Tuesday 3 May 2016

Struggles after diagnosis.

So in my head I have composed this several times. I however am one who can do that, create amazing works in my head but it never really transfers to paper, or screen that well.
But I also forget where I am going with things, go off on tangents and just all around talk too much... Which is why i usually vlog rather than blog. (I edit! lol)
So here I am, trying to not be utterly crap at this.

Edith diagnosis has thrown me.

Not because its awful, not because it changes her or how much I love her, it does not but because I spent so long reading up on autism.
I knew what might help, what had worked for others!  I knew what things I wanted to try, how to do them, what may happen, what help there was... All the way down to it being known! There is so much help and support for autism! Its amazing when you think about it. Hard too obviously but there is so much there, if you look. Locally there is an amazing group near me.
For a chromosomal deletion? Nothing. I don't even know if its known! How many others have it? Is she one of the first to be diagnosed with this? The other 2P deletions seem quite similar, so will she be? I need to read more but honestly, I'm scared. I don't know if want to know.
Then the whole differences, two children could have the same deletion but be completely different.

I did learn one thing! she is a SWAN! Syndrome Without A Name! Such a beautiful image and apparently many parents will have a swan tattoo or jewellery or scarf etc. Symbols of their love for their amazing little swan. And if its named they get to be an graduate swan! A friend sent me a link to a lovely article or blog... Not sure but ill pop the link in below if i can find it.

I have so much new stuff to learn. So much I don't know. And its scary.
What if i get all caught up in some of the more heartbreaking or worrisome stuff and she ends up being fine. Not because thats bad, that'd be great! But because I'll have wasted all this energy on being a basket case. Then I'm scared to have hope, in the way of it possibly being a delusion. Can I stand to get my hopes up, let my heart be full and optimistic? When it could so easily be crushed? Am I deluding myself in thinking she's come so far that surely she can't end up being mentally 9-12 or whatever? She will be fine right?

Then I think... How? How can this perfect, beautiful, wonderful and amazing little girl be
chromosomal abnormal? 'Wrong' on a genetic level? I just can't see it. I see the most amazing little girl named Edith that I've ever know.
This beautiful little girl would have been a discarded embryo if we'd done IVF. How many little Ediths have been tossed because they show abnormalities when screened?
And at the same time I completely see why people would! If you have ever done IVF you know how very hard it is. How much it costs and not just monetarily. You want the best possible chance so you will do whatever it takes, so of course you'd agree with the Drs to discard any imperfect blasts. But an imperfect blast turned into my amazing daughter! Though she was not an IVF baby, she was conceived naturally. An amazing surprise. I have undergone 3 rounds of IVF but as a surrogate. So I don't truly get the heartbreak of infertility and all that. Which is why I don't judge anyone else for the choices they made. I may well have made them too. Which is probably what leaves me struggling.

I do know that no matter what she will be loved. By me, she will be loved fully and completely every second of everyday of forever. Nothing can change that.
But will she be happy? Will I still be able to make her whole face light up? Her heart sing? Will she want to get married and have children? Will she want to be a successful business woman? Will I have ro explain to my then 20 year old daughter that she can't? She isn't safe rot have a child? That she'd not be allowed? Because if she is 9 mentally she cant! And I will be the wicked witch who destroys her dreams because at 9 they think they are grown up. She will focus on her real age and not what she's thought to be. And maybe she will be right? Who am I to decide how she is really?
Id help if she wanted a child! If I could. If it was sensible and possible but what if its not? And I know it but she does not? Do I become the destroyer of dreams when she truly won't understand.
And i know this is so far off and may never be an issue so why am I thinking about it? Why am i allowing myself to get upset? I truly do not know. I just know that I can't not. I want to know everything now so I know exactly what to do. Exactly what will help.
Be perfect! But I cannot, and that sucks.


Saturday 27 June 2015

Our lost cat returns!

