Category: Our stories

  • The Public Is In Desperate Need Of Guidance

    So after a week away enjoying the sun and swimming with our gorgeous girl this week, it came to my attention the general public is desperately in need of some guidance around interacting with kids with disabilities and their families. I will premise this is just how I feel, but perhaps others feel the same…

    1. First and foremost they’re just kids. They just want to play with your kids. They may think you’re funny and want to interact. It’s really as simple as that.

    2. Mums and dads – if we arrive at a pool, park etc. and you suddenly corral your kids with “we’ve just finished” or “kids it’s time to go and get a snack”. We know what you’re doing. We see you. You’re nervous your kid is going to be rude and would rather avoid it altogether. Seriously my family can clear a pool in five minutes.

    3. If your child is staring, take the lead. Say hello. She may say hello or she may ignore you, but you’ve shown your kids what to do. I swear I can count on one hand how many kids said hello to Lucy this week and we encountered up to a hundred in the resort. I love those kids, they warm my heart.

    4. If your child is being rude and running away, laughing, pointing, staring with an ugly face, intervene and quietly pull them away and tell them that’s rude. You’d do it if they did it to a neurotypical kid! Don’t run away from this opportunity to show them the right way to interact. This world will never get better for people with disabilities if we don’t teach people to respect.

    5. She sees everything and she hears everything. I hear it and I see it. I have the world’s best poker face but the family sees it all. We push it down to the deepest parts of our hearts because if we acted on this, we would be arrested repeatedly.

    6. Don’t be scared to talk to me, ask me a question. The most wonderful young mum came to talk to me in the pool, turned out she had grown up with a young man with CP and wanted to know about Lucy. After having Lucy be ignored for two days by everyone, it felt so good to be seen.

    7. We’re totally jealous of all the parents sitting around the pool/park chatting without having to watch like a hawk. Lucy took her seizures to a new level this week with one in the pool, so our safe space of putting on her floaties and letting her play is now out the window. We’re exhausted having to watch all the time. There’s never a moment outside the house we’re not having to watch. And she’s 12 years old – we’ve been watching her obsessively for 12 years. Not great for your mental health.

    8. On that note, feel free to offer some help. I’ll let you know if I’m okay, but I’ll also let you help if you can. When I’m trying to get Lucy out of a hard physical situation, I would love someone to offer help at least. I was struggling to get her out of a pool and 15 people sat and watched me. On that note, because we’re having to be so vigilant maybe offer to get them a coffee? I would have killed for a margarita from the pool bar but just couldn’t take my eyes off her to make that happen.

    I know it can be hard with kids, I get it, really. But imagine if that was your child that you saw ignored and run away from over and over again. You would want it to change for her in some way.

    I’ve made this public, feel free to share.

    Credit https://www.facebook.com/jen.kyriacou

     

  • How Your Vet Sees Euthanasia

    How your vet sees euthanasia…..

    So, you bring me this puppy – she kisses my face, devours the cookies I offer, and our friendship starts.

    Several visits later, he starts to learn where all the cookie jars are in the clinic, and that lady in the white coat, well she’s okay….

    Fast forward many visits later, now I am in love with your dog and your whole family because, well, you are just really really good people and I have not only watched that pup turn into a really sweet family member, but I got to watch the kids grow every year and be a very small part of your journey.

    Remember that time she ate your teenage daughter’s thong underwear? 😝😝😝 yeah we all had a good laugh over that once surgery was done and she was recovered. Your daughter probably never forgave me for bagging that up and showing the whole fam-jam when they came to pick her up from the clinic.

    So many adventures, so little time…..

    And here we are, fifteen or so odd years later, having to say goodbye.

    He’s got heart disease and I can’t fix it anymore. She’s got cancer and there is no cure. He has arthritis and the meds just aren’t working. I want her to live forever for you. I want that so badly it hurts. I feel like I have failed him and you when I have run out of options to keep them, and you, comfortable and happy.

