it’s also what makes being her parents exhausting and stressful at times.

Here are just a few examples of this 95% to 5% rule:

1. Camping!

This summer, we finally went for it and bought a tent trailer! We bought a 1978 tent trailer that was in fantastic shape for the year but was butt-ugly (can I say that on the internet?). I spent just shy of a week fixing it up and we were off to the farm to test it out within a few days of having it finished!

We have gone on two short little camping trips this summer and they were amazing! Laura was on her best behaviour and actually slept better than she typically does at home. We played, built a tipi in our campsite, went to the playground approximately 100 times, went to the beach, had campfires, ate marshmallows and hot dogs and did all the things I remember doing as a kid when we went camping. All of these fun camping experiences were what we dealt with 95% of the time.

The other 5% consisted of buying specific containers to house her medications, syringes, first aid supplies and used syringes. We also had to be ever diligent that she didn’t eat rocks, sand, dirt, roll around in bird poop, etc. Of course all parents make some attempt to steer clear of these things but we have to remain extra-vigilant with Laura (especially soil and poop).

2. Normal life/School year

During the school year, I work on a 60% contract and A.J. works full time. During our time at work, my mom and A.J’s mom look after Laura. On my days off, Laura and I will be starting pre-school this year and will continue on with Gymnastics. We do all of the things a typical family does and our days go by very normally. The only things that are consistently different are giving Laura meds twice a day (no big deal) and pushing fluid like it’s going out of style. In all honesty though, Laura drinks with very little encouragement these days so it’s not all that much work.

Our life tends to go by very “typically” until one of two things happen:

1. Laura has an appointment.

Laura has more appointments than a normal kid but less than many medically fragile kids so she just sort of lives in the middle. Laura is followed by cardiology every 3 months, her pediatrician every 6 months or as needed, ophthalmology once a year, nephrology once a year, the dentist as normal and the optometrist as normal. She also has random appointments with neurology, medical genetics and we have just been referred to a pediatric psychologist for some medical-related anxiety. She also has her yearly gambit of stuff she needs done (GFR for kidney function – we can go 2 years now! Holter monitor, bone density testing, kidney ultrasound, extra bloodwork, biopsy and angiogram).

Sometimes, Laura is a champ at appointments and there is no issue at all, other times she is a train-wreck and can’t be soothed – it all depends on her mood at the time as well as how much blood work she’s been having done.

Which brings us to Laura’s most frequent “appointment” – bloodwork. Laura has her tac level and other labs taken once a month but often has to go more frequently than that depending on how her levels are, if she’s been sick, etc. We often do bloodwork every few days for weeks to sort out levels and that does begin to get tiring pretty quickly.

2. She gets sick.

Laura had her fair share of sickness last year, she ended up going through pneumonia a couple times, strep throat, an ear and throat infection and a couple GI problems. When she has pneumonia or strep, we bring her into Emerge to ensure that she is met by a doctor who has some idea of what her needs are, and it’s usually a quick in and out (with x-rays and bloodwork thrown in) to go get her some antibiotics to treat the problems.

GI issues are a bigger problem. When Laura gets diarrhea, her tac (one of her main medications) level sky-rockets, propelling us into a never-ending battle with her tac levels. The last time she had a GI bug, we ended up going for blood work twice a week for about a month and a half followed by weekly for a few weeks – it gets exhausting real fast for everyone involved.

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95% of the time we have a completely normal toddler who is smart, crazy and just a tad hyperactive. She talks NON-STOP and can’t sit still for more than about 30 seconds. She is inquisitive and has her own ideas about how she wants to live her life. She is brave and funny and wacky and we love her.

95% of the time I am a normal mother raising a toddler (which is exhausting enough), but then there is that pesky little 5% that reminds us to be thankful for the good days and to be thankful that despite everything Laura has endured throughout her little life, she is almost completely normal and has shown no deficits in any area.