When we first viewed this property, pulling into the parking bays, we saw loads of children playing on the large green in the culdesac. Smiling faces, bikes on their sides and a mum who'd come out with a pitcher of squash, cups and biscuits for the masses. I'd not stepped into the terraced house and already I knew I wanted to live here. As we shook hands with the estate agent just outside of the property, I was already planning on purchasing a storage bench we could put at the front so that we could watch the girls play on that green, while James and I shared a bottle of wine in the sunshine. I was sold.
Of course by the time papers were signed and we'd moved in, summer was nearly over and James was still living away at least 5days a week for work. If he was home for a couple of days biweekly that was pretty good. Most of the time it was just the four of us girls, Isa, Mels, Gin and Me. Ginny who I worried the most about, with regards to the move, was not as shaken up by this move as she'd been with others in the past. Being able to step out of our back gate and cross the road to the common must have been a dream for her.
We could walk to duck ponds she so loved in just a few minutes and drive to nanny and grandad's house in under 5. It took us less than 15 to walk to the town centre and Melody would be able to scoot to school in
September, the same school her dad went to when he was her age.
It was a dream for me too. I lived so much closer to my friends and James and I would walk past the church we were married in, hand in hand, every time we went for a drink at our local. My girls would have happy summers outdoors in the sun while I cooked dinner and would watch them from the large window facing the green. We'd barbecue while the girls paddled in the garden and then ate at their mini picnic table wrapped in towels while we'd dine on the patio one. If only I never had to wake up. If only I could live in that dream.
Dreams are funny things. The other night Ginny spoke to me. Excitement shone through her face as she managed the words she'd desperately wanted to get out for years. We were on our back patio after a barbecue. She smiled, we all did, Melody hugged her and she kept on, saying a word and looking around to make sure it was hers. I could feel my heart swell with joy when I suddenly heard a scream. The scream was out of place, it didn't fit our joyous surroundings and it wasn't welcome, but there it was again. That's when I realised it wasn't real, that's when I remembered putting the girls to bed and rolling into my own without managing to read a page of my book out of exhaustion. The swell in my heart turned into an ache and I opened my eyes.
The scream was now an audible cry, "maamaaaa" but it wasn't Ginny's. Isa had rolled out of bed and was sat on the floor with her arm stretched towards me as I entered to room she now shared with Melody. I scooped her up and shushed her. I rocked her and kissed her forehead, then I placed her back into her bunk, put her doll 'peepo' back into her arms, and tucked them both up. I stroked her hair and sat on the edge of her bed, stooped over because of the bunk. I know I shouldn't because of my spinal injury but I want her to feel safe, to know I am here.
The cadence of her breath lulls and I know she has gone back off to dreamland. I kiss her forehead. I thank god that her grommet insertion was successful and that she is making excellent progress with her speech now that she can hear. I wish it could have been that easy for Ginny and immediately I feel guilty for taking hearing impairment lightly. I remember the struggle to get Isa's surgery put through and the frustration she felt for not being understood. Her frustration was just as real as Ginny's, we were just lucky it was temporary. I try to sneak off the bed in a semi ninja stance and when I see Isa did not wake from the bed's creek, I step on the child sized chair at the bedside, lower Melody's blanket and kiss her forehead too. How she can sleep the way she does, I will never understand. Not even in the deepest of winter could I imagine disappearing under my duvet without the feeling of asphyxiation creeping over me. I shudder. I replace her blanket, step off the chair carefully and step out of their room.
I stare at Ginny's door. The house is silent which is rare to say the least. I want to have a look at Ginny, to feel her hair, brush her cheek, but do I risk it? The chance of sliding her safety lock to open waking her when it's possible that if it doesn't she'll be facing the wall and far from my reach up in her loft-bed? I Reason with myself saying that Ginny has slept very well this week and that Amber is sound asleep so I could always lay with her a while to settle her if she did stir, and I slide the latch and wait. Nothing.
I slowly open the door and tiptoe in, towards the head side of her bed and stand on her child sized chair. She is facing out and suddenly it is worth the risk of waking her because her little hand is near the edge and I can hold it. It is warm, as always, and I feel my heart warm before the ache returns. I stare into her beautiful face and know that she may never speak. My dream was just that. She is eight, nearly nine, and I know that the chances of her developing speech after 8yrs drop drastically. I feel a tear roll down my face and I squeeze her hand slightly. I kiss two fingers on my other hand and gently place them to her lips before taking a deep breath, letting go of her hand and tiptoeing back out of her room.
I pull the door shut, slid the catch and lean against the door for another moment as I feel my chest begin to tremble. I reach my room in a few quick strides, grab a pillow and cry. I grieve. I grieve for Ginny. I grieve for her sisters. I grieve for myself and for James. I think of the way Melody asked if Santa could bring Ginny a new voice box for Christmas and of how she often prays for Ginny to be able to play with her and Isa. The way she pretends to be Ginny's voice when she asks for things she thinks Ginny might like. It makes my grief worse. They say you finally get grieve once you receive a diagnosis but it's only one of the many times you will.
I feel my chest heave and I know I have to calm myself so that I don't wake my mom downstairs, visiting for the summer to help with the girls. I hear Amber beginning to stir and know I must not be doing a very good job, or maybe I am and it's just time for a feed. I'm reminded of how I never really know if I'm doing that, a good job. I lift my head, take a deep breath, blow my nose, wipe my face and look at Amber.
She's kicked off her covers and is smiling at me. I can't help but smile back. She is so beautiful, but what's more, she is such a miracle. I had such a dreadful pregnancy last year and there were many things that could have led to her not being with us today. In the end she was only two months premature but breathing independently from birth. She was so small, is so small, even though she's more than three times the baby she was born.