    So now it’s time, and I am supposed to be professional. Objective. I am the doctor. Calm. Cool. Collected. Always under control.

    F~*k that.

    I have known you and her for a third of my life, and most of my professional career.

    But I keep it together. My superhuman amazing technicians have put the catheter in. My support staff from reception to assistants have done all the paperwork. Trust me they may not show it but their hearts are breaking for you. They have been there. They know. And they know you and care about you too.

    And I have the needle in the pocket of my white coat. The same pocket that was always full of treats for him. I take a deep yoga breath and come into the room. Gotta stay strong now…….

    She’s giving me that sweet look she always does, the one that is followed by puppy kisses and a glance at the cookie jar. But she is too weak now. She is ready. You are not. I am not. But this shit has to happen because we love her too much to let her suffer.

    She would keep going as long as we asked her too. But we can’t ask her to anymore. It’s not fair to her. I wish our human hearts could be so giving all the time. I wish I could be the person my dog thinks I am. I wish I wish i wish I could find a way for them to live forever. But I don’t have those magical powers. I am just a vet.

    So we kiss him back, not much left of his body that still works, but that old tail wags, just enough that I lose my shit on the inside but I try not to cry. Gotta stay strong.

    Her body relaxes, she is in your arms and your are sobbing. Another family has lost one of its most cherished members. I put my stethoscope to her heart to make sure it has stopped but she is held so tight to your chest that maybe that is your heart I hear pounding or maybe it’s mine and all the blood rushing through my ears as I try so so so hard not to turn into a blubbering mess.

    Confirmed, he has passed. You lay him gently on the table and we hug tightly as you go to leave.

    The door closes behind you and I don’t know if you hear this, but I sob hysterically into your pets ear. She is gone, he will be missed, and you have to face what I know will be one of the hardest parts of today.

    Entering that house and they are not there to greet you.

    Please know that I know how you feel. As you leave the clinic I just wish with every fibre of my being that you never had to face that. I wish they could live forever.

    And please know, I am so grateful that I was a small part of your journey.

    Love always, Your vet.

    Credit https://www.facebook.com/profile.php?id=100001151344168

     

  • Dear Daddy A Message From Your Newborn

    Dear Daddy… a message from your newborn

    For now, I need your deep rolling voice and strong gentle hands. I need your warm skin and scratchy kisses, your loving smile and clumsy laughter. I need you to look after tired, exhausted mummy, and to be patient with us through the long days and longer nights. To make cups of tea, and do the laundry. To comfort me in the long dark nights, rocking me gently, as you walk me up and down the dark hall.

    It feels like forever but it passes quickly, you’ll just have to trust me on that.

    For soon, you’ll be back at work. Earning money to help provide food and shelter for mummy and I. You’ll go to work at 8am, sometimes after already being awake with me for hours. You’ll come home, exhausted and grumpy, to a partner who all too often has nothing left to give. This is when I will need you most.

    I will need you to be the rock in the storm. To cuddle me in your gentle, strong arms, while you face down mummy’s desperate cries with tender words and firm hugs. You won’t always get it right, and sometimes you’ll get it very wrong, but Daddy, I promise I’ll love you all the same. In those moments, I’ll need you more than anything, to forgive yourself and mummy quickly. To warm the room with your laughter, and show me that sometimes, it’s ok to be wrong.

    One day, I’ll be big. A princess, a ballerina, an explorer, a dragon or a powerful witch. I’ll ask you to play the same game, over and over, and I need you to play with me Daddy. To put your phone away, leave your stresses behind, and just play. And through this, Daddy, you’re teaching me of my self-worth.

    As I grow older, you might feel like you understand me less, but I’ll need you more. I’ll need you to take my hand and guide me up those first few branches, then let go and watch me climb. I’ll need your calm confident voice that says “you can do it”. I’ll be afraid at first, but I’ll push myself forward, because I’ll know, as I’ve seen all my life, that if I fall, you’ll be there to catch me.

