Anne D.

@anne-d | contributor
Mykidlovesbroccoli.wordpress.com charts the journey and adventures of Hannah, who has a rare genetic syndrome called Cornelia de Lange syndrome, but whose favourite food is broccoli (hence the title!) and the experiences and observations of her extraordinarily proud mama – who isn’t a writer by any means, but just wanted to “have a bash” at blogging.
Anne D.
Anne D. @anne-d
contributor

Cornelia de Lange Syndrome: Advice for New Parents

Following my daughter Hannah’s birth, I was strongly advised by a doctor not to Google anything. Hannah had a plethora of medical issues, and there was speculation they were linked to a syndrome. Frustratingly, no other information was forthcoming – aside from the usual stuff we parents of children with additional needs often hear, such as “your child may not walk, talk, hear, see,” etc. So what did I do? I completely ignored the “advice” and I Googled. Of course I did; who wouldn’t? In fact, I Googled until my eyes went all fuzzy. I typed in every single medical word that’d been said to me over the previous few weeks (and, believe me, there were a lot!) and three distinctive rare genetic syndromes kept coming up time and time again. Then, when I looked on Google images, I could clearly see Hannah’s developing features in the faces of some of the other children… especially children with one particular syndrome. It didn’t take a rocket scientist to know that this was, most likely, going to be Hannah’s diagnosis. …and that scared me. So when I sat in the office of the Genetics Department and the Professor confirmed Hannah’s diagnosis of Cornelia de Lange syndrome — the words I didn’t want to hear — the room closed in on me. I thought I’d never breathe out again, and that I’d most certainly never smile or laugh again. Even though, for me, it was important that Hannah received a diagnosis, it was physically and emotionally painful to hear. It was completely overwhelming and it felt like both our lives – now so inextricably linked – were over. It felt as if we were destined for a life full of cold grey skies, without any sunshine. I can categorically say that was one of the worst days of my life, and the memory of it is still very vivid over six years on. All those web pages that I’d pored over seemed to paint a pretty scary picture, and didn’t give me any glimmer of hope for the future. I really needed something, anything to hang onto. I didn’t particularly want to read about the gloomy, scary stuff, but I wanted to read the facts. I’m from the forewarned is forearmed school of life. I also wanted to read about what I could do and what, perhaps, not to do. What to look out for. What therapies or diets might be beneficial. I wanted anything and everything. I also wanted some encouragement and optimism. I didn’t just want to read medical research, I wanted to read about life and maybe, a little bit of hope. Perhaps I just wasn’t looking in the right place. Two years ago, once our world had settled down a little and I felt ready to write, I set up my own blog.  I use it to chart Hannah’s journey, as catharsis for me and hopefully helping to reignite my sense of humor, but the core purpose is to try and give families that tiny glimmer of hope – something that I’d so desperately needed but didn’t find. So if your child has recently received a diagnosis just like Hannah’s, please hang on to this: Life may get pretty rocky and test you to your limits. You may have some overwhelmingly challenging times ahead where you’ll shed so many tears, you feel you’ll never get out of the darkness. You might feel like you can’t go on anymore – but if you can manage to change direction from the life you anticipated you’d have, ditch all those aspirations you had before your child was born, and buckle up for the ride of your life, you will get through it. Sure, you’ll have bad days — that’s natural, that’s life! — but you’ll hopefully become stronger than you ever imagined. You’ll be thrown into a whole new world that opens up different opportunities and experiences. You will breathe and smile and laugh again. You will have fun. You can have a beautiful and enriching life with your child — you just need to look at life from a different perspective. And remember, you’re not alone. There’s lots of us out here on our own journey, who have an understanding of what you’re probably going through. Don’t ever be ashamed of asking for help, don’t be scared of expressing how hard this journey is, and don’t hesitate to reach out if you’re feeling lonely. I promise we’ll catch you. Follow Hannah’s story on My Kid Loves Broccoli. The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. Check out our Submit a Story page for more about our submission guidelines.

