I’ve always said I’m not one for setting goals. Probably because I hate the thought that there might be a chance I might not accomplishing that goal. (fear of failure much?)
Well, this year Bil and I set a solid goal for ourselves. It’s one we’ve been working on for a while, but we had never really put a timeline to it. Until now.
By December 2013 we will eliminate all debt other than our mortgage and have at least 2 months worth of salary in savings.
That means no more credit card debt. No more car loan payments. Nothing other than a monthly mortgage payment.
Only a few years ago, we were one of those people who lived paycheck to paycheck. We had to prioritize bills because there never seemed to be enough money to pay them all. And worse, it seemed like we had no money and nothing to show for it. We couldn’t understand it. We had a good income, so what was the problem?
It was scary. And the thought of dealing with our money issues made me feel physically ill.
We finally woke up and realized that continuing to do the same thing month to month was obviously not working for us. Duh.
We had to alter how we spent, budgeted, and just generally thought about money. I’m not going to lie… it was really tough at first. But we can see the results and it is such an amazing feeling.
Our first step was to sit down and figure out exactly what we were spending our money on. So for a few months we simply tracked every single dollar we spent in an Excel spreadsheet. And at the end of those months we looked at where all our money was going.
To say it was an eye opening experience was putting it mildly. It wasn’t the bills or big spending that was the issue. It was the $5 here and there and the bank fees for every transaction that were killing us.
The first big change we made was to create (and attempt to stick to) a budget. The key to a good budget, though, is to make it an achievable budget. Rather than just plucking random numbers out of thin air, we looked at our current spending. How much a month did we spend on groceries. How much was going towards gas. What was the average utilities /phone /gas /cable bill. These became the basis for our budget.
Then we looked at personal spending. YIKES. Yeah, that definitely needed a lot of work. So we budgeted an allowance for each of us. We each got a set amount of money each paycheck to do with what we wanted. If I wanted to go for coffee, it came out of my allowance. If Bil wanted to eat out for lunch instead of bringing his lunch to work, it came out of his allowance. If we wanted to buy something completely frivolous…you guessed it… allowance.
This budget was our first step to clawing our way out of this money pit we were in.
As the months went on, I tweaked the budget so it worked for us. I now do the budget every paycheck, but I also budget a few months out. It allows me to play with numbers and see how if we make a purchase now the ripple effect of spending that money is felt for months afterwards. That’s not to say we never buy anything anymore. We just do it when we can afford it, rather than when we want it, now.
But we realized that just budgeting wasn’t enough. It was still too easy to overspend. You want something? Just take out the magic bank card and get it.
So we now do the envelope system.
Every paycheck we pay all the bills for that pay period online. Then anything that we would normally use our debit card for is budgeted and calculated and that money is taken out in cash. We have an envelope for our grocery money, one for gas, another for the ‘pet’ fund to cover their food/vet/grooming expenses. And we each get our allowances in cash. Once the money is gone, there’s no more spending.
It takes a lot more planning (for example, before you leave the house you have to think ‘do I need to get gas for the car’ and grab the money from the gas envelope if you do). But it also makes you MUCH more conscious of your spending.
When I want to buy something and I can look in my wallet and say ‘oh, I only have $20 left to last me another week,’ I might decide that I don’t really need to buy that item after all.
Any money that we might have left over at the end of the pay period from our grocery or gas money is put in our ‘bonus’ jar. We use that money if we want to order a pizza or go out for dinner. It’s our guilt free splurge money. So we have an extra incentive to watch our spending.
The third thing we changed about how we managed our money was how we paid off our debt. Rather than giving a piece of the pie to everywhere we owed, we started using the ‘Snowball method’.
Simply put, you do minimum payments on everything except your smallest debt. Don’t focus on interest rates. Just look at the total amount owed.
Put the most money you can on the smallest debt and pay it off. Then you can take that money and apply it toward the next smallest debt. Each time you pay off a debt you have more money to pay off the next debt because you have the chunk of money plus the monthly payments you were putting on the previously paid off debt.
Making those 3 changes (budgeting, envelope system, and snowball payments) has taken us from barely getting by to always having money in the bank. It also allowed us to buy all the gifts this past Christmas with cash. No more Christmas debt in January! Woohoo!
