8 years today…..D-Day

And here we are…..the first D-Day without you. Today, I write this as I sit by your grave. I tidied it up and binned the dead flowers and left 2 eggs yours sister decorated. Friends walk by while out for a stroll but I can’t talk for crying.

Every other year, I’ve held you in my arms and replayed that day over in my head. Some parts still so vivid but other details have faded.

The shock and disbelief when hearing a diagnosis like mecp2 duplication syndrome is indescribable. The absolute desperation to un-hear those words in incredible. The fear of the future and the pain, yes, actual pain, is horrific and these memories will never fade.

When pregnant, a mum, and dad of course, has so many thoughts of the future. What will my little boy look like? What kind of personality will he have? Will he be sporty, clever, have a quirky sense of humour? What will he become when he grows up? Will he go to university or will he get a trade, join the army? ….endless thoughts and possibilities.

However, my son didn’t get to do so many things. His disease robbed him of so much from such an early age. He never was able to speak to us, to tell us things, and we never heard the words “I love you” or “one more story” or “but muuuum, pleeeease can I….” He never argued about anything, fell out with anyone, and I certainly have never been cross with him, ever.

As painful a journey as this has often been, I wouldn’t change it for the world. I’ve loved being Blake’s mum more than anything (as well as fayes of course) and even though the heartache of missing him is sometimes unbearable, I am so very grateful to him for coming to be my son.

During these past 8 years I have met so many people because of Blake, and almost all of them have enriched my life and the lives of my children and close family. I’ve witnessed kindness and thoughtfulness in extreme measures. Blake has brought out the good in hundreds, if not thousands of people and I too am a better person for having had Blake.

I sat last night looking at the willow tree ornament I have which was given to me by his dad one Mother’s Day and I remember saying “this will be us one day….walking together, me holding his hands”. Sadly this dream never came true, but if there is a heaven, one day we will walk together, mother and son. That certainly will make dying worthwhile.

Now, as I sit by his grave, struggling to believe that my little boy is down there, I think about how loved he was, how important he was and how he will never be forgotten. His body may be here but his spirit will live in my heart and my head forever.

Sleep well my amazing, sweet boy. Mummy misses you so very much. xxxxxx

Despair

As many if you know, like my son, and because of him, I’m strong, as I say, if he’s still fighting, so am I.

But sometimes, just sometimes, I don’t feel too strong.

Last night, after a long day by Blake’s side in the high dependency unit, and then home to battling with child number 1 over various normal mother-child issues, exhausted, drained, sore, stressed, I climbed into bed.

Sadly, I started thinking about what the end will look like for Blake. Unfortunately these thoughts are creeping into my mind space all too often. Usually when driving home, or like last night, when lying in bed trying to get some much needed sleep. They are unwelcome and difficult thoughts, but it seems I can’t control them.

Recently, I had to work with Blake’s hospice and hospital teams to write his Anticipatory Care Plan (ACP) which is about our wishes should Blake deteriorate. It’s about living as well as dying and it’s an important document to have in place when someone has a child like Blake. It’s so everyone knows our wishes and we don’t need to talk about it to everyone each time Blake becomes unwell. We haven’t really put it in practice yet but will this current admission be the first time? In fact, since writing it, I don’t know where it is. I’ll add hunting it out to my to-do-list.

So, back to last night. As I lay in bed resting my head on James’ shoulder, the thoughts of Blake dying would not leave my head, despite trying hard not to let them take over. I was panicking, because all these years, I imagine, and want, his death to be peaceful, pain free and in my arms. I don’t want tubes going into and coming out of him, I don’t want machines screaming at us, I don’t want lots of people in the room, I don’t want a resus trolley there with it’s drawers open and half it’s contents sprawled across the room, used in a futile attempt to save Blake’s life. I don’t want Blake to leave us while a doctor or nurse presses on his little chest and bags oxygen into his lungs.

But this could be how it happens. At what point can/should a parent say….”he’s had enough”? Will I know? As his mum, I hope so. But will my selfish need for him to be with me take over and will I fight tooth and nail to keep him with me? I am so scared of losing him. I know life is so hard and complicated with him in it but the alternative is far more difficult. I’m scared about how I’ll be. How will I cope with the massive hole he will leave behind. I worry for Faye, for James, for all those who will surround me and who will try to help, support and love me. Will I push people away? Will I be angry? How will I go on without him? Will I still be strong or will my strength leave with him?

I regularly hear songs and almost casually think “oh this would be nice to play at Blake’s funeral”. An absurd thought for a anyone I know, but it’s the truth. I often think about what I’ll say at Blake’s funeral, who I will thank, who will come, songs I’ll play. Will I allow his bear, David, that my gran knitted go in the coffin or will I cling onto him for Blake’s scent forever?

I know many mums who have lost their child to this brutal condition and I think of them often. I wonder how they go about their day. Do they think of their child every minute of every day, do they still cry, break down, and do they get to a time where they can think of them and smile? Do they carry on fundraising so others don’t have to go through the same or do they close that chapter of their lives?

These are all thoughts that the majority of parents generally don’t need to think about. Yes, all parents will allow dark thoughts to swoop through their heads…..”if anything happened to my little girl/boy, how would I go on?”…..but they don’t need to dwell on these. They can put these scary thoughts aside and hopefully never have to take them seriously.

