Unchosen Journey

Sometimes, we do not get to choose the journey.  Instead, the journey chooses us.

The most intricately designed plans are not always carried out as envisioned.  Sometimes, curve balls are abruptly hurled at us, knocking us off course.  Our plans become forever changed.

My family’s journey swiftly changed when we received my son’s Autism Spectrum Disorder diagnosis.   Months later, we would meet another bend in the road, with the diagnosis of my daughter’s rare genetic disorder.  Then, came Epilepsy.  Processing your child’s diagnosis and learning that his or her life will be filled with challenges feels like being placed on a confusing detour from your intended path.  It throws you on a scary, unknown, and indirect course.

A line from one of my daughter’s favorite books hits this fact home, every time I read it aloud.

“Roads…bend.  Detours head where you wouldn’t expect, showing you various ways to connect.”

Thinking back on the early days of receiving our children’s diagnoses, and seeing how far we’ve come, I realize now that the journey we had originally planned was simply not the one that we were destined for.  Over the years, I have found that the experiences of other travelers, parents of children with disabilities and special needs who were similarly detoured, have helped us pave our way.  They have made our expedition a bit less lonely.  If I could reach out to parents of a newly diagnosed child, I would share advice that has assisted us in navigating our travels.

Take time to grieve.  None of this is easy.  Your whole world has been turned upside down. Cry.  Grief will likely revisit you from time to time in waves.  Allow yourself ample time to grieve.  Let yourself feel it.  You will stand stronger once it recedes.

Locate resources.  Reach out to every single resource available, without hesitation.  There are abundant programs out there to help secure supplies, therapies, equipment, and more, to help you maneuver this path.  Never feel guilty in requesting all the benefits and supports that are needed to help your child thrive.  Your child requires more.  You are not asking for too much; never let anyone make your feel that your child deserves any less.

Find your tribe.  Doctors are not going to necessarily be the experts on your child’s diagnosis.  Parents that travel the same path as you will be.  Soon, YOU will be.  Reach out and locate support groups.  Online support groups, often specific to your child’s diagnosis, are out there and they can be a godsend.

Extend yourself some grace.  Do not be too hard on yourself.  This job is exhausting and wonderful and demanding, all at once.  It can be mentally and physically draining.  Most people can’t begin to grasp the depth of that.  You are giving all your best for your child; you are enough.  The love that you pour into caring for your child will be unmatched.  Remember to give yourself a break.

Become an advocate. Never be afraid to stand up and fight for your child’s rights.  Arm yourself with a wealth of information on your child’s diagnosis.  Educate others and never back down when you are challenged.  Speak up when ignorant comments are uttered in your presence.  Don’t be intimidated; be prepared to bravely go to war on every front, for the one you love so fiercely.

Share with other parents.  If you feel compelled to do so, share your story with others in your shoes.  Someday, the telling of your journey could be a ray of hope for another family.  By imparting knowledge and bestowing compassion, you can greatly help others standing at the beginning of their own detour.

My husband and I have embraced our journey.  We are not perfect parents, or by any means “special” parents.  Over time, we have simply transformed into the parents that our children need.  We stumble.  We fall.  We brush ourselves off, get right back up and begin again.  Trial and error, love, tears, hope and perseverance have been integral components of traveling this road.

We dedicate our lives to being the best versions of ourselves for our children.  To the parents of a newly diagnosed child, you will do the same.  This journey that has chosen you is not an easy one, but it will be amazing.  It is yours and it will bring out the very best in you.  Remember to slow down and take in all the beautiful and unique sights you will encounter, every step of the way.

How to Have a Memorable Staycation

It happens to me every year. I’m not a huge traveler, but the summer months give me the itch to get away.

This year, the feeling is no different, but the options couldn’t be any more different. In years past, we could search for some good hotel deals or an Airbnb. This year, our concerns for our safety, especially the safety of our medically complex two-year-old, led us to decide that it wasn’t really worth it to take the risk of a getaway.

This year probably won’t be the only time we staycation. Money, time, and health all play big factors in being able to physically get away. Instead of allowing the lost adventure to get us down, we planned a silly staycation this year to give us a bit of a change of pace.

Day 1: Camping

To start, we bought a cheap tent on Amazon and borrowed an air mattress. On the first day of our “getaway,” we set up the tent and filled it with cozy blankets and pillows. We spent the day going for walks and bike rides and playing outdoor games.

For dinner, we made campfire nachos and smores. At bedtime, I set up my phone for a movie, and then it was lights-out.

