Oh the dreaded self care topic, at least that's how I felt every time someone was telling me how they were lounging in the tub with a glass of wine. So what defines self care? The dictionary tells me it's something we do to take care of our mental, emotional and physical health. Ok still broad, ok it goes a little more specific if I read further on google, good self care is the key to improved mood and reduced anxiety. Ok, so why have I been told all these years I can't clean? hahahaha I clean kitchen at night and a pot of coffee ready to percolate all by itself at 5:10am sure makes me happy and melts my worries away.
I blame social media for much of this. You see endless amounts of spa days, wine tours, girlfriends getting together and carefree and having so much fun, hot tubs and wine, the list is endless. It seems everyone in the world but me is carefree and having the best times, right? Well social media is a sneaky beast, that I refuse to let trick me, because I know it's a trick, you know how I know, I saw a very candid post the other day from one of those wine drinking, hot tubbing hotties. It totally caught me by surprise, she was posting about how it may look like she does all these amazing things flawlessly and everything is just right but in reality her struggle is she can't just sit and be, relax, not do something. This was a great eye opener, we all struggle with something and social media can make all of that hidden if one wants it to be.
So what is self care for a special needs mom? well for me it's having a clean kitchen at night and sitting back and thinking heck I love my space and I'm going to love waking up in the morning to this nice clean spot and a hot coffee, it's sneaking off to the garden for 20 minutes and enjoying every minute of it, waking up at 5:20 and having 40 minutes of no kids and a hot coffee and planning my day, it's going for a brief walk around the yard and making a fall decoration for the doorstep. Self care for me is those brief moments I get to do something by myself, no talking, just my thoughts, I've had to think outside the box and get rid of all those stereotypical bubble baths and wine glasses, novels and hammocks, and spa days. The sooner you stop comparing the sooner you will become ok with the cards you were dealt, you may not have the best hand some days but it's still your job to play the best card game you can. Being ok with how things are and finding areas you have control over where you can improve things is a must. Try hard to not let the FOMO (fear of missing out) to creep in, it will take you down fast and hard. Make your home a place you love, have things you love outside of being a mom, find things that light you up inside, find creativity, find a love for cooking, all these things will help you as a special needs parent, they will help you not loose yourself, help you find the light when the day is dark.
Pretty sure when you think of being a parent you don't anticipate having a child with disabilities, at least I didn't. Marley is my second child and was born with a rare genetic disorder called Wolf-hirschhorn Syndrome. In the beginning there was so much unknown, she was born so tiny and from the beginning struggled to gain weight, she didn't particularly look like my husband or myself, but hey that didn't set alarms of immediately. So for the first 8 months of her life everything revolved around eating, she gained very little weight and always there was concern, I pushed everything back to she will start babbling more if she starts to grow, she will reach more milestones if she can just have more nutrition. Looking back it's very clear she was delayed from the beginning, hind site right?
At 8 months out of the blue had a seizure, scariest night of my life, I had no clue what was happening, it wasn't a full jerking seizure, so I didn't even know what exactly was happening. We landed in our local children hospital and after many tests it was determined she did have a seizure, but now the question was why? It's been a long road since then, doctors appointments, physiotherapy, speech, surgeries, countless stays in the hospital. I'm happy to say it's been many many years since she has had a seizure, her daily meds have kept those at bay, thank goodness.
You definitely become a different parent once you have a child with special needs and go through all the things it entails. It's pretty hard to freak me out with emergency scenarios now. I feel after witnessing and being in the thick of seizures, emergency IVs, emergency breathing tubes, sedations, major surgery recoveries that I've become that person that in times of stress I just focus in and keeps my eyes on what needs to be done. I'm sure this has it's downsides to but for now it's gotten me this far with my head on straight lol
Our days probably look a little different than most peoples. When you have a child that relies completely on you, things take longer. Marley has a feeding tube, so 4 times a day I need to sit with her and feed her meals. It's not the same as passing food over to your kids, it's time consuming and takes up a huge portion of the day. We now have to plan our days around this. So town trips, errands, outings, gardening, outside play, these things happen in between feeding times. I'm the person that always sees the light between the darkness so having a feeding tube is no different. Marley gets all her meds through the tube so there's no worry on the dosages being spit out, she has an extremely healthy diet because I cook and blend the food she eats, no worrying about "mom I don't like it", so piles of spinach, vegetables, healthy proteins, but I couldn't do it without this bad boy, this blender has changed our lives Blendtec Blender. She has a nurse at school who comes to feed her lunch and the big joke of the day is from the color of her food and the smell "what's Marley eating today" there's been a few times that I've gotten a txt because they have no clue.
