April 17, 2007

Motherhood with MS: Continuing the difficult but wondrous journey

Well, it has been a good 6 months since I last updated you, and Marcus is now a happy, lively and very clever toddler. The way a child develops, particularly from the age of 1 year old, is amazing to witness. Marcus is harder work now in many ways (you need eyes in the back of your head!), and he sleeps far less in the day now (only the odd nap for half an hour or so) but like a log at night (that came with proper solid food at around 10 month), but it has to be said,the journey from 1 year old on, is far more interesting, entertaining and amazing!

Marcus, now 17 months old, is at a simply adorable age! I must admit he is ultra-cute and very gorgeous but the main thing is that he is healthy and has a beautiful personality to match his looks. He is very bright and a real charmer so we are very, very lucky (with my only having a half-sized womb none of that could have been taken for granted).


He gets a bit cross if he is not allowed to do something (like press the button to turn off the tele while we are watching it!) but he soon gets over his little upsets including the bumps and little falls that all toddlers have, especially boys and climbers like Marcus! Otherwise he is very placid, happy and such fun. He has such a sense of humour like his Dad and totally ‘gets’ him! (and they look so similar as well that often people joke that I’ve cloned Steve!).


Marcus with his Dad at Balti King, Broomfill, Sheffield - the best curry house in the world!

I know we have not yet reached the ‘terrible twos’ but I am not too worried about this phase, and already, he knows when he has done wrong, and Steve is a strong male role-model and won’t take any messing about. They are never too young to learn and Marcus already learnt who was the boss very young age (in that if he is silly when there is nothing wrong with him apart from being over-tired, he just gets ignored!)

I am enjoying this age that Marcus is at, and seeing him develop. It is a wondrous journey! His first word was ”woof” (if you class that as a word!) in the Florida Keys, when he heard and imitated a dog, when he was just over 1 year old. But his first real word is “Bye, Bye”, which he has been saying for a few months now, and he waves. He says it a lot, even when he has just met someone, so for Marcus it clearly means ‘Hello’ as well! He also says ‘there’ when he hands something to you, and he blows kisses, does peekaboo, putting his hands over his face them shouting ‘boo’ when he takes them away, and when we say ‘Tazan’ he cries out ‘Whhaaaaaaa’ with great gusto, waving his arms around, and banging his chest. This he learnt after he handed me his Tarzan video and I did it. After that he started doing it, much to our amazement, whenever we said ‘Tarzan’.


Marcus at 'Art in the park'- he ended up in the local paper with a similar photo to this one so proving our boy is himself a work of art (and his Daddy is a piece of history, haha!).

He took his first real steps on the 21st of November, 2006 we know the exact date because we were in the Florida Keys and on the phone to my brother, Matthew, (Uncle Coconut) who was in S. America where he was travelling. Suddenly Marcus let go of the kitchen cabinet he was holding, and stood there balancing on his own. I panicked of course thinking he would fall over, and screamed for his Dad to step in and get him, but Steve held back! He has a feeling that it was ok and he was right, for Marcus then took his first two steps landing on my lap at my wheelchair. This was witnessed by his Uncle Coconut in that he heard all the shrieking that them followed as we hugged our little boy and congratulated him on being to clever.


We flew over to the Florida Keys on Marcus’s 1st Birthday as it happens (We’d celebrated it the day before with his grandparents, friends, a nice cake and too many presents!). Marcus was very good on the flight, apart from when he crawled down into 1st Class, and his Daddy videoed him doing that before he retrieved him, which did not amuse the air stewardess too much, who was quite literally stewing! Ha ha!).

I had become pretty immobile and rundown by then, so it was a relief to have Steve around and to have less to do apart from sunbathing and swimming. The year since our Spring visit to the Florida Keys for the month of April had been a real roller-coaster of survival.


Marcus and his Mummy (and Tigger!) in the Florida Keys in our holiday home

Thanks to the MSRC’s New Pathways magazine, I’d managed to buy a brilliant device to help with the foot-drop in my left leg, which was causing me difficulties in walking at all, as my left ankle just wouldn’t lift! The device is called a MuSmate (for further information Click Here) and was invented by the husband of a lady, who has MS. It is quite a simple contraption, though very cleverly designed. It is worn around you shoulders, and straps to one or both legs with velcro (you can buy a single or a double MuSmate). You look like a bungee jumper with it on, but it just helps to lift that foot or feet up, so stopping them dragging and enabling you to walk.