The best part of this backyard camping trip? Mommy got to go inside to sleep when a certain little one was hogging the bed. 🙂

Day 2: New York City

We woke up in the tent and “headed off” to New York the next day. We set up a little pretend airplane trip, complete with peanuts and pretzels (and, another perk, much shorter than your typical plane ride).

After “landing” and some freetime, we headed to a Broadway show by watching Hamilton on Disney+. (There are lots of other Broadway shows available to stream online if you would like something without the questionable language. :))

Dinner that night was New York-style pizza (my first time trying homemade crust!) and New York cheesecake (store bought).

Tips for a Memorable and Fun Staycation

.  Think about what you love about vacation and try to recreate it at home. For example, if your favorite part of vacation is long, lazy breakfast and coffee out on the balcony, set up a comfy spot in your yard or on your deck to do the same. If you love to hang out by the pool, get your swimsuit, towel, and chair ready…even if it’s inside!

.  Don’t allow your mind to go down the “it’s not going to be the same” road. It doesn’t need to be the same to be a wonderful family memory!

.  If you hate cooking, don’t cook! You can find similar foods that set the mood for takeout, or do some pre-planning and order to have something shipped to your home from a favorite destination restaurant.

.  If you love the unique foods you get while traveling and don’t mind cooking, search for recipes and plan ahead of time so you can get groceries in advance and don’t have to worry about taking trips to the store while you’re staycation-ing.

.  Try your best to unplug and soak in the quality time with your family.

.  At the same time, don’t get too focused on the rules or getting certain things accomplished. As long as everyone is enjoying their time together and having fun, you’re doing a good job!

You Are Not Alone

There has been a huge push for mental health awareness in the past few years and rightly so. It’s important to recognize the internal and hidden battles that people face. We can’t possibly know what it is like to be in someone’s body. They may look totally fine on the outside. They may even tell you they are fine, but they could be battling something very hard.

I am a part of many special needs groups in my community. I see mental illness come up on occasion but I don’t think that it is talked about enough.

Having a special needs child comes with its own unique challenges that is different than raising a typical child. Raising children is a challenging and exhausting job. Raising a special needs child is especially challenging emotionally. If you throw in a traumatic birth, pregnancy or NICU stay, then parents are facing even more challenges.

I have written about this before and many of you know of our story, but I will give you a short run down if you haven’t read it before. Sawyer and Quinn were born at 27.2 weeks and were in the NICU a combined 154 days. During that NICU stay they faced many challenges. Each of them became gravely ill and were given small chances of survival.

There were days that we did not know if they would survive. We were forced to make quick and lifesaving decisions on many occasions. At one point they put us in a hospital room and told us not to leave the hospital. Once both of the kids were on their road to recovery and it looked as though they would make it I began having nightmares. I had horrible nightmares and would wake up scared to go back to sleep.

This is how my PTSD diagnosis came, thankfully a nurse saw the signs.

PTSD can come out in many ways. For me, I began having nightmares and was unable to sleep. I was having anxiety during the day and felt like I was drowning. This is common with PTSD and we see it too often in the NICU. I know since then I have been unable to shake the symptoms. I will get to a good spot and then something will come up medically and cause nightmares and anxiety again. I have found the perfect therapies that help me (blogging being one) but each person is unique. What works for one may not work for another.

Parents of children with special needs can go through a grieving process. For me, it is when Sawyer is surrounded by children his own age. I notice the differences and think of what could have been. Did I ever think that my child would need a stair lift? Wheelchair? Speaking device? Feeding tube? Absolutely not. It can be a tough pill to swallow some days.

Thankfully I am able to prevent myself from spiraling out of control. I snap back to seeing what I do have. I focus on the life before me and the joy he brings. He has accomplished so much and he is ALIVE.

I feel fortunate that I have this ability and the help to keep from spiraling but it is easy to get sucked in. I know that I am not alone in this process. I know that YOU are not alone. Many may be feeling the same way you are and there is no reason to be ashamed. Reach out to someone to talk, email me, or talk to a doctor. There is nothing to be ashamed of feeling the way you are.


Same Old Story

My daughter Lilly had an appointment with her new pediatrician the other day, and what would typically be a 10-minute appointment took twice as long because I had to explain what exactly her diagnosis was.

I should say “our diagnosis” because both of us, as well as my youngest son, have a very rare genetic condition called Oto Palatal Digital Syndrome. It affects less than 1 out of every 100,000 people.

Because of this, I usually need to tell the same lengthy story to every new doctor or clinician we see, because we are always the first (and most likely the only) people they will see with this condition in their career.

