My name is Jane Phipson and I’m 39 years old. I live in KZN Hillcrest with my husband Howard and our one-and-a-half-year-old baby boy Micah. Moodles (his nickname) also happens to be blessed with an extra chromosome! I have two other children Carmen (20 years old) and Tristan (18 years old) who I consider to be mine despite them not being my own flesh and blood. They live with their mother in Johannesburg. Of course, we cannot forget our beloved Ragdoll cat named Rosie. She dotes over Micah and is highly protective over him.
When did you become a mom for the first time?
I became a mom for the first time in April 2018. Our beloved redhaired baby boy decided to surprise us a day before my birthday. My waters broke on Easter Monday the 2nd and Micah was born on the 3rd. So when I woke up on April the 4th he was my best birthday present EVER! I delivered him via natural birth without any pain medication or epidural. Crazy right!! The very first thing I noticed was his red hair and his super fair skin. I felt like I had given birth to an Irishman lol.
When did you find out your child’s diagnosis?
The doctor noticed a slightly thicker than normal nuchal fold behind Micah’s neck at our 12 week scan. This can be common in babies who have chromosomal differences (I strongly dislike the word abnormalities, which usually follows the word chromosomal. Reason being, God didn’t make my son abnormal, just different. It’s the world that chooses words like abnormal due to a lack of understanding or a fear of being different.) I then was asked to follow up with blood tests which showed a very high risk of our baby being born with down syndrome. We refused an amniocentesis due to the small risk of miscarriage. This meant that the entire rest of my pregnancy was lived out in a state of the unknown. I prayed a lot during this time, resulting in periods of immense peace followed by periods of intense fear and dread of what might be.
By the time the day finally arrived for Micah to be born, I had a great support system in place. My sister Kate was part of this group, literally staying by my side the entire time. When they placed my precious bundle on my chest, I couldn’t help but notice his tiny facial features, lower set ears, almond shaped eyes, the slightly crooked pinkies on each hand and his very floppy neck. I knew straight away that he indeed had been given a little something extra. We had confirmation of a Trisomy 21 diagnosis when Micah was about 2 weeks old.
What is the hardest part about being a mom of a child born with Down Syndrome?
Boy, this is a loaded question! There are many difficult factors about being a mom of a child born with Down Syndrome. However, the highs far out way the lows.
I’d have to say that the most difficult part of raising Micah is that most people tend to see his diagnosis first (I was like this before Micah’s birth) and only once they spend lots of time with him, they discover he has an incredible personality and thousands of magnificent qualities that make the world a much better place.
I’ve also discovered that the most rewarding factor of being Micah’s mom is his ability to change me for the better. For the first time in my life I’m able to see each person for who they are and to love them regardless of race, age or any other difference. I’ve also established a much stronger identity in who I am, resulting in me not becoming overly sensitive when people stare. A big warm smile from my side almost always makes the other person smile in return. Often a wonderful conversation ensues, and another friend is made.
What do you do just for you?
My favourite thing to do for myself is to sit on a quiet beach with a good book and listen to the incredible sound of the waves. Unfortunately, that hasn’t been very possible in the last year or so. In second place, I enjoy a warm candle lit bath whilst listening to relaxing music.
Favourite guilty pleasure?
I’d have to say pigging out whilst watching a good movie. The stash must include loads of savoury snacks and of course chocolate.
If you had to pick the soundtrack for your life what would it be?
The soundtrack for my life is “A Whole New World” from the movie Aladdin. I particularly feel these words are applicable since Micah came into this world:
“I can open your eyes
Take you wonder by wonder
Over sideways and under
On a magic carpet ride
A whole new world
A new fantastic point of view
A dazzling place I never knew
But when I’m way up here
It’s crystal clear
That now I’m in a whole new world with you!”
What is the kindest thing that someone has ever done for you?
I cannot possibly choose one as there are numerous, so I’ll mention three very kind people in Micah’s life. One of them is a lady who went above and beyond to come and care for Micah every morning for quite a few months so that I could go and work. She happens to be a qualified pre-school teacher and Micah absolutely loved her to bits. Her gentleness and care truly gave him the ability to shine! Another lady is his OT who has gone above and beyond to ensure that Micah has had the very best. She is a dear friend to our family and without her the journey wouldn’t seem so bright. Last, but certainly not least is Micah’s audiologist. She has come to our house numerous times in order to test Micah’s ears and to ensure she gets accurate readings. Twice she has stayed until 11pm at night sipping on cups of rooibos tea and waiting for Micah to go back to sleep after having his ears prodded.
What does Down Syndrome Awareness Month mean to you?
Down Syndrome Awareness Month is a chance to educate people about the beauty of our children’s diagnosis. There is something spectacular in that extra chromosome and I want the world to know about it. I often want to shout it from the roof tops about how our world would be incomplete if people with down syndrome didn’t exist or any other difference for that matter. It deeply saddens me that in Iceland they have eradicated this extra chromosome through abortion.
If you could change one thing in the world to make it an easier and better place for your child, what would it be?
If I could do absolutely anything for him, I’d transport Micah out of this world into the safe and loving arms of our Father in heaven. This is a cruel world and Micah is going to face challenges but aren’t we all. So realistically, if I could change one thing it would be for all people to genuinely celebrate Micah for Micah. I don’t want people to feel sorry for me or my family. Most people don’t say sorry in words, but I sometimes can see it in their expression. Besides being faced with these awkward moments, I’ve discovered a kindness and a love in most people that I never knew was possible. This is something that I certainly never want to change!

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