My Precious Tot’s. ……Always On My Mind, Forever In My Heart x


Everyday  , time is slipping through my fingers.  Each day I watch my tot’s leave from the view of my bedroom window.  They are each growing,  changing,  developing their own personalities,  of which I am not part of …..I am only able to see from afar.
My tot’s are my life,  yet I have nothing to give.  I can’t physically care  for them or take them out to do fun activities.
I watch them leave with their daddy,  whether it be going on a bike ride,  a trip to the park, a day at the beach,  or even share in the special times and success. 
I have lost out in almost five years of their life’s,  and it is literally crushing my heart.
Just imagine,  if you were me, your children you could see, hear from a distance,  but was no longer able to tickle them, twirl them to music, push them on a swing,  or build a sandcastle.  It is like being destroyed every single day of one’s life,  over and over again. 

This illness prevents me from being the mummy I used to be……how I loved being a mummy so much, I understood and experienced how precious life can be.

I was delighted when I found out the magical news, that I was going to become a mummy. I remember her making her entrance into this beautiful world far to early.  I was in the process of completing one of my socio legal papers. I started bleeding,  almost a month before Olivia-Beth’s due date.  It was a difficult and scary labour to say the least.  I was kept in hospital with my new precious princess for a week after delivery.  It appeared a placenta abruption occurred, putting both baby and myself at risk. I had to have a four unit blood transfusion,  and also suffered an epidural tap. However,  we battled on together,  with her daddy too of course.

Finally,  graduation from university,  we walked hand in hand together.

After my experience , having Olivia-Beth,  I didn’t think that I would anticipate having anymore children. However,  when my princess was almost three years old, jason and I yearned for a little brother or sister for Olivia-Beth,  and a beautiful new life to treasure and protect.  But things never seem to go to plan, fate always throwing a wicked curve ball, when one least expects it to.

We went through several years of heart ache……fertility problems arose.  Even when I did become pregnant,  I would lose our precious new life before 12 weeks. I remember so clearly losing our second baby,  seeing such a precious little soul on the monitor. …..hearing my screams,  begging not for this to happen again.

I had three consecutive miscarriages,  though out our years of despair.  Eventually, I was sent to ST Marys Hospital in London,  where they discovered that my blood had a tenancy to  become thicker and over clot,  due to my bodies reaction to pregnancy.  Just 150mg of Asprain daily was my hope of having a second child. By some twist of fate,  I fell pregnant with my second princess,  but my starting block wasn’t exactly relaxing.  Jason had been rushed to hospital with Pneumonia, my granddad was fighting Prostrate cancer. …..then my most horrendous nightmare. ….my precious Olivia-Beth was rushed to the burns unit,  whist I was at the hospital with her daddy.  This is a time in my life,  I never wish to experience again.

Thankfully,  by some miracle,  all the precious people in my life pulled through,  even the new life growing inside of me.
I continued to travel back and forth to London with jason,  checking on baby’s progress . After we made it through the first trimester,  I was handed over to the care of a hospital team closer to home.  They were absolutely amazing,  I have an album full of regular scan photos. A C – section was decided as the form of safest delivery for myself and baby.  The date was set, my team ready……but my little miracle had her own ideas.  Just like her big sister,  Mollie-Jai entered the world far earlier than expected . But by sheer amazement,  both Mollie-Jai and I were perfectly safe. The feeling is indescribable. … was pure elation,  relief and more importantly,  love. As I lay, staring into her dark pool eyes. ….it was like a perfect dream.

My family was completed. ……we were so happy,  a family full of love, togetherness and beautiful memories.

Then as we celebrated Mollie-Jai’s 1st birthday,  I found out that I was expecting our third baby. I felt utter disbelief and must have taken 10 tests to actually believe that this was true. I can’t remember a time in my life that I have ever been happier.  However,  jason and I had many scares throughout the pregnancy of trying to get our little baby son , brought into the world safely.  But the outcome was phenomenal. …….the safe arrival of our precious son Dylan.

Life simply could not get any better.
……I was living my fairy tale.  Three precious tot’s,  a beautiful husband,  my future career in sight.

Then onb7/6/09 I lost everything,  my life torn to pieces by Stiff Person Syndrome.
Jason had no choice but to become my full time carer and raise our tot’s alone.  I see them only through a pane of glass,  my body isn’t able to deal with the noise,  sudden movements,  cold touch of my tot’s hands

So the family I fought for,  the heart ache I experienced,  was all for nothing.  As I have been robbed of my precious tot’s,  due to this disease. ….it is so cruel.  Knowing that I have my three magical tot’s,  who are out of my reach. …..causes more pain , than not having them at all.

So I will continue to fight the “ghost” of Stiff Person Syndrome. ……and one day,  I will run across the sea front with my tot’s once more, laughing,  splashing water at each other. … my dream xxx

2 thoughts on “My Precious Tot’s. ……Always On My Mind, Forever In My Heart x

  1. Hi Nerri, i just want you to know ive also missed 5 years, my youngest doesnt remember me being well. I use to get them to show me what they were doing at school, tell me every detail as if i was there, hang on my dear, we all love you and hope for a better future for you soon, love you, ingrid /Ottawa 😷

    Liked by 1 person

    • Hey princess, i hope you are doing as well as can be expected. I think of you by day, pray for you by night.

      I worrying about sending you a PM as you are going through your harsher stages of treatment, but i try and stay up to date with your progress with sweet Sam.

      I feel like i am trapped ion a nightmare, i have no idea how to wake… know how horrendous it is 😦

      The simplest of things i miss in my life, priority being my tots. Their daddy took them out today to learn how to ride their bikes without stabilisers.. I led hear and sobbed because i wanted to share this special moment……instead all i have is a video recording.

      I know you have experienced the exact same pain with your tots as i have, and i pray with all my heart that you will not have to suffer this hurt for much longer.

      You and you family have a magical, beautiful future ahead of you, and i for one can not wait to share that time with you 🙂

      Thinking of you my dear sweet Ingrid
      sending fairy , gentle hugs
      Nerri xxx


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