Most of the time, I don’t mind. I love educating people, and what mom doesn’t like talking about her kids?

There are some times, however, when I start to feel like a broken record, such as during panel appointments, where we see a revolving door of clinicians and have to tell the same old story multiple times, to numerous people, for hours. When you have to give a detailed medical history for the 6th time, after waiting in a small exam room with two kids who are just over it and want to go home, it gets a little weary.

Sometimes I’m not in the mood to educate people, such as the many times I’ve had to bring one of the kids to the emergency room for one reason or another. It’s pretty much guaranteed that whatever doctor we see will have never heard of OPD.

After a couple of late-night  E.R visits (because of course, that’s when most of our emergencies happen), and trying to give a crash course in “OPD 101” while sleep-deprived, frazzled and worried,  I started printing off information about our condition and handing it to whatever doctor we were assigned to.  That way, they could get accurate information, and I could focus on my kid.

As the kids get older, their stories get longer and more complicated. As a parent of children with multiple medical issues and diagnosis, it’s hard when you feel like you have to be on “educate mode” all the time, especially if you’re feeling like a hot mess at the moment. Still, I will always do the best I can to advocate for my kids and enlighten others no matter where I happen to be.

It’s Ok

Life is a beautiful thing. It is also really, really hard sometimes.

My family has been more familiar with heartbreak the last six months than I would have hoped. I could list dozens of trials and aches that have come our way recently but the raw truth is that I am still far too deep into things to even talk about most of them yet.

On top of some incredibly heavy personal situations and struggles that surfaced, we have found ourselves white knuckling our way through some very stormy waters alongside our multiple children who have disabilities. We have come face-to-face with several new diagnoses, scary and painful changes in health, and debilitating behavioral struggles. It has been an excruciatingly lonely and hard few months as we’ve lived these experiences within the walks of our home in the midst of a global pandemic.

My entire life, I’ve never been a stranger to hardship or loss, but the last six months have taken the experience to a new level. There has been depression, anxiety, anger, and heartache. Life is hard. Being an additional-needs parent is really hard.

The conclusion I’ve come to is this: It’s ok.

We can get so addicted to comfort, to things being easy. We don’t know how to do hardship well. Maybe that is why becoming a parent to a child with a disability is such a hard thing for so many people. Even though that child will bring a million kinds of beauty with them, there will also be heartache and adjustment and maybe even pressure from the outside world to appear in the midst of it all like we have it together. But honestly: It. Is. Ok.

It’s ok to be bad at hard things. It’s ok to feel angry. It’s ok to self-isolate because one simply cannot deal with the small talk or questions or comments. It’s ok to feel depressed and not get out of bed sometimes. It’s ok to tell people you don’t want to talk about it. It’s also ok to tell them when you do want to talk about it, and you need them to just be quiet and listen.

Therapy is ok (and wonderful). Medicine is ok. Simply shutting the world out for a while is also ok. It’s ok to need time to process alone or with others. It’s all ok. More than anything, it’s ok to not be ok.

As caregivers to people with additional needs, our plates are fuller than most. When life blows in the storms that catch us off guard and knock us off balance, we may be more prone than others to finding ourselves barely treading water. We might not know the best course of action. That’s ok.

We may not know right away what the best next step is. We might not know how to share what we are going through or how to ask for support. That’s ok. Moment by moment and day by day we somehow carry on. And someday, we will have the incredible privilege of standing tall, looking back, and saying, “I survived that” as we trace the rainbow through the storm.

Press on in faith, friends, even if you are limping. It’s ok.

I’m Sorry

I’ve learnt an awful lot on my parenting journey so far. I’ve learnt skills I thought only nurses needed, I’ve learnt more medical terminology than I ever imagined my brain could absorb and I’ve learnt what it really means to be strong.

Every day brings new challenges. Some big. Some small.

I find myself learning new things all the time. Every week brings new realisations. Some weeks bring sorrow. Many weeks bring hope. Occasionally some days bring joy.

My most recent realisation and one that has hit me particularly hard is the number of times I find myself apologising to my child on a daily basis. To hazard a guess I’d say I apologise to him at least 30 times per day. Imagine apologising to your child more times than you tell them “I love you”. I apologise for so much that happens to him that is completely out of my control. I apologise for the discomfort he experiences daily, even if some of it is to aid his relief.

