I was going to name this page Parenting 101 - but really that class is a prerequisite for this class. You're allowed to fail and you're allowed to be absent, but it isn't recommended. Make sure you complete the theory before doing the lab work, because you're going to be lost. And penmanship counts!
This page is dedicated to how to be a parent for a disabled/complex care child and how to prepare yourself for the unknown and not to lose your head while doing so.
The first few weeks of Wyatt's life was a fog. I forgot to eat some days and had to be reminded to sleep, eat and wash. There were days like that, but know that they do end. Some days are going to be worse than others and always try to give your situation a positive outlook, because your baby can feed off of your energy. If you feel like giving up, talk to someone. Don't think you're alone, because you're not. Even if your child is undiagnosed, other parents with undiagnosed children know the frustration, hopelessness and loneliness you feel. Go to FB, Twitter or see your General Practioner to talk about your situation. There is always someone willing to listen.
The first few days of your child's life is going to be met with difficulty and lots and lots of words you may not understand. So here is my first recommendation to you as a parent of a disabled/undiagnosed child:
Never be afraid to ask questions.
There is no such thing as a stupid question. And if you don't understand their answer, tell them. "Use layman's terms please."
The second thing you'll want to make sure you bring with yourself every day to the hospital: a note pad or book to take your notes in. Keep track of all of the dates, names, and what they said. Write down nurses' names and what they have said about your baby's night and day. They are a fountain of information when it comes to the eventual care plan that you're going to go home with.
Often, specialists work in silos, so that means they don't really communicate with each other in the most efficient way. Sometimes it will take weeks for information to actually cross the divide of their specializations, when YOU can be the bridge of that information. This gives you POWER as a PARENT and this will make you FEEL GOOD. Trust me. So take those notes. Become an expert in knowledge transfer and become the expert on your baby. This means trying to be there as much as possible, unfortunately for many parents this may not be feasible, but anything is better than nothing.
The next thing you need to do and this will be hard for some and others may not even notice: let go of your old life. Your life will never be the same. This is your NEW life and it is not WORSE and it is not BETTER - it is simply DIFFERENT. You will lose friends along the way, those who cannot talk to you out of fear of feeling ashamed about their "normal" day to day problems and feel like they cannot connect to you on a basic level. These people will do one of two things: they'll let you go permanently, or they'll get over themselves. Give it time. They won't "catch" what you have and you are not the problem. Your very serious problems intimidate them and they have to get over their fear of the unknown.
Another thing you'll need to do is find a way to organize the crap-load of papers you're going to end up with once you're discharged and going forward with all of your appointments. My wonderful mother took this responsibility for me and bought a plastic filing bin that sits right next to my "work area" - the kitchen table. My mother organized all of Wyatt's CHEO documents with blue folders, insurance is red (accessed A LOT), and family documents are beige (because we're boring). On top of this bin, there is a clear lid that connects to it, where I put all of the business cards. There are about 30 of them right now, so it's a very useful thing to have. So, organize those papers with an easy-to-access filing system; be it a cabinet, folders, or binders. DO something with those papers, because they're important! Sections to consider:
Letters from doctors;
Other specialists; Neurology, Genetics, ENT etc...
FUNDING (I have a binder just for this section);
Quotes for medical supplies;
A good way to start is to get all of the papers together in a pile and just go through them. Some may be able to be thrown out, others will go into your filing system. I was lucky enough to be sent home with a small binder with sections outlaid by my discharge coordinator, but what I ended up doing is sliding papers into the binder because we didn't own a three-hole punch! Such a simple thing... So, filing the papers in folders is just a better way for me. Maybe you're fancy and own a three hole-punch already!
This is my husband's idea: have an overnight bag packed at all times, ready to go. You never, ever know when you're going to make that 911 (emergency) call. Your overnight bag should have the following:
Shoes and socks;
Toothbrush and toothpaste;
Shaving kit (hubby tends to go to work afterwards);
Clothes for the next day;
Extra cell phone charger;
Granola bar/snack (nut free!).
Our hospital will provide us with soap and towels and even toothbrushes and toothpaste. We have a family room where we can go and clean up and disconnect/detox for a bit. Here, in the Ronald McDonald Family Room, there are televisions, washers and dryers, a fridge and coffee available. We use this area every time we're admitted. Find out from your nurse if your hospital has an area like this. Use it - it's there for a reason!
Find your fit in an Emergency Situation (yup - capital letters), and STICK WITH IT. My husband and I are a team, we know our 'positions' in an emergency situation. I make the 911 call (because I don't in general lose my patience), and he stays with Wyatt (because he is a trained CPR instructor). Know what you need to do before it happens. This is what I call Preparing for the Worse and Hoping for the Best. This gives you control of your care plan and again, makes you an expert on your baby. Take notes of their nights and days if you have to. I know I did.
Research and dig for funding that may be available to you. In retrospect I wish I had started doing this when Wyatt was first born. So, that when we left CHEO, we had night nursing available to us. We didn't get nursing until Wyatt turned 1 (June 2014). The worst part - is that I left CHEO in September 2013 with the information to apply for some of the funding we currently have, but lost the paperwork in the melee that was our lives! (Hence the reason for organizing all of those papers)!
The first year of Wyatt's life, I slept about three hours a night. I'm pretty sure I was a zombie-mom. I lost a very unhealthy amount of weight. I felt like a nurse more than a mom. I didn't see anybody but my family and best friend for a year. It was terrible. The crappiest maternity leave ever.
Right now, we have night nursing paid by CCAC (because Wyatt has a trach), and four different Respite Care funds. Three available through the government and one through hubby's work. Our insurance company confirmed we are covered for a total of $30K in costs associated with nursing care. These funds, allow for me to go back to work part time and bring in a much needed income. It also allows me to do something normal. Typing at a computer. Fun times!
For those who live in the province of Ontario, and have a single/dual income above $62K a year - the following funds may be available to you for Respite Care:
We were recently accepted into the Rotary Home program as well. Which will allow us to get a weekend away! Never stop digging for additional funding - you never know what your municipal, provincial or federal government may be doing for you. You just don't know it yet!
We even used Rogers House when we were in a tight bind.
There is also the Andrew Fleck program, that has recently bridged with CHEO's Parent Navigator program. This program provides basic child care at a rate of $15/hr, and they will do all sorts of things, like support work (ie: you're home, but need a nap), take care of additional siblings while you're attending to a CHEO appointment (their facility is on Industrial Ave., minutes away from CHEO), they'll go on outings with you (ie: Water Park anyone??), but they will not do things like, suctioning, connect your child to their feed, give them their meds. They are support workers, all of them are middle aged women, who received training on what to expect with complex care children.
And last, but not least: Take care of yourself. You can only take care of the people around you, if you take care of yourself. Have three square meals a day. If you're going to skip a meal, skip supper. REM sleep doesn't need the calories as much as waking hours do! If you're going to binge, try to eat a cup of fruit before mowing down on that chocolate bar. Go on walks, if at all possible alone - or with those that care and love you. Find your niche that makes you feel whole and keep it close to you. Pray, meditate, laugh, read, drink, write... whatever it is - take time for yourself. You deserve it!