Saturday, 31 August 2013

Is it too soooooon ???

Too soon for a teensy bit of ....
Pumpkin Lovin'!!!!! :) What can I say's been a very loooooong summer and still a whole week left to go before School and College starts back .... don't even want to tell you when the Uni student is back! (October!!!!!!) Don't get me wrong its been a good summer, wonderful weather, no cancelled respite days for the Angels, more lovely weather, lots of fun and giggles and lazy days.  The only downside really has been the lack of sleep ... too warm, and two mithery wide awake Angels! (We balanced things with several pj days!)  So the other day I was just longing for the leaves to turn, for cooler nights and pumpkins. I couldn't do much about the first two but I had a real desire for some pumpkin love :)) I had the teensy little pumpkin pincushion kit ready and waiting in my stash and off I went ... Angel Mim was a very willing participant in its construction .... glued to my arm whilst I traced and cut the pumpkin shapes (had to lock her out of the 'Quiet Room' whist I sewed!) and then she was most eager to help stuff the pumpkin! I think we did a good job ...hehehe   The glass pumpkin was a 'steal' ;) found it on E-Bay for mere pennies... it would have been a crime not to 'win' it!

I've got itchy fingers again today too ... and its all thanks to my lovely friend Miss Tanya and her very tempting Etsy shop "mylilcraftroom" ...this little envelope of goodies arrived this morning ...
Miss Tanya has such lovely yumminess. She made me up two lovely woolly kits for a teensy owl and a snowman head ...beautiful wools and buttons too! And some lovely cross stitch fabric and patterns. That little owl is hooting away at me :) Lovely goodies, Thank you Miss Tanya :)

Although I haven't got much sewing started or finished this summer, I have baked quite a bit, I think the long hot summery days call for cake don't you!? :)
Mmmmmmm yummy Lemon Cake has been a favourite, along with Carrot Cake, Victorian Sponge Cakes and a surprisingly good Angel Cake that Jacob made ...even though he 'forgot' some of the ingredients ... it still tasted yummy ;) Sadly I think I maybe a little rounder around the middle but what's a tummy for if not to fill with scrummy yummy cake!? hahaha

Now I don't want you thinking our summer has been free of mishap and mayhem ... we always have that in abundance! We have had our moments too :) Life is not always fun and games, we've had moments of  tears and woe-be-gones, grumps and moody-pants and Angel 'scraps' too :) That's what families do. We've also experienced moments of terror and life-threatening situations ... I can just about cope with Angels releasing handbrakes in cars ...conveniently parked on a sloping drive! But what most unnerved me and almost caused me to suffer a most undignified 'ladies' moment was when this jumped up right in front of the Angels and I whilst we were sat snuggled on the sofa  quietly enjoying a little bit of 'Little House on the Prairie' ....
 Eeeeeeeaaakkk ..... a Frog! A Maaaahhoooosive frog, we are talking ginormous ....bigger than the dog .... well not quite but definitely the size of a BIG hamster!! The screams !!! We aaaaall screamed and leapt up onto the sofa, clinging to one another for dear life ... hubby came frantically running in to save us  .... that's what caused the frog to start jumping all over the room and wedge itself behind the chair in the corner ... not our screams! :)  I reeeeaally need to get some big old lady knickers because I can't take frights like that any more ... my pelvic floor isn't up to it! It felt like years before hubby caught that giant frog and the Angels and I didn't stop screaming until he did (I felt he needed to fully appreciate our terror and anguish ... he was laughing for goodness sake!) and then we screamed some more until we were sure he'd returned that dinosaury-frogginess to the bottom of the garden and locked the patio doors so it couldn't get back in!!! I hope you can feeeeel my pain and anguish!   I feel all light-headed just reliving the moment ... I need cake! Or Chocolate that would work too ...or even a little bit of hooty owl sewing ... yes, a teensy bit of Owl sewing to soothe my troubled nerves ;)

Only one week left and we'll be back to normal service!!!
Hugs Wendy x x

Sunday, 11 August 2013

Blurry photo's upload :)

The Angels are munching on their Jam butties and watching Johnny English (film) on TV ... both are giggling away at Rowan Atkinson :) I have a quiet 5 minutes to  try and upload ...