I apologise when I have to suction secretions from his nose and mouth for the fifth time that morning. I apologise when I’m stretching his stiff and dystonic limbs in order to try and bring them into a more natural position, if only for a moment. I apologise when he suffers his 20th seizure that day and I’m completely powerless to stop them. I apologise for changing his nappy as the position I have to hold him in to clean him properly brings him temporary discomfort. I apologise as I place him into his chair, car seat or pram as there is a limited range of movement in his hips and it is uncomfortable for him when I sit him down. I apologise as I strap him into his shower seat as his trunk and head control is almost non-existent meaning he needs to be fully supported during the simplest of tasks.

The word sorry seems to roll off my tongue more than any other word in the English language when I’m talking to my child. I imagine I probably don’t even realise I’m doing it half the time. Occasionally though, there will be times that tears will be rolling down my face as I stand by a distressed Jaxon, apologising profusely for his ongoing battles.

I’ll pop on my medical hat and run through the long list of what it could be this time causing him to be so unhappy, feeling like a failure as one more I can do nothing but apologise again as I wait for him to become so exhausted he falls asleep. In that moment he has relief from the pain and I can relax, I’ll bend down to him and whisper “I’m sorry” into his ear as he sleeps peacefully.

When I first met Jaxon at eight hours old when he was wheeled into my side room on the postnatal ward before being transferred to another hospital, the first words I said to him were I’m sorry. I was so terribly sorry for the fact he’d had to endure a prolonged resuscitation and that his prognosis in that moment was terribly bleak.

I was sorry that his start in life was worlds away from the one I’d dreamed of when I was carrying him for over nine months. I was sorry that at only a few hours old, he’d suffered more than many suffer in an entire lifetime. 

There is nothing worse than knowing your child endures extreme pain every single day of their life. It’s my heart-breaking reality knowing that, as his mum, I am totally incapable of making it all better for him.

Possibly the most difficult thing to accept is that Jaxon has very little understanding of what I’m saying to him. Partly due to his age but most probably largely due to his brain injury. He doesn’t understand that when I’m stretching his joints it’s for his benefit, to prevent contractures and further discomfort later on in his life.

He doesn’t understand that the pain he suffers on a daily basis I can’t do anything to prevent. He doesn’t understand that we are trying so desperately hard to successfully treat and fully alleviate the seizures he has to cope with every single day.

I can only hope that he knows how deeply loved he is by everybody around him, none more so than me. I hope he is able to feel comforted when I’m telling him how incredibly proud of him, I am and how much I adore him. I hope one day he’ll understand that if I was able to switch places with him, to give him a life that he fully deserves and all the lovely things the world has to offer, that I’d do it in a heartbeat.

Mum-Friends: Can we ever be compatible with ‘regular’ mums?

We shared antenatal classes and birth stories. We had it all perfectly planned. Our babies were going to be best friends forever.

We both struggled at the start; but you could see my troubles were more than just new baby anxieties and my hospital appointments were more than just precautionary.

You watched me struggle and held my hand. You dealt so sensitively with the obvious differences between my baby and yours. You were by my side as I cried inwardly at baby groups, you took him from me to give me a break, you played with him and talked to him like he was really special to you. You showed compassion when I was weak, and protectiveness when I was faced with difficult social situations. You cried with me when I talked about the latest hospital appointments.

You hugged me the day of diagnosis. You helped me through those first few days and weeks, and reminded me of how awesome he is and how that will never change. You researched his rare condition and gave me insight and useful resources.

As friends drifted away you remained steadfast. You wanted your own child to be an advocate for mine even though they were still only toddlers. When your child was the target of an overzealous hug or a flying toy you made light of it. When your child recoiled from his approaches, you encouraged him to be patient and understanding.

You talked to me about your own problems, the things that were petty to me but to you were your world. You knew that was what I needed; a life-line to normality. Like school catchment areas, potty training, and pregnancy with a second child.

You showed understanding if I was too emotionally drained to come out on an evening as planned, and told me not to worry. If a family day out was becoming chaotic, you were the one to turn it around and keep the little ones happy.

When people further down the path told me that as a parent of a disabled child I’d end up with just special needs parents as my true friends, I didn’t believe this would be the case for me. You were my exception that proved the rule.

You invited my child to birthday parties even though your child probably wouldn’t have put him on the list. You knew it was special to us because we rarely received invitations and even though we were anxious to attend, you reassured us. You made special provision for us.

You didn’t mind when my child broke the picture frame in your house, the remote control and the vase.

I became close to your family.

You defended me to people, and my child to other children.