The first part of this was written at 6am this morning while I avoided getting up. It’s now 11am and I’m with my boy and have spent the last hour helping with a gruelling physio session. He’s had a good enough night and the 24 hour bipap support, physio, suction and iv antibiotics seem to all be helping. He’s a little brighter eyed and the consultant admitted to being very worried about him yesterday but is happier with him today. However, the conversation developed and lead to talking about Blake’s general deterioration and how his admissions are becoming longer and more complicated. His lungs are damaged and scarred from numerous pneumonia’s over the years and with every chest infection, he seems to be becoming weaker and more vulnerable. I think the medical staff feel the end is getting nearer. While I worry about this myself, it terrifies me knowing that they feel the same. I prefer to think I’m just being a drama queen but when they concur my darkest, scariest thoughts, it’s hard. It probably won’t be the last time I’m handed a box of tissues today.

I’m struggling today. I can hardly look at Blake without crying. I touched his arm and it was cold. This gave me a really dark thought which I don’t care to write down. And I can’t look at David the Bear without visualising placing him beside Blake in a coffin. Yes, I know this is hard to read, trust me, it’s hard to write it and even harder to think it.

I’m sharing my thoughts, not for pity or sympathy, but because I want people to know what goes on in darker times, how difficult it can be for families who have a child with a complex and life shortening condition. And if I can make anyone feel less alone then that’s an added bonus.

Tomorrow is another day. I will feel stronger again, of that I am sure. And I hope with everything I have that my precious little boy is feeling stronger too.

A Life Worth Living

A life worth living.

I was told in the beginning that Blake didn’t have much hope. He wouldn’t amount to much and there was no chance of his condition being treated or cured. I listened to these words but struggled to believe them. I even partially accepted them for a few months. I grew to love my little boy more then I have loved anything in this world (other than his wonderful sister of course). I learned about his condition, I learned about him as a person, his ways, his likes, his dislikes. Like any mum, I learned to recognise his different cries, his faces and what they meant. I faced his feeding challenges full on and did my best to avoid any form of feeding tube. 

I spoke with other parents, learned from them, learned what to expect and what to ask for. I learned about the battles I would undoubtedly face in many different areas.

My little tiny bundle grew and began to thrive and very quickly I had a chubby baby boy. At almost exactly one year old the seizures began. Much earlier than I had anticipated . At 19 months, Blakes dad and I witnessed Blakes first ever full blown tonic clonic seizure. We shielded him from his 4 year old sister who was sitting behind him watching cartoons and eating a snack, oblivious to the massive change that had just taken place in our lives. A 5 minute seizure that marked the beginning of a new norm, and would alter the rest of our lives. 

Although this was a scary and extremely upsetting time, and I was devastated, as always, we picked ourselves up, learned more, and moved on. If anything, this only made me more determined. Mecp2 wasn’t going to win this battle. It would not be allowed to kill my son, destroy his cuddly little body….I was going to fight it even harder. 

I continued to fundraise, people continued to help me. So many people fell in love with Blake and wanted to help. 

And it’s thanks to everyone that has helped us that we are in this exciting position, a position where CLINICAL TRIALS are in reach. A little over £100K is required to get to that stage and between everyone helping on Blakes behalf, and the other families across the globe, we really are getting there. I get so excited when a new total is released and we see the figure coming down. 

So back to my title….a life worth living…..

Blake is a fighter, a determined boy, who through his actions and his fight, has proven to me he wants to live. He has reassured me I’m doing the right thing by trying to get to clinical trials. Every time I look into his amazing hazel eyes, I search for answers, questions.  I wonder what he thinks, and I long to hear some words escape from that beautiful little mouth. I would hate to live like that, trapped in a body that prevents me from expressing myself, prevents me from talking, laughing, shouting, eating….all the basic things that most of us take for granted. As his mother, my job is to first of all love and protect him, but I also believe my job is to help him reach his full potential. Sadly, his extra copy of mecp2 prevents that from happening, so along with the scientists, my goal is to get rid of that extra copy. 

I will continue to love and cherish and protect my little boy. I will continue to fight for his basic rights and beyond. I will love him always, cure or no cure. He will continue to shape my life and the lives of so many he meets. This world is undoubtedly a better place for having Blake in it, and as his mum, I couldn’t be prouder. Although my life is complicated, tiring and sometimes, just plain hard, I wouldn’t change it. I wouldn’t swap him. I am truly so pleased that Blake came to me, and that I’ve been the one to love him and raise him and protect him. 

Blake, I love you beyond words and will always fight for you. Giving up is not an option for me. Keep going Buster, together we will fight this disease, side by side.

I wrote this blog first this this morning while lying in bed watching him sleep on the monitor. I’ve not written a blog for some time and had expected my next blog to have been about our hospital time but these words came out instead. As always, I don’t claim to be a good writer, and I rarely even read over what I write. It’s from the heart and the words just come into my head as I type. 

As a foot note, I will add in my latest fundraiser. The AUDI raffle. I’ll add the link below too. This has been a fantastic opportunity and it would be a sin to waste this chance to raise a lot of research funds. Please, if you can, buy a ticket. You don’t even need to keep the car, you can sell it, pay off a chunk of your mortgage, give it away, whatever you fancy. If you can’t buy a ticket, please tell people about this raffle, email, Facebook, word of mouth.  Hand out my flyers. This raffle could see a large chunk knocked off our total to get to the clinical trials so Blake and I are begging for your help in whichever way you can manage. 

https://www.justgiving.com/fundraising/blakea1

Merry Christmas

As Christmas is once again drawing near (is it just me or do they come far too frequently?), I find myself reflecting on life and all of its ups and downs.

