"A journey of a thousand miles begins with a single step" - Lao Tzu

I've been wanting to record and share our journey for a while now but haven't know how. A big part of me has felt that it's Alba's story, and not mine to share. But it is mine, it's ours as a family. I don't have to disclose every private detail, but now feels like the right time to let you in to our world, our daily reality. Partly as a way for me to offload, a way for us to update family and friends, and hopefully a way to connect with other families going through similar things. From the moment we accepted that Alba was delayed in her development, I've felt alone. I have an incredible support network of family and friends, and of course Dan. But nobody else apart from him who really understands, nobody to say "I feel like that too". To be able to offer an ounce of solidarity and safety to someone on a similar journey, to make them feel less alone would be a wonderful thing.

I've not decided to write to be all doom and gloom or to ask for pity. I want to educate. I knew very little about the SEND (Special Educational Needs and Disability) world before all this began, so I can bet many of you don't know a lot either. I still have a lot to learn. As a society we are not inclusive, and it's not okay. Unless you're exposed to a life different to yours, you've got absolutely no idea what others are going through. I know some of our friends know a bit about Alba, probably that "she's a bit behind". Some even say "she'll be okay, she'll catch up", or reel off stories about their cousin's son who didn't walk until he was 2, but he's fine now. I know it all comes from a good place and these conversations are uncomfortable, but I can tell you now it means a hell of a lot more to hear "that sounds really shitty, how are you guys?". Our reality is that Alba probably won't ever catch up with her peers. We don't know how long it'll take for her to gain the strength to stand and walk independently. We don't know if she'll ever be able to talk. It's looking more and more likely that she won't go to a mainstream school. These are all still 'ifs' but they're also still possibilities.

If you're here because you know and love us, or because you're curious and don't know how to ask, or if you've never met us before but have a link to a child with additional needs, thank you for reading and being open to learning. I want to use this as a way to communicate with you all, keep you updated and share the reality of life as an SEND family. It's not all bad and ugly, we have a lot of laughs and I cannot express how much joy Alba has brought to our lives. Her smile just radiates love and pure happiness, she is our little Queen.

Where we're at...

My pregnancy was very uneventful. I had some nausea for the first few months - which wasn't helped by 8am bakery starts at work - but aside from that my 'symptoms' were minimal. I actually quite enjoyed being pregnant. I'd hoped for a water birth at our local birthing unit, but was realistic about birth plans and knew anything could happen. Labour turned out to be long, and 3 days later Alba was born via force delivery in Gloucester Hospital. We transferred back to Stroud Maternity Unit for some R&R before heading home. People talk about that new baby bubble, and I really look back on this first couple of weeks with such love and a real fuzzy feeling. We had visits from close family and a few friends which at the time felt a bit much, but looking back I'm so glad it happened. Alba was born on the 22nd of February, so at just a month old when we were thrown into the first lockdown. That first couple of weeks was great - Dan worked from home so was on hand to help me out and steal extra snuggles with Albs. We enjoyed the spring sunshine and spent many evenings out on the patio soaking up the evening glow. But soon the novelty wore off and we longed for support - both emotional and physical - from our loved ones. Looking back I'm sure we aren't the only ones who now wish we'd broken the rules and stayed connected to our families.

Maternity leave was not what I had imagined, but I had a lovely group of Antenatal buddies to offload on - we shared laughs, tears, midnight feeds, nap time breakdowns, explosive nappy photos and there was a general sense of togetherness that we were all surviving this shit show together. Alba was such a happy, chilled baby but naps were never her strong point. Reviews were done over the phone, she wasn't weighed for months and our rare outings were to the GP for her jabs. We started weaning Alba a little early as she was showing all the signs of being ready - she was interested in food, could bring her hand to mouth and could sit without support. She began babbling and copied a few animal noises - an elephant was her fave. She loved the bath and listening to Dan play his guitar.

When we were finally able to start going to the much anticipated Mum and Baby groups, I began to notice the other babies were doing things Alba wasn't. Even some younger than her. I just put it down to her being a lockdown baby and not having older siblings - ignoring the fact that most of the others were probably in exactly the same boat. First birthdays were approaching and the antenatal bubs were all crawling, some beginning to find their feet. Alba would happily sit in the same spot, blowing bubbles and giggling at silly faces. At her 12 month review I remember the health visitor telling me to try putting toys out of reach. I tried it many times but she'd often end up pulling off her sock and playing with that instead. She was 15 months before she properly started rolling and eventually crawling. I think we knew at this stage there was more to it than just being a bit behind, but neither of us would admit it.