    Then, in a long, long while, I will decide to go out on my own. You might think it’s too soon, and you’ll probably be right, but at that time I’ll need you to trust in the girl you raised so well, and believe in me the way I believe in myself… thanks to you.

    But for right now, Daddy – your deep rolling voice and strong gentle hands are enough.

    Credit https://www.facebook.com/villagekiwi.co.nz/

     

  • Their Time On Earth Was Not In Vain

    I found out I was pregnant in January 2011 with mine and my husband’s first child, we were ecstatic when we found out as we had been trying for just over 2 years. Everything was going smoothly at our 12 week scan we found out we were having twins.

    At about our 16 week scan we found out they were identical and shared the same placenta and I had to have scans every 2 weeks but everything was going according to plan. At around my 20 week scan they got a bit jumbled up so it was late, I ended up having the 20 week scan at 21 weeks pregnant and found out we were having boys, I had another scan the next week on a Thursday but when we arrived for the scan they cancelled it as I had had one the week before and they said the consultant would think the boys weren’t growing properly if they did the scan.

    So with it being cancelled we went to my mum’s in Cambridgeshire for the weekend as we lived in Ipswich at the time. The day after my scan was supposed to be on I started getting cramps so rang my midwife and asked her what they could be she told me it was Braxton hicks and to take some painkillers and it will pass, by the Saturday the pains still hadn’t gone so my mum took me and my husband Daniel to the out of hours doctor at the hospital where she lived, he checked the boys heart beats which were fine and concluded it was Braxton hicks and to take painkillers so I carried on doing what they said as they were the professionals.

    I managed to cope as best I could with the pain and by Sunday evening it was time for us to go home back to Ipswich. I awoke early hours of Monday 6th June to immense pain, I went to the toilet and saw that I had the show so I woke my husband up in a panic and he rushed me straight to the hospital, we arrived at about 4:30 in the morning were they said they would check me over.

    They checked the boys heart beats which were still fine and told me they would keep me in for monitoring, as I was 22 weeks and 5 days pregnant I thought I had to pee so I got up to go to the toilet but as I stood up I haemorrhaged everywhere, I had never seen so much blood in all of my life, I remember seeing my husband’s face drain of all colour and screaming at him to get help.

    Then everything got chaotic with lots of people rushing in and screaming at each other as to what was happening, as nobody knew they didn’t find out what was actually wrong until they checked me internally and found out I was already 10cm dilated and ready to push, so what everyone had thought was Braxton hicks was actually proper contractions and I had been in labour for 4 days and no one had picked it up until it was too late.

    I remember Daniel screaming at the doctors asking what was happening and what would happen to his sons, they told him there was no hope for them as they wouldn’t be born alive. During all of the commotion they rang my mum so she could be there and they gave her the choice on who to save me or her grandsons, me and Daniel never got given that choice.

    I was given gas and air and an injection to help with the pain, I remember the midwife breaking my waters and it absolutely covering her which made Daniel laugh even in the darkness he was feeling. Our first born son Zack Lee Brame came in to this world at 6:08am on June 6th 2011 crying his little heart out to our shock as they said he would be born dead, I remember he was taken straight out of the room from me, I didn’t get to see him or even give him a cuddle, our second son Blake Stephen Brame was born at 6:18am exactly 10 minutes after Zack and was also screaming his head off I remember looking down and seeing that their placenta had come out whole still attached to him but he was also taken straight out of the room from me.

    Things were a blur for a bit until my mum and dad arrived at about 7:30, Daniel’s mum had also come but I don’t remember her turning up just her being there when my parents came in. when my mum arrived I needed the toilet so she took me but was disgusted at the site that was in the bathroom before us, there was dried blood all over the floor and walls of the bathroom and used sanitary pads and dirty blood stained gowns on the floor so it hadn’t been cleaned before I had arrived as I was the only one on that ward.