To those who know me, you will know how much I dislike Christmas. I think it comes from having separated parents from a young age and feeling torn during the festive period. It may actually have nothing to do with that and I may have been destined to be a humbug, but nevertheless, I am not a Christmas fan. For one thing, the gross overindulge grates on me. Not that I don’t partake in spending way too much and receive way too much, but still, I find it ridiculous. And I am just NOT GOOD at being organised and planning lovely trips, or making gingerbread houses or spending my little free time moving an elf around the house. I never remember to send cards, I am a rubbish presents buyer and I am quite sure that if I tried to cook a turkey, it would end in tears!!

However, Christmas for my family since 2012 has taken a sudden and cruel plummet in the ratings! If I hated Christmas before, I guess you could say I despise it now. Our first devastating Christmas was 2012, nine months after little Blake arrived. I spent the whole day comparing it to the pleasure that was Faye’s first Christmas. It was really tough, and sadly, it has gotten harder each year.

Two years ago was particularly hard because Blake slept a little later than Faye, so whilst watching Faye open her presents, age 5 and ever so excited, I was keeping an eye on the video monitor. Blake woke with a massive tonic clonic seizure which meant I had to leave my happy little girl in the throws of opening her pile of gifts, and attend to my boy who was suffering a life threatening seizure. I carried him downstairs in my arms and let him sleep it off for around 4 hours.

My son has never been put to bed on Christmas Eve with that wonderful glint in his eye and excitement. He has never rushed threw in the morning to wake me at an ungodly hour asking “Has Santa been Mummy?” I have never seen the look of sheer wonder and delight as he steps into the living room and see’s that YES, Santa HAS been! I’ve never had to tell him to “SLOW DOWN” or shout “hold on, who was that from? Mummy is writing this down!” My children have never played a Christmas game together, never fought because they were jealous of each others toys. (well, maybe Faye has been jealous of some of Blake’s cool sensory equipment!)

The bottom line is, Christmas is very painful. It’s very difficult and it’s a rather harsh reminder of the differences we, as parents of special children feel. We struggle to find suitable presents, and what we do end up buying are quite likely to never be played with. We struggle if we have to stray from our usual routine. We struggle seeing all the other families have typical family fun (although so many of my friends tell me their christmas days usually end in tears!).

Last week, Blake played the part of a Star in his nursery nativity play. Blake attends the local mainstream school, which I am so happy about. It is a wonderful school and he is very well looked after, thought of and cared for. I arrived at the play all excited to see my little boy dressed as the star that he is! However, as the curtains opened, my heart broke a little. Yes, he looked utterly adorable, and as always, I was beyond proud to see him there and delighted that he was involved, but the tears came and I couldn’t help feeling that awful pain that often hits me. It is a mixture of sadness, grief and dare I say it, jealousy. Jealous that I couldn’t hear my sons voice, that I couldn’t see him march, dance or sway from side to side. Jealous of the parents who all got a cute little wave from their precious son or daughter. I crept up to the front of the audience and he didn’t see me. I desperately wanted him to look over and give me even a flicker of recognition or even better, a little smile. It’s sad, but it’s something I just need to get used to, and I have, but it doesn’t stop it hurting.

The other thing I would like to bring up while talking about Christmas, is how generous people are. I am always a bit shocked by how many people donate at this time of the year. Some in lieu of Christmas cards, but many, just because! I know how I struggle with money at this time of year and don’t have much spare to donate, so it never ceases to amaze me. So I would like to say a massive thank you to all of you who have donated, not just recently, but ever. It’s your support which will hopefully lead to a cure of Blake’s condition.

I am so unbelievably proud to call Blake my son. I have been so blessed by having him. My life has changed in a huge way, and forever. I am so much stronger and I have Blake to thank for that. He has made me who I am and has also had a very big impact on a lot of other lives. Regardless of how the future goes, nothing can take away Blake’s lasting impression on so many people. Words really can’t say how proud that makes me. I brought a special person into this world, very special, and by God, I hope I get to keep him as long as I live!

I hate not mentioning the other special person in my life, so I will just tell you how wonderful

she is too. So many of you will know what an amazing wee girl she is. She has to put up with a lot. She has to play second fiddle too often, and she has to help me with things no 7 year old should be worrying about. However, as many others tell me, this will shape her life, make her even more special than she already is. Faye means the world to me and brings me back to reality and normality. I am the mum to two very special children, both in very different ways, but both loved equally and unconditionally.

So I will wrap it up by wishing all of you, Christmas lovers and humbugs alike, a very Merry Christmas. I am praying for good health for you all and especially my boy and all the others who suffer from MECP2 Duplication Syndrome and Rett Syndrome.

4 years ago today……

4 years ago today…………

A day that Blake’s Dad and I will never forget.

