Wednesday, July 27, 2011

Holidays












Endless skies and summer sun in Northumberland in a home away from home rented through Country Retreats.  The girls blossomed with days with mummy and daddy, laughing and frolicking, picnicking and just generally taking life easy and slowly.  Much fun was had and it was beautiful to be able to spend some quality time as a family.




In awe of the Grand Cascade we stand mesmerised as if it was our first visit; Niamh runs freely through the hawthorn; hiding and chasing in the bamboo labyrinth; smelling the fragrant roses, touching their delicate petals, capturing their beauty in a photograph; water sculptures wet our appetite before squealing with joy in the fountains of Serpent Garden,





Meeting the present with hugs and hellos,chocolates and whizzy wheels, our present seen as if mirrored before us as we met another little SMArty and her wonderful family for the day.

Windswept beaches with our kite flying high and free above us, a rainbow canopy against a cloudy sky; sand between our toes; and mermaids and castles on the beach.




Craft time with butterflies and a sprinkle of fairy dust; nails touched by varnish; leisurely breakfast with friends and Nutella; and all ends deliriously well.

Time for home: with a little sadness but much gladness as memories fill me with joy and photos capture perfect moments to be treasured.


And finally, to my girls, oh my beautiful girls; you are growing up and changing before my very eyes...  I love you with all my heart - thank you for my holidays...












Monday, July 25, 2011

Silence





This silence makes me feel uncomfortable;
I feel forgotten.
Then
I found this quote;
Perhaps
It's true?






"when there are no words...
know that the silences are carrying the
thoughts and prayers of all who love you"

dawn dais





Saturday, July 23, 2011

"Have a nice day!"

We certainly have today.

The sun was shining, the skies were blue
And Eilidh was totally independent in her snapdragon!

Yes, totally independent!


What an amazing day!

We are so very, very proud of her;

Eilidh, you r.o.c.k.e.d the Snappie today!



Tuesday, July 19, 2011

Dr Knickerboker





Dear Dr Knickerboker is coming for lunch today.

I love her to bits!


But why her nickname?

We used to dance at Rhythm Time to Dr Knickerboker and the tune still makes me smile; just as she continues to bring smiles to my life.  I am so very  grateful that she has been supporting us all through the last year.

So here's to Dr Knickerboker...


Hip hip hooray!


oh, and i'm so looking forward to seeing you and your litle ones today...

Monday, July 18, 2011

Cuddles

a cute start to the week, don't you think...


"there is nothing in this world that i love more than cuddling you, eilidh and your mummy"


daddy d to n



... and he is so right! There is nothing so gentle and beautiful, so mindful and restorative than a cuddle with a loved one: it centres your life and your world in an instant; it fills your beating heart full of abundant love; it's a moment to truly revel in and treasure...




d and e @ alnwick gardens









Sunday, July 17, 2011

The Perfect Today






"Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. One day I shall dig my nails into the earth, or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky and want, more than all in the world, your return."


Mary Jean Iron





Thursday, July 14, 2011

PGD




Continuing on from here, we are suitable for PGD or pre-implantation genetic diagnosis as we have a 1 in 4 chance of having a child with a specific genetic or chromosome disorder. That is to say, IF we decide to go on and try for another baby we have a 25% chance that that baby will have SMA.


 

a 3 day old embryo


 
PGD involves IVF and the use of assisted reproductive technology to obtain and fertilise a number of eggs. Once fertilised, the embryos develop for three days and then one or two cells are removed from each embryo. The genetic material within each cell is then tested for, in our case the SMA "abnormality". Then, fingers crossed, an unaffected embryo would be transferred back into the uterus to hopefully (and there has to be a lot of hope!) implant and grow into a normal and healthy pregnancy. The bouncing baby born as a result should not be affected by SMA - but it could be a carrier.

PGD is a lengthy and complex process. It is also costly at approximately £8000 per cycle. The Glasgow Centre for Reproductive Medicine is beginning to offer this service but by far the most "experienced" unit is Guy's and St Thomas' in London.  If you would like more information on Guy's & St Thomas' or on PGD please follow the link to Guys & St Thomas' PGD Page.  A PDF can be downloaded here .

For a more personal story of PGD I would highly recommend Shona's heartfelt and honest blog "A PGD Blog".  Shona has myotonic dystrophy and her blog follows her story through IVF and PGD to conceive Dexter and she is currently pregnant again. 