So here are some of the promised blurry Photos ....
Busy, busy, busy, lots of ladies shopping ...
Not long after I took this one there was a teensy confrontation between 2 ladies over a jelly roll ... quilters are generally happy friendly ladies but when it comes down to that last jelly roll, it can turn into fist-i-cuffs :))  Fortunately they didn't come to blows as the stall holder found another roll :) But it did make me giggle to watch these two old ladies not backing down :)

My favourite stall ... 'Sew Cherished' can you see all that lovely woolly goodness? :)
Next up are photo's of some of the quilts, I didn't get to see them all but these are some that took my fancy :)
I loved these crows on the patchwork green, very detailed :)
  Beautiful shades of blues, greys and creamy whites ..
 Loved these red pinwheels...
Another dramatic red and white quilt..
One of my favourites,  scrappy 1/2 square triangles and flying geese :)
This quilt was HUGE and so detailed, I couldn't fit it all in :)  It looked hand quilted too, with a cute teensy prairie point edging.
 Another scrappy quilt... lovely colours :)
One of the exhibits that made me pause and go ... 'whaaaat?' I think its a frog...not sure if its a flower or a bug in its mouth ... I think its a flower :)
 I liked these crazy patched and stitched bags/bowls ?? very pretty :)
I think overall this was my favourite quilt, not a traditional quilt but beautifully made  ... each 'row' is actually a line of stitched words ...
a close up ...
I think I must be really mushy :) But I thought it was so sweet to make a quilt using 'every text he ever sent me' ... definitely the most romantic quilt :)

That's as much as I seem able to upload, they're the best of my blurry photos, the rest are pretty bad ...hahaha ... my photographic skills not the quilts!

Well its finally time for bed ... my achey body needs more sleep :) I'm getting oooold!  hahaha 
Time to dream about all my loot and treasures :)

Night night   
Love Wendy x x

The day after the day after the Quilt show....

Oooooooh my poor feet are still aching, my shoulder is twisted and I have muscles in my legs I don't recall ever exercising ...but I'm Oh so happy!!! I got sooooooooo much loot!! ;) I was a teensy bit worried at first that amidst all the crowds I couldn't see or find anything, but once things started to quieten down after lunch, the real shopping started ...hehehe.  I had a lovely if not long day, out at 7:30am to drive to Manchester to catch the 8:27 train, arriving at Birmingham at 10:15 a bit of a walk thru' the NEC to the show halls and luckily straight into the show with no queueing because I'd already bought my ticket :) The show was great, beautiful quilts and exhibits and lots of stalls with lots and lots of goodies .... wanna see my loot?? hahaha
Oodles of goodies :))  ...think we need some close ups ;)
I found some lovely crazy wool kits from my favourite stall 'Sew Cherished', the lady had some beautiful woolly goodies ...the only one I managed to find in the whole show! I'm not sure but I think she was American. I was very tempted to buy a beautiful hexie autumn table runner kit that she had, but even my pennies couldn't stretch quite that far :)
I did manage to find a little woolly goodness ... some Moda wool and Moda velvet and some brushed wool-like fabrics ... I only seem to have bought reds and greens this year with that one gold ... not sure why There was a beautiful Irish stand with some gorgeous wools fabrics but they weren't felted and I just knew that I probably wouldn't use them as I should and they were mega expensive.
My main shopping extravagance ... 2 !!  'Snowman Gatherings' jelly rolls (I got a good deal! ... hahaha ... don't I always say that.) I admit I was easily swayed to buy 2 :)  Aaaaww, I know I'm weak but the lady did say they were her last 2 and she wasn't getting anymore ...blah de blah ... Ooooh I'd better buy both ... bet she had more the next day! I have a log cabin something or other idea flying around my head and they'll be just perfect for that once it becomes more than just an idea :)   I couldn't find much valdani, just 2 sad little balls. I filled out the shopping bag with some  needles, cross stitch patterns, mini moda samples, a couple of magazines, some new fine pointed scissors with little charms and Moo hand cream :) I well and truly spent all my pennies ... good job I had my payday loan from Jacob ... hehehe (I like to think that in allowing him to 'sub' his Mum's spends I'm actually preparing him for his own financial management when he leaves home  and is living independently ... although what I'll do then when I need a sub goodness knows ;) hehehe) { I will pay him back ... with interest ... he's not that easy to borrow off .. haha}

I did have to take extra precautions with my payday loan ... I have been known to misplace my purse when I'm out shopping ...
This was the security measure we came up with ...clipping my purse to my bag :) It was a  bit fiddly when trying to get it out and opened { mmmmm... also possibly a well meaning tactic on somebody's behalf to try and restrict my spending???  Lol}