The biggest bonus? We never fight about money because money is no longer an issue.
It’s also brought us that much closer to being completely debt free … well, other than our mortgage but that will be the next goal we set.
We spent yesterday celebrating Zombie Jesus Day with my family. Vista and her cousin had fun eating copious amounts of chocolate and then screaming like banshees as they ran around the house.
My grandmother was also down visiting. Luckily she’s half deaf so she can just turn off her hearing aides so she doesn’t have to listen to the kids. I’m looking forward to that day.
My grandmother, nephew and Vista. V would be the one with
fake tattoos on her face and hands and trying out the
‘duck lip’ look. Please send help when she’s a teen.
It’s always entertaining having dinner with my family. The evening is always filled with ribbing and jokes at each others expenses. I come by the snark naturally, as evidenced by this conversation…
Dad: Why is it so hot in here?
Mom: It’s not.
Dad: Yes it is. Did you turn the furnace up or something?
Me: I don’t find it hot. I think it’s just fine.
Dad: No… it’s hot in here.
Mom: Are you having hot flashes or something? Maybe you’re going through ‘man-opause’.
Me: *on the floor laughing while my dad glares at both of us*
That right there is love, people.
I’m hopped up on cold meds and my brain is not cooperating when it comes to working so here’s a summary of my life right now (and if it’s rambling and incoherent - please see the ‘cold meds’ part of this rambling and incoherent sentence).
Also, if you’ve eaten any time in the past hour, you may not want to read this because apparently my life borders on the gross and disgusting lately. (WTF universe?)
- V’s asthma appointment went well. They don’t think she has tracheomalacia (yay). But they do think her asthma is causing mucus plugs in her lungs which cause the massive prolonged coughing fits she has. Solution: sit in a bathroom with the shower on cool (not warm, because that might irritate her asthma) to emulate a nebulizer. Now…wouldn’t it make sense to just give us a nebulizer with some saline solution, if that’s the case? But no… go waste water by leaving the shower running for half an hour while you try to keep a kid entertained in there while you sit on the floor without the iPad because, well iPads and water vapor don’t mix. I understand the doctors up here in Canada are anti-nebulizers…. but really? REALLY? So now we are going to try to circumvent the system by ordering a kids nebby from the States and having it shipped up here… if we can find one that’s reasonably priced and will ship to the back waters of Canada.
- After dropping off the half dozen prescriptions from the asthma doc at the pharmacy and picking them up we discovered after giving V one of the chewable meds that they had given us a different kind. I didn’t even look at it closely. I just popped it out of the foil and handed it to her because the box looked the same. Turns out it was orange flavored (bad) instead of strawberry flavored (good). And why was it orange flavored? Because on closer inspection it turns out that the gave us 10mg adult dose pills instead of the 4mg child dose that V is supposed to get. And we gave it to her. And then my head exploded. I wish I could say this is the first time this has happened. But it’s not. We even tried changing pharmacies in the past because it happened way too often at our old one. Why do pharmacies keep trying to over dose my child on her meds? Like she’s not on enough meds to fuck up her system as it is? You have to help by giving her double and triple doses? GAH. And people wonder why we are hyper-vigilant parents. Because shit like this happens the moment we let our guard down. So now I’m waiting for a call back from the pharmacy manager so I can chew them a new one.
- Somewhere along the line I’ve picked up another upper respiratory infection. I think this is the fourth or fifth one this winter (yes, I know it’s technically spring now. Until I see flowers blooming and green grass, it’s winter). I have resisted going to the doctor because I hate being on antibiotics (might come from having anaphylactic allergies to several of them). This one might make me cave and go crawling to urgent care. I hate admitting defeat.
- And because my life isn’t gross enough, I spent yesterday at the vet with one of our dogs to discover he had ripped off the top part of his lower eyelid. How does that even happen?!? *gag* Vet says it should heal over, but he’s on anti-itinflamitories and a cream for his eye for the next week. And we have to keep an eye (*snort*) on it. They gave me a cone-of-shame to put on him so he didn’t paw at it or rub his face on things. Luckily I have The Best Dog Ever and he’s not bothering it at all. He probably just took one look at that cone and went “awwwww hell no”. Maybe he’s smarter than I give him credit for.