    I remember my mum blowing up at the midwife for the state of it as it was unhygienic and an infection risk, after my parents had arrived a midwife came in asked us if we wanted to see our sons and of course we did but I wasn’t prepared for what was to come she wheeled them in to us but they had sadly passed away but were still warm and twitching, we took photos of the boys and had them blessed and the midwife took their hand and foot prints for us and gave us memory boxes to remember them by, I was asked to see if I wanted to consent to a post mortem of the boys to find out what actually happened so we agreed to do it and ticked the boxes on the forms for all bits to be returned to our chosen funeral director in a few weeks time ready for their funeral.

    I was discharged a few hours later where I had to face my midwife in the lobby of the hospital asking me what I was doing there as nobody had notified her to what had happened. I remember breaking down and my mum having to explain everything to her. Me and Daniel had decided to stay at my mum’s for a few weeks as we couldn’t face going home to our flat as all of the baby stuff was there, his mum and dad offered to clear the flat for us as we couldn’t face having to see it all knowing we would never be bringing our sons home.

    During the time at my mum’s we started the funeral arrangements through the hospital but decided to go private after finding out we wouldn’t get any ashes if we cremated them or if we buried them they would be put in a mass grave with other babies and just be a number in a plot. After about a week at my mum’s we had to return home as Daniel had to go back to work and we needed to register the boys deaths and births, when we went to register them we actually found out they had lived for over an hour!

    And we never got to see them; the hospital had just left them to die. Finding that out destroyed us even more knowing that something could have been done to try to save our sons. A few weeks later we got the call that the boys had come back from the post mortem and that we could go ahead with their cremation so we did they were cremated on July 22nd 2011 at Cambridge crematorium over a month later since they were born, saying good bye was one of the hardest things I have ever had to do.

    A few weeks later I get a letter in the post stating that the slides from the post mortem are ready to be returned for their funeral when they were supposed to have been returned with the boys, furious I rang them up and told them I wanted them destroyed so that they couldn’t be used for medical studies. About a year and a half later me an Daniel decided to contact a solicitor about a medical negligence claim against the hospital where we found out that I was actually further along in my pregnancy then what they had told me it turns out I wasn’t 22 weeks and 5 days I was actually 23 weeks and 4 days pregnant over the age where they could have tried to save my sons, we also found a lot of discrepancy’s in my medical notes on how they had died but a lot of bits were missing and still are missing like my maternity notes the boys medical records/birth notes and their post mortem results.

    In 2013 I was contacted by ITN to do a show called Amanda Holden: exposing hospital heartache on the treatment I had received which aired on 24th march 2014 where we found out that the slides from the post mortem had not been destroyed like they were told to do but were in fact still being held at Addenbrooke’s hospital which is reminisce of the whole alder hay scandal. since airing I have found out that my sons slides from the post mortem will not be destroyed like I want but are being kept on their medical file which I’m not allowed access to and I can never have closure because of this.

    To this day we still don’t have answers from the hospital as to what actually happened and why nobody actually picked up my labour until it was too late, my aim for telling my sons story is to get the law changed in to which all hospitals intervene to save a baby’s life, as currently a child born before 23/24 weeks gestation they do not legally have to intervene in saving their lives, we have also discovered that it’s a post code lottery as to where you live if they will help as if I would have given birth at the hospital where my mum lives they would have tried to save my sons as they breathed. The Hippocratic Oath that doctors sign states that all life is precious. I do have all of the proof for my story as I have my medical records which show the discrepancies and the forms for their post mortem. Thank you for reading mine and my son’s story Kelly-Anne Brame .

    Share this please help get her story out. Help her make sure their time on earth was NOT in vain!!

     

  • This Is What Birth Without Consent Looks Like

    This is what birth WITHOUT CONSENT looks like

    This is what TAKING ADVANTAGE of the naivety of a young birthing woman looks like

    A vulnerable 20 year old, oblivious to the fact that she had options, that she could say no

    An unnecessary induction she was told was ESSENTIAL because her waters had broken.. only 4 hours earlier

    Countless internal examinations, unconsented and unwarranted

    The highest dose of Syntocin given to begin, because birth suite was heaving and they “needed to get things moving quickly”..