Here's a quote from her blog:

"The purpose of my blog, first and foremost is to help raise awareness of PGD so that other people may benefit.  I also want people doing IVF on its own or IVF with PGD to be able to read about someone else’s experiences, including the many hospital appointments.  Hopefully this will help relieve some of the anxiety that one feels, when entering into the unknown."


So we have options, options, options... but first we need to decide the fundamentals - should we add to our beautiful family of 4?




Wednesday, July 13, 2011

"Oh, I do like to be beside the seaside..."




Time spent with family is precious, even more so when they travel from the corners of the world to see you.  Last week, on a glorious summer's day, we spent time on our favourite beach, Ravensheugh (between North Berwick and Dunbar), with miles of golden sand and stunning views of the Bass Rock.  We picnic'd and built sandcastles, we went for afternoon tea and delicious (and we would all agree!) brownies at the Tyninghame Smithy, and we laughed and giggled as we always do. It felt as if we had never been apart...

I always feel more alive at the beach and, in a way closer to God, too: so to be there with my loves ones was absolutely divine!  Moments to treasure...  I think that I am more me than at any other time when I am at the beach or by the sea or emmersed amongst the waves.  I'm glad that we are off to Northumberland now... more time being me by the sea... but without so many of my loved ones this time.




ravensheugh beach







Monday, July 11, 2011

Options



A fair few months ago I wrote about being broody and about us waiting for our own genetic results - which were, of course (and yet surprisingly) positive.  David and I both carry the SMA gene and therefore we have a 1 in 4 chance of having a baby with SMA.

Ok, no surprises but the appointment with Dr DNA was informative.  Mostly we considered the options should we be thinking about having another child.  So. while our heads are buzzing and mulling over having another baby, now seems like quite an apt time to tell you about our options.









So here our OUR options - as I see them...




Option A:

We can conceive in the good old fashioned way (with lots of practice I hope!) and let nature take it's course knowing that there is a 25% chance that the baby conceived will have SMA. 

We would then need to make a decision as to whether we would like find out if the bambino has SMA.  To do this we can undertake a procedure known as chorionic villus sampling (CVS) between week 11 and 13, or have an amniocentesis after 15 weeks.  Both tests are invasive and carry the small risk (1%) of miscarriage.

But, and it's a big BUT, we must consider in this option what we would do if the baby was found to have SMA...  This will not be considered here; we all make our own decisions, well calculated and considered, and most definitely in private...


Option B:

Dr DNA - "there is the option of egg or sperm donation?"
everhopefulmummy - "oh, I don't have the energy to sleep around!"


Egg and Sperm donation? I had never even considered it... A child that isn't genetically ours but is SMA free?  A child who isn't genetically related to their sisters?  We weren't so sure about this and - please understand that I am in no way demeaning the process - we just don't think that it would be for us.  However, approximately 800 babies are born in the UK each year from donated eggs, sperm and embryos so it is a valuable option for many.  For more information please take a look at ivf-infertility.com


Option C:

IVF and Pre-implantation Genetic Diagnosis (PGD) or embryo screening.  SMA can be screened for before the embryo is implanted in the uterus to, fingers crossed, progress into a healthy pregnancy. 

However, it may be an option BUT as we have a "normal child", that is to say Niamh, we are not eligible  for IVF and PGD on the NHS! We were totally shocked to hear this - how unfair and unjust!  It felt as if we were being punished for having a normal child, never mind one who is wheelchair dependent because of SMA.  So, if we decide to go down the route of IVF it will be funded privately, at great expense and emotional cost.
I've written a wee bit more about PGD in an post later this week so I won't consider it fully here, but please take heed, PGD is an ethically charged procedure.  I will not be discussing the ethics here on this blog.


So my head is buzzing, D's is whirring  - so much to think about, so much to consider when we think about baby 3.  In the end though we will make the right decision - it can only ever be the right decision for all of us...

Saturday, July 09, 2011

Babies Abundant

boo (niamh) @ 16 weeks in 2006



There are pregnancies galore and babies abundant: hope is evident everywhere.  I am full of joy for each radiant possibility and every bouncing bundle born but, I have to admitI'm jealous, too.  Their lives continue on, expectantly and joyfully with hope for future's colourful and dream worthy.  In comparison our lives, no, my life feels stagnant and hopeless despite my hardest, bestest efforts.