Other random thoughts of late:
- I really need to find a spell check for my computer that includes medical terms. I hate it when my computer tells me they’re wrong, has no suggestions for the correct spelling, and then when I check them, they’re actually right. I think I’m going to create a spell checker for special needs parents.
- I do not get the fascination with mustaches, fake mustache pictures, and mustaches on a stick. Do. Not. Get. It…. at all. Am I missing something? Is there some secret mustache society that rules the world? That’s it, isn’t it. It’s not the aliens we have to be afraid of, it’s those mustaches. I always knew Tom Selleck was trouble.
- I also don’t get this new trend of tattoos that look like the skin is peeled back and you can see the muscles underneath. Makes me want to dry heave. If I wanted to see that, I’d work in a morgue.
- More and more of my friends are getting involved in these ‘home party’ based businesses. I’m happy for them, but really, they’re all MLM’s (multi-level marketing) of one sort or another. Then I got to thinking… isn’t drug dealing just a glorified MLM scheme, really? The people at the top make the most money and the farther down the chain you are the less you make. So you have to get more people buying your product so you can make more money and turn some of them into sellers for you so you can move up the chain. *BOOM* I’m pretty sure there’s more money in drugs than in these Mom-based businesses, though. Unless your a Mom-based business who sells drugs – then you’re laughing. Just don’t get involved with a DEA agent. We all know how that turned out for Mary-Louise Parker. (I kid… we all know drugs are bad; say no to drugs; etc. blah blah blah, but I still don’t recommend dating DEA agents… just to be on the safe side).
We have been trying, in vain, to potty train Vista for going on a year now.
To say she’s not on board with it is putting it mildly.
Some days she does great. But we have to be constantly on her, reminding her to go to the bathroom.
And then the arguments start.
Bil was doing the bedtime routine and part of that is getting her to use the toilet before getting her pj’s on.
He took off her diaper (which was dry – yay) and told her to go pee on the potty.
Bil: “Vista, just go pee on the potty.”
V: “No. I don’t have to go pee.”
Bil: “Well, just TRY.”
V: *starts sobbing* ”No, because I peed in my diaper…”
Bil: “What? No you didn’t. It was dry. Now go pee on the potty.”
V: *still sobbing* “Then what was that pssssssss sound?”
Bil: *completely bewildered* ”What pssssss sound?”
V: “The pssssss sound…. It was the sound of me peeing in my diaper” *cue a fresh round of sobs*
(the kid needs an Academy Award. She can make herself cry at the drop of a hat)
Bil: “Vista…. you did not pee in your diaper. It was dry. Now GO. PEE. ON. THE. POTTY.”
V: “Then what was that psssssss sound? It was….”
Bil: “No! There was no pssssss sound. Your diaper was dry. GO PEE!”
V: “But I don’t have to pee. I peed in my diaper!”
Bil: “You. Did. NOT. Pee. In. Your Diaper. It was dry. If you peed in it, then what happened to the pee? Did it just vanish?”
V: “Yes! It vanished! …… Wait…What’s ‘vanished’ mean?
Meanwhile, I’m sitting in the living room listening to this go down. By the end I think I was laughing so hard I just about peed myself. Hmmmmm…Perhaps I’m not the best person to be trying to potty train my kid after all.
I’ve been keeping a deep dark secret from all of you. Oh I know I promise that I’ll share my life on this blog, but there are some things that are so embarrassing that I hide it. Only my closest friends know my secret.
I’m an addict.
There I said it.
I, Jenn, am addicted to…. nail polish.
I know. It’s so shameful.
And not just the polish. I love the decals and foils and stamps and gems and … well… you get the idea.
Think I’m kidding?
That’s not even all of it. I still have a whole other box on top of that.
It’s my one weakness. My one vice. (well, that and chocolate, but I’m pretty sure I’d die without chocolate so it totally doesn’t count)
I’ve always loved having my nails done. It started with putting on polish with my mom. By by early 20′s I was regular at the nail salon and committed to my acrylic and gel nails, which were more like claws.
Fun fact – I prefer to type with my nails rather than my fingers. No idea why.
Every couple of weeks I had a standing appointment with my nail tech for my fill and manicure. Right up until Vista was born.