The googling began and I gathered that there's not much intervention before 18 months. I gave myself a deadline before taking her to the GP, trying to convince myself that things would all pick up within a few months. They obviously didn't and we had our first trip to see the GP. Refferalls were made for sight and hearing tests, physio and an appointment with a paediatrician. The GP was an absolute gem and still today she has been our most consistently helpful and supportive medical contact. We were told that often development delays can be down to hearing or sight difficulties, so we convinced ourselves this was the case. Although we did feel sadness at the thought of Alba having to wear glasses and/or a hearing aid, and being teased at school. How trivial this now seems. What we would give for her to just need a pair of glasses and tolerate a bit of childhood teasing.

Sight and hearing came back fine (she will need glasses at some point but mostly down to family history). We started physio and found out Alba is hyper mobile. Her joints from the hip down are very flexible, meaning they require extra muscle strength to counteract the wobble. She has low muscle tone, but we've been reassured it's just a matter of time until her muscles build up the strength require for her to walk independently. I remember thinking perhaps the lack of movement was the reason for the rest of her delays - maybe if she was able to explore the world she'd suddenly start taking it all in and evolve into a 'typically' developing child.

We waited 4 months for our paediatrician appointment. We were told that they wanted to run some blood tests including genetic screening, and they'd book her in for an MRI. Various other referrals would be made, and they'd see us again soon. I've dumbed down this visit for now - but we left that office feeling a bit confused, shaken and upset at finally acknowledging the fact something wasn't quite right. As with anything unsettling, its one thing holding it at the back of your mind, but its a different ball game hearing it come out of someone else's mouth, especially a professional.

Another 2 month wait for the blood tests (after chasing the Paediatrician to find out the referral had never been made), only to be called that morning and told they didn't have enough staff to see us. Another week of calling everyone and anyone I could think of to help - we had waited almost 6 months for these blood tests and it was agonising, not to mention the anxiety bubbling up at the thought of having to hold Alba still. We lucked out with a cancellation appointment and Alba was a superstar.

To cut a long story short, we have only just this week had the results of those bloods that were taken at the end of March, and are still waiting on a second round that was taken in May. They've also now taken blood from me and Dan for further DNA screening. I'm not going to go into too much detail right now, I think we're still processing the appointment. Essentially we still have no answers, 9 months down the line. We know this is a long process and we may never get a diagnosis, but the frustration and limbo of not knowing is torturous. We've both learnt that cracking on with life is a better option than dwelling and constantly questioning, but it's not possible to always stay so positive. When I was pregnant the one thing we were adamant we wouldn't do was to compare the baby to others. But I can tell you now that it's IMPOSSIBLE not to when your child is a million miles away from their peers. Meeting up with friends and kids of the same age just highlights how far behind Alba is, and then the sadness of what she's missing out on sets in, and the realisation that there's a possibility she may never do those things. She cannot talk, pays little attention to toys, doesn't really 'play' and cannot yet stand or walk unaided at 2 and a half years.

But I'd like to finish on a positive note. Alba's making slow but steady progress with her walker from the physio. She loves to toddle along the canal path, stopping to watch the leaves blowing in the wind, or the ducklings swimming through the reeds. Her smile and giggle is totally infectious. I know everyone says that about heir child but really, she beams out her glowing Alba rays to everyone she meets. She's a real people person and a little social butterfly. She farts like a trouper, loves tumbling around on the bed, is a fiend for cake and chocolate (not that she has it often!) and is an absolute Gruffalo addict. Alba's happy, chilled, cheeky personality really makes all of this easier to deal with. She has brought so much joy and love to our lives. We know we've got one hell of a journey ahead of us, but we're in it together and feel so lucky to have so much love and support around us. We have good days and bad days, and the bad days can be dark. But for now we continue to celebrate the small wins and make the most of the good days. Life could be a whole lot worse.

You do you, baby girl.