I wonder about our future and another baby - boo trois.  It struck me today that the gift of a healthy child will in no way ever take this pain that I feel away.  Another baby will not make my heart whole again, neither will it complete me, nor will it reseal our bubble which popped a year ago.

Some may think "what an earth are you thinking?", others "i completely understand where you are coming from...".  It really doesn't matter what others think.  Sometimes I find myself thinking "How can we even be thinking about bringing another child into our life, into our discombobulated every day existence?".  In the end, however,  it's our decision to make and we need to talk it over, discussing the impact another baby, another child will have on our lives, on us and on the girls.   There are so many pros and cons to consider: for the moment, however, I am content to gaze upon life anew from a distance - as long as the cuddles and kisses are free and plentiful.



Friday, July 08, 2011

Family



Family can be wonderful during the good times and the fun moments.  Family can be amazing during sad moments and difficult times, too.  Family can be loving, caring and supportive; equally they can be irritating, bossy and nosey.  Families, just like the individuals within them, are unique.


Within my family we are all different and unique - thank goodness!  We live and love differently.  We communicate and express ourselves differently.  Some may say that their glass is half empty while others would see theirs as being half full.  And yet, differences aside, we are who we are, bound together by the bond that is family.


My family is really no different from any other family.  I know them.  I know who to trust and who I can depend on wholeheartedly and faithfully.  I know who will stand in the wings, keeping a watchful eye upon us and I know there are some who are far removed from our day to day lives. 


I know who I can depend upon wholeheartedly & faithfullyI have needed them over the past 12 months or so...







I have been surrounded by family this week.  We have come together from the corners of the globe and celebrated new homes, engagements, marriage and pregnancies; it's been quite a wonderful and magical time.  


It's been such a happy time: I have spent time with those I depend upon wholeheartedly and faithfully and they have not let me down.  We haven't dwelled on the "times of test" but I have felt their love which has carried me high.  I just wish that they were here, not so far away, every day, and that has meant that this time has also been tinged with sadness.


As our time together came to an end, I didn't want to say goodbye - I wanted our goodbye hugs to last forever.  ("please don't let me go - if you do i think that i might break into thousands of pieces - please don't let that happen...")  I don't want them to leave; I don't want them to leave me...  You see, I need them.  I need their love and strength, their caring hearts and gentle hands.  I need them close to me, to my children, to my family, but I cannot ask them to stay.  They have their own lives to live and I don't want to burden them.  I don't want them to worry more than they already do.  It comes down to this:  they cannot make "this" disappear, they cannot change genetics and they cannot cure Eilidh.  No one can and I'm sure that they know that too.  But life goes on...  Life is to be lived and I know that they will be back one day - soon I hope - and I will feel their gentle love close by again.  In the meantime, we'll continue to be a family, supporting each other through the ups and downs of life, because that is what Family is all about, wherever we are in the world.

Thursday, July 07, 2011

Learning, learning, learning...

 



@ keep calm gallery

 

"After a While"



After a while you learn
the subtle difference between
holding a hand and chaining a soul
and you learn
that love doesn't mean leaning
and company doesn't always mean security.
And you begin to learn
that kisses aren't contracts
and presents aren't promises
and you begin to accept your defeats
with your head up and your eyes ahead
with the grace of woman, not the grief of a child
and you learn
to build all your roads on today
because tomorrow's ground is
too uncertain for plans
and futures have a way of falling down
in mid-flight.
After a while you learn
that even sunshine burns
if you get too much
so you plant your own garden
and decorate your own soul
instead of waiting for someone
to bring you flowers.
And you learn that you really can endure
you really are strong
you really do have worth
and you learn
and you learn
with every goodbye, you learn...



Veronica A. Shoffstall




Friday, July 01, 2011

One!






Touch & Tickle is 1!

It all started here...

I don't know where the year has gone!

I'm still not very sure about where I'm heading but I'm happy(ish) on the journey.

There are ups and downs, good days, bad days and horrific days, but I'm living and I'm mindful and I'm grateful for the life that we have.

So... this is Touch & Tickle, this is SMA and this is our journey.

Thank you for sharing it with me.





via pinterest