    An immediate epidural because “she wouldn’t be able to manage the pain of contractions so better to get it done now”

    A shortened time frame to push because “if a cesarean was necessary the Dr was available now”.. how convenient

    A baby born distressed because his mother was pressured and panicking from the ticking time bomb of her allowed pushing time

    A placenta instantly ripped from her body, with no option of a physiological 3rd stage, even though that was in her birth plan..

    A young woman left wondering, is birth supposed to be that horrific? But later realising no, she’d been a product of ‘the system’

    TAKE CONTROL of your birth

    Do your own research, be INFORMED, do not consent to anything you are not comfortable with

    Knowledge is power and the power is in YOUR hands 💪🏻

    www.instagram.com/raising_thecampbells

     

  • Last Night Olivia Nearly Died And It Was My Fault

    Last night Olivia nearly died.

    And it was my fault.

    I made her and Oscar a snack, handful of grapes and some dried cereal.

    It was the first time since hearing about that poor child who died chocking on a grape that I didn’t cut them in half.

    I figured- she’s almost 5, she isn’t the kind of kid to shovel food and choke, and I was rushing to finish cleaning the house.

    So off she went up stairs with her bowls of snack to carry on playing with her brother. I continued hoovering, luckily I’d switched it off when I heard her at the top of the stairs. I knew in an instant what had happened. I ran to her. She couldn’t breathe.

    She had gone to chew a grape and it had shot to the back of her throat, gone down and got wedged.

    I turned her over and hit her as hard as I could between the shoulder blades and still nothing. She was looking me dead in the eyes and her lips turned blue as she couldn’t breathe.at.all.

    Jamie finally managed to perform some manoeuvre on her that sent a grape flying across the room.

    I lay here now watching her sleep I’ve cried most the night & my heart hurts as I look at her chest where there are still nail indentations from where she clawed at her throat for air, PLEASE PLEASE let this be a reminder to all the parents out there – my life nearly changed forever last night all because of my carelessness.

    #cutthegrapes #safteyfirst

    #nevertooold #parenting #parentingadvice

    Credit https://www.facebook.com/0lauralou

  • Dear Kids I’m Sorry I Was A Jerk

    Dear Kids, I’m sorry I was a jerk.

    I wish you knew that sometimes when the house is dark and quiet, I come in and watch you breathe for a minute. I wonder there in the stillness if you know how much I love you. I think about the things I could have said differently, and I wonder if you let my mistakes roll off of you or if they stuck. I hope and pray there in the stillness that you would know how deeply and widely I love you.

    You saw me at my best today, and you saw me at my worst. We cuddled on the couch this morning and your bed head was pressed into my chest. I smelled your hair and whispered I love you. I also lectured you about LISTENING and NOT INTERRUPTING, and was way grumpier than I needed to be. Later, I laid on your bed and apologized for being a jerk.

    You’ve seen me in all my colors and I have no facades with you. I am just one mess of a Mama that apologizes often and loves you with every fiber of my being.

    I don’t really know what I’m doing. I wish I did, but I don’t. I do my best and I trust my gut, but sometimes I make mistakes. Sometimes I say things that shouldn’t be said. Please keep telling me when I hurt you and I will make it right. We are learning and growing together.

    Sometimes I can’t find the words to let you know how I feel about you. I want to, but I can’t.

    Though sometimes I am overwhelmed and stressed I wish I could push pause and keep these days forever and ever.

    I am proud of you. I tell you that, but I know you don’t fully understand what that means yet. I’m proud of you in a way that doesn’t depend on your successes or failures. I’m proud of who you are and I will always be your greatest fan…no matter what.

    I hope my imperfection gives you permission to be imperfect too. I hope you always let me see your flaws and your mistakes because you know I’m safe. I hope you never hesitate to tell me when you’ve screwed up, because this imperfect mama will love you no matter what.

