Time is so short and fast

So in my last update I had reconnected with my mum who was going through chemotherapy, lost my triplets, Rebecca had started secondary school and Tiegan college.

So much has happened since then, I separated from my husband for 8 months, Tiegan started her childcare course and then was rejected for her second year so is now doing a level 3 apprenticeship in childcare and has been doing week she’s already got a guaranteed permanent job at the nursery where she’s working after she finishes her apprenticeship.

I have taken all the children out of school to home educate them which we are all really enjoying and feel as though we are living life instead of just existing day to day.

I also have some amazing news, just after me and Barry got back together,I fell almost immediately pregnant and after losing 6 babies together we finally have a beautiful baby boy.

It was a rough pregnancy as I had a major heart attack in the November before I fell pregnant as well as a stroke in the February.  Since having him I’ve also suffered heart failure and a minor heart attack.  I am now struggling with many health issues including bone pain throughout my body.  This is being investigated but is suspected neuropathy or rheumatoid arthritis.

I have had to rely a lot on friends and family for help lately.  I have also reconnected with my brother and despite the past, this is going well.   I have had to spend a lot of time using mindfulness to make this possible and it hasn’t been easy.  I have had many demons to battle have felt very raw with a lot of triggers.

I hope my efforts will be worthwhile as I have yearned for a family I did not have for a long time.  Sadly mum died in the January after I reconnected but I have built a strong relationship with my stepdad since.

Unfortunately things with my dad went downhill and we are no longer on talking terms, I am handling this as well as I can however and have managed for the most part to maintain stability.  

Things with my husband are up and down although certainly improving.  I do fear that I will never be able to maintain a normal or at least stable relationship with a man.  I can’t really expand on that as even the thought of the subject upsets me so much.

I really feel I need to repeat dbt therapy and have a strong desire to do so, whether that will happen is to be seen.

I have made some strong friendships through therapy and particularly significant are Hayley and Ann who I feel are very much my chosen family.

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Poem for the loss of triplets

For The Loss Of Triplets

Silently we sat beneath the nurses gaze,
as news of expectancy was given on that day,
eyes glanced at the nurse and back to one another,
a precious life created from our love for each other.
The weeks passed by in anxious anticipation
appointments, tests, scans all repetition,
reminders of our losses that came before you
filled us with fear that we’d lose you too
But in amongst the fear of all we had to lose
was hopes and dreams and names we began to choose
and then we heard about a miracle inside me
two sacs, possible twins, a multiple pregnancy!
And so home we came in awe of what we’d heard
afraid to share this awesome news, afraid to spread the word
because if losing one was scary, the thought of losing two was worse
and so I searched for information, so my fear, it would disperse
And again, our minds raced with hopes and dreams
of juggling our twins and all their joint schemes
as stories abounded of little ones
who share their mothers wombs
We scoured the internet and of course ebay
for double pushchairs, cots and things for play
and if we’d been shocked by twins at all
discovering triplets left us speechless I recall
And oh my we did believe that we were truly blessed
three babes alive inside this body would surely be a test
but visualised we did of the day you would be here
to share our lives and love and happiness and cheer
We talked about the day trips that we could have
all nine of us in the car following instructions on the sat nav
two adults in the front, six children in the back
or maybe we could put some on the roof rack!
Yes we joked how little room our seven seat MPV had
and talked about how a bigger car wouldn’t be so bad
We pictured building sandcastles on a sunny beach
and paddling in the shallows making sure you were in reach
we dreamt of many things throughout the pregnancy
and if only we had the chance I know we’d come to see
all those dreams fulfilled and more and more besides
of play and school, and daddy’s piggy back rides
but we’ll never know all the things that you’d enjoy
because before we held you in our arms or bought one single toy
we heard the dreaded words and knew you’d gone away
to some far off place instead of home to play
The hurt we felt deep in our hearts and tears we cried
but we’d done all we could and everything we tried
we may have only known you for a short while
but you were here, with purpose, for you did make us smile
And more than anything I know, our love for you is strong
not beaten down by death, nor time no matter how long
we’ll meet you one day, kiss sweet baby lips, smell your precious hair
I’ll hold you in my arms as close as I can and stroke your skin so fair
I’ll listen to all your stories of life in some other distant realm
of flying on the backs of birds and other things that could overwhelm
like fairies and pixies and other magical things where you reside
and still you’ll say, you were all, both here and there, both places you abide
Because our love was strong enough to keep our bond alive
so much love we have for you, that surely you will thrive
and then once again we’ll meet and I will hold your hands
when I come to find you over rainbows, in faraway lands
And until that day, we stand here by your grave
in our sorrow and our grief with trinkets that we save
and hold you in our memories as we try to say goodbye
but we’ll be back tomorrow, for this is where you lie.

