I'm in a unique position, and I know it

I’m in a unique position as a special needs mother.

Eva died in one of the slightly easier stages of her life. I had got past the difficult first months. The time of adjustment and grief. I had accepted my girl for who she was, but as a baby the differences between her and her “neuro typical” peers was only just peeking through.

She died before I got to experience any extreme delays. She died before I got to feel the potential grief of never hearing my child tell me they love me, or even tell me they were hungry. She died before I had to cope with having to use a hoist to lift my immobile child in and out of the car. She died before I had to cope with the lack of baby sitters who would be willing to take care of her.

Eva as a baby was adorable, responsive, cuddly. Aside from a few issues around her tone and having to hold her more like a newborn than a ten month old baby, anyone comfortable with the average baby could hold her. Once you knew her feeding system, anyone could really take care of her.

So I didn’t get to meet the Eva who may have started biting as a toddler (I am almost 100% sure she was going to be that kid), or the Eva who got strong enough to fight me when I tried to give her a bath or put her in her fancy seat. I didn’t get to feel the isolation that so many special needs parents face because leaving the house with their growing child becomes more and more difficult.

It breaks my heart to know I will never know who Eva was going to be, but in that heart break I am also aware that there are challenges and grief of their own that I have missed out on too. Eva’s paediatrician spelled it out in black and white for me a number of times after she was born. She explained that the baby stage is the easiest really. It’s when they get bigger and stronger and their personalities start to grow and really take hold that things get tough.

Behaviour problems start to raise their heads. The Eva that insisted I continue to stroke her forehead may have found other ways to have her needs met. Without a voice, without hearing and sight, she might have struck out to get herself heard. And who could blame her?

So I’m aware I am in a position that allows me to be pious. Self righteous even. I can talk about my perfect Eva and how much I loved her and know that I will not have to face the challenges which undoubtedly lay before us. I can focus on the positives.

I want to acknowledge those parents putting in the hard yards. I was bracing myself for that life. I knew it wasn’t going to be easy. I want to tell you I know you’re out there. I don’t want you to ever think when I talk about Eva that I don’t know what was in front of me.

I think the only way we get through those challenges is by having this huge love built up inside us for our children that carries us through those challenges.

The reality is that having a special needs child is HARD. When people grieve the loss of the child they thought they were going to have, they are also grieving the life they thought they would have. The reason they have to grieve that life is that society is not built for these families. There are some supports. Respite. The ambulance at the bottom of the cliff. But if the supports were more robust, that ambulance wouldn’t be necessary.

If the system was built to support these families, having a child like Eva wouldn’t fill parents like me with such fear and worry. We would know that the challenges we would face would come with support in whatever form that took. Equipment that could support us, vehicles that could accommodate that equipment, nursing support throughout the night that meant parents could sleep and be the carer during the day.

The reality is that parenting a special needs child can mean you are a full time carer for them.You are their nurse, their therapist, their advocate, and when those duties are dispensed with, then you are their parent. Discovering that your life is not as a parent but as you child’s full time carer for most of their life, is not something most parents jump for joy at the thought of. It is not what parenting means for most of us. We are all our children’s carers, but for most parents, that job changes over time. Your children have their own lives to move on to. But what if your child never progresses past three years old, or two months old? You still love them fiercely, of course, but it changes your life. It makes you something more than a parent. And that something extra takes a toll when there isn’t the necessary support to help you.

When I talk about Eva and how much I miss her. When I talk about advocating for her and for other special babies, I am not ignoring the hard parts of this life. When I talk about my changing views on whether I would make different decisions in pregnancy because of what Eva has taught me, I am not forgetting that those decisions have life time consequences, not just for the child, but for the parents.

Because society isn’t built for the Eva’s of this world. And until it is, those challenges will be predominantly faced by the specific families concerned. They will do it quietly and behind closed doors. They will bear the weight of the struggle themselves and it will take a toll on them, emotionally, financially and as a family unit.

