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From A Mothers Perspective - Part 4

A Day In The Life Of Blind Motherhood By Holly Bonner

30th August 2019

The static noise of the baby monitor blares behind my head. I can hear my three-year-old calling me, “Mommy, I’m awake.” I’ve slept the entire night in our Lazy Boy recliner… again. I look down at my chest and can barely make out my 18-month old daughter who’s been curled up on top of me since 3am. She is the image of perfection, even to this blind mother. I carefully run my fingers through her hair, caressing her curls. I touch her cheeks with my palm, in an attempt to gently rouse her from her sleep. My day of Blind Motherhood begins.

The three-year-old begins to grow impatient. “Mommy, I’m wet can you change me?” “Mommy, do you hear me? I’m hungry.”

I carry a half-awake baby into my kitchen and place her on the floor while I rummage through my cabinet looking for my eye drops. I find the right vile and instill one drop in each eye. Then I wait. It takes several minutes before my morning blurriness becomes slightly clearer.

 

I am completely blind in my left eye. My right detects shapes and light. I look down at my kitchen floor, and see my daughter happily staring up at me. “Baba,” she says and sticks out her arms. I scoop her up, placing her on my left hip. I head over to my kitchen counter, grabbing a bottle that’s already pre-filled with formula powder. I grab the pitcher of water next to it and listen intently to the sound of the bottle filling. It’s the morning beat to my drum, and in perfect rhythm, I instantly know that I’ve hit 8ounces. I don’t need to see it. I just need to hear it.

 

I pop the bottle in my baby’s mouth and move back to the living room. I lay her on the throw rug in the play area, reaching for a box of baby wipes and a diaper. Gingerly, I open the zipper of her footsie pajamas, terrified I might catch the zipper on her skin. She’s changed and thankfully unharmed. I place her in the pack and play while I run upstairs for my other girl.

 

I run my thumb across the top of the baby gate that guards the nursery, pressing down on the large button that will give me entry. My rambunctious toddler is already out of bed, having a very detailed morning meeting with four stuffed dinosaurs. She runs and hugs me. “Mommy, can we go downstairs? Can I bring my dinos?” “Of course,” I reply and begin the balancing act of carrying her plus these plush friends down the stairs.

 

I count every stair in my head – one through twelve. When I get to number thirteen, I know I’ve hit the landing. Two stairs left and one more baby gate. I breathe a sigh of relief that we made it down safely again this morning. Another baby gets a diaper change, play clothes are put on, and the television is set to Disney Junior. My daughters babble away to one another, as I sneak into the kitchen to make breakfast. Bananas are sliced, cereal is poured, and I carry sippy cups back to my hungry crew. We sit on the couch – the three of us – and enjoy the start of our day.

 

By 10am, Daddy is home from working the midnight shift. He hugs his daughters and spends a few precious moments with his family. Exhausted, he heads up to bed, leaving his blind wife in charge. My husband has confidence in me, never doubting my ability to mother, even with my visual impairment. Shortly thereafter, the baby is ready for nap time. I make the dreaded stair climb yet again, carrying her, a stuffed dog, a bottle and a blanket.

 

Back in my living room, my toddler is now requesting a string cheese. I fight with the packaging to get it open, tearing her snack in half. When she sees my handy work, she begins to scream. “I don’t like it like that!” Back to the fridge to get another string cheese. This time, I take extra care in opening the packaging to her satisfaction. I give her a coloring book and put on another cartoon. More eye drops go into each of my eyes to fight the constant burning sensation I feel. Finally, I can work.

 

For the next two hours, I juggle laundry, prepping dinner and my part time job. My home office is my kitchen table and I listen to emails audibly before I respond to each of them. My daughter interrupts me periodically looking for a snack, a toy or to put on Netflix. It’s a dance we do daily; a parenting waltz that she mostly leads.

 

The day seems to evaporate and suddenly nap time is over. I bring my baby down to the living room, change both diapers yet again and prep lunch. I find my favorite saucepan, fill it with salted water and make my way over to the stove. I line up the handle of pot, so it’s centered on the burner. I listen to the clicking noise as I turn the dial. The flame ignites and I wait for water to boil, listening for the sound of emerging bubbles.

