When Lauren was very little her differences weren’t quite as obvious to me. I could carry her around no problem. Feeding her soft foods didn’t seem such a huge deal. Pushing her around in a pram still felt normal. Luckily when dealing with special needs (but this can be just as bitter sweet), not everything hits you at once. There are stages just like life with any child. My experience with it is that it comes in waves. Some are small, you feel them but they don’t leave such a mark on your heart. Others come so hard and fast and sometimes unexpected that they knock you over. They hurt and you can’t shake it off.

When Lauren was diagnosed with eye sight problems it knocked me over. It gets easier over time, and the fact that she’s doing so well with her vision helps. But I can feel those waves as if it was yesterday. I don’t compare Lauren to other children. I made that promise to myself for her a long time ago. This helps. In fact, I think it’s almost nice that she already has glasses when someone else gets them, and she can have that in common with them. She points to others’ glasses often, she relates.

When Lauren was diagnosed with Cystic Fibrosis, the wave came small, and kept coming, and suddenly there was the huge one. What the Hell just happened kind of shock wave. I cannot shake this one. It is my biggest mountain. This one will one day take my daughter away from, if statistics are anything to go by. This one I feel like I’m stuck in. It is so unfair 😦

When Lauren had to get Orthotic shoes. A relatively small problem, all I could see were the other children around in pretty shoes that matched outfits, with straight feet and the options of wearing and walking in what they want. She has so much to deal with, it’s just getting beyond a joke now, right?! This small ish problem still feels like a mountain to me-yet sounds ridiculous!

When Lauren doesn’t get to play with other children. She doesn’t understand that it’s too boring for them sitting and playing instead of running around. She doesn’t understand social cue’s and why others are a bit anxious, or wary around her. She desperately wants to run and play independently of adult supervision and join in the games. I think this comes second only to the CF for me, it’s so hard to watch. I have to remember children need to go play and do their thing. But I find it heartbreaking when in meetings at Nursery I’m told she has no friends. The truth is, upon leaving nursery she probably didn’t have any. Her cousins try but often leave her when they’re all together and forget that she just wants to be included. I have to remember this is just children. I try to leave situations now that leave her feeling a bit sad. I see it in her face. It hurts me to see, a lot.  I’m waiting for that special friend to come along that will be interested in her, love her, want to help, but more importantly want to play and be her friend and include her no matter how much patience that that might require.

Lauren went from having a normal pram, to having a pram from wheelchair services. It was a bigger pram, I liked it actually. She wasn’t big enough for a wheelchair at the point of getting the pram, so this was OK for me. If people were alert enough they would recognise that the pram was a bigger one, as was the child occupying it. But for the most part, it was just a pram. The wheelchair however, came when Lauren was 4. She was getting too big for the pram, but we needed something to push her around in. Because Lauren couldn’t walk. This hit me again about this time. Like a punch in the Stomach. I stayed upbeat, I didn’t want and don’t ever want Lauren to feel that she disappoints me in any way, so I stay upbeat and try to make things exciting. I let her choose the colour. She chose sparkly red. She seemed so proud of her new chair.

Life was getting too much for me. I didn’t have a good coping mechanism. There were very few people that actually had my trust enough for me to talk to them and I just kept feeling like there was just one more thing and I’d surely break down, but they kept coming and I kept trying to stay strong for Lauren.