I don’t quite know what I’m trying to express here. It is alluding me. Floating on the tip of my brain. I just wanted to acknowledge that I know Eva’s death puts my in a unique position. I get to think about all the positives and ignore the potential negatives that awaited us. I get to be nostalgic and hopeful, because i don’t have to have my hopes repeatedly dashed like in those early days.

I guess I just wanted you to know that I’m aware of that. I’m aware that Eva gets to stay the beautiful happy baby she was. She will always be the baby that loved to have her forehead stroked, that loved cuddles, that fell asleep in my arms and slept through the night. I don’t want that to be the case, I’d give a lot to have been able to see her grow up. But I’m also aware that her death has meant I have escaped certain truths and pain that I would have had to navigate.

Eva on her last day. She will always be this happy, easy baby.

Eva on her last day. She will always be this happy, easy baby.

I’m not saying I’m thankful, or relieved, or that it was for the best. Because it wasn’t. I would bear those burdens for her to be back with me. I would bear them repeatedly. I’m just acknowledging that it is a hard life. One I was prepared to live, but I know I now don’t have to live it, and there are plenty of other families out there who are living them. Right now. Not blogging about it, or telling anyone, just pushing through. I want to acknowledge you and tell you i know you are out there.

The Eva’s of the world are not our burden. Society makes their lives, and ours, difficult, by putting barriers in their way. If the infrastructure supported babies like her as they grew and their families, I and other parents would embrace that difference from the word go, because we would know that having a baby like Eva wasn’t a bad thing. If the support was there, if society didn’t look at special needs as a bad thing, finding out your baby had a disability or a delay could be as normal as finding out your baby was a boy or a girl, just another element to who they were. No more or less important than their hair colour or eye colour. We would know that our communities were there to help us raise our children into whoever they were going to be without it taking such a toll on the people who loved them.

I’m imagining a utopia. But it’s a utopia that babies like Eva deserve.

So now that I’m in this unique position I want to try and do something about it. I can’t make that utopia happen. But now that I have perspective and also the ability and time to do something, I am going to. That’s part of what the podcast is about. I want those stories to be known. I don’t want people to feel alone in this. I can’t change government funding, or stay up all night with a child so their parents can sleep, but I can help them tell their stories so the reality is a shared truth. So we can stop ignoring the fact that some of these families are doing this all by themselves. And they shouldn’t be.

top_mommy_blogs_signature_banner (1)

11 thoughts on “I'm in a unique position, and I know it

  1. pkpmom2manyPhyllis

    Every post you make is powerful. Each one I read tugs at my heart. I hope in reaching out to other parents and to society that you can tell our stories in a way that touches everyone. I wish for the utopia you describe and hope for the day when everyone can celebrate what each child/person CAN do and not focus on what they cannot do.

  2. Barbara Lowry

    The picture made me smile, the words made me cry. It was ever thus with your blog. I do know that whatever Eva and your future were to have been, you would still have loved her, you have the resilience to meet those challenges. It would be hard but you’d have done it and told us all about it.

  3. Pingback: I’m in a unique position, and I know it | Chiara's Journey

  4. ellenhowe1985

    i love you i was looking at pics from a few charge mummys who chargers had past one was ethan wolfes mummy from the charge conf in chicago and i thought of you ethan and eva passed aroudn the same time i thought of just how amazing jody and david are to still be pres of the charge foundation and i feel your amazing to xxxx

  5. Allyssa

    This is incredibly powerful, and so very true. It didn’t take me long after my son was born (chromosomal abnormality, deaf-blind, heart defects, agenesis of the corpus callosum) to realize the tragedy of disability is not the disability itself, but society’s treatment of disability. My son was born about two months before Eva – I wish I would have discovered your blog earlier, it’s like someone opened my diary and started reading it out loud. Thank you for putting your thoughts out in the world! It’s incredibly helpful for other moms going through this crazy, amazing journey. x

    1. Oneinamillion Post author

      Wow Allyssa, your son sounds so similar to Eva! Do you have a formal diagnosis?
      I’m so glad you found something helpful in my blog. I’d love to talk to you more considering our kids were so similar.

Leave a Reply

Your email address will not be published. Required fields are marked *