 

My daughters are locked out of the kitchen while I cook for their own safety and the little one screams for me behind her baby gate. I try to soothe her by talking to her, never leaving the pot for fear of an accident. After several minutes, the pasta is done, and I use my potholder to feel for the handle. As I move to the sink, I hear my girls fighting. I get distracted by their cries and splash boiling water on my hand. It stings with pain.

 

My husband is awakened by the kids and comes downstairs, finding me in the kitchen nursing my burnt hand. He helps me butter the pasta and place it on plates for the kids to have lunch. He tells me to be more careful, but he has no concept of the juggling act that makes up my daily routine. I smile, promising I will try, and he goes back to bed.

 

I play with my daughters indoors for the rest of the afternoon. I can’t go out alone. I can’t travel without assistance because they are both still in car seats. My blindness makes it nearly impossible for me to keep track of my energetic toddler on the playground while watching my baby in her stroller.

 

This is my life. I’m sequestered to the solitude of my home. No play dates. No mommy and me classes. No visitors. It’s just our little nuclear family, together, in my living room.

 

Dinner time arrives and my husband emerges yet again. I pull a chicken from the crock pot and take mashed potatoes off the stove. A bag of steamed vegetables comes out of the microwave. It’s classic comfort food for days like this, when I feel I’m in desperate need of “comforting.” My husband and I discuss work, finances, and the girls. The kids love to see their daddy. An hour passes, mealtime has ended, and bath time commences.

 

I fill our kitchen sink, testing the water repeatedly to make sure the temperature is just right. In goes my toddler. I set my voice activated kitchen timer, which alerts me to when bath time is over, otherwise she would want to stay in the sink for eternity. When the alarm says “time is up” she whines about getting out; eventually conceding. I dry her off, covering her with lotion and putting her in comfy pajamas. Her sister is next into the sink. She’s happily splashes until her time is up. Out she goes and she too is lotioned and dressed for bed. By 8pm, both girls are back in the nursery, tired from a long day.

 

More medicated eye drops are needed. For the next hour and a half, I get my house back in order. As I run my fingers over shelving units and containers, toys are returned to their assigned spots. One wrong move and I won’t be able to find a beloved toy for days. It’s worth the effort to avoid a toddler meltdown the following day. More laundry is washed and sorted. By 9:30pm my husband is awake, ready to head back into work for another midnight tour.

 

I sit alone on my couch, a laptop across my legs. I begin to write, blogging about my blind motherhood adventures. It’s my nightly ritual and I need it. Hell, I relish it. It’s my only outlet to express how I truly feel about being a disabled parent, the good, the bad and yes, the ugly. As my husband’s car pulls out of the driveway, I put in one last round of eye drops then it’s back to the couch to finish writing.

 

The house is quiet. I listen to the sound of the refrigerator hum, the static on the baby monitor and my fingers hitting the keys to my computer. I replay the day’s events in my head. I wish the eye pain was easier. I sometimes wish I could see more clearly. Despite being blind, I am truly thankful for my children and the support of my husband.

 

Suddenly, my baby wakes up and I am interrupted yet again, a blind mom’s work is never done.

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Holly Bonner, MPA, MSW, MPCC, CASAC is an award-winning mental health professional, professor, writer, and poet from Staten Island, New York. After battling breast cancer, Holly became legally blind in 2012. She navigates mothering her two little girls with help from modern technology and her beloved guide dog, Frances. Her website, Blind Motherhood, chronicles her adventures in parenting and provides useful information for all mommies. Holly lives by the mantra that even without vision, you should "never lose sight of life, love and laughter."

 

Website: https://blindmotherhood.com/

Facebook Blind Motherhood: https://www.facebook.com/blindmotherhood/

Twitter Blind Motherhood: https://twitter.com/BlindMotherhood

Pinterest: https://www.pinterest.com/blindmotherhood/pins/

Instagram: https://www.instagram.com/blindmotherhood/

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From A Mothers Perspective - Part 3

A Rejection Of Motherhood By Victoria Claire

8th August 2019

Here is the 3rd part to the “From A Mothers Perspective” blog series.  So you have had the perspective of my mum about how she felt when I was diagnosed with RP, you’ve also heard about Kim Owens feelings with her son Kai, so now I give you a completely different perspective….