3 days prior, we had went to the hospital. Blake was 3 weeks old. When he was born there were a few things “amiss” with him and the medical staff were thinking there may be something wrong. For the week or so that we had had him home with us, we began to believe he was going to be just fine. His feeding difficulties were an issue, but hey, so many babies have issues feeding! He was our cute, teeny little boy and he would be ok. We were confident. We sat with the neonatologist and were joking about something, not really worrying too much. Then we were hit with the words “It’s bad news”.The rest of the conversation is a blur in my memory now, but what I do remember is that they did not have a name for whatever it was Blake had. The three of us went home. Paul and I completely numb and shell-shocked. Desperate to un-hear everything we had heard. I felt a huge range of feelings that day, none of them good.

The next morning, after no sleep, I called the specialist nurse we had been allocated to. I said we needed a name for what Blake had.

So 4 years ago this very day, that same nurse and neonatologist came to our home. They had found a name for Blake’s condition. As I sat on the stripey rug in the living room and listened to the doctor, my world changed. Nothing would ever be the same again. Ever. As I write this I struggle to hold back the tears as I recall hearing those words. Our lives were torn into shreds and thrown in the air. The pain was physical and the shock overwhelming.

I will be very honest here and tell you all how I really felt……

I didn’t want this life. I didn’t want a child with this condition. For a very short and desperate time in my life, I wanted to give Blake up. I could not face what his condition would bring to my life, to Pauls, to Fayes and to everyone around us.  I wanted to pretend it had never happened and get pregnant again with a healthy child. I do not think I had fully bonded with my little boy at this point due to the question mark over his wee head. I kept thinking that Faye would suffer because of all this, that she would be bullied because she had a disabled brother. This condition immediately stole the life we thought Faye would have from her. One of my main visions was Blake as a large teenager and a man, and me having to change his nappies. I couldn’t face it. I immediately googled MECP2 Duplication Syndrome and I felt ill. How could this be what was wrong with our cute little baby. I was terrified. I wanted to run away. Faye kept us going. I lost count of the amount of times we both said “If it wasn’t for Faye, we would have been off the bridge!”  Faye gave us a purpose in life….because of her, we had to get up in the morning, we had to smile, we had to play, we had to eat, shop, clean, leave the house. Had we not had her already, I don’t know how we would have got through the early days.

Despite feeling I didn’t want Blake (by Blake, I mean his condition really), I was fiercely protective of him from the beginning. With a diagnosis like that, he was vulnerable, frail, but oh so special. My love for him grew by the day and has become a love which is so strong. I love him no more than my precious little girl, but it is different. He relies on me for absolutely everything and always will.

So much has happened in 4 years. In some ways it has flown in and in other ways it feels like Blake has been here a lot longer. My life has changed dramatically and my wish list is much shorter!!! There have been highs and lows and we have experienced human kindness beyond belief. I am unbelievably proud of my little boy who seems to melt hearts wherever he goes. He doesn’t speak, rarely smiles, shows little response to most people/things, but somehow has the ability to make people fall in love with him. Blake has been on the brink of death earlier this year and has fought hard and pulled through. He has amazing strength and a fighting spirit with a desire to live.

We all live in hope that the research continues to progress in such a positive way and that the clinical trials will start soon. Blake is currently under the weather and is suffering badly from daily fevers and lethargy. He is spending his life sleeping and it breaks my heart. I know that this condition will one day be cured…..I just pray it comes before it’s too late for Blake. I will keep fundraising and encouraging others also, so please bear with me while I continue to fight for my boy.

Meanwhile, Blake has arrived home early from nursery as he is not well. I am now typing one-handed while cuddling him, so I will leave this blog here.

Thanks again for reading.

Jenny & Blake

March 17th. I hate this condition

Today started off like any other day. The usual craziness. Although slightly easier as Faye was at her Dads last night so I avoided the usual battles with her to get her out her bed, to eat, to pee, to dress, to clean her teeth blah blah blah.

Blake had a late night as we collected a cheque from St Andrew’s, so he had a wee lie in this am. Carried him downstairs at 7.30am, feeding pump hooked around my wrist, struggling to navigate  the stairs carrying an 18.5kg child. I aspirated his stomach first, then checked his temperature. Slightly high. Again. Took on the mammoth task of changing his nappy and clothes, did his breathing therapies, cleaned his teeth, put on his splints, then lifted him and his pump to his chair. Administered 8 different medications.

Coffee, toast, nursery.

Work, tidy, organise all i needed for afternoon away from home and hospital visit.

Collect from nursery.

Arrived early, so sadly i witnessed all his classmates running around in the garden, squealing with excitement and joy. Went into Blake’s room to see him lying getting relaxing therapies from his nursery teacher. I cried.

Why is life so unfair for Blake? I want him to be outside squealing with excitement, rosy cheeked for a reason other than fever!

Off to Dundee. Go to look for a birthday present for Blake in new toy shop. NOT ONE THING SUITABLE. Walked out in tears.

Help a blind man find The Cheesery. He told me I have a very nice right elbow. I smiled!!

Off to O2 shop to sort my phone. The lovely man asked lots about Blake and he happens to be looking for a good charity to support as he is training for marathons. As a new Dad, he said he would love to support Blake’s charity.

Off to Ninewells. Realise all my car park passes are used car park passes. DAMN! Do i have money?? Phew, yes I do.

Haven’t had lunch, grab a biscuit boost and some chocolate milk. Go to sit down and eat. Check my watch. Oops, late, best get to appointment.

Arrive at X-ray department in the nick of time, was a struggle finding it and avoiding stairs!