Children with disabilities changes your life and makes everything you do harder. It's no longer easy to just scoot to the store and run errands, pop over to a BBQ, or head out to playdates. The things you need to take, the extra energy to do these things seems exhausting at times, I have 2 other children to, so accounting for keeping an eye on them while I'm completely tied to Marley has definitely made me make the choice of not going many places. I sometimes feel exhausted just thinking of the outing, I need to work on this, none of us want to have our other kids miss out on fun because we don't feel like it, we also don't want to lay the reason on the child that has the disability, but let's be honest many times that is the reason, yes, at times guilt creeps up, sadness, I nip it in the butt quickly, I don't allow it to take up space in my life, it isn't going to help me enjoy the days. We live on a lovely property, so much nature, great grandparents next door, a dog, chickens my kids have a great place to enjoy their childhood. But I am very realistic that's not everyones scenario, so I want to create a place to help you manage your fears, problems, stress whatever your day throws at you, I want to help you tackle it. Head over to my FB GROUP so you can connect with other people who probably have some of the same things in common with you.
Having a tube fed child is far from the norm, but it is my normal and I love the ability it gives me to control the nutrition that goes into my daughters body. I feed a Real Food Blend, there are a few on the market but I'm not using those I am feeding my daughter real food that I cook, it actually is about 90% the food we actually are eating as a family, I love leftovers.
When I first became a tube mom it didn't even cross my mind that I could still feed my daughter regular food, formula was just pushed my way and I gladly excepted, I think it was a sort of shock response in trying to grasp that may daughter was going to have a tube the rest of her life. If you know me you know that healthy, clean eating is a top priority, I love being in the kitchen, going to farmers markets and eating all kinds of flavours.
A few months into tube feeding it literally hit me like a ton of bricks, why am I not feeding my daughter food, she is a human, humans eat real food. It legit hadn't dawned on me until that very minute, the lightbulb went off, I think I was a little more shocked I hadn't even been presented this option. So I hit up google, and started looking, it was totally a thing, not a lot of info was there but it existed, of course it existed, its just food, you just make it in smoothie form, so it will go through the tube!
The next day I started shopping for a blender, had it within the week and made my first blend. No I didn't ask, I didn't consult, if you know me thats usually how I roll in life, do the research, figure out if it's safe, if it's doable, the right thing for me or the family and jump in with two feet! But common folks why couldn't my child have real food, every other baby, child, adult has real food, why should that change just because it's not going in her mouth but instead into her belly directly.
We have all made a smoothie right? so why couldn't I do that with last nights supper? I just purchased a $400 blender that was featured on Myth Busters where it was shown pulverizing a cell phone, so why couldn't I make leftover pot roast and veggies into a smoothie? Nothing was stopping me. Guess what, it was magic and it was a super smooth meat smoothie yummmm lol
Ok so, I have an older daughter who I went through the steps of feeding her the first foods to make sure she had no allergies, so I approached this the same with Marley, before long she was eating everything in her smoothies, I just always made extras of whatever I made for supper and blended it afterwards, I created a standard breakfast blend I still use as ol faithful for her breakfast and evening snack, peanut butter toast, blueberries, banana, protein powder, and a nut milk.
So why did formula freak me out so much? Well... where do I start.
Carbohydrates
- corn syrup
- corn maltodextrin
- sucrose
- fructose
Fat
- canola oil
- corn oil
- soy lecithin
- soybean oil
- sunflower oil
Protein
Whey and casein are from cows milk but the lactose has been removed or a soy protein isolate which is a prufied form of soy protein.
Fibre
Soluble fibre which is usually derived from pectin , guar gum, or oat fibre, or insoluble fibre which is usually soy fibre.
Water
Lots of water, depending on the calories/ml water can range from 70-84%
All the added nutrients to make up your daily amount needed, cause heck your not getting them from the above list so of course they are going to have to add them in.
So there ya go folks, so would you like that as your only source of food and nutrients all day long, every day of your life? not very colourful, literally. So instead I opted to feed my daughter real food, full of color, that I have prepared with love just like the rest of the food I cook for my family.
Check out a short video on how I approach making Marley lunch and dinner
Want to hang out and learn more about how you can rock the stay at home, special needs mom life pop over to my Group
Ok moms, as a special needs mom many of us are in the same boat that our children who are older still drool a lot. It's just part of having a special needs child. This doesn't make it any easier for our heart or mind. I very lucky to have this lovely support lady in my life named Debra. I first met her when Marley was around a year old and she was my early intervention worker. Since then she has become a school support and dear friend.
Once Marley started school she really was a huge help at getting the children at school to look at Marley as a peer not a baby. Marley is non verbal in a wheelchair and very small, so naturally the children innocently referred to her as a baby. Debra was on that and I appreciate her to this day for the insight and skills she has with children. Marley drools so we have always wore bibs on her, I didn't think anything of calling it a bib but Debra brought up, we need to call it a scarf, it had never crossed my mind but YES brilliant. It adds that layer of normal, people of all ages wear scarfs so it helps you separate from baby to child.
I'm not sure about you but online shopping as a mom of 3 in general, but as a mom of a special need child is the bomb. So I'm so grateful we live in a time that there are so many choices for things for children. For years Marley has been rocking these bibs and I just love the patterns and colors that are available. Every school year and holiday when kids are getting cool new toys Marley is getting her stylish new SCARFS lol. You can grab yours HERE