So on Alice's birthday, we saw Hermione a couple times but after that there was no sign for 2 weeks.
I called around all the vets, the RSPCA, even the local highway maintenance incase she'd been road kill.
It was awful. I know some say that she's 'just a cat' but here, in their house, they are family members and much loved.
We walked the local area, asked people to check garages. I didn't want to do posters as last time my cat went missing (ok this was 11 years ago now) whilst I was putting out posters a woman told me she's seen my poor Seamus dead. He'd been hit by a car. I'm still heartbroken all these years later. My poor baby. He was so badly abused that he had brain damage. We rescued him and his brother from cats protection. They were called Ronnie and Reggie but no one knew who was who and they didn't respond to their names anyway so we renamed them Seamus (Shay-Mus) and Sirius (Ser-I-Us). I didn't want to temp fate so I didn't do posters. I realise that's a really idiotic way to think but shhhh. I'm a moron...
Anyway after 2 weeks I woke at 3am to loud meows. Sat bolt upright in bed, looked at my get and there was Sirius fast asleep. I knew our baby was home! I squealed rather loudly 'HERMIONES HOME!' Waking (and probably scaring the crap out of) Darren. Hahaha. Bless him.
She was so so skinny, still is. Covered in ticks and scratches. Somehow I don't think she was being fed by anyone else and I doubt she was locked away anywhere (due to the ticks) so assuming she want for a wander along the canal or in the woods etc and got well and truly lost.
Plonker.
I am so so glad she's home. So there I was, up at 3am, feeding her. Then checking her over. No damage to her nails so I don't believe she's been hit by a car (they automatically try and cling on so their claws get ruined) thankfully. So I removed all the ticks and gave her a lot of affection.
She's very loving atm. Will be going to the vets for a check up next week to be safe.
Just plan to fatten her up and watch all the scabs on her heal.
I'm hoping, beyond hope, that she has decided not to go wandering off like that again.
Poor Alice was devastated too. But so pleased she's back. Daddy even woke her at 3am to show her Hermione so she knew. Lol. She went back to sleep with a smile on her face.
I'll add photos when I'm on the laptop if I can work out how. Lol. I suck.

Anyway, I hope I've not bored you completely with my pointless tale of the idiot cat who wandered off.

Friday 29 May 2015

Weekend without the kids.

So my babies have gone of to the caravan with my parents for a mini holiday.
I feel a bit lost. No idea what we are going to do. Maybe paint.
Darrens full of cold so some plans are out the window.

But I hope I can sleep a full night. Wake up later than 6am.
I can't think past painting.
There is more but I can't think.

Monday 4 May 2015

All about Edith! ASD & SPD?!!

I really must ring up and book Edith next appointment with the paediatrician.
This could be the appointment where we properly start to officially diagnose her with ASD (Autistic spectrum disorder) and SPD (Sensory Processing Disorder).

She getting so so much better with talking but is still at the same sort of level Alice was at 18 months and George at 2. Her understanding is still limited as well but getting better.
She is the most amazing, happy, wonderful person named Edith that has ever existed.
I am so lucky.

And yes of course it's hard. She gets frustrated and hits out, or worse hits herself.
She closes down and shuts off when things get too much, or screams, utterly hysterical and so distraught. It hurts my very soul. But we do all we can to keep her happy and full of joy. The problem being is we have accidentally started to create a monster. Lol she does need to realise that she can't always have exactly what she wants when she wants it.
The hardest part sometimes is working out a temper tantrum over a meltdown.
One she chooses to throw to get what she wants and one she cannot control and is her inability to cope in a situation.
We are getting there but she really is smart and knows how to play. Haha. I am so proud.
She's literally just said 'well done Alice! Hooray!' 4 words! FOUR WORDS! All by herself. My heart could explode. For a while we wondered if she would ever talk or if she'd not. Many autistic children do not communicate verbally so it was hard to think she may never talk, may never again say 'love you mummy' but she does. Well she calls me ninny or nanny more than mummy but we are working on it!
She's in weekly speech therapy and bi weekly portage until she starts school.
I'm terrified of her going to school. She will not know what is going on. She won't understand and will need a lot of help but we've been told she won't get statmented as Hampshire has reached their quota. Though I have a feeling the school will be fighting with all their might soon enough. it' s not hard to see that she will not learn a thing as it stands.
We choose not to put her into a special needs school and were also advices not to just yet. Because she could well excel with her language soon and a special needs school would inhibit her if she has a chance to catch up. I know she might not and although I can't say I accept that yet, I do know it's a reality. But I will never give up on her. Ever. She's my gem. My happy thought.
I am still scared I'm screwing it all up but I guess we all think that. It's just slightly was scary with average children. Or is for me anyway.
But that's Edith, for now.
I will update as times passes and things happen. And I pray it's all positive and good and stuff. Lol

So, I failed. Again

I never manage to keep up with blogs.
The main issue being that I start to write but get distracted and then it's 3 weeks later and what is written is irrelevant.
I've got about 6 unfinished and unpublished posts.
I guess the main problem is that blogging take much more brain action that vlogging. I talk and then sometimes I edit but usually I don't and that it!
With this is harder to make sure I make sense. Lol

So I will endeavour to gat back at it and not be so pants.