The day she was born, she was so tiny and scrawny I discovered that my fake nails got in the way of picking her up. So I sat in my hospital room as she slept and slowly ripped them off, one by one.
That was the last time I had my nails oh so perfect.
Until I started playing around at home.
At first it was just a polish here, a drugstore decal there. But then I discovered nail stamping. And foils. And nail art. And did you know there are whole blogs dedicated to nails? *swoon*
I know, if you ever doubted the fact that I’m crazy, there’s no doubt left now.
But, for me, this is a small and simple way, when you’re constrained on time, money, and energy to feel…well… pretty.
So here are my tips to pretty nails without the salon price:
1.) More expensive doesn’t always mean better. I’ve used everything from Chanel to Essie to OPI to every drugstore brand under the sun. Some of my favorite polish is the cheapest. A lot of my current polishes are actually from Avon and I love them.
2) Don’t be afraid to try something new. If you hate it, that’s why nail polish remover was invented. And if need inspiration for new things to try, look at some nail blogs. They’re filled with pictures and tutorials.
3) It doesn’t have to be perfect. This one took me a while to learn. I wanted my nails to be absolutely perfect the first time. Thankfully I finally grabbed a clue and realized that there are lots of ways to fix your polish mistakes.
- Got polish on the edges of your fingers? Let it dry then dip a q-tip in nail polish remover and get rid of it.
- Smudged your nails? This is a great time to pull out the nails stamps or decals.
- Touched your nail to see if it was dry and left a finger print? Sometimes gently licking your nail will smooth it out (I know, gross… not one I usually try). The other thing to do is another layer of top coat. You would be amazed what a good top coat can smooth over and hide.
Last night when I was doing my nails I totally managed to smudge the top of three of them. Go me. So I did some nail stamping on top and voila! You don’t even notice the smudges!
(just because a lot of people have been asking me about this stamp the past few times I’ve worn it
its from a new Konad plate #M85. If you’re new to nail stamping, there are starter kits you can get).
And if anyone wants to buy me a present I have my eye on the new Konad M84 plate
and the new magnetic polishes *hint* *cough* Bil *hint* *cough*
4)If you don’t need the new nail polish / stamp plate / decals etc right away, order them online. You would be amazed at the deals you can find (yes, even for Canadians).
But most of all… don’t forget to take the time for you!
**Disclaimer** The lovely people at NailPolishCanada.com were kind enough to enable my addiction and provided me with a new Konad Nail Art plate to try out. They carry both of the new Konad plates, M84 and M85, as well as starter kits for those who just want to try it out.
The opinions, however, are all mine as usual (including the part where I think the fact they ship for free in Canada, which no company ever does, is freakin’ awesome).
Just an additional mention about Konad plates…. these are great doing kids nails. I’ve been using them for years to put little flowers or stars on V’s nails. By the time you transfer the stamp polish to your nails it’s dry, so kids won’t smudge it and a quick top coat seals it on so it lasts as long as your polish does. It’s also not raised like a decal, so if you like the look of decals but not the feel of them on your nails, this is a good option.
So yeah… about those floors. I wrote last month about pulling up our carpet and putting down laminate. And then all hell broke loose.
But the floors are done! (YAY).
Here was our living room before.
Beautiful beige carpet.
But then we did this.
For the record, I hate ripping up carpet almost as much as I hate painting. Carpet staples are the debbil.
Vista didn’t react well to all the dust stirred up and so went to stay with my parents for a few days while the actual flooring installation was being done. And it’s a good thing, because despite the effort to poly everything and keep things as clean as possible, laying down new floors creates a dust storm in your house (ie. don’t install new floors if you have any OCD cleaning issues).
This was our first glimpse of the new floors. Notice the lovely layer of dust on top. But I was still thrilled with how they came out. Even though it’s laminate, it has a hardwood look. And I’m so glad we went with the wider planks.
So after they were done the floors we washed and scrubbed and vacuumed the best we could before bringing Vista back home.
We managed her asthma and the effect the dust was having on it OK until the guys came over that next Monday to finish the stairs. The little bit of dust it created was just enough to send V over the edge and necessitate a nice little ambulance ride to the hospital.