An Update On Family Life

Since last posting I have split with my ex and married my current husband Barry.  My children are now 16, 12, 6 and 3 (next week).  

My eldest is now in college doing a floristry course after losing her job as a apprentice hairdresser and is hoping to do childcare next year so she can become a child play specialist in a hospital environment.  

My 12 year old is now in secondary school where she has settled well, she is described as a key girl in her class and a good leader.  She is achieving well academically and above average in most subjects.

My 6 year old is doing well in school too and also has made lots of good friends.She’s frequently invited to parties and really enjoys all her subjects and comes home excited about school.

I started talking to my mum in June after not talking to her in nearly 6 years, and just as I felt things were improving, she was diagnosed with Acute Myeloid Leukemia.  She’s undergoing Chemotherapy and will be in hospital over Christmas so we’ll be having an early Christmas with her this weekend whilst she’s out for a few days.  It will be my daughters 3rd birthday next Wednesday too.

My youngest is having surgery tomorrow to have grommets inserted, I’m extremely nervous after all our bad luck lately but it’s minor surgery and all should be fine.

Since last writing, I’ve lost 4 more babies, triplets in May – Jasper, Harry and Frøja and Pea-Bee in October.  The triplets were buried in front of Poppy and the council were wonderful and donated a plot free of charge so that we’d have somewhere to put our picnic blanket near my babies and spend time with them.

I’ve been diagnosed with Left Ventricular Diastolic Dysfunction, Right Ventricular Abnormalities, Enlarged Left Atrium, suspected SVT and have another Echo-cardiogram next week following a CT scan and 24 hour ecg tape that I’ve not yet had results for.  I have also been diagnosed with gall bladder stones after suffering Cholestitus and have to have surgery to remove my gall bladder.  I continue to have ongoing back and pelvis/hip pain and worse so since falling down the stairs at the weekend.

I’ve spent a lot of time doing arts and crafts, including making memory boxes for the local emergency gynecology unit and have a regular supply of shoe boxes to make these with from another lady that is a trustee at Daddys With Angels where myself and my husband are also trustees.

I gave up my group Snowdrop Babies but continue to do things for the group, my friend Gemma now runs the group and continues to support grieving families who have lost a baby or child of any gestation or age.

I also held a family fun day to raise money for Northampton Special Care Baby Unit and raised £400 and continue to run the website for it.  

I’m now currently in DBT therapy with individual therapy once a week and group therapy once a week as well as homework and phone support in between therapy days.  I really like my therapist and the other group facilitator as well as having a friend I already knew who attends making it a little easier for me with regards to my social anxiety.

This week I set myself homework to recognise and let go of judgement although that hadn’t been the initial homework I set myself but a more achievable target.

Why me? Mental Illness

I’m sure this is a question most people with any illness,  disability or problem in life asks themselves.  Often the question will go unanswered and the questioner lives with confusion, frustration and a sense of unfairness.   Many issues over time will be resolved or simply pass.   A common phrase is that all things pass.   But some problems are life long and can’t be fixed.   In those circumstances some kind of acceptance is necessary. Acceptance of your problems,  acceptance of your limits and acceptance that you must forge your own version of ‘normal’

I’ve suffered from mental illness most of my adult life and am still attempting to find acceptance.  At times I feel as though I have found it but then it quickly slips away.  Acceptance feels like trying to catch a slippery eel with my bare hands.  Success being only short-lived.

I wish the answer to why acceptance is so difficult was a simple subject but instead it is complex.  There are lots of reasons that is hard to hold on to.   One reason is that when mentally unwell all rationality flies out of the window and so all the reasoning behind my recently acquired acceptance becomes quickly invalid.  And partly because it’s near impossible to accept and welcome intolerable mental and emotional pain in to your life when it’s present in that same moment!