Report to reception, take a seat in the waiting area. Aaah, biscuit boost. Best flush Blake’s NJ tube first. Oh bugger bugger bugger!! It is blocked. What to do, what to do…..ok, try picking him up and moving him about to try and move tube. Pick him up, NG tube catches in the wheelchair and pulls right out, ripping tape off his face. He cries. Loud. He never cries. I feel so so bad.

I’m so sorry my baby boy, Mummy is so sorry.

Oh dear, he feels hot. Check temperature. He IS hot. Right, give some nurofen. SHIT! No access, NG out, NJ blocked!

Appointments running late. I need to collect Faye. Blake needs fed and he needs his meds, including something to bring down fever.

Trying not to cry.

Get into appointment. Put on lead coat for the radiation. Jeezo it is hot in here!! Blake gets to have a spoonful of food laced with a radioactive ingredient so we can see how his swallow is now. First spoonful into his mouth. Immediate bad news. Not clearing. His swallow unsafe and he is straight away labelled Nil By Mouth.

I cry.

About 10 people in the room who are there for this test see me cry.

I cry some more, I apologise to Blake….I wish i had postponed the test so I could at least give him a wee treat on his birthday on Monday in ignorant bliss.

One of Blake’s only pleasures has been taken from him. I HATE YOU MECP2 DUPLICATION SYNDROME. HATE HATE HATE!

Ok, tubes…we need to sort the tubes. NJ usually passed under anaesthetic. Blake can’t have that. Through to another room. Under CT guidance, a doctor “fiddles” with the NJ and using a guide wire manages to get it back in correct position. Not pleasant for Blake and I have to hold him down.

Right, NJ sorted, now we need to re-pass NG. Again, another unpleasant experience and again I have to hold down my little boy.

I cuddle him, put him back in wheelchair, administer all his medication and set up his feeding pump which will remain on till tomorrow morning.

Get back to car and I sob. I cry the entire way to getting Faye. And then I sob all the way to my sisters. Then I cry some more. WHY WHY WHY???!!! Why my boy, why anyone’s boy? How much more will he need to go through??

Have tea. Feel guilty eating in front of my nil by mouth son. Dad calls, I cry again.

Best get home. My boy needs his bed.

Home, change, change to house feeding pump, teeth, medication, change dressing on his cheeks. He cries a little. Poor wee boy! Upstairs to bed. Sleeping like a baby within seconds.

And I cry a little more.

 

Difficult Balance

Following the devastating death of a third boy in less than a month, I feel i need to re-evaluate things. I constantly fundraise and my brain never stops thinking of how to go about doing better. The truth is, i really hate it. I would much rather be spending time with my family. However, it’s very hard to get a balance and it’s also very hard to NOT fundraise. The reality is, there are not a lot of people fundraising for Blake’s condition and if i stop, the research may slow down. Maybe not by a huge amount, but as it stands, we are against the clock. It is as simple as that. Blake is 3 years and 8 months and he is deteriorating. It’s utterly unbearable.

I hate it.

I have been so sad recently and despise this condition more and more every day. Many of our children are so sick just now, fighting for their lives. And the brutal truth is, none of us parents know whose child will be taken next. It’s like Russian Roulette.

It’s like being in a horror film……who will it kill next??!!

Sounds dramatic, but it’s a fact. One of my friends, or even me, will lose our child, and soon. How many more times this winter will I post on Facebook about the loss of another boy or girl. I dread to think. I have cried myself to sleep with every loss of one of our boys this month and I feel drained. Nothing compared to what their families are going through of course, but it effects all of us in the extended MECP2 family very badly. Not only are we grieving for that child, hurting for their parents, but we are also reminded of the limited time we have with our own. We dread being that parent who has to announce their child has “earned their wings”.

As always, I digress, but my thoughts behind my latest blog were that in many ways, I need to take a break. This could be my last Christmas with my son (hopefully not, but I just don’t know) and I have spent so much time away from him, selling candles to raise money. It’s true I have raised a great amount and I am delighted, but at the same time, I feel guilty. I know it’s my busy time of year for sales, and I have to take the opportunity while I can but it is very hard being away from both my children, albeit, no more than an average working Mum. The problem I face is that I know the science wouldn’t be as advanced as it is if I hadn’t raised what I have, so it makes me think….what if I lose Blake, and say a year or two later, a cure is found? How would I feel then….I would hate myself for not trying that bit harder, or giving up altogether. If I had a crystal ball, it would be easier to make a decision. However I don’t, and I also stick to my word that I am doing this for all the other children and the ones to come behind Blake. I have such faith in the research and I am proud to have made my small contribution to what will hopefully be a groundbreaking cure for a genetic condition. It really is very exciting, trust me!!

Come January, I will no longer have sales and I will take the chance to re-charge my batteries and spend time with Faye and Blake, but I doubt that the cogs in my brain will ever stop whirring around at a rate of knots! I still have lots of ideas, and 3 specific reasonably sized fundraisers next year, but I need more man power to help me carry them out. The 3 events are Blake’s Big Adventure (80 mile sponsored group cycle, with me pulling Blake on a trailer), The Great British BLAKE Off which will be a family fun day with a baking competition and stalls, and a big themed evening event, details to follow, but will probably be happening in late August (it will be FAB!!). Any volunteers to be on the committee for any of these events would be greatly appreciated or even if you have any suggestions or contacts to help with any of them would be great. Any other fundraisers you wish to carry out are of course more than welcomed!