We knew we couldn’t bring her back to the house after that until all the dust had died down and we had thoroughly cleaned everything. My parents were gracious enough to let Vista and I stay at their place for the week. Let me tell you, being back in my childhood room and sleeping in there with my daughter was weird.
We were contemplating going home Thursday morning when Vista informed us her ear was bugging her. V’s not ever the type of kid to complain that something hurts, so when she does we tend to take it pretty seriously. She complained just enough to get me to take her into the clinic and after that she never said a word about her ear hurting at all. But the doc at the clinic confirmed a bad ear infection. But then he listed to her chest and gave me one of those ‘doctor’ looks. Apparently she had one heck of a wheeze still going on.
So we ended up a my parents a few extra days while Bil did some extra cleaning and V got a few more days of antibiotics and steroids on board.
Since we’ve been home, she seems to be OK. But the floors are a bit of an adjustment.
Vista’s done a few slip and slides while trying to lean on the couch.
Our border collie is fine with the laminate (although he was very happy to have V home again).
My shepherd, however, hates the new floors, preferring now to reside in the front entryway or V’s play tent when she brings it out.
(I think the pink brings out his eyes).
So, yeah. It’s been an adventure. Nothing could ever be simple, not even putting in new floors.
But I am so glad we had them done (and SO glad we didn’t attempt to do them ourselves).
I’m thrilled with how they look. Now, I just have to get those walls painted… and redo the tile on the fireplace… and paint the kitchen…and… win the lottery evidently.
We’re in that period of time where most of our friends are still in that “how big will our family be” mode.
There are lots of babies being born which is great for me. I get to hug and snuggle to my hearts content and then give them back when they start to stink. :D
But as we watch our friends through their pregnancies, we sometimes struggle to understand.
Especially when it comes to the screening tests.
We’ve known several people who have gone through the Down’s ‘scare’, and had to have that discussion around whether to abort.
First off let me say I have nothing against abortion. I believe every woman should have the right to control their reproduction.
Where I struggle is when the decision is made because they don’t want to bring a baby into this world who will have a ‘poor’ quality of life.
I want to scream at them “YOU DON’T KNOW! A TEST ISN’T GOING TO TELL YOU THAT!” *sob*
I’ve known children with Downs that is fairly mild and they are otherwise perfectly healthy. The grow into wonderful people with a unique perspective on life and those of us who have had the pleasure of meeting them are so much richer for it.
Had we done those screens when I was pregnant with Vista, everything would have come back completely normal. None of Vista’s issues would have shown up on those tests. And yet we live a life filled with doctors and specialists and hospital visits and therapists and aides.
You don’t know. You cannot predict if a child will be born healthy. Of all the mom’s in my special needs group, exactly zero of them knew they were having a special needs child before they were born.
And had we known, ahead of time, about Vista’s brain malformation we still would have had her.
Yes, it’s sometimes hard having a special needs kid. But? There are the rewards.
I have learned a patience and understanding I never had before.
I have learned never to tell my child what she cannot do, because she will always prove me wrong. The only limits in her world are those placed on her by those who don’t understand that she is amazing and doesn’t know that she’s not supposed to be walking and talking, never mind running and reading.
I have learned not to judge people with disabilities. They are people… with feelings. And disabled does not mean mentally incompetent or unaware. Quite frankly I’ve met more people with disabilities who have more capacity for caring and compassion than those so called ‘normal’ people in my life.
I’ve learned more about the medical world than I ever thought I would. I don’t rush my child to the doctor for every sniffle like a lot of parents do. We’ve learned to discern what’s a cold, what’s a flu, what’s croup, what’s asthma, and when medical care is really necessary. A lot of parents could do with that training.
I have learned what it means to be a friend. I’ll be the first one to admit that I used to be a complete flake. Now, I forge friendships not a slew of passing acquaintances. Want to know if you have real friends? Face a medical emergency and see who’s still standing at the end. I guarantee it won’t be the people you expect.
Having a special needs child has expanded our world in ways we never imagined. I am so glad I didn’t throw away this opportunity to grow as a person when the universe handed it to me.
We’ve been talking about ripping out all the carpets in the house and replacing them with … something… for a long time now. It turns out have to black dogs and beige carpets really doesn’t mix. Who knew.