Imagine for a moment feeling as though electricity is running through your veins or worms crawling through your brain.  Imagine feeling as though your skin is covered in cobwebs and the noise in your brain is so loud that it overwhelms your senses.  Imagine feeling that you are covered in thick dirty slime just under your skin and that the only way to get rid of all the dirt and noise and putrid feelings inside is to bathe in boiling water and scrub yourself clean with a scourer and bleach or to cut it away.   How do you learn to live with that?  How do you learn to accept?

Then imagine that no one knows how to help you and that most people turn away repulsed by even the mention of ‘mental illness’.  Try to remember that having mental illness often makes a person find socialising difficult anyway.   It’s hard enough trying to maintain your own self care and daily routines without the pressures of trying to communicate efficiently,  hold small chat,  enquire about how others are keeping;  show care and concern,  try to maintain etiquette and boundaries.   Socialising becomes a juggling act with knives.  The pressure to fit in or face rejection,  disappointment and judgement and in turn more hurt.  Remember also that often a person with mental illness may already feel emotionally overwhelmed and hyper sensitive and so even a small slight or joke attack their expense could be internalised and increase a feeling of shame, self hatred,  sense of unworthiness.   Take in to account also that many diagnosis often come hand in hand with anxiety related issues that also aggravate the difficulties in social situations.   Sometimes the person can be over sensitive to sensory stimulation too – lights,  movement, noise etc..

I think taking all these factors in to consideration and more besides,  you might theorise that such a fragile and vulnerable person might need a good support system around them?   But what if now we factor in the stigma of mental illness?   What if most people feel fear, repulsion or helplessness about mental illness?   They don’t wish to approach a person with mental illness or be around them or spend any significant time with them and the few who do feel uncomfortable discussing mental illness,  don’t want to ask how you are,  don’t want to offer help because it’s too big for them to deal with.

Now imagine again that horrid feeling when you’re unwell,  add the shame and guilt, add the stigma you face from others and the difficult to think rationally and ask yourself how you accept this life?  How do you function each day?  Who can you ask for help?   How and what words can you use to ask for help and describe what you need?  How do you maintain relationships?

Now lastly do not ever think that mental illness is simple,  that a person can just think their way out of it,  think positive,  distract and it all goes away,  or that this post even comes close to describing its nature.  This post is a mere snippet of insight into living with mental illness.   It’s far too complex for me to put in one post and would take a lifetime to explain fully.

E-Harmony Personality Profile

More

What I have been doing since I lost Poppy

Well since I lost Poppy I have been working really hard to keep on top of my life and get back on track.  I am determined to remain as positive as I can and although I have bad days, I am trying to appreciate the good ones more and more.  Losing Poppy has taught me how valuable life is, how valuable our time is and how valuable my other children are.  I feel it imperative to appreciate every single moment with my other four living children.  We have already had 2 birthdays since Poppy died just 8 weeks ago and with Christmas fast approaching too. More

Poppy’s Funeral 12th Oct 2011

We were picked up at 10:30 am by the following car, with Poppy in front in a one off car made for the funeral directors from a London Black Cab.  Her flowers were beautiful.  We drove to the chapel where our guests were waiting for us outside and just as the Celebrant arrived.  We were early as the traffic had been kind to us, so I took the time to take some pictures of Poppy in the car with all her flowers.  The guests were then ushered inside to Joe McElderry’s version of Over the Rainbow. More

My lost daughter, forever in my heart

On Thursday the 8th of September 2011 at 6pm, at only 19+3 weeks pregnant, my waters broke at home.  Scared I called the hospital who told me to come straight in.  I phoned my Doula who arrived within half an hour to take me to hospital where I was examined to confirm that it was in fact amniotic fluid.  I was transferred up to the maternity unit where I was seen by the on duty registrar to explain the situation to me. More

My late Special Saturday post = Greatest Achievements

My daughters greatest achievements are that she is developing normally according to all the health visitors standards, against the fact doctors told me she would be brain damaged and have delayed development and just this last week has begun to crawl even though her physiotherapist said that she would be unlikely to crawl and instead would bum shuffle and then walk, they said also that she wouldn’t walk till she was about 2 years old, so lets wait and see if she stuns us all again.  She is also eating wonderfully and now only has a problem with fluids.

My post for special Saturday last week. The same but different.

So my special needs child is now 8 months old and a lot has changed in our life as a family. Many things are just the same, we eat together, play together, laugh together. The main thing that has changed is having to plan for everything. If we want to go anywhere we need to know there is somewhere we can put a tube in if it comes out, somewhere suitable for tube feeding and we have to pack bags galore! More

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