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Navigating Life & Motherhood with Muscular Dystrophy

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Category: Palliative Care

disability, Palliative Care, Uncategorized8 Comments

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Adjusting to NIV Around My Children

Mar 19, 2019Feb 7, 2020 Fi Anderson

*SENSITIVE CONTENT*

Learning to let my children see me using a ventilator on a daily basis, despite the heartbreaking worry of how they’d react. Would the machines I depend on to keep me with them longer, frighten them? And would even they still love me the same? Continue reading Adjusting to NIV Around My Children

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Life of an Ambitious Turtle

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Unbeknownst to us at the time, the last outing before we self-isolated to minimise my risk in particular in light of the #coronavirus outbreak. It was merely travelling across #Manchester for an important hospital appt with my specialists, but it was lovely to stop off at #Wythenshawe town centre to kill some time with little Miss in tow and look what we found! Seeing these beautifully decorated bees 🐝 always takes me back to the day of the #ManchesterAttack and the pride we share as mancunians, united in one love to never let terror win! ❤️ Have you spotted these bees anywhere else? #documentingmotherhood #dailyparenting #mamablogger #parentblogger #thisismotherhood #parenthood #parenting #parentinglife #parentingblogger #inbeautyandchaos #joyfulmamas #holdthemoments #teammotherly #adventurevisuals #keepexploring #travellingwithkids #parentswhowander

Only parents of a #wildchild will know how hard it is when they're naughty then pull a face like this, to remain mad at them. This face is how my littlest Miss gets away with pretty much everything 🙈🤣 I just can't keep my face straight.... Can you? #wildchild #documentingmotherhood #honestmomconfessions #parenthood #inbeautyandchaos #letthembelittle #joyfulmamas #holdthemoments

I maybe late on the #WorldBookDay post on #Insta but I managed to sort costumes a week ahead this year. #MummyWin!! Or so I thought 😂 turns out my biggest girls new school only do it alternate years and my littlest nursery only wanted her in PJs as they're one of the many schools and nurseries in England who've decided to opt out as the day puts unnecessary financial and social pressures on low income families which I totally salute 🙌 We've been there and parents do stupidly get competitive. World Book Day should first and foremost about Books, celebrating the joy of reading and the talent of 100,000s of #authors around the world. We've added the girls costumes to the #dressup box and I openly admit that I hope they do away with the "costume competition" and focus on #reading in the years to come. #CatintheHat #kidscostume #honestmomconfessions #parentblogger #parentalk #unitedinmotherhood #nestingly #everysquareastory

None of us will be around forever, and while we shouldn't waste time by dwelling on how much time we've got left, we should be more mindful of how we choose to spend that time. #Memorymaking with my girls has always been mega important to me as a parent living with a life-limiting condition. I stumbled across this cute #activitybook titled #MummyAndMe by @mrsmeldrum and my biggest girl (7) and I are in 😍. We're averaging 2 activities a night and Abbie looks forward to this 1-on-1 time that'll she'll be able to cherish forever! ❤️ I want my girls to have a million and one happy memories and physical entites of those happy times to have and to hold, to look back on when the day comes I'm no longer here. Like a baby book on steroids, they can stick things in, doodle and we can create together, it's just what I was looking for. There's a Daddy version too by the way! #createeveryday #nestingly #everysquareastory #documentingmotherhood #joyfulmamas #teammotherly

This girl would choose a cardboard box over standard toys anyday of the week 😂. Spent 4hrs inside with felt tips drawing away. . If you have a budding artist who likes to draw on walls, contain them in a large cardboard box with supplies and watch the magic! . #LetThemBeLittle #WorldOfLittles #MamaDiaries #MummyBlogger #RainyDayActivities #CrayonCutie #ParentingLife #Upcycling #ImaginativePlay

It only took 4 years but little Miss has FINALLY sat still long enough for me to do plaits! I took a picture as that'll last longer 😂 but it's been a whole 30 minutes and she's not noticed they aren't regular piggies... . While some maybe rolling their eyes at to why this is #Insta worthy, my aim is to show people just how much the little things really matter in life. As a parent with a disability, things like doing your child's hair can be challenging or near impossible depending on how your condition affects you. It takes extra determination from us and extra patience for both. My girls have learnt for Mummy to do these things for them, their co-operation and patience is paramount. A great life skill to help your little one develop that'll pay off as they grow with better tolerance for others and a greater appreciation for their own achievements. . For me, it's a reminder that no matter how difficult the little things are to master in my own way, to never stop trying. Things aren't always impossible because you fail x amount of times and the pay off of that perseverance is rewarding second to none! #MummyWin #TameThatMane #CurlyHair #MotherhoodInspired #Patience #determination #DisabledLife

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