Those beige carpets end up being a lovely shade of grey most of the time, despite vacuuming daily (twice a day when the dogs are really shedding).
Needless to say, I loathed them with a hate I can’t even explain.
Add to that, Vista’s allergies that would have her breaking out in hives if she played on certain spots on the carpet (we have no idea… it was weird – and not related to the animals. She hugs and loves on them all the time with no issues) and it was time for the carpets to go buh-bye.
I mentioned to my parents that we were thinking about redoing the floors and they were quick to recommend the same person who had put hardwood in their house. He was a good friend of one of my brothers and he really had done a beautiful job in Mom & Dad’s house. I promised to call him… at some point.
A week passed and I still hadn’t found the time to call, when my brother called me. Did I remember his friend Matt who did floors? Uhhhhh… yeah. Well he needed a new website and would I give him a call and discuss it.
Well thank you universe for the kick in the ass.
So, I gave Matt a call. And tomorrow I’m getting new laminate installed!! Woohoo!!
We discussed going the hardwood route, but Matt nixed it because of the size of our
horses dogs. Cork was another option, but I’m just not a big fan of the look. So laminate it was.
This past weekend was spent ripping up carpet and underlay, pulling out so many staples I lost count, and picking up the laminate.
I’ve got blisters from pulling out staples, scrapes from the baseboard nails, my knees are shot from kneeling on plywood for hours, and my arms are covered in bruises from hauling in the boxes of laminate into the house.
And it’s all so freakin’ worth it. I am soooooooo excited for my new floors (I know, you can’t tell).
As soon as my house is back to some semblance of normal, I’ll post some before and after pics.
I was on my friend @Psychmama’s Facebook page the other day and saw that someone had commented on her sharing of the What I Would Tell You post (if you haven’t read it, you really should. Well worth it).
This is the long comment I saw. And of course, I couldn’t help but respond, because, well… I’m me. (click to see it full size)
Caring and ‘getting it’ are two vastly different things.
You can SYMPATHIZE but you cannot EMPATHIZE if you have never been a special needs parent. And there is a deep and wide chasm between sympathy and empathy in the special needs world.
That would be like me telling a doctor that I care so I should be allowed to do surgeries. I guarantee that doctor would be taken aback and insulted.
See… the big difference between special needs parents and someone who hasn’t walked in our shoes is that we see our kids as normal. They are normal to us. They are our children and we live every day with their disability. That is OUR normal. When people come up and try to do the ‘I’m pretending I’m treating your kid like they’re normal’, it pisses us off. Because the first thing you noticed was not their smile or how much they love to laugh. It was that they can’t walk/talk/eat/fill-in-the-disability. So we slap on the fake smile until we can escape and shake our heads about the people who think they understand, but really don’t.
We don’t want pity for our children. We want our children to be accepted for exactly who and what they are; to be treated like any other child. Not to be marked by their challenges. Unfortunately, yes, we are a ways off, as a society, from being there.
And the old ‘God will never give you more than you can handle’ IS bullshit. Because there are days when we are totally overwhelmed with it all. After your child hasn’t slept for weeks, or months, or in many cases, YEARS, you wake up and think ‘I cannot do this today. I just can’t’. And you dream of normalcy. And you have yourself a good cry in the shower before you go on with your day. Because being a special needs parent isn’t easy.
I won’t lie. There are the good parts. I’ve met lots of wonderful people because my daughter is special needs. But those friendships are not like normal friendships. Dawn and I have spent the last month supporting one of our friends who’s daughter has been close to death in the hospital. Every day we are there to listen, to research, to offer advice, and just to be there while she cries. And then we go back to our lives and cry ourselves because that could be our child in the hospital and part of us is so glad it’s not. But we understand on a level that most people can’t. And that is why, in crisis, we turn to parents who have been through what we’ve been through. Parents who can speak in medical terminology and acronyms, for that is the secret language of special needs.
And being friends with special needs parents brings other challenges. If anyone has so much as a sniffle, playdates are cancelled. They’re also cancelled because their kids or mine are feeling too overwhelmed/tired/anxious/overloaded/overstimulated on that particular day. Parents of normal kids get frustrated when we cancel last minute because of these things. Special needs parents just say ‘Oh, no worries. I totally understand,’ and you know they do, because the next time it will be their turn to cancel.