As more ‘regular’ friends drifted away you remained – you fell more into the background but still close. You naturally accumulated new friends, with their regular children, and then more new friends, with the birth of your second child, then more new friends, in the circle of school mums. I was accepting of the natural drift but still believed we had a tight bond.

It is a fact of life that friendships are fluid: life changes, our children change, and we change.

Nonetheless, it was a painful realisation that things had clearly changed, and would never be the same again between us.

Only now, looking back, I am able to distance myself and resist the feelings of blame and accountability.  You were fully entitled to allow your child to choose who to invite to his parties.  You were fully entitled to choose not to invite us to events you were hosting, even though you knew that I’d hear about them from mutual friends.

You had very good reason to tell mutual friends that you thought I was unreliable, flaky, and that I cancelled too often.  It was the truth.

I muse over other underlying reasons, trying desperately to rationalise the last few years.  Have I become so child centred that I am no longer worthy of friendship? Is it the incompatibility between our children that drives you to not want to enjoy family time together? Did I do something, say something, to offend you?

I tried to salvage the friendship and I picked up the phone. We met for lunch and it was nice. That was six months ago.

Friends come and friends go. But I thought you were here to stay.

I always felt I could talk to you about anything. Not anymore. So, I wrote this blog instead.


To Everyone Involved in my Daughters Care

To those who have worked with or work with my daughter with complex medical needs.

I never wanted to meet you. In fact, prior to having our daughter, I likely had no idea your particular profession existed. Or if I did know, I probably naively presumed that it was never something that would be relevant in our lives. Yet now,  I have a tremendous admiration, gratitude, and respect for you. Thank you for choosing to make your life’s work about maintaining and/or improving the quality of life of my amazing little girl.

I am guessing in your line of work you deal with budget restraints, being overworked, long clinic hours, long waiting lists, vast amounts of admin, probably even people being verbally, maybe even physically abusive towards you. You will see and hear some heartbreaking things. You’ll have your ethical, moral and political views in a permanent state of turmoil as you watch how the system can so often fail families like ours.

You’ll probably feel moments of immense pride and joy when you see things go right, when you see a family get that adapted house they so desperately needed for so long, or when that child’s surgery is a success and makes life much nicer for them. It must be hard when you get home to switch off from all of that, and I know that because I’ve seen the intensity that comes with being a parent to a child with complex needs. It’s 24/7.

You’re working with a community of parents that are both huge experts, but equally overwhelmed and at your mercy.

You may think we are difficult, pedantic, impatient, bossy, neurotic, forgetful, over emotional. We likely are. But this is no reflection on you. We may not always be the easiest to work with, but actually it isn’t easy living our lives in a fishbowl for all to see. It’s hard. We deal with some deep stuff, and on a daily basis.

We can tell when you are working WITH us. We don’t want to work against you, we don’t want you to work FOR us.. We want to work as a team with a combined mutual interest in helping our child live the best life possible. We can tell when you are doing this and I am always grateful for it. Being listened to is so important to us, we know when we are being dismissed, or lied to, or if a decision was pre made without our involvement. We need inclusion as much as our children do. You’re our lifeline.

If you’re spending time alone with my child, I love a good handover. Amy can’t tell me about her day. Sometimes I wish she was wearing a secret camera. Just so I can see how her life looks when I’m not there. So I can see all interactions, challenges, and special moments. I know it must be tiring giving constant feedback, but you’re acting on behalf of my child and it means a lot to us to know how their day was. If they liked a certain song. If they had a nap. If they had any discomfort.

There are certain people that I have met over the last 6 years that I can’t bear the thought of not being in our lives.

They are a vital cog in the overall system of our lives. If they are missing, the replacement might be nowhere near as good.

It has been a strange learning curve for me… being ultimately forced to have a large team of people being so heavily involved in yours and your child’s life. Some of these people feel like a friend – but they aren’t a friend as there is a professional barrier there. And it’s a strange and delicate balance.

We recently got a new pediatrician. Initially I felt like my world had fallen apart. The news hit me out of nowhere. This is a person that has known my child since day 1. Every single that has happened in her life, this person has overseen this and felt like my stability guiding me through it. Obviously people change jobs, people move on. But for me it is hard to accept.

If someone gets to know my daughter, and they understand her and everything she has endured and overcome – I never want them to leave our lives. Not enough of the world understands disability, or complex health needs. To these people in our lives, we are normal to them. And they are our normal. And when that normality goes it can be a shock to the system.

I am the same if a carer leaves, or a nurse we really like and so on. They mean so much to us.

