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.
0 Comments