It is brilliant, and of course the more you use the muscles, the more you improve. It proved to be a life-saver on the aeroplane as it enabled me to walk the short distance to the toilet, which made life a lot easier (OK, you can manage with pads and nappies and such like, but I prefer not to have to. I only wear them as a back-up!).


After being in the Florida Keys, and swimming daily for 8 weeks (October 22nd to December 12th, 2006) Steve and I went on a trip to South America for 2 and a half weeks. We flew Marcus’s favourite babysitter out to the Florida Keys for the month to look-after Marcus, so he was very happy and well looked after while we were away (though that did not stop me worrying or missing him. What is it about Motherhood that turns you so irrational? I felt like we were away from Marcus for an eternity!).


Marcus swimming with his friend Sammy in the Florida Keys

The trip has been planned thanks to my brother, Matthew's (Uncle Coconut’s) organisational skills, through the internet (Steve had been far too busy with Marcus, me and running the business to get around to it, and I’d been far to busy just trying to survive!). I’m not sure that I really believed that I would be well enough to go on this trip but as per usual, I said yes and took the chance, as not many people get the opportunity to travel to Angel Falls (in Venezuela), the Galapagos Islands (in Ecuador) and Easter Island (off the coast of Chile) so I’d have been a fool not to!

However when we received news that Marcus’s No.1 babysitter, Tigga, was in hospital with meningitis just two weeks before she was due to fly out to Florida, the trip prospects didn’t look too good. However, thankfully the meningitis was bacterial and was caught early enough (treated immediately with anti-biotics) so Tigga bounced back really quickly and was fit and ready for a month in the sunshine by Saturday the 10th of December, the day she arrived at Miami.


We drove up from the Keys to Miami to meet her at the airport, and visited the Everglades on the way. However, at Miami airport, there was no sign of Tigga in arrivals, nor at the spot we’d arranged to meet her as a back-up plan. This was very stressful, especially when a lady who worked for American Airlines, whispered to me that Tigga had not even been on the international flight from Manchester, and then disappeared!!! Steve then came into the airport and made a few quick enquiries, and found out that she had been on the flight after all, but was just on a later flight from Boston, having missed the connecting flight (which made a lot more sense!). Anyway, she turned up and I was so relieved to see her!!!

Marcus was very pleased as well, as he was getting rather fed-up of circling around the area of Miami airport in the car with his Daddy. He was in mid-scream when she got into the car, and he recognised her immediately and the scream turned into a smile followed by much laughter as she greeted him with a tickle!


Marcus with Tigga, his No. 1. Babysitter

The next day we had to introduce Tigga to various people and settle her in very quickly, because in the evening we had to drive back up to a hotel in Miami as we were taking an early flight out to Caracus in Venezuala! It was a bit hectic and for me traumatic leaving Marcus. Although I knew rationally he was in good care and would be well looked after, I still couldn’t face the mere thought of leaving him.


Marcuswearing all the beads he collected at Fantasy Fest, Key West.

He was blissfully unaware of course, and he came to the door and waved us off quite happily. As Steve (Mr Rational) said, Marcus was only interested in where his next bit of entertainment and meal were coming from, and he was going to get plenty of attention and care, especially as Tigga’s boyfriend, Matt was flying out later that week for 10 days over Xmas!).

So they all had a great time, and once away on this trip, I was far too busy doing it and surviving it (with 17 flights in 2 and a half weeks, and many early-morning starts, ahhhhhhhh, it was intense!) to overly worry about Marcus (though I still did and I missed him like mad, but I still only called 3 times over the 2 and a half weeks which I think is pretty good for a mother of a 1 year old!). I just felt grateful to be on the trip at all (with my trusty MuSmate to make getting to the toilet on all the flights possible!) and surviving it was enough on it’s own to be honest. I could never have handled having Marcus along with us as well!

At Angel Fall, I got the surprise of my life as Steve asked me to marry him! After 8 years together, a successful mobility scooter business a baby and MS, I had thought he just wasn’t the marrying type and accepted that. However it turns out that he had been planning to propose to “his angel” at Angel Falls for a few years, but the whole trip just didn’t happen when Marcus came a long. He still kept up his training in the Gym, so he could manage to carry me all the way up to the Falls!