 I stayed until 5:30pm, the very end, when the voice over the tannoid (?sp) was telling everyone the show was over and to go home ! :)  My train left at 6:38pm so I had plenty of time to walk back and have a sandwich and a drink before clambering onto the train with all my bags ... which is when I twisted my shoulder :( My goodies sustained me thru' the pain on the journey home ..hehehe
Hubby and the Angels with my lovely Sister-in-law (keeping order in the back seats with the Angels!) collected me from Manchester at 8:45 and we were safely home by 9:30pm .... a loooooong day but sooooooo worth it ...hehehe. Yesterday I spent time drooling over my goodies,  peeling price tags off and mixing the loot in with my stash ... hiding the evidence ...hahaha :))

I do have some blurry pictures from the show which I'll put in another post just as soon as I've fed the munchkins their supper ... I'm being tugged and pulled as I type ... Jam butties all round I think :)
I'll be back soon with the blurry photos :)

Hugs Wendy x x

Thursday, 8 August 2013

Ooooooh guess where I'm going? :)

I'm sooooo excited :)  Lookie what I have...
Train tickets and entry ticket to the Festival of Quilts at the NEC in Birmingham ...TOMORROW!!
I'm excited and a teensy bit scared all in one :) I'm not scared of the quilt show ..hahaha .. just a teensy bit apprehensive about trains and platforms etc.. But I know everything will be OK :))
I'm sooooo excited ... wooohooo!! I promise to be good and buy only goodies that I feel I can't possibly live without, I will be controlled and responsible .... Naaahhh! You know me ...hahaha ... but I will try to look everywhere first before parting with all my pennies on the first stall :)

Just a quickie tonight, I have to go sort out essential bits and pieces, like which bag to take, which shoes to wear, do I need a jacket ...will it rain? Important stuff ! :) I'll be back soon to share my adventures ... and goodies, cause we all know that there'll be goodies! ;)

Excited Hugs   Wendy x x

Saturday, 3 August 2013

**Warning!!** This is a NO sewing/quilting/crafty journal entry! :) x x

I had a phone call at the beginning of the week from a lady at the DWP (Department of Works and Pensions) It was an interesting phone call and surprisingly didn't make me cry! (they usually do! The very nice lady first asked if she could speak with Esther, I obviously explained that Esther had profound learning difficulties and had no verbal language and very limited communication skills and could I help her? The lady at the other end of the phone agreed to talk to me :) She wanted to arrange an appointment for a 'DWP personnel' to come and visit Esther and discuss how as she was turning 16 in a few months time did she feel able to manage her own finances and affairs? I again gently explained about Esther's learning disabilities and that I didn't think that was likely to be possible. I was then informed that Esther would need an appointee to manage her 'affairs' and that they needed to discuss this with Esther ... I had by now realised that the lady I was talking to although very nice was going thru' her script so to speak and wasn't completely hearing all that I was saying. I smile to think of DWP possibly reviewing our 'recorded for training purposes' phone call later. hehehe We made an appointment ... for when Esther would be available! :)
 A very nice, different lady came to visit Esther yesterday. We welcomed her in and let her settle down with her files and papers, she conversationally asked 'How's Esther today?' I was very tempted to be naughty and give her a genetic neurological breakdown of How Esther is  ... but I didn't, I was good ... hehehe.   Can you guess what happened next?? Yep, she actually started to ask Esther questions ... Esther do you feel capable of managing your own financial affairs when you turn 16 in November?? ...  No kidding !!!  hahaha  Obviously Esther just looked at her blankly, giggled and went back to watching Piglet & Pooh's adventure on TV. The lady looked to me and asked me if I felt Esther understood anything she had asked her (I bit my tongue soooo hard, not because I was cross and frustrated but to stop myself from laughing ... it really was very surreal)
I gently explained ... again ... that Esther had no verbal language or communication skills ... I even went as far as to say she cannot talk .. here is when it got even weirder .. it was when the lady asked me when did I think Esther would be able to talk? Would she 'get better'?   Now normally its around this point where I burst into tears and my grief for the loss of the life my little girl could have had becomes uncontrollable. Maybe 16 years is long enough for me to become numb to the 'when will she' questions. Maybe I've matured and am in better control of my emotions, maybe she just caught me on a evenly-balanced-hormonally-stable day ;) ... personally I think it was the chocolate bar I had after lunch that helped ...hahaha  Our appointment did finally come to a successful end, Esther agreed to me been made her appointee so that I can manage her affairs ... I'm now officially allowed to answer the telephone and any post on her behalf. I could get all sarcastic about silly government people asking silly and pointless questions but I realise they do have a job to do and there are people out there that do try to corrupt the system ... It seems a sad state of affairs that Esther and I both have to be legally verified as the people we claim to be, but its the way of the world. I daresay this won't be the last time I'm asked 'how's your daughter'?
The incident reminded me about a blog post I read awhile back incidentally called 'How's your daughter' by a father of a little girl with Angelman Syndrome in the USA. (Sadly I can't find the blog anymore, I'll have to do some searching, he's something to do with the TV program American Idol but I'm not quite sure what.)  He writes his response beautifully and I'm going to copy and paste it to the end of my blog/journal entry so that I can print it off to add to my 'paper journal'. Both hubby and I read it separately and then just looked at each other afterwards and said 'thats our life!!'   I could never express all that this father does so well, but it's as if he looked into my heart and life and wrote down all that he sees and that we feel, because he has my life down to a tee, word for word :) 
It is a little deep and personal but it's not written to shame, hurt or embarrass anyone, it is how it is ... A different life, and I think he writes it beautifully from his heart ... and mine :) {Please don't feel you have to read it, I just wanted to record it for my journal}

