Lynsey's Story

The sad but honest truth is that I’ve been grieving for my daughter ever since she was born.

At first, I grieved the child I thought I was having. Alana was nothing like the child I had dreamed about, she was constantly distressed, jittery, didn’t stop crying, couldn’t feed, was stiff and seemed like she was in a world of pain that nobody could get to the bottom of. I struggled to bond with her, she didn’t respond to me at all and was very unhappy and uncomfortable all of the time.

Post diagnosis, I grieved for all of the wonderful things that she will never get to experience; the things that make this rollercoaster we call life worth living– jumping on a trampoline, building a sandcastle, eating a big tub of pic n’ mix, learning to ride a bike, making friends, playing a sport, dancing, singing, travelling, passing exams, graduating, falling in love.

Now that I’m at the stage where I have more acceptance, I’ve started grieving for the eventuality of losing the child I love. I’m living with so much anticipatory pain. These overwhelming feelings usually hit me when we have had a good day and I’m putting my gorgeous girl to bed at night.

To keep it simple and avoid medical jargon, there’s nothing currently wrong with Alana’s body but because her brain is underdeveloped, it doesn’t send out the right messages, so her body and organs don’t know what they need to do. It’s degenerative, she is not expected to ever sit up, walk or talk, is registered as blind, and is unlikely to live past 10 years of age.

Alana is nearly 2 now and when she is well, she is in fact a very happy, giggly, smiley, beautiful little girl who loves nonsense; she responds really well to music, noises and touch and absolutely adores a cuddle with her nearest and dearest. Unfortunately, she picks up lots of infections. It is very rare that we have a week where she doesn’t develop some sort of bug, and when this happens, she really suffers more than a neurotypical child would. She still has a lot of pain that we can’t seem to get to the bottom of, so family life continues to be a struggle.

People sometimes tell me to enjoy the moment and live in the present, but when your reality is oftentimes not very fun and the future looks really scary, this sentiment loses its’ value.  I’m not OK, but I’m learning to live with not being OK.   

Ty Hafan respite is the only practical support we have received as a family and I’m really grateful to them for helping us.

These respite stays alleviate the feeling of not being able to cope. The hospice honestly feels like a holiday. The staff look after us just as much as they look after Alana! Ty Hafan has a contagious aura of serenity, waking up to a stunning sea view every morning, then popping downstairs in my PJs for a chat and a cuppa with the night staff; feeling refreshed after getting a full night’s sleep in a comfortable hotel-like room while the incredible carers and nurses have been supervising Alana. My gratitude extends beyond the care team to the chef, play therapists, complimentary therapists, and everyone else involved in running the facility. Being cooked for, eating uninterrupted meals as a couple whilst sat at an actual table like civilised humans is such a treat! When I stay at Ty Hafan, I enjoy spending quality time with Alana, taking her to the park, sensory room, and the hydrotherapy pool. The facilities are perfectly tailored to children with additional needs, providing an environment where they are able to thrive. For the duration of our stays, I don’t have to worry about preparing her food, administering her medication, and comforting her during her episodes of discomfort because I know that she is getting the highest quality care. So I just focus on getting some rest and ENJOYING her – which are two things I usually don’t have much opportunity to do.

As well as practical support, the emotional help I’ve received through meeting other parents at Ty Hafan has been great. Connecting with people who have been through the same thing is honestly the best therapy!

Receiving respite and being welcomed into a world where your circumstances are the same as everyone else’s is so important to families like ours. After a stay at Ty Hafan, I feel as though a weight has been lifted.

The warmup challenge

I am so blessed to have many amazing friends who have supported me throughout the last 2 years. 

On that note, my choir friends from Cor Y Gleision are joining me for a walk up Cadair Idris on March 26^th.
Myself, Meilyr, Carys, Gwenno W, Janice, Kath, Goody, and Gwenno D will be taking on this challenge to raise money for Ty Hafan, no doubt with a wonderful rendition of Calon Lan at the summit!

The main event

Along with 10 other Ty Hafan Mum’s I’ll be taking on the Welsh 3 peaks on May 7^th. We are all different ages, physical abilities and backgrounds but with one thing in common, we have all been supported by Ty Hafan and want to give something back. Some of us have children with life-limiting conditions, and others have had children who have sadly passed away, so we are all at different stages of our journeys. A wise woman once told me that you climb mountains with your mind not with your body and I just know that the mental strength of each and every one of these super women will get them through on the day! We will support each other through the preparation and execution of this challenge, and will hopefully be friends and confidants for life.

Why sponsor us?

So that Ty Hafan can continue to support families like mine.