A Day in the Life of a Mum to a Child with Special Needs

Desirae’s story starts off like so many others. She fell pregnant at the tender age of 18 and was subjected to the disdain and ridicule that so many teen mums face at the time when they need the most support and assistance. Coming from a South African Indian background myself, I know of the type of shame that is associated with teen pregnancies and young single mothers. Very few care about the circumstances that brought you there, only the result and the shame that it brings onto the family. The crushing blow though, was when she found out that her daughter suffered from cerebral palsy. Cast your mind back to when you were an 18 year old and try to imagine what that would have felt like. The sense of loss for the future you thought you would have, the worry for the child that you now have to care for, the pressure of society to make ‘the right decisions’ for your little girl. It boggles my mind and makes me break out in a cold sweat. I was 29 when I had my first child and even at that ripe old age (sarcasm) I felt overwhelmed. Desirae is a special type of person though. Not only did she not drown under the responsibility and stress, she rose above all of it to become her daughter Savannah’s protector, cheerleader and champion. That scared 18 year old girl is now a Mum of three, a happy wife, a motivational speaker, an MC, a blogger at A million beautiful pieces and most recently an entrant to the Mrs South Africa pageant. This is what a day in her life looks like…


Desirae:
Mothering three children who are in three different stages of their lives means that I sometimes feel like I am three different people. It can be rather chaotic in my head as I filter who and what is a priority as the day progresses. However, I have worked out a few ways to stay in control and to be available to my children, my husband, my work commitments, my extended family, my friends, my social care commitments and my children…whoops…I said children already. Okay, let me break it down to a day so I don’t confuse myself.
4:30am: I hear hubby wake up to let the dogs out and that is my cue to rise and shine. A prayer cascades off my lips as I sit up. After a shower, getting dressed and sorting out the laundry, I head off to the kitchen.
5:00am: The washing machine starts its work day and I begin packing four lunch boxes. I take note of what is in the fridge so that I can discuss with my mum what lunch options there are for Savannah (my twenty-one-and-a-half-year-old daughter with special needs), the helper and if its Thursday then the gardener is included. Savannah doesn’t feel well on most days and lives with a deal of pain. Management of her diet and her physical movements for the day have to be continuously discussed and planned for and is something I never stop thinking about.
5:45am: I have a super quick make-up and hair routine and just about this time my mum comes into my house from her cottage on our property. I discuss what the helper needs to do for the day and Michael fills my mum in on what Savannah’s night was like (she needs help to turn over and doesn’t sleep through the night because of her discomfort). Thankfully my husband is a much nicer parent for night duty so he usually does that. If it is a Monday morning, then my mum goes off to her client and it is the day I work for myself. It gives me a chance to take Talisa and Eli to school. We have a habit of discussing the week ahead. I find it helpful for me to hear from them what they are anticipating to be challenging for the week and what they are looking forward too. But remember this is only a Monday. On every other work day…

5:55am: Michael and I leave for work and I usually arrive by twenty-five past six at the office. I am either working from the office for the day or at a client. While I am at work, anything can happen at home. Savannah can become sick suddenly or the helper does not arrive on time or not at all. This leaves my mum with the task of taking Savannah out in the cold or rain when she takes Talisa and Eli to school. Having an adult with special needs at home with my almost sixty-year-old mother needs to be thought through. My helper is a vital part of my mental and emotional well-being, and too often the source of my disappointment and frustration. I’ve had to learn that while I can’t provide the best circumstances for Savannah’s care as a working mother, I have to at least have a backup plan. Which is my brother who lives nearby with his family. Both he and my sister-in-law help to take Talisa and Eli to school if the helper doesn’t arrive timeously.

3:00pm: The end of the work day and the beginning of the work at home. Some days Michael and I travel together, and it is just about the only time we are ever alone. So, it’s a good time to catch up about the children, about important financial decisions, politics and sometimes to just be quiet together.
3:35pm: A quick stop at the shops or the pharmacist, depending on who needs what at home. Alternatively, we race to collect Talisa from her extra mural activity.
4:00pm: Home sweet Home. My son is usually the first at the gate so he can fill us in on his day. If it happens that Talisa too comes out to greet us then I know that something important has happened and she wants to discuss it with Michael and I, or possibly just me. I just have to say that if I was in a sci-fi movie, I am sure that anyone watching me at that precise moment would see a pink, fuzzy glow illuminating from within me each time Talisa calls upon me for “a talk”. I’m still delighted and deeply appreciative that at fifteen and a half years old, she wants to share her personal experiences with me. And oh God, please long may it last.