I’ll say goodbye for now as I need to wake my boy and hope he will manage some oral food for his dinner although I have a feeling I will not succeed. Just one more thing his condition is stealing from him.

Jenny & Blake ❤

Shared Pain

Blog 3

I have been rather slack with my blog writing, but my extremely busy life has not allowed me much free time to focus on writing. If only I could record the thoughts I have while trying to sleep, or when I am driving, I would have a plethora of blogs!

But today,  I have found myself home alone, awaiting my little boy’s return with his carer from his night at his Daddy’s and I have decided to put something together.

Yesterday, we, and by “we”, I mean the MECP2 family/community lost another of our boys. It was only a couple of weeks ago since the loss of another and sadly, this is something we experience relatively often…especially in the winter months.

Cortez was, i think, 8. He was beautiful. He lived in South Dakota and had a wonderful and loving family. I do not know the details of his passing and I do not need to know. All I know is that last night, his family didn’t tuck him into bed, they didn’t get to kiss him goodnight, and they will never again hear him breathe or see him smile. My heart literally aches for them. It is a real, physical pain. I never met Cortez, but I was lucky to have met his wonderful Mum and sister. Two beautiful and strong women who adored Cortez.

How do they now move on? How do you adjust to life without someone who relied on you for everything? When you are a carer of a loved one, you put everything into it. Your heart and your soul. It is the hardest job you will ever have, and you will do it better than you have done anything in your life. You do it so well because you love them passionately. They rely on you, they need you. To have that role taken away from you is unthinkable. I cannot begin to imagine how massive that gap will feel.

MECP2 Duplication Syndrome is an evil monster. It destroys families, it steals childhoods, steals brothers and sisters and causes heartache every single day for all who are affected in some way by it. People will say things like “it’s God’s plan”, “everything happens for a reason” “god only gives you what you can handle” and “special children and only given to special parents”. I hate every single one of those comments, yet I hear them on a weekly basis. People do not mean bad by saying them and I am sure in “life before Blake” I may have uttered these words. Not one of these phrases make me think “oh well, it’s okay that mecp2 is slowly killing my son, God planned it” or “oh that’s nice to know that I must be special if I was given Blake”. I’d rather not be special and have a son that has a chance of outliving his parents.  If and when I see my son take his final breathe, I will most certainly not be comforted by “everything happens for a reason”. There is no acceptable reason for my son having up to 60 seizures a day. There is no acceptable reason that my son has had pneumonia more times this year than I care to remember. There is no acceptable reason that my children can’t play and laugh and fight together like other siblings.  And there is no acceptable reason that Blake’s Daddy and I should have to watch our son die.

Cortez has lost his fight on this earth and his time ran out for a cure. His mother was with me at the conference and she too was very excited about the progress the scientists are making. It’s too late for her boy now and that is so painful. To think if he had been born a few years later he may have lived long enough to be cured.

My Blake may or may not live to see the cure, but I hope with every ounce of me that he does. I long to hear his voice, even just one word. I long so badly to see him raise his arms for me to pick him up. I long to feel his arms around my neck and give me a big slobbery kiss. My list of things I long for need a blog of their own and they are all basic things that every other mother or father experience on a day-to-day basis.

As negative as I am sounding today, I am always mindful of the positives in our lives. Firstly, I have my son. He is 3 and a half. Many other parents haven’t been lucky enough to have had their children with them so long. He does make me smile, and he makes me proud beyond words.  Also, because of Blake, I have met so many wonderful, thoughtful, kind and caring people. I have been witness to human kindness that many people will never experience or know about in a lifetime. I see how much Blake is loved by hundreds of people, all hoping for that breakthrough in the research to happen YESTERDAY!

So today, despite feeling very low, mourning the death of a lovely wee boy, I am also trying to remain positive and thankful. Please join me in thinking of Cortez’s family and loved ones as they begin to learn to live without their precious son.

Thank you for reading.

Jenny

http://www.blakemcmillantrust.org/

https://www.justgiving.com/reversemecp2blake/

A Necessary Evil…….

Blog Number 2…..

This blog is about something that I HAVE to do. It is a huge aspect of my life  and I want people to understand what I do and why and I also want to encourage more people to help me in some way. So here goes….

I don’t want to fundraise.

I didn’t want my child to be born with profound and multiple disabilities.

I don’t like posting to ask for help, in fact, I actively DISLIKE it. I cringe at myself when I click on the “Post” button.

I worry (a lot) about annoying people or boring them senseless. I worry that people hide me or delete me from Facebook.

And I get hurt when I see someone has “unliked” Blake’s Facebook page.

I shouldn’t, but I do. I can be a bit sensitive at times (okay, most of the time!) and I get hurt easily.

So now I have cleared that up, you will hopefully realise that this is not fun for me, but sadly, I have no choice. The fact of the matter is….I HAVE to fundraise.

I love my son. I want to help him and all the others. Please, take a minute to ask yourself this….What would you do if your child had been born with a rare, cruel and currently fatal condition? What would you do when you heard that the research looked so promising that there will undoubtedly be a cure? And what would you do when you realised that money was the only thing standing in the way? YOU WOULD FUNDRAISE!!!