    My love will wrap itself around you whether you want it or not. There’s nothing you could ever do that would make it stop. Not ever.

    I am yours.

    We’re in this together for the long haul my loves, and there’s nowhere I’d rather be than here.

    I love you.

    Love,

    Mama

    Follow Jess of Wonderoak for more like this.https://www.facebook.com/wonderoak/

     

  • To The Girl Who Moved Away From Her Family

    To the girl who moved away from her family…

    Some days you feel independent and loved and other days you feel forgotten and confused!

    Nobody said it would be emotionally and physically hard on you, but nobody said it was easy!

    These times help us grow into strong woman, but the process can come in waves!

    .

    The phone calls, texts, Facebook posts, and FaceTiming can only do so much on the days you need advice, you need a hug, or you just need someone to vent to. You feel like you start to forget their voices, and they’re living happily without you

    .

    All the birthdays, and holidays you miss, and their fun family photos to follow that you aren’t in, and some days you wish you could drop everything and go back. You wish you could just fly home, you wish you could hug your dad, mom, sister, all family. You wish your dad would lecture you one more time, you and your mom could go get coffee and talk, your sister would have a sleepover with you and you were just present..

    .

    But the hard thing about all of this, is there is no going back. You are here to grow, you are here to provide for your family now, you are here to remember all the family moments and cherish them as much as you can, and never take any moment for granted when you see them next.

    .

    Some days I’m in my bathroom breaking down, and some days I miss my families calls cause I’m so busy enjoying life. It comes in waves but when it hits just remember:

    they didn’t leave you, they’ll always be there &

    It’s okay to miss home, it misses you

    Credit https://www.facebook.com/aylynmhenry

     

  • A Story About The Cost Of Disability Told Through The Tale Of Two Pairs Of Shoes

    A story about the cost of Disability told through the tale of two pairs of shoes.

    Once upon a time there were 2 brothers who needed black shoes for school.

    ”Come on Mummy, let’s go to Asda” said the younger brother, so off they walked to Asda returning with a pair of Batman light up black shoes for £13.

    The older brother needed something a bit different as his toes often curled up and regular shoes with curled up toes were painful. They wheeled off to the shops and returned empty handed.

    So they went online and found the perfect shoe in America with a zipper that opened up the whole shoe meaning no more curled up toes. Mummy paid the £59.62 for the shoes, £1.78 foreign exchange transaction fee, £0.50 foreign transaction purchase fee and the £18.55 Customs charge, making a total of £80.45.

    And then both boys had comfy, smart shoes for school and Mummy was grateful for Disability Living Allowance because things that are a little bit different cost an enormous amount more.

    *Post made public for sharing*

    Written by Emily Hudson

     

  • Woman Helps Man Decide What To Do With His Penis

    A man wakes up in a hospital, bandaged from head to foot.

    The doctor comes in and says, “Ah, I see you’ve regained consciousness. Now, you probably won’t remember, but you were in a huge pile-up on the motorway.

    You’re going to be okay, you’ll walk again and everything, however, your penis was severed in the accident and the paramedics couldn’t find it.”

    The man groans, but the doctor goes on… “You do have £9,000 in insurance compensation coming though, and we now have the technology to build a new penis.

    They work great but they don’t come cheap. It’s roughly £1,000 an inch.

    The man perks up.

    So, the doctor says, “You must decide how many inches you want.

    But understand that you have been married for over thirty years and this is something you should discuss with your wife.

    If you had a five incher before and get a nine incher now, she might be a bit uncomfortable.

    If you had a nine incher before and you decide to only invest in a five incher now, she might be disappointed.

    Ill give you the night to consider your options.”

    The doctor comes back the next day, “So, have you spoken with your wife?”

    “Yes I have,” says the man.

    “And has she helped you make a decision?”

    “Yes,” says the man.

    “What is your decision?” asks the doctor.

    “We’re getting a new kitchen.”