I'm 12 weeks pregnant, well 12+3. It's going so fast.
I'm tired and a bit sick but over all really good.

The best thing in this moment is Edith's on the trampoline and she is so happy she is singing and shouting. I am hoping the neighbours find it as cute as I do and aren't getting annoyed. Ha.
George and Alice are sucking up by vacuuming and tidying so they can earn x box time. It's already has a sort of gravitational pull for them. I'm not pleased about this!
I am that mean mum though who won't let them play certain games. They are allowed parent controlled minecraft (no monsters) and Disney infinity (both types). For now that is everything then want and makes them happy when they are allowed to play (1 hour a day on weekends).

I never really know what to write. I'm not interesting enough to really have a subject worth going over. It's more like a diary of my irratic thoughts which I doubt would entertain anyone else. And probably not even me in 10 years time... Or maybe it will.

Thursday 21 August 2014

For those who wander the world of written words...

And not YouTube.

I mainly vlog on YouTube as a surrogate, mother, unbalanced individual and Brit.
I make little sense to myself and apparently amuse others possibly sometimes at my own expense but I'm not overly vain so I can deal with that.

Last year I was a surrogate and had a rather cute little boy (even if I do say so myself).

So the basics... I was a traditional surrogate, this means I used my own eggs. So yes, he is genetically linked to myself but no I do no view him as 'mine'.
I personally feel being a parent is about actually being a parent and not some genetic link. If the poor boy falls over in the playground and grazes his knee, it would not be me he would run to for comfort and magic kisses, it would be his parents.

We did at home inseminations (I won't lie, they are a bit gross but sometimes we do gross things as they are more than worth it) and so it cost very little but was extremely efficient.
We all had all the tests done before embarking in the journey. We are not fools.
None of us were riddled with diseases, mentally unstable or criminally minded. We did not have a lawyer (that is illegal in England... Stupid I know) but he is now fully and legally his parents son.

The pregnancy was pretty straight forward. I moaned very little regardless of what my husband says. I was awesome (shut up Darren!) and he came, at home in a birthing pool at 1:22am. He weighed (I think) 7lbs and 3.5 oz... I could be wrong. I forget. (I do know my own children's weights) all the info (including me in labour) is on YouTube under Lumdeedums, so feel free to have a nose if you so feel inclined.

He went home that day with his daddies and all is good. We still see them and it's his first birthday in under 2 weeks (OMG!) and we will be at his party. He's a damn good looking wee thing! Hahahaha
I'll see if my IPs let me share a photo.

I'm now on a second journey as a surrogate but this time I'm being a Gestational Surrogate. This means I am having (or had as we did a round previously that sadly did not stick properly) a blast that is fully and completely my IPs, created via IVF, places into my uterus. Ivf is such a stress. I cannot even begin to explain what a head fluff it is! Lol
Really hoping this baby sticks. My IPs are amazing. They are a man a woman this time as well so the total opposite of my first go.
They also have an adorable little girl who's a bit you get than my youngest.
So my first set of IPs were same sex couple who had no children and we did TS.
This time is a hetero couple who have a child and we are doing GS.
I plan to document the whole journey as long as it's possible to do so. I may even ask if I can film or take pics during scans or  transfer.

Surrogacy wise I can't think of anything else to add to this essay.
I will probably do vlogs about my family life as well.
The basics in that are.....
I meet my husband at 13, we got together when I was 15.
Engaged at 18 and married at 21.
At 23 I had out son, George. He is now 8.
16 months later I had our daughter Alice who is now 7.
After a failed journey as a surrogate (missed miscarriage at 11 weeks and a small op) I fell pregnant with our youngest, Edith's. She's just turned 3 and suspected autistic. She is awesome! She doesn't talk much but she smiles and giggles a lot.  She's currently on my back and has in in a strangle hold......

So I'm going to get off and chase her around the house a bit before baking cupcakes and cleaning out the animals (don't panic, we will wash our hands between the various activities!)

Have a good day/evening/night.

New blog! Which I will probably neglect...

I had a blog before, 2 actually. One I cannot find and one that was attached to the wrong email address so I couldn't connect the two. My excuse is I set it up when pregnant...
So as I will be starting round 2 of IVF, I thought I might see if I can blog as well as vlog...
I will probably forget as it's far easier to talk than write. But for the times I want to just share photos or hide my face (I've started the pill to try and get in a cycle pattern etc and my face broke out. Tragic....) I can update on here.
Winning all the prizes!
So here it begins!