Anne D.
Anne D. @anne-d
contributor

How Our Lives Changed After This Photo Was Taken

They were happy back then and enjoying a relatively carefree life. Together for years but recently married on a whim, they could have had pretty much whatever they wanted, go wherever they wanted … without ever having to think twice. But look closer into her eyes, and you’ll see there’s something missing. Something that money couldn’t ever buy. It was something she so desperately wanted. She’d hidden the feelings so well that no one could have ever known. She never spoke about it, because it wouldn’t have made any difference even if she had. It was pointless. The medical profession had made things very clear: This couple would never be able to have a child. So they just got on with their lives and made the most of it, because that’s all they could do. They didn’t have many options. And life was good. However, little did they know that there were actually three of them in that photograph. Their little girl was waiting to meet them. The medical profession had got it so wrong. Several days later, they found out that they were going to become parents. To say it was a shock would be an understatement. So after a relatively easy pregnancy, Hannah arrived. Minutes later, their lives were flipped upside down and they were thrown into scary and uncertain world (you can read more about it here). Plan A would have been the usual scenario for most average couples enjoying the glow of an impending birth. After maternity leave, mama would go back to work, baby would go to the nursery and things would be relatively the same as they were before but with more responsibilities. There would be children’s parties to attend, ballet classes and sleepovers. There would be a quest to find the best education possible and to save up for college. Dreams and aspirations were now shattered into tiny pieces. There was no Plan B. None of this had been anticipated. So what happened next? Once life had settled down to their new “normality” (the word “normal” isn’t usually used in their house), they just got on with things and made the most of it. Nothing and no one could have ever prepared them for caring for a child with profound additional needs. It would put immense pressure on their relationship. This little bundle of gorgeousness would completely dictate their lives, probably for the rest of their lives. There would be no more going out for evening meals, and trips out would very much be limited. Finances would need to be reviewed. They would need to tighten their belts, but they’d always lived within their means anyway. There would be no ballet classes or sleepovers. But there would be different opportunities ahead. There would be no spontaneity whatsoever to do anything at all. Life would move at an entirely different pace … a very slow one. There would be no more drinking wine and listening to music into the early hours. Bedtimes were strictly adhered to because nasogastric feeds would need to carried out throughout the night. Because of the unpredictability of nighttime illnesses, sleep would become immensely precious. Every outing would be planned like a strategic military exercise. There would be no “date nights” because there would be no babysitters able to care for Hannah. Relationships would be strained because life would be cluttered with appointments, tests and meetings. There would be no emotional energy left to rekindle the relationship they once had. Any holidays would initially be on hold. Later, they would need careful consideration, and cases would be packed to cover every eventuality. When she looked in the mirror, she didn’t recognize herself. She had lost her identity, but eventually she got some of it back. Most conversations held would revolve around Hannah. They would both need to review how the family unit could function effectively and then try to muster some semblance of the life and relationship they once had. They’d learn very quickly who their true friends were and who they could rely on for support — and they were few and far between. They would see, with much sadness, other people’s relationships fall apart through the stresses and strains of caring for a child with additional needs. They’d prioritize their child. Nothing and no one would ever be able to sway them from that. Together they would make decisions and comfort each other on the dark days. No one could have ever prepared them for any of this and no one would ever understand unless they’d walked in their shoes. But they adapted, not just because they had to, but because they wanted to. And while their lives have been flipped upside down, their hearts almost broken several times and their previous life now unrecognizable, we are still happy now and we make the most of the time we have with our extremely precious and inspiring little girl. The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post tocommunity@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to help celebrate the human spirit? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

Anne D.
Anne D. @anne-d
contributor

The Promise I Made My Father Before He Died

We sat next to each other on the sofa, holding hands. “Whatever you do in life, Princess,” he said, “just do your best.” I assured him I would. I think we were both sure that this would be the last time we would be together, and every second of every minute mattered. We were lucky that we got the opportunity to say all we needed to say to each other. Others don’t get that chance. I never forgot the promise I made. I was (and still am) determined to fulfill it. That was the last time I saw my daddy alive. My daddy. My hero. He lived courageously and with great dignity for the last 12 months of his life after being diagnosed with oesophageal cancer. He was only 54 years old. My daddy, taken away far too early. Taken before he ever got the opportunity to know me as an adult and to know his only granddaughter. It just wasn’t fair. And it still isn’t. As time went on, I endeavored to fulfill my promise. Sure, I made mistakes along the way — plenty of them. But that’s human nature, I guess. I studied hard, graduated from university and became a professional. I got married and (eventually – long story!) had a baby. I wished he was here to see all of it. I wished he’d been at my graduation ceremony, to give me away at my wedding, to meet his only granddaughter and so much more. He would have been so proud — I have absolutely no doubt. He most definitely would have been the proudest Grandpa and probably would have spoiled Hannah rotten. But I think that’s somewhere in the job description of being a grandparent. I realize now, however, that while studying hard, striving to get a good job and so on, is all well and good, my biggest achievement was becoming a mummy. Add to this the title of “Special Needs Mama,” and this has become my biggest challenge so far. But it’s one that’s been worth flipping our world upside down for, even with all the stress, the trauma, the sleepless nights and everything else. Because I have my girl — my wonderful, precious, quirky, scrumptious kid, who makes my heart sing just to look at her. I make mistakes, but I’m just trying to do my best.  That’s all I can do. I’ll always cherish the time I had with him and I hope that wherever he is, he knows that I’m still trying and that he’s proud of the person I’ve become. You’re always in my heart, Daddy. The Mighty is asking the following: What’s a memory with a loved one that you didn’t realize meant so much until they passed away? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to celebrate the human spirit? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night.