I promise to be back with a less heavy blog/journal entry next time .... but hey, don't you think I did good with the DWP lady?! :))

Hugs Wendy x x

A dear friend recently asked me how my daughter was doing. That question is often asked and it’s always appreciated. But then, before I could give my well-rehearsed answer, he asked, “is she talking at all?” I just put my head down and I felt my face drop. I realised in that moment, what a nice face I try to continually put on her disorder. All of us who head up foundations and speak on behalf of Angelman Syndrome are very careful to stay positive; stay “up”. We have hope and we want to keep it alive. But this time I realised I needed to get his attention.
“Bro …” I said solemnly. “She’s probably not gonna talk …ever.” He stared at me in disbelief. It was as if I had slapped him in the face. Clearly upset with my answer, he reached, “man, I would’ve thought by now with all the research and …I just …” then he went silent.
There’s an unspoken code among Angelman families. We don’t use words like “never” or “impossible”. We believe our kids are going to speak. We believe they’re going to function. We all believe that within our lifetime (or at least our children’s lifetime) they’re going to be cured in some way (although no researcher I’ve ever spoken to will make a definitive statement as to what a “cure” might look like). We believe. We have to believe.
Even though we deal with seizures, mysterious illnesses, sleeping disorders, emergency room visits just to diagnose a UTI (because our children cannot tell us where it hurts, so we have to test for EVERYTHING, EVERY TIME), hair pulling and hitting total strangers in the face in public, trying to communicate with someone who cannot master the simplest infant skills, bathroom issues, trying to bathe someone who is trying to fight you, monitoring a person who could literally swallow a hair tie at any moment and suddenly have to have their stomach pumped, making sure there are no sharp objects anywhere near them at all times, and being on call 24-hours a day to keep this person alive, we ALL believe it’s going to get better. We ALL believe there’s going to be a breakthrough. I believed it when my daughter was 6 …then 7 …then 8 …then 9 …then 10. She turns 11 in 3 weeks. I’ll still believe it then, too. But she won’t be cured by then …and I know it.
The first interview I did, after the American Idol thing, was with an upbeat reporter from New York . She was a very kind lady and did a great job on the interview, I thought. But she tagged the piece like almost all of them have been tagged ever since. As my song played beneath the voice-over, she said something like, “The Hamms are now living better days! New science surrounding Angelman Syndrome proves promising and they believe a cure is right around the corner!” I didn’t tell her to say that, but I know how TV works. You can’t leave the audience thinking there’s unfinished business. People need to put that problem out of their mind, to make room for the the next piece of entertainment being hurled at them. It’s not personal …it’s just business.
My book Angels and Idols has been in film development for over 2 years (we’re now in year 3). I’ve grown to hate the movie business even more than the music business …but I digress. If the film is actually ever made, I think it’ll be great. I love the script and it has a three-hankie happy ending. But the truth is life is not a movie. The pretty little bow on the movie, based on a piece of my life, doesn’t really exist anywhere. Once the credits roll, everything isn’t always OK back at my house.
After the end title fades and everyone leaves the theatre, my daughter still has Angelman Syndrome. The next morning she’ll wake up with the same challenges she went to bed with. A movie or a book or a song or a TV show or even a fundraiser isn’t going to change that. We need conclusions as humans. We need closure. We need happy endings. But special needs families never get to put their challenges away. They never get to leave the theatre happy and satisfied. They never see it all change with one turn of the script. Caring for a special needs child truly is forever.
My little girl is getting older and more isolated. As much as her friends at school and teachers and extended family members include her and as wonderful as they all are to her, she has never had a play-date with anyone in her life and she’s not likely to at this age. She’s the sweet, special girl they all accept and love. But she isn’t on anyone’s bff list. No one’s texting her to go to the mall and hang out. The truth is she’s actually a pretty cool mall-walking date or park buddy. Unfortunately, I’m the only person on planet earth who knows that, because I’m the only one who can physically handle her in a place like that. There’s a real good chance I’ll still be the only play-date she has when she’s 20 …or 30. After that, I won’t be able to physically handle her at all. I have nightmares about no one taking her to the park. It’s just a little thing, I know, but it breaks my heart.