There was a person in Amy’s life near the start that if I had any issue she would listen (important!), take the details, offer me a drink (didn’t need to ask how I had it) and would go and help fight our corner.

They were one of a few people I felt I could reach out to at a time of feeling overwhelmed or vulnerable and know that they would only bring positivity and calmness to the situation. I hope that these people know how eternally grateful I am and that in the midst of all of their chaos that their field of work brings – what they do matters and does make an impact.

More recently, someone I admire has retired. For months I have joked “you can’t leave us” whilst internally thinking “no really.. Please… don’t leave us. You’re special to us, you’re not like some of the other people we have dealt with, you really do care and you GET us…”

We used to have portage come round. (for those who don’t know, portage are a home visiting educational system, they work with children through play.) Our portage person retired but I will never forget them. One of the first things she said to me was “we look at what the child CAN do, not what they can’t”. And “If you judged me on my ability to speak Mandarin, you wouldn’t think me very intelligent… you need to look at what someone is passionate about and likes and work with that”.

From thereon that sealed my belief that you ALWAYS assume competence. If someone has a physical disability and is non verbal you DO NOT write them off. She reinforced a lot of what I wanted to to believe and made it truer for me.

We had a nurse on the neonatal ward that told me to never stop speaking to Amy. At this time Amy was presumed blind and deaf. She told me never to give up. And that she would feel my love even if she couldn’t hear it. I think about that everyday. I get emotional thinking about it. Amy actually can hear – but I still firmly believe that no matter what her outcome had been, we were going to make her know how loved she is and how much she matters.

We have someone on our team now who says “how are you? And I don’t want the stock answer” because she knows that often us parents are overwhelmed, fed up, tired. She actually cares. And you can’t teach that. These people are real treasures. She knows I will say I’m fine even if I’m not. She’s probably seen it 100 times before and can see it in our eyes.

Often in life I can feel totally out of control. Not knowing just how “life limited” or “life threatened” Amy might be.

Not knowing if today will be seizures and tantrums, or laughter and joy. It should never be the responsibility of these people to be our stability, and I am learning that change is inevitable in every aspect of life. But I just wanted to make this post to let all people such as: carers, physiotherapists, speech and language, dieticians, nurses, complex needs co-ordinators, teachers, teaching assistants, school nurses, pediatricians, junior doctors, nurses, cleaners, secretaries, surgeons, sensory support workers, occupational therapists, delivery drivers, warehouse workers for our supplies, everyone – we see you, and we are so grateful.

Fundraising for her Independence

Fundraising isn’t something that is easy to do.

Asking people for money isn’t something that comes naturally to most people, but special needs children come at a massive cost. You want to give your child the essential treatment, therapy and equipment they need to give them a greater chance at life but are restricted due to the lack of available funding.

We made the decision to begin fundraising with Just4Children in December 2018 when we realised that Annabelle needed more treatment, therapy and equipment than what we could afford. Since our fundraising journey began, we have had family and friends join us taking part in sporting events, pubs run by family members holding charity events, various businesses displaying our donation tins and support from our local rotary club.

Our most recent fundraising project wasn’t about us doing a challenge or someone holding an event on our behalf, it was about ANNABELLE doing one herself.

Annabelle always sees her daddy taking part in sporting events and she loves cheering him on and seeing his medal at the end.

So, when we found an event that Annabelle was able to participate in, we jumped at the chance. Why shouldn’t she be given the opportunity to take part in an event! Between 15 June and 15 July Annabelle took part in the Superhero Series challenge and was able to raise money towards our ongoing fundraising for her Selective Dorsal Rhizotomy surgery which is not funded by the NHS for children with Annabelle’s level of cerebral palsy along the way.

The event involved her walking and cycling and impressive 20km over the course of the month. This may not seem like a big challenge, but for a little girl, only three years of age, who cannot sit, stand or walk independently it was a tremendous challenge for her!

The effort she had to put in was on another level but to see the pure excitement on her as she finished the event outside of her nursery where her friends were waiting and chanting her name as she crossed the finish line and receive a medal for her efforts was incredible. We could not be prouder of her determination and courage at such a young age.

Whilst our fundraising journey continues, Annabelle’s challenge has helped get us that little bit close to getting her the operation she desperately needs. The self-funded surgery, will involve cutting the sensory nerve fibres which are sending incorrect signals to her brain, followed by intensive physiotherapy to help to reduce the spasticity in her lower limbs and give her a greater chance of independence.

Fundraising isn’t easy but how can we deny our precious little girl of this chance…. we CANNOT!