Special needs kids are wonderful and unique and challenging. As much as I love my daughter, I would never wish a special needs child on anyone. Not because I think they are ‘less than’, but because there is so much that goes on day-to-day that cannot be shown on some TV show. I’m talking about the doctors appointments, meeting with therapists, documenting of medicines, organizing of supports, purchasing of special support equipment, dosing meds, special exercises and the list goes on and on. So much of our days are consumed living with special needs rather than living with a child.
Therapists don’t parent our children. They are not nannies. They give us the resources to help our children reach their milestones. But much of the actual work, still falls to us, the parents. Where you would sit and play with your child, we consider what developmental area we’d like to work on and pick toys or activities appropriate to that.
When you leave the house, what’s the first thing you pack? Diapers? Oh your child is potty trained? Yeah, my almost 5yr old isn’t. Special needs, you know. How about meds? Oh you don’t need to carry a med case? Ours goes everywhere with us. Inhalers, spacer, anticonvulsant, oral steroids, fever meds, allergy meds, pulse-ox, stethoscope, thermometer, and of course My Little Pony bandaids…can’t forget those for when her balance goes and she does a faceplant in the gravel. And then we have to make sure we’re home in time to give her the evening doses of meds (unless we make a special point to pack those and bring those with us). This is all part of normal life for us. Not the glamorized medical docu-drama you see on TV.
You seem to have romanticized being a special needs parent. For that reason I hope you never are, because your world would come crashing down. Being a special needs parent is being vomited on every day (sometimes several times a day) for years. Being a special need parent is wiping feces off walls from kids who should be old enough to know better. Being a special need parent is cleaning up tube feeds that have spilled the entire contents of the feed bag over the floor. That is being a special needs parent. It’s the furthest thing from glamorous.
Is it rewarding, though? Yes, in the way that parenting any child is rewarding. You celebrate the milestones and the successes. They just don’t always come where and when you expect them.
But when you come up to a special needs parent and tell them you would love to have a special needs child, don’t be surprised if the reaction is less than favorable.
Three and a half years ago we began our foray into the special needs world. Our steps were slow and tentative, not knowing where this path would take us.
One of the first families I met was Tasha and her daughter Jenna. I still remember walking into the physio room at the Children’s hospital in the city and seeing the halo of blond curls that is Jenna’s trademark. We had no idea, then, that our girls would become fast friends.
A few months later I walked into the building where the local physio/support group for special needs kids was being held in our small town. I was surprised to see the familiar blond halo of curls there. I had no idea that Tasha and Jenna lived out in our area, since we had first met them in the city, but it was reassuring to know at least one family there.
Over the years the girls have grown together. We’ve watched them learn to walk, learn to talk, learn to run, and learn to get into enourmous amounts of mischief for two little girls who look so innocent.
They started preschool together last year, happy to play with the other kids in the class, but also happy to sit and hold hands together during circle time.
As the girls became friends, so did Tasha and I. A bond formed over diagnosis’s, doctors, and treatment plans. It was comforting to have someone I could compare notes with, commiserate with, and celebrate the milestones with.
For the past few years, Tasha’s mom has run our special needs group. She is the rock we all turn to. And Vista knows her as Grandma. She is as much family as anyone we’re related to.
Tasha’s boys go to the same school as Vista. They’ll always stop to say hi to her and give a little brotherly hug.
Tasha and her family have become an important part of our world.
But that world was rocked when Tasha’s daughter ended up in the hospital on last Friday.
A hospital stay for Jenna, in and of itself, is nothing unusual. But it was quickly apparent that this wasn’t going to be her normal get-sick-crash-bounce-back routine.
Since last Friday, Jenna has been in the ICU at the Children’s hospital. She’s on a ventilator. She’s flat-lined several times and been resuscitated several times. And everyday seems to bring a new round of complications. Pneumonia, hMPV, bleeding in the lungs, pulmonary hypertension, sepsis, low hemoglobin, the list goes on and on.
Jenna is a fighter, but she is sick. So very sick right now. And no one is sure if her little body can stand up against the onslaught it’s under.
So if you have a moment, could you send some good thoughts, positive vibes, and prayers their way?
They have a long road ahead of them and they could use all the support they can get.