Over the last 2+ years, we have organised many fundraisers. People have fallen in love with Blake and have taken him to their hearts. Friends, family and many strangers have helped, planned and organised fundraisers, some with my input, others, completely without! People want to help. I am truly humbled by everything that has been done so far. I have experienced human kindness that many people will never experience in their lifetime. I have met some wonderful people. I have been surprised, shocked and honoured.

I attended a workshop at the weekend for parents of children with Rett Syndrome and MeCP2 Duplication Syndrome. It was emotional, inspiring and motivating. We laughed, and we cried. We shared stories, feelings, tears, experiences and gave each other advice and opinions. It is incredibly touching, listening to other parents, hearing their individual stories and what their child goes through. I listened intently as a parent told his story and why he and his wife decided after 11 years that they wanted to start fundraising for treatments for their daughter. He stated that he loves her as she is, he doesn’t necessarily want to change her….but he has to ask himself….what would she want? Would she want to be playing outside with her friends, would she want to be spending her pocket money at the shopping centre on her holidays and weekends? What would she want to say to her parents? Another parent described finding a cure/treatment as “unlocking” her child. We all believe that our children are locked in their own bodies, unable to express themselves, show us their true potential.

So what did I get from this workshop? I became inspired again, motivated, determined. I was reminded that it is up to me, as Blake’s Mum, to help him, unlock him, fix him, cure him. Allow him to be what he wants to be. I learned about many ways of fundraising, not just asking for hard cash in the form of sponsorship.

I am using this blog as an appeal. I am begging (yes, begging!!) you to help. There is power in numbers. I urge you not to feel daunted because you feel unable to take on a massive task. I will go on to give you ideas of how to raise funds without running a marathon.

Blake is 3. He has many problems. I was lying with him the other day, and panic set in. I don’t want to lose him. I used to think I would be able to cope with losing him. But now I just cannot bear the thought of not having him. Life with Blake is all consuming, I can’t begin to imagine how life would be without him….such a massive gap would always be there, it would never heal. He is my wonderful little boy and I just want to help him. I want to take away the seizures, the chest infections, and I want to fix his beautiful, chubby little body to allow him to move.

Hopefully you are now asking yourself what you can do to help. If you’ve helped before, please consider helping again. There are endless possibilities and I will tell you about some of them, but I have so many ideas, some tried and tested, others yet to be carried out. If you want to chat further with me and get more ideas, please do not hesitate to contact me.

So, some fundraisers take  a lot of effort. Some, not so much. In 2013 to mark Blake’s 1st birthday, we organised a dinner dance. This raised £18,000. We were over the moon. However, it took months of planning and a lot of begging!!

We have had Cake Sales, pop-up charity shops, candle sales, psychic night, raffles, online auction, cheese and wine nights, baby sensory events, yuletide fayre, fashion show and many many other events.

Other ideas we have is to ask local businesses to make us their “Charity of the Month/Year”. Many businesses have a charity team and are actively looking for charities to support. This is something that anyone can think about. Who do you work for? Do they have a charity team? Could you ask them to consider supporting Reverse Rett? Schools…..they do charity work…..do you have a school age child? Do you work in a school? Maybe you could approach them. Kids love fundraising. In our local village, some of the children had a cake sale in their garden. They baked cakes, put them on a table in their front garden and sold them to passers by. Another local girl made little soaps and went around her neighbours and sold them for 50p each. Now, neither of these were massive money making ventures, but nevertheless, that is not important. They went to the effort, they helped, they wanted to do something, and they raised awareness. You never know who might hear about Blake and the research being done and then want to help. Many people just want to fundraise. Some don’t actually care which charity but they just want to do good.

Do you know someone with a business? Can they donate a service? Perhaps a carpenter who could make a garden bench? A pub owner could donate a meal? A mechanic could offer a free MOT etc. These things could be used in an online auction and as part of a bigger event. Perhaps business owners would happily take a collection box on their front desk.

And then there is the idea of regular donations. So many of us have been stopped on the street and before we know it we have agreed to donate £2 a month to saving a rare species, or supporting Great Ormond Street Hospital, or Oxfam. Could you afford to spare £2 a month to Reverse Rett? That’s 50p a week. I have approximately 1000 contacts on Facebook. If everyone donated £2 a month, that’s £24,000!!!! What an amazing, ongoing, guaranteed amount that is.

Sponsored events……some people love a challenge. Is there something you have always wanted to do? A bungee jump? A challenging cycle? Why not tick it off your bucket list and do it for Reverse Rett? I am more than happy to help you set up Just Giving pages, give you information etc, and the team at Reverse Rett are also extremely helpful and will provide you with all you need.

A coffee morning, afternoon tea, girlie night in….these are things that we would do anyway……why not turn it into a fundraisers. Charge £5 for the coffee and cakes, have a small raffle and before you know it you have raised anything from £50 to £300.

The bonus to fundraising is that it’s a win-win situation. Vital funds are raised for a great cause and you get to feel very good about yourself. It’s true…there is definitely a buzz to fundraising. Before I had Blake, I organised a dinner dance for 2 local girls who needed funds for an operation. I have to admit, I felt very proud of myself for raising £10,500 on my first proper event. It was hard work but worth every minute and even better to know that the surgery has been a wonderful success. I also know how much their parents appreciated it and that felt good. So please know, that ANYTHING you can do, big or small, is appreciated more than you will ever know.