 

from the mother that never was.

I was always one of those children that loved playing with her dolls, taking care of them and pushing them around in a toy pram, I also was always one of the children that would take care of the new young children that were starting school.  I always thought I would become a mother, the maternal instinct has always been there.  Like a lot of women, I thought I would be just like my mum, fall in love, get married and have a child.  I even had a name should I have ever had a girl!  However, the universe had a very different plan for me it would seem, once diagnosed with RP back in 1994 at the age of 19 everything changed.  Not just my career path and relationships but my whole future.

 

As RP is a genetic disease the prospect of me passing it on to my child would be a one in four risk, there were many other deciding factors to this too, but for me the thought of being responsible for having a child with blindness when I knew that was a risk was too much for me to bare.  There also were a lot of external influences with my overall decision not to have children.  My first marriage was one that I knew would never result in children, it was a short lived marriage and one that unfortunately broke down within 18 months.  When I eventually found my soul mate and married in 2007 it was already very clear that neither of us wanted to have children, it has never been something that my husband has ever wanted, and for me I was still being ruled by the prospect of passing on my RP.  So I made the bold decision the year we got married to have a sterilisation, this was done during an operation for endometriosis.

 

Recently I have felt my maternal instinct pulling at me once more, since I have opened up with my self development I have come to realise that I rejected my maternal instinct.  Back then when those permanent decisions were made I was a very different person, I felt that I had to do what other people thought was best, the fact that my husband never wanted children just sealed the deal to not have a child.  However, I now understand that despite denying the deep set want for a child I buried that feeling and kept telling myself it was for the best.  This also has made me feel as if, because of my sight loss, I wouldn’t have made a very good mother.

 

This I have now come to realise is that I rejected motherhood because I wasn’t strong enough back then to say want I really wanted.  My life is blessed with many outlets and activities that perhaps I wouldn’t have been able to do if we would have had a child.  I no longer feel I want a child now, I just acknowledge that I did all those years ago.

 

The problem this has left me with is I can easily misplace the maternal love, by this I mean, I can over invest in other relationships, which can then leave me very open to being hurt.  For me, the best way to cope with this is to find an outlet that allows me to place that unspent love, working with people in a community really helps.  I teach a creative healing class and find a sense of belonging with this, I also mentor those with sight loss and speak at sight loss conferences.  My latest project will involve using my profession as a sculptor to express the maternal instinct through my work.

 

This is my perspective of my personal experience, I feel that everyone should have the right to explore how they feel and what they want for their lives, this should be a choice made between the two people and be free of judgement and opinion.  Of course there are many other ways to have a family these days including IVF, surrogacy and adoption.  We live in a much more inclusive world where disability is far more accepted and does not need to hold back a family from thriving.

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From A Mothers Perspective - Part 2

Letting Go By Kim Owens, mother of Kai Owens

 

25th July 2019

Overnight our bright, happy, outgoing 9-year-old-son, Kai, became anxious and afraid.  He refused to sleep in the dark and he clung nervously to my side.  His personality changed drastically and we were terrified.  Over the next year, we visited many specialists but received no clarity.

Then one day I noticed that his handwriting started in the middle

of the page and trailed off the right side.  I asked why he wasn’t using the left side of the paper, and watched as he held the paper up to eye-level, and moved it from side to side, inspecting it closely.  Kai’s last eye exam had been 4 months prior, but I became certain that something was wrong with his vision.  The eye doctor agreed to take another look and that’s when he noticed that Kai’s retinas looked funny.

 

After several tests, a paediatric ophthalmologist called saying Kai had “a degenerative disease that was affecting his retina, and it would continue to progress….no treatment, no cure….”  The doctor’s words were so severe that I asked “is he’s dying or going blind?” “Blind,” he replied.

 

Blind.  Vision loss gave Kai an answer which relieved his anxiety.  I’d hear him simply state, “I can’t see that, I have vision loss.”