Anne D.
Anne D. @anne-d
contributor

Cornelia de Lange Syndrome: Mother's Letter to Child's Rare Disorder

In “The Godfather: Part II,” Michael Corleone shares some wise words gleaned from his father: “Keep your friends close but your enemies closer.” Well, I’m keeping you closer. Closer than I’ve ever kept anything before. I’d never even heard of you, Cornelia de Lange syndrome, until five years ago when my daughter, Hannah, (and you) came into our lives. Ever since then, each and every day I’ve been keeping a close eye on you. I’ve probably read everything there is to know about you right now and, as a result, have been able to educate the professionals involved in Hannah’s care and put things in place to elude some facets of your persona that I can suppress – like ensuring she has a healthy, well-balanced diet. Sure, you’d thrive off junk food, but you ain’t getting it here at Broccoli HQ! As long as I breathe, I’ll never, ever forgive what you’ve done (and are doing) to my baby. You weren’t invited to the party, but you gate-crashed… and it looks like you’re here to stay. I want to make it clear to you that you’re not welcome and never will be. But while you crushed my aspirations, completely turned our lives upside down and almost broke my heart, you’ll never beat us. You’ll never have the upper hand. Because you’ve made me stronger than I ever imagined I could be. Initially, you tortured me and kicked me around until I felt I could take no more. Then, when I managed to come up for air, I got right back up and stared you in the face. Because this special needs mama never goes down in a fight. Not when it involves my baby girl. Once I’d afforded myself the time to grieve for the life I assumed we’d have, I now realize you didn’t ruin our lives at all. Bizarrely, you enriched them. I have a child. A beautiful, quirky, scrumptious kid who makes my heart melt every single day. A child who I never thought I’d be blessed to take care of. She is my love, my world. She completes me. I’ve seen this kid in her five years of life being put through stuff no one should ever have to go through. She’s been given so many labels: Cornelia de Lange syndrome, global developmental delay, hearing difficulties, no speech and extremely limited communication skills, a heart defect, a cleft palate, skeletal “abnormalities,” sensory processing disorder, autistic traits, self-harming behaviors – the list is endless. I won’t allow any of them to define her, because she’s a kid. In our world, kids are kids, regardless of whether they have a disability. While you affect Hannah in so many ways, you’ll never be able to take away her sense of humor. Sure, you stop her from speaking or sometimes communicating effectively enough to tell us how she’s feeling or what she wants, but boy, she’s funny. So funny. She has the potential to leave a trail of chaos wherever she goes. She’s defiant and a little bit naughty sometimes too. She sticks her finger up her nose when she’s tired, she blows raspberries and laughs when she farts… like kids do. Hannah has a zest for life that I’ve never seen in any other person. She’s fearless. She throws herself into every new experience with an enthusiasm that astounds me. She’s unforgettable – she doesn’t blend into the background – she makes her presence known. And wow, even though I’m her mama, I can’t help but mention that she’s so cute! It’s evidently clear that you’re not defeating her. For now, anyway. Five years ago, you threw us into a strange new world — a world that was initially pretty scary, without any blue sky. But it’s a world that moves at a much slower pace, one that allows me to notice all those little developments in Hannah that I may have just taken for granted otherwise. Through you, I’ve met some wonderful, beautiful, awe inspiring children — children who in their short lives have experienced far more than anyone should ever have to endure and, as a result, I’ve met (and become friends with) a whole load of other parents in a similar position as me. They made me realize I’m not alone. You helped me realize what actually matters in life. You helped me prioritize. Our lives may be affected by extra conundrums – more so than the average parent – and there’ll be days that will be challenging and stressful and downright frustrating, I realize now this world can be magical and beautiful at times. This world, our world, does have sunshine and blue skies. Sure, if I could find a cure that’d eradicate you, I’d do it in a heartbeat. I want the best for my baby. I want her to be happy and healthy. But as she grows older and transitions into adulthood, “happy and healthy” isn’t going to be enough; she has to be able to survive too. She has to be able to protect herself, and right now that’s something she can’t do. Right now, that’s my job. We’re on a journey, and who knows where it’ll take us. No one can predict it. But like the musician Edwyn Collins rightly said following his cerebral hemorrhage, “The possibilities are endless.” And I’ll continue to seek out opportunities that’ll enrich her life. Hannah’s path may not be an easy one, but hopefully she’ll have me to hold her hand along at least some of the way. And between us, we make a formidable team! The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.