So I will leave you there and hopefully I have managed to inspire at least one person with this blog. Feel free to share among your friends and contacts and please contact me if you want more information or ideas. My email address is jennymcmillan1@hotmail.com

Thanks for reading. Below are some links which may be of interest.

https://www.justgiving.com/hope-for-blake/

http://www.reverserett.org.uk/what-we-do/what-is-mecp2-duplication-syndrome/

http://www.401project.com/

My boy turns 3.

I have considered writing a blog before. Purely because sometimes i have too much to say to put on one Facebook post. However, I am not the best at writing and some of my friends who blog are extremely articulate and I am perfectly aware that my blogs will be nowhere near as well written. However, I can guarantee they will be honest and from my heart. I am not expecting everyone to agree with my thoughts, but they are mine and I cannot change that. I am not too sure what I hope to achieve from writing things down….maybe it will be like a journal for me, a means to vent my frustrations and share my hopes, dreams and joy, but most importantly I hope that I can at least help someone in a similar situation to realise they are not alone, they are not bad people for having certain thoughts and that they can open up themselves about how they feel. I am extremely honest when talking about how my life has been affected since having Blake and many people have not only been shocked by things I have said, but have been grateful for my honesty and they too have opened up.

Anyway, already I am wittering on so I will get to the intended subject……

BIRTHDAYS!  As many other parents like me already know, they are very cruel reminders of what our children are missing out on, what they should be doing, how they should be playing had they been born without the harsh restrictions forced on them, disabling their ability to do the same as their peers of the same age.

Blake turns 3 tomorrow.

3 short but long years.

During these 3 years, we have not seen Blake clap his hands, crawl, sit without maximum support, feed himself, drink from a cup, point to a favourite toy.

We have not seen him fight with his sister, argue back, empty cupboards, scribble on walls, embarrass us in a supermarket or any of the other typical things a toddler tends to do. He has reached only a small handful of expected milestones of a 3 year old.

Blake has suffered a lot. Last year we spent a lot of time in hospital with him. In fact, he was ill for most of the winter. This time last year, we watched as he almost died. I sat by his bedside, holding his little chubby hand while i watched him almost slip away. I listened as the doctors tried to work out what was wrong, and then i held him as they pumped glucose into his lifeless body. What a relief it was to have him come around again. I will never forget the fear and desperation i felt when i thought i was losing him.

However, Blake has brought us an abundance of many other things, good and bad! He has brought us love on another level, a level that I didn’t think was possible, an unimaginable level.  A love that I can honestly say has surprised me, but that is another topic for a blog!!! He has taught not only me, but hundreds of other people so many lessons…….to be grateful for what we have, to appreciate the big and small things in life, to never take little, seemingly trivial achievements for granted. Things like laughing, kisses, cuddles, eating, expressing preferences.

I call Blake “my perfect boy”. I tell him this at least once a day, and each time I do, I ache. I know his physical problems and restraints mean he is not “perfect”, but to me, his is. He fights and struggles each and every day. He has suffered more than most adults and has a medical file that the worst hypochondriac would be proud of. (it will need its own trolley soon!)

Blake’s toothy grin lights up a room, and no matter where he is and who he is with, when he smiles, people stop what they are doing, pause their conversations, just to enjoy a few seconds of his rare smile.  At this point I am beside myself with pride. His little giggles and chuckles are even more rare, and I don’t think he has ever laughed where I have not cried with happiness!

Life is not perfect, I don’t go around gushing with pride and happiness all the time. Life is extremely difficult and extremely emotional on both ends of the scale. I can go from intense happiness to crushing lows in a split second. Often this is caused by a seizure that pulls me back to reality and reminds me of the severity of Blake’s condition.

This morning at breakfast, Faye, Blake’s 5 year old sister, was talking about Blake, saying he was a “big baby” (size reference!). I told her that Blake is no longer a baby, but nearly a 3 year old boy. She said “is he a toddler then?”. Hmmmmm! He is, but he isn’t. He does not toddle. And chances are he may never reach the toddling stage, although I do remain hopeful. Faye told me I was lucky, that at least Blake wasn’t annoying me and making a mess and climbing stairs and getting up to mischief. Well, there’s a positive slant on things!!!! What i wouldn’t give to have to worry about Blake making a mess, emptying drawers, breaking ornaments…..

So, on the eve of Blake’s 3rd birthday, i find myself reflecting on the past few years, how he has grown, developed, overcome. I never knew if he would see this day. Life has changed so dramatically, so suddenly and so cruelly. But Blake has brought so much with him, enriched our lives, made us stronger and better people. So tomorrow we will be celebrating BLAKE, who he is and what he has overcome. We will all be looking forward to what the next year has in store for him. Good things I hope.

As I write this, Blake is lying beside me. His temperature was 40.5 but is slowly coming down. His lips were purple and skin grey. He is now very flushed and his fever is breaking. While driving him home from respite earlier today, his breathing was horrendous, he stopped a few times! He is twitching and I am anxious he is going to have a seizure. None of this is unusual. This happens often. Yes, i am used to it, but it doesn’t make it any easier to watch. I hope he is better tomorrow and can enjoy having his family around him and his new sensory equipment.

Blake my darling, Mummy loves you so much, always have, always will. Keep fighting wee one, HAPPY 3rd BIRTHDAY my sweetheart. xxxx