 

Blind.  I was wrecked and could not envision his life without sight.  Reaching out to other moms of blind and visually impaired kids I found, that most, like me, were stuck in a loop of grief and denial.  Eventually, through therapy and meditation I learned to welcome the grief, experience it, and let it go.  It was extremely painful to let go of the bright, shiny story I’d created on the day Kai was born, and even more challenging to let go of the dark, shadowy story I’d made up about blindness, but letting go of “my stories” was key.  

 

I remember the day my mindset changed: I had dropped Kai off with his Orientation & Mobility teacher and proceeded to the bakery at the end of their route to wait.  I was ordering blueberry muffins, when I caught a glimpse of them approaching.  My heart broke: my son, going blind, his future limited.  And, that’s when I noticed it: HIS SMILE!  I saw a little boy who had successfully crossed a busy street with his cane!  His joy was overflowing.  He wasn’t sad or frightened, he was radiating accomplishment and independence.  His version of the story was very different from the ones I had been clinging to.

 

It’s been 6 years since Kai was diagnosed with Retinitis Pigmentosa and he’s thriving.  He has about 5 degrees of blurry sight left, but he has a clear vision for his life and he’s learning the skills necessary to succeed, including: Braille, assistive technology and O&M.  As a mom, the letting go is hard but Kai and I have an agreement that works for us: If he needs help, he asks.  Once we have the situation sorted out, I let go again.  It’s a process.

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Kim is passionate about connecting with parents of blind and visually impaired kids. She whole-heartedly believes we are stronger when navigating blindness together.  You can reach her online at www.navigatingblindness.com or on Instagram www.instagram.com/navigatingblindness

 

Kai has become the world’s only sponsored, blind skimboarder.  You can see him skim and thrash on the drum set at www.instagram.com/kai.owens

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From A Mothers Perspective - Part 1

By Sandra Tinsley, mother of Victoria Claire

16th July 2019

My daughter was diagnosed with Retinitis Pigmentosa when she was 19 years old and just beginning her adult life at university.  How dreadful that must have been for her.

 

I felt absolutely devastated for her and myself.  Having been such a good baby, totally happy, always laughing, nothing ever bothered her, she would tackle anything.

I cried, questioned myself asking was it something that I had done during my pregnancy, had I worked too hard?  We had moved house 2 week before she was born, she was also born with the cord around her neck.  You always think the worst trying to find answers.

 

I am a person who will try very hard to help and do anything I can to help people and friends but mostly my family.  Life went on as usual, my husband continued to go to work and tended not to talk about it much, so much that I even thought that he forgot it sometimes.  We went to Moorfields eye hospital and had all the tests with Vicky, her dad looked up everything he could about R.P. on the internet.

 

Everything got bad for a time, her fiancé decided to leave her, she decided she could not cope with university on her own.

 

Vicky wanted to travel and see things before she lost her sight completely, (she was told that would be at age 30), with good friends she went to America then to Italy, this of course was a worry for us all, it only turned my hair and my husbands grey!

 

I had some very good friends who were either what I call cryers or “that doesn’t matter, she will be ok”.  They all did their best to be kind, let me chat to them about my worries and make plenty of cups of tea for me.

 

I remember going into our local post office and the couple who owned it asked “How are you today?”  I just burst into tears and said “My daughters going blind”. I must have really shook them up.  They always asked how she was for over 15 years, such a lovely couple, they really cared.

 

We had a burglary and the first thing I said to our neighbours was “It’s only things, not my daughter going blind!”  It must always be on my mind, always there and I hadn’t noticed.

 

After Vicky had yet another accident out walking she decided enough was enough, she would accept cane training.  A lovely lady from Guide Dogs came and took her out and she now has the confidence to go out day and night on her own with her cane.  Is it still a worry?  Yes, but she texts me to say she’s home and that helps.

 

As a mum all I can say is be there, help if you can, laugh with each other, cry with each other, try to stand back and watch and be a mum or dad or brother, sister or partner or friend.

 

Vicky is now married with a lovely husband who cares about her and I hope will always look after her.  She has become a sculptor, Ambassador for Retina UK, mentors others with sight problems here and abroad, surfer, skateboarder and is at present writing her autobiography.

 

I am so proud of my daughter.

 

Could I have coped like her?  I dont think so.

© Victoria Claire 2018

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