It the event, however, he discovered that this would have been too difficult and dangerous even for a team of men, as it was too far, too steep, too rocky and therefore too dangerous. So after the 6 hour canoe ride (the canoe held about 12 people) to get to the bottom of the climb up to the Falls, (we had a 4.30 am start that morning!), I rested below in a lovely hammock in the jumgle, and Steve set off to make the 3 hour climb up to the Falls, which he did it just 1 and a half hours leaving the rest of the party miles behind! All that training paid off!). I saw the Falls from afar when we pulled up in the boat down below, and I also saw then from an aeroplane on a flight we took the next day so I didn’t miss out at all but I had no idea what Steve was planning!

Despite his disappointment that he could not actually carry me up to the Falls, Steve did the next best thing and videoed his marriage proposal to me, before he then went to swim in the pool at the bottom of Angel Falls and enjoy it’s spray! We were lucky as there was quite a lot of water coming off the Falls at the time we were there. Sometimes there is hardly any! It is famous for being the tallest waterfall in he world, being a mile high!


Steve videoing his marriage proposal to me at the foot of Angel Falls.

I had no idea what Steve had done until we got back to camp that evening and he played me the video back. I was shocked, stunned, gob-smacked and speechless at seeing the Falls up close and hearing Steve’s romantic proposal, but I did manage to say ‘Yes!’ and it was hard to keep a smile off my face for the rest of the trip.


Steve proposing again, this time in person, at the lake down on one knee.

And it was some trip! We went on 17 flights in 2 weeks and 4 days. The schedule was mad, it nearly killed at times, but we got to Galapagos Islands, and Easter Island off the coast of Chile. We saw the huge Moi’s, the stone figureheads, located all around the Easter island and for me to get to Galapagos islands was a major achievement.

At Quito, before we went on the Galapagos trip, we even visited the Equator and stood on the actual line! They showed us a demonstration as well of how water swirls down a sink clockwise and anticlockwise on each side of the Equator, so no, that’s not a myth!

For Galapagos we chose a small cruise trip, The Seaman, so it wasn’t very disabled-friendly, but I managed, and te advantages were well worth it. Whilst a big cruise-liners would have made it difficult to get on and off with all the stairs and health a safety regulations for taking a disavled person onto the islands, our cruise boys made it easy. They just bunged me onto a dingy, bunged the wheelchair on the dingy and then there I was on ths Galapagos islands seeing EVERYTHING…


Seals, huge iguanas, penguins, a huge variety of birds and wildlife, and when we went snorkelling we saw fish, turtles, and allsorts, Steve even saw a shark!


On the main island we got too see the huge +200 year old tortoises up close in both a park and the wild.


Steve even kissed one called Ranger, and it is said there was another marriage proposal, but that this one was turned down on the grounds of bad breath and scaly skin, but Steve is now working on these issues, hahaha!


Steve kisses Ranger

Angel Falls was stunning and being proposed to there was the icing on the cake for me. Galapagos was spectacular and mind-blowing.


Easter Island was a part of the trip that was really too much for me with the flights to get there and intense schedule. Both Steve and I ended up pretty ill in Santiago on the way to Easter Island and on the way back and I found it too long a time to be away from Marcus, but looking back I am glad I went. How many people can say they spend Xmas Day on Easter Island? I used a wheelchair to visit the island, and it was very bumpy (and quite hard-work for Matthew and Steve as well!) but I DID IT!


The best sight of the whole holiday, sad though this may sound, was for me seeing our Marcus again, who was in the baby pool with his Tigga, when we got back. Marcus just stared at his Dad, when we arrived, and stared and stared, then he started to cry as his Dad stepped away to let me in the pool area on my scooter. If was as if he suddenly realised, hang on, where have you been, I knew there was something missing….and then panicked at the thought of his Daddy going again. After just 2 hours of cuddles and playing and not letting his Daddy out of his sight, life went back to normal for our boy and he was just fine again!


Our happy boy back with his Daddy.

We then spent a happy new year in the Keys, introduced Tigga to the delights of Key Lime pie! She also swam with dolphins, a dream of hers since she was a very young girl.


