I’ve always been an average girl living life day by day not really noticing what could happen next until one fateful morning when something changed me forever…what greater miracle than bringing your own child into this world?
I mean what more can be glorious or thrilling than having a sweet little baby?! If only motherhood were as magical and delicate as I imagined all these years; if there wasn’t so much worry with something called Multiple Sclerosis (MS)!
What is it like to live with MS? It’s hard, painful and frustrating. Most importantly of all though, the majority of people out there just don’t know what we go through on a day-to-day basis due to their lack of experience or simply ignorance as they think that over time you’ll get used to your situation and be able to deal with everything one step at a time; not true! Only those who have lived in our shoes for even just one day will understand what I say when I speak about living life as someone who has been diagnosed with Multiple Sclerosis (MS). The best way for most people outside this club called “MS” would be if they could only spend an entire 24 hours seeing how things are for us.
It’s been 18 years since I found out that MS would be a part of my life. Having a baby is something, however that never crossed my mind or was on the top of my list to worry about. The thoughts running through my head were endless leaving me feeling unsettled about how I could possibly ever take care of another human being.
I questioned myself wondering how can I be the one to call on when I need to do the calling on for my own self! ( When I’m hardly able to handle my own physical needs.) Oh boy, what a scary thought and that’s why didn’t think motherhood was for me. And I had been told couldn’t happen for me, so let it be. However, life has a way of making things just happen-happen with reason..
I’ve always been told that I would never be able to have kids, but it turns out the Lord had other plans. Some say He gives challenges to those blessed enough to receive them – and apparently, that includes me!
With that said, I became a mother at the young old age of 38..well 39, but I will get back to that later. March 11th 2020 is when my life would be forever changed and saved all at the same time. This baby I carried for nearly 5 months without even knowing knew me well before I knew her! From then on out I lived right – I threw away foolishness that stole my time and more so my morality! Drs always cautioned me that having a baby would be difficult for someone with MS.
I realised there was no easy way around this obstacle in front of me, still, I was scared: how could one person take on raising another human being when they themselves are struggling? As it is known amongst many people who have MS, after giving birth attacks are likely to happen again. They range anywhere from seizures making you less than symmetrical in shape all the way down to mobility issues, eye problems bladder problems cognitive impairments – anything really. I imagined my challenges as an attack or exacerbation of the disease, leaving me unable to care for myself and even more importantly caring for my child.
The mental anguish of feeling lower than the lowest has been one of my most detrimental symptoms, but I knew that it was time for me to let this emotion in and then be done with it. There was a point where I questioned myself by asking “What if?” or even “How?” It’s like how am I going to be enough of a mother when there are so many things mothers should do – but all these worries were pointless because life wasn’t about planning; rather, it happened on its own accord.
My reality is that each day, the disease can be crippling. However, I had to accept and welcome this new phase of my life. I did my best to let fear take a back seat because when your pregnant it’s time for you!
So on an all too beautiful July day, I had my baby shower – what a special event it was! The house was filled up with laughter from friends and family who came together to support me and made all kinds of memories with me. All of these lovely people came together to support me and made all sorts of memories with me. I was so excited on my special day, but life has a way of just making things happen. To my surprise I found myself whisked away from the party straight to the hospital where I would be spending time in the maternity ward instead as my little one had decided to come into this world early! This wasn’t because they were inducing me or anything like that either; it turns out preeclampsia along with some other conditions and complications made an appearance on short notice.
With so many Drs surrounding me, I smiled in silence through the complications I had been dealth. Finally, 6 pushes and 20 minutes later, my miracle baby came out – she made her entrance into this world with a bang! And here’s what sealed the deal: my daughter was born on July 15th – yes, MY 39th birthday! I knew right from that moment that life would be something different for us both now…I had put all my worries and fears into how MS might affect me afterwards but seeing her scrunched up, beautiful face gave me hope for our future.
Post-birth was a long and traumatic journey for me. I spend over a month in and out of the hospital. I learnt from my doctors told me it wasn’t my MS that caused all of these problems but rather a blood infection due to negligent staff practices at the hospital! And then they had bungled up even further by performing risky procedures, I went through more than a few demanding procedures that left me with a slipped disc causing and sacroiliitis wreaking havoc on my already weak fused scoliosis spine.
As I remained hospitalised, unable to see my beautiful newborn baby girl and immobile the only words that continuously repeated in my mind were those learned from my father who said “this too shall pass.”
The weeks wore on and ever so slowly did my physical healing progress. After being gone for way too long, I was thrilled to make it home not alone but with a walker and crutches; all that mattered is she knew mama had finally returned. With one look at me, my darling girl recognised her mother as if by instinctive reflex or some other innate ability of babies we are unaware of, all that matters now is that she knows mama has come back home.
Back at home, it’s been a struggle learning how to walk again and manage the struggles that come along with MS, but as time goes on those things get easier because your body learns what you need it to do. I’ve had my share of challenges since I was diagnosed with Multiple Sclerosis. The thing about this disease is that everyone experiences these hardships differently for themselves; some people experience an effect in every single part of their bodies while others only have one or two areas where they are impacted by ms more heavily. For me, sometimes moving can be difficult – something so natural like walking becomes hard when everything doesn’t always work properly anymore. I can’t walk or even get up out of a sitting position without my lower half being still and I mean robotic stiff. Imagine trying to race to your crying baby when she needs you, yet you are just a version of star wars characters R2-D2 or C-3PO. Along with that is indescribable pain that leaves me feeling like the Tin Man from The Wizard Of Oz minus his heart; all metal on the outside but nothing inside at times because it hurts too damn much! Oh but wait then add in extreme fatigue which mind you isn’t simply tiredness – instead, it’s utter exhaustion so profound where simple tasks seem insurmountable and conversations become exhausting as well due to mental fogging effects happening daily.
It’s no easy task to have MS, but it seems like the struggle is doubled as a mother. Maybe I don’t look diseased enough for you to assume that this happens — or if it does happen what can we do about my disease? The answer: nothing. You’re not going anywhere and neither am I!
I never thought I could manage the extreme demands of a baby, especially mine. She is an incredibly active little thing who doesn’t stop! Yes, every waking moment can be tough sometimes and that’s where my family comes in to help me out. There are no wrong ways or right way to be a mother with Multiple Sclerosis because we all have our own challenges. I thank the Lord for family!
It has made me fight through my challenges even harder because I am needed much more by my baby girl than I am by myself. The most important thing I can do for myself and MS is to be the healthiest person both physically and mentally that there is! I am destined to come out on top for one reason only, babies need their mommy’s!