Her hearing tests were clear but what if? What if it happens to her? What if she continues to develop normally and then one day she stops? She stops and she regresses? I don't know if my heart could bare it. Melody has shown many signs of being on the spectrum but if anything she is hyperverbal, through her I see the traits in myself that make me wonder if my genetic make up makes me the one to blame for the elephant taking hold of Ginny. I try to shake the thought, the feeling of unease our elephant brings with him when he creeps up and takes over. I reach a hand out to Amber and she grabs my thumb. She babbles, kicks her feet and smiles even bigger than before and I just have to hug her. I lift her up and kiss both her cheeks, her little hand still clutching my thumb and I somehow manage to feel blessed. I want to squeeze her but I don't want to hurt her so I kiss the top of her head, rearrange the pillows on my bed and nurse her.
Her eyes smile as she feeds. I know I am lucky to be able to nurse her, that not everyone manages while others do not wish to. It's worth the hunger and the exhaustion, to know that even though my body turns on me during pregnancy, it allows me to provide my children nourishment. After she finishes I continue to hold her close. I feel her chest rise and fall, I smell her skin, I hear her breathing. My love for this child, as for my others, has no bounds. I know I would do anything for her. I rearrange the pillows, lie back and drift off to sleep.
In the morning the sky is grey, the air smells of rain and my joints ache but I am thankful. When the sun is out all the children rush out to play on the green. They ride their bikes, make up games and laugh carelessly as children do. Many of them look around Ginny size/age or younger and it hurts to watch them. The joy the sight of them brought me to at the start now pulls at my heart. They do all these things Ginny may never do. They play and make sure their younger siblings feel included. They have friends. When it rains I do not see them out. It makes it easier, if only slightly.
I can not sit outside and watch Melody and Isa play unless Ginny is secured in a room with a camera and I can watch her on a screen next to me, or she is out with carers. Melody is younger than most of the children anyway but occasionally a couple of the kind, older girls, welcome her to play and say they will keep an eye on her. On those days I watch from the kitchen window and feel bad for wishing for rain. I watch Melody smile and jump about, and the girls put flowers in her hair and I still wish it could be Ginny picking the flowers and adorning her little sister's head. I wish it could be Ginny but I do not wish the other children away, I wish she could be their friends, that she could have friends, that they would knock at the door and call on her to play and that she would rush and ask me if its okay. I accept that it's just not the way it is and so I try to feel happy when they ask if Melody can play.
I often worry about whether because of Ginny's condition other parents won't/don't invite Melody over to play or us to join in on days out. I know it's silly but I can't help it. Especially when I hear/see that close friends have all gone to do something and we only hear/see that they have after the fact. I think I'd prefer it to be that they just didn't like me. School tells me that because Ginny's autism has such an impact on Melody it does affect her ability to make friends. That many times the other children may believe her to be a bully but I have seen her bullied and I've seen her innocently not understand what is going on and laugh at herself because she hasn't realised. She is a very emotional child and school has been great with trying to help steer her acceptably. I know that it's not Ginny that has made her emotional, that Ginny has made her compassionate and caring. That she's inherited my headstrong bossy nature. I wonder if I should tell the school she is emotional because it's in her DNA? Because of me? How can I explain how sure I am that they are wrong and that they just aren’t recognising she has her own very strong ASD traits that actually manifest completely differently from her sister’s? They don’t even know her sister, but can’t they see the traits in me?
Having a child like Ginny I have to especially watch what I say to everyone. I worry at all time the kind of things they'd feel necessary to pass on social services and am reminded of Ginny's case manager quoting James as saying that I am crazy and hormonal when pregnant when he flippantly said it was nice to have baby home and not have to deal with crazy pregnant hormones “jokingly”. The way they could take that remark as a reflection on me and not of him and the toxic masculinity he was bred amongst will never leave me. Some how things like this are documented and those documents become apart of my life so I have to watch everything. When I was unwell and not at all satisfied with the care that was being provided to Ginny, instead of looking to improve said care, agencies tried to say it was in fact my fault because of my attitude. Apparently reporting a list of failings on my daughter's care and telling carers what is and is not an appropriate way of dealing with Ginny is a poor reflection on me.
Many people have asked I have not been writing and while I usually respond saying that there have been so many things going on in our lives that there just was enough time, that is only a part of the truth. A part of me fears that my honesty on reflection of what last summer was like for us while I was unwell could be another document to be filed away negatively. It often feels as if unless reflection on the system is positive then the system would prefer for it to remain buried or risk burial. I know that I am not alone in feeling this way. Unfortunately I know many others who feel the same.
In just a handful of days it will be a year since my spinal injury. The fact that I've experienced aches there all week is yet another reminder of the terrible summer we had as a family, yet also a reminder of how far we've come. A reminder of the fear I felt when the jolt of pain surged through me and I thought I had surely lost Amber, and of the fact that I hadn't. That we made it through with the help of friends and family, and that we've now had Amber with us for 7months. That now James is home more than he ever has been, thanks to his new job. That the girls are happier than they've ever been. That Ginny is now being medicated for ADHD and that it has made a massive difference to her ability to concentrate. That it's resulted her being on new language development target for the first time in years. That even though the likeliness of her developing speech has dropped, the possibility that another communication system may be successful has risen, but I often worry about the side affects. That we don't need carers at home like we did then because I'm not bed ridden. That we've made it through, that we're blessed.
Don't forget, you can help me promote awareness by sharing this blog and making a donation towards my charity trek through
https://www.justgiving.com/Ginnybeanasd/