Tigga swimming with dolphins, father, AJ (who checked out her bum!), and son Tanner.

All too soon (one week later) we flew back to cold ol’ England. After two and a half months of sunshine, it was quite difficult to adjust too the winter but almost immediately we caught awful colds, and this year has been tough of me, as we seem to have non-stop bugs and colds all year. This is no fun for anyone, but for me it is particularly disastrous a it trigger my ms as well, and makes me rundown, weak, immobile, shaky and ill. I think it is just the number of people Marcus and I now come in contact with through going to the baby groups, that is the problem, but I’m not yet prepared to give up getting out and about with my boy because of this.

I must admit, Steve and I pick-up and suffer the colds far worse than Marcus. So I can’t even say for sure it is entirely down to him. There has been a lot going about but I am hopeful that with the Spring, will come a break from all these colds.

Since we returned from the Florida Keys on January 6th 2007, we have been enjoying Marcus’s day-to-day developments. The bugs and colds have been tough, but as we approach the Spring, I am hopeful that better weather will bring with it better health.

Tigga, who did not make it to University last September is still living at Steve’s flat and is worth her weight in gold, as things did not work out between Terri and ourselves, so Tigga now has Marcus on both her days off (so Tuesday 10 am till about Wednesday 6 pm, is my time for work, exercise, therapies and often just recovery, and I need that too. Marcus then goes to his Grandma’s (my Mum’s) for most of the day on Thursday and we often go up to my parents house on Sunday’s as well. Marcus cannot contain his delight whenever he sees his Grandma. She is the favourite person in his Universe (though his Daddy is of course the back bone!). I think it is partly because of his musical interests (watching her play the violin, and also playing the piano up at their house), but also his love of nature. They go ut into the countryside together, to the stream, the Brook and the Parks, and Marcus loves it. He always comes back completely shattered!!!


Marcus wearing a hat we bought in Quito, Ecuador.

As toddlers go Marcus is very close to perfect (if he was actually perfect I would be very worried as toddlers are not supposed to be perfect!!!). He is a very happy little boy, very bright, and always laughing, especially with his Dad, who he totally gets (they are as thick as thieves!). He is very good-natured and a little charmer, so much so that when you are with him, it is like being a celebrity, as Marcus becomes the centre of attention wherever he goes. I get on the tram with him on my lap and by the time we get off he has made at least one new friend and been adopted by a grandma-type lady! (people are always so lovely and willing to help, especially as it is a unusual sight to see him on my lap on the scooter. I make sure I hold him tight, drive very carefully, and keep distances to a minimum!). We often go to parent and toddler groups, which Marcus thoroughly enjoys and also Upperthorpe Healthy Living Centre/ Library, where he loves toddling about and seeing people he knows,and going to the pool, the sports-hall, the Gym and the cafe. His latest favourite activity there is to call the lift, which he can almost reach, and we go in it together and go up to the next floor in it. He loves it when it judders. Everything is new and exciting and wondrous to Marcus and it is a real joy to see his joy in everything he sees and experiences!

Recently I have become brave enough to take the tram to town with him (only a few stops) and I do a bit of simple shopping and then take him to the peace gardens, where there is a wonderful fountain, and then to see the big shiny balls and onto the Winter Gardens, all of which he loves.


Marcus at the peace gardens in Sheffield town centre.

Sometimes we then go onto a Baby Group held in a church off Chapel Walk called Jelly Babies. The reason I say I am brave enough is because of my bladder urgency, which takes some managing with a toddler on your lap, but I wear pads and padded pants and only rarely do I get caught out. The padded pants are so not cool but necessary to avoid embarrassment. I can’t just get up and use my Pipinette pot discreetly with a toddler on my lap, and likely to run off if I stand him down, and the last thing I want it an accident especially as Marcus gets older and becomes more aware.

My Dad’s health has not been as good of late. Having the throat operation last summer really aged him. It was a big thing to go through at the age of 78 and it has caused him a lot of shoulder- and muscular pain. He is also a bit forgetful now and can get a bit confused, and it January he had a fall (we think he stumbled) and cut his head, but he is doing very well considering, and I am very grateful that the operation took out all the cancer. I love my parents so much and value the time we have together, especially now with Marcus too.