She and I go driving on the weekends. We love it. But it also gives my wife and son a break from Angelman Syndrome for a minute. Friends and family often take my son for the day or night. My wife and I always smile at each other when they say to us, “we want to give you guys a little break and take him.” What they don’t realise is it’s not a break for US. It’s a break for HIM. WE don’t get a break …ever. But at least he won’t have to get his hair pulled or get his face slapped for a while. He won’t have to wonder why mom and dad have to focus on him second all the time. He won’t have to play outside with a sibling who doesn’t answer him or understand what he’s saying. He might get to be around some grown-ups who aren’t absolutely burnt down to the core of their being with fatigue. We love his time away from us …for his sake.
I’m so mentally and physically tired I can barely carry on a conversation anymore. My wife is so stressed I don’t recognise her most of the time. We snap at each other for no reason. We are like soldiers who have been on the front lines for too long. We’ve been away together 8 times in the past 10 years – all 48-hour-or-less trips. But we’ve never, EVER fully relaxed. We are always on the phone monitoring. We are always silently praying. The knot in our stomachs never unties. For special-needs families (particularly Angelman families), there is no end. We don’t exhale. Our guard is never down.
Caring for a severely damaged person day-in and day-out, for the last ten years, has changed my purview on what is important and what isn’t. I am less and less tolerant of people’s so-called problems. I just can’t find the time anymore to commiserate with friends dealing with “relationship trouble”. My crying shoulder is reserved for a little girl who will never have the luxury of a broken heart, but who might go into a life-ending seizure at any moment. Love someone or don’t love them. If they love you back, you’re in a relationship. If they don’t love you back, leave them alone and move on. Relationship trouble solved.
I have very, VERY little mental energy for the ever-growing string of people in my life needing advice on how to “make it” in the music business. It juxtaposes maddeningly against the shrinking number of people in my life who want to pay me to stay in it. If I may be honest for a moment, my daughter was having vomit aspirated out of her throat in the back of an ambulance last week, while my wife screamed and cried and tried to help pull her out of her seizure …all because of a routine stomach virus. I really couldn’t care less if you make it in the music business or not. My advice: play your music. If people like it, they might give you money. If they don’t …they won’t. There …problem solved.
My daughter has the gross motor skills of a two-year-old. She can only sign one or two words (and yes, we work with her ALL THE TIME.) She cannot bathe or clothe herself. She cannot go to the bathroom alone and often wants to play in it once she’s done. She’s unpredictable and unstable. If she trips and falls, she doesn’t have the reflex to catch herself. So a run of the mill scraped knee for a regular kid could turn into a brain aneurysm for her. She has no sense of fear so she doesn’t know she shouldn’t jump off a balcony or grab a black widow spider and eat it or cut her knee with a piece of broken glass (something she has actually done) or walk out in the street or put an electrical wire in her mouth. She’s prone to a thousand dangerous things I have to be looking out for at all times. So forgive me if I miss the part of your story where you got a sweet deal on that new car or dropped some new drama on me about your inner office feud. Quite honestly …I just don’t freaking care.
I like to be positive about my family and how we’re doing. I think, all things considered, we’re doing pretty damn well. I know people who are doing a whole lot worse …that’s for sure. But you might just remember, the next time you see that incredibly beleaguered family out in public, with the older son or daughter who is clearly “different”, that they might not be OK. They’re probably not doing great. They don’t feel refreshed and rested. They’re hanging on. They’re making it. They’re doing the best they can, and some days are better than others. Remember, when you finally get away from that person who is embarrassing everyone, that that mom and dad don’t get to get away from them. They take them home. They put them to bed. They make their breakfast. They try to give them a good life. They love them so much it hurts and they wish every moment of every day they could do more than they can. But they’re ageing in ways they could’ve never imagined for reasons you wouldn’t understand if they told you.
You might just stop for a moment, give them a nod, and say a silent prayer for them. I know they would appreciate it. That’s what I do. I hope people are doing it for me from time to time.
How’s my daughter? Her life is a dream in some ways …and it’s a horrible nightmare at the same time.