4:15pm: When Michael and Eli leave to drop off the helper at the main road and for Eli to attend his extra mural class, it is my time to catch up with Talisa about her day and with my mum about what Savannah’s day has been like while I start dinner. My mum lives on our property and is a Godsend to us, filling in for us with the children and helping to make sure that savannah is safe she we are not at home. She is also a long-distance hiker and runs her own company from home, which means there are days she also can’t get to do everything. On those days and on weekends I am Nigella Lawson. Okay not Nigella but I can pretend. However, on the days when Savannah is sick then meals are made up of anything that anyone who is available can make.
5:00pm: This is mine and Savannah’s special time when she gets my undivided attention by me helping her to stay in touch with her many friends. She is unable to reply to her emails by typing herself anymore so either I type for her or she responds with voice notes on WhatsApp. As well as being a person with degenerative cerebral palsy issues, Savannah is also autistic and has complex sensory issues. Sometimes she struggles to focus when there is too much external stimuli. I have to make sure that while Eli and Michael are out and Talisa is busy with her work in her room; Savannah and I get through as many replies as possible. Often Savannah thinks about people who have not emailed her or connected with her in a while, then its matter of filling her in on what has been happening in their lives so when she sends a message to the relevant person, she has their current context. Alternatively, we watch her favourite TV shows: Big Bang Theory, Ellen or the Talk.

6:00pm or so: As the children set the table for dinner it is a cacophony of sounds as two or three discussions take place simultaneously between us five and sometimes when my mum joins us. Our gorgeous Labradors Jaymie and Blue bark and moan with delight as they anticipate their dinner. Eli (my wanna be Ed Sheeran) usually is “singing out loud” between his contributions to the conversation. With Talisa and Eli doing extra murals almost every day of the week, their social network is wide and keeping up with all the stories and must do’s mostly take places at this time of day.
Sometimes Savannah is able to sit at the table with us and eat by herself. Other times Michael and I take it in turns to feed her while she is at the dinner table. Then there are times, more frequently these days, that Savannah has her dinner (I feed her) while laying on a couch within view of the dinning room so we can still be part of the dinner conversation there. Sometimes I feed her before dinner with the rest of the family. It all just depends on what works for her on that day. Dinner also serves as time of discussing our devotional reading passages.
6:45pm: After dinner is cleared away, Savannah is changed into pyjamas and then listens to music in her room for a while. This gives me a chance to help Talisa with her homework. If it is Maths, then um…her dad helps her. My family have long accepted that I am mathematically challenged and it is best, no matter how desperate the situation is, to NEVER ask me to help with that subject. If Talisa does not have homework, then we get to watch a show together or we read in the lounge.  
7:30pm or thereabouts: Savannah joins us in the lounge if she has not arrived earlier and I give her a lovely massage while Michael and her catch up for the day. Eli says his goodnights and heads off to bed.

9:00pm: The rest of the evening is dependent on whether Savannah slept during the day, which means she won’t fall alseep early or if Talisa has lots of homework to finish.  Michael and I negotiate which parent stays up with the girls. If I have a blog post to write, emails to respond to, something work -related to read; then I stay up with the girls. If Michael has a soccer match to watch (we are avid, sold out, bordering on crazy, Manchester United supporters), then he stays up and I go to bed.
Once I go to bed, it is the time I do my research on Savannah’s regressive condition. Probably not the best bedtime reading, but it is the only time to read and to absorb the information about what is happening with her. As she has a  complex medical profile, it is my persistent note taking of the changes we notice that best guide her doctors as to what to do for her. And sometimes, it also helps me to realise what IS true for her and us. It makes me a better prepared mother to help all my children navigate their personal journeys in a very different set of circumstances than their peers.
Then sleep.  Glorious, wonderful, sleep……….


Feeling as if your life isn’t as crazy as you thought it was? Yeah, me too.
In case you missed it:
A Day in the Life of a Stay at Home Mum
A Day in the Life of a Work from Home Mum
A Day in the Life of a Home Schooling Mum
A Day in the Life of a Single Mum
A Day in the Life of a Mum of 5
A Day in the Life of a Mum of Twins

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