My brother Matthew came back from his exciting six months travelling the world, after working on a placement at a hostel for young girls, in Mongolia, and he has been living back with my parents and working once again as a careers advisor in Leeds, commuting there everyday. He is a great support to my parents and a great Uncle Coconut to Marcus.

My Grandad, Marcus’s Great-Grandad, is still going strong and managing to live and care for himself alone down in Somerset, even though he is now 96 years old. My Mum and her brother, Uncle David, go down and stay as often as they can, for a few days at a time, to give support, company and lifts to places, as Sidney has at long-last given up driving (thank goodness) after an incident in a car-park where he hit a few cars! To help him decide whether a mobility scooter would help him, I lent him my 8 mph scooter, and it has enabled him to get out and about again, which was my aim, and he did end up buying it off me for a very good price (it was a bargain!). He didn’t have to pay anything but it was important to him that he actually owned it and it seems to be helping him (he can take the scooter out somewhere and then park it up, go for a short walk, and then come back to it, so I am pleased. It means he can stay active and the world is more accessible to him again. It was a bit of a disappointment to him at first, but only because it wasn’t a car and could never do the job of a car, but now it is proving it’s worth. As my Grandad is rather hard of hearing as well as in his 90’s, he lives a quiet life, quite detached from the world but he does ok!

As I write this latest blog I have come down with yet another cold. They make me weak, shaky and make life very hard indeed. I am very grateful for having such a good fella, such a good family and such good babysitters for Marcus, because there are times when I can barely look after myself, let alone him.

This Easter Sunday we went to my Dad’s church for an Easter breakfast and short-kiddies service. During the service Marcus had a fabulous time toddling around at the front, picking up daffodils and handing them to people. He then joined the pianist playing the piano!!! It was so sweet and so funny! We then went up to my parents house and Steve cooked us a delicious meal of salmon (lemon, garlic and ginger), basmati rice, potatoes and roast vegetables. Though I felt wiped out with this cold I had a lovely time.


Marcus sat at the piano at his Grandma and Grandad's house

I have recently been seeing a Chiropractor but don’t seem to have benefited a great deal from the kineseology and cranial therapy. However, I ill continue to seek therapies to help me. I saw another Chiropractor in the Florida Keys and he found that my spine does not curved back enough at the top, so my head rests too far forward putting my nervous system under stress. It is a common condition (Click Here for further information), but once corrected might help me further stabilise ms, so I use a neck collar twice daily (early morning and at night before bed) for 20 minutes, and a head weight belt for 10 minutes two or three times a day. Whether all this will benefit me at all remains to be seem, but I figure it is better off corrected than not. I leave no stone unturned in my journey back to health, remembering that the only failure is not doing your best. Right now boosting my immune system with zinc, vitamin C, GFSE and raw garlic are my priority because my low immunity is the main problem in the bigger picture. I’d prefer to fix this than live my life in fear of coming down with colds, though it might not do any harm to go easy on the baby groups for a little while! So I journey on with courage, onwards and upwards!

Posted by Sylvie on April 17, 2007 6:49 AM


Congratulations to you and Steve on your engagement! He has certainly been a strong, positive part of your life and the two of you have been through so much together. You are now blessed with a beautiful, happy son and an upcoming marriage.

I hope you are feeling better and would recommend that you try oregano oil or olive leaf extract to help strengthen the immune system. The success rate is phenomenal and it works very quickly to eliminate the source of illness. It also seems to work well with people with MS.

God bless and take care.

Dear Sylvie,
though thinking regularly about you, I only visit your website about once a year. However, whenever doing so (like today) you impress me so much and show me what life is all about.
Hope your health condition got better as the cold season has gone.
May god bless you and your family

Hello Sylvie,

As I am a MS-er for 11 years now I can tell you: You are a brave lady. Congratulations!

Now in you family is living somebody who will need your support of all kinds for decades.

So you must get rid of your MS (go to a permanent remission).

I am on permanent remission for over 10 years now and it is not so difficult.

On pages of my web site (kulvis.com) I am describing MS causes (triggers) and natural cures (not treatments).

Having a scientific mindset (PhD in physics) I appeal only to scientifically proven facts etc.

All best -

Czes Kulvis

I would just like to say how inspiring it is to read your story. You are a fighter and God has truly blessed you and your family. I wish you all the best for the future.

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