Two Years on Blind…
This post has been sitting in my draft section on my blog for a while now. To be honest, it has been really hard for me to write the last few months as we have had so many things in the unknown with the pregnancy. As the due date is looming closer… I am getting many flashbacks of the traumatic circumstances Archer was born in. When I first lost my vision, I didn’t really have flashbacks or anxiety relating to trauma because I was so busy focusing on being the best mum I could be and becoming independent and functional. However since falling pregnant again and after the loss of our last pregnancy it has mentally been a pretty tough ride. Don’t get me wrong… We are super excited and can’t wait to meet our new bundle of joy.. However the unknowns have been quite stressful. As the pregnancy has progressed… We have gained lots of answers which have put our minds at ease. We have recently found out that the tumour on my optic nerve has not returned, so it looks like they have got it all. It also confirms that pregnancy was not the cause of the tumour . It was just a coincidence that I was pregnant when the worst of it happened. Regardless of whether I had been pregnant or not… I still would’ve become blind. The tumour that is still in my brain near my sinus is stable and has grown a tiny bit but not enough to worry about any surgery in the near future. This means that hopefully we can have a normal birth for this baby and hopefully be home after a few days. Beats eight weeks in hospital. Since finding out this information, I have been able to relax a bit more and enjoy the last part of my pregnancy.
A different place…
That day has rolled around again. The 21st of July. It is one of those days I would rather forget, but I can’t Two years on from the day I went blind, I am in a very different place. two years ago my brain was opened up in theatre to remove a benign tumour to save any vision I had left. Today I am almost 24 weeks pregnant with our second little man, making ham and cheese toasties for our toddler Archer and playing with playdoh. A very different place, with less drama and our level of normality. It is simple and bliss.
Today brings up a lot of trauma that I can’t just let go. How can I? There was not only the trauma of having a gruelling brain surgery and losing my vision; but also the trauma surrounding Archer’s birth. It was dramatic, I lost a lot of blood , Archer was in neonatal intensive care for 24 hours which meant that we didn’t get the initial bonding. Following that I had so many visitors with some staying for hours and me not being assertive enough to ask them to leave so that I could bond with my baby. This really affected me. Then there were the teams of specialists that would be in an out of my room all the time. I couldn’t even go to the toilet without someone walking in the room. So many factors were out of my control due to the circumstances. There is nothing we could’ve done to change it, but it still lingers in my memories. There were also the falling outs I had with family over my care and not feeling like I was listened to. It was all trauma. Although everyone has moved on now. The flashbacks are real and the anxiety is looming worrying that these events will happen again after this baby is born. The best way I can cope with these flashbacks is talking about them, asserting my needs for after the baby is born, the help that I need, when I want visitors, and doing things with in my control such as eating healthy, going for walks and looking after myself. They do say that 99% of the things you worry about don’t happen. I keep having to remind myself this. Cameron has also been a great support and has been really positive when I find myself worrying about these things.
This experience also makes me appreciate what I do have. I am becoming more accepting of our situation, which is a working progress. Sometimes I feel like I take two steps forward with acceptance and then a particular circumstance, ; (normally a new one) I take for steps back. These backward steps normally stem from frustration, however I try to come up with strategies to better able me next time.
The challenges of parenting blind …
Having a child presents challenges to every parent. I really feel that my challenges as a parent are no different to a fully sighted parent. We have a two year old toddler who is independent and wonderfully smart, affectionate and funny. He also throws tantrums, normally around food or not getting his way. He likes to run for it when he senses freedom and gets fed up with sitting in the pram or on public transport for a long period of time. He draws on walls, leather couches and hides the toilet brush in places like the dish washer. These are all normal challenges that all parents come up against. My vision doesn’t even come into play here very often. The only thing I have to be really careful about is when he wants to run for it if we are out and about. Usually I have a friend or family member with me, or we go to places such as indoor Play centres. If we go to the park or the beach I am on full alert! I am pretty much his shadow and don’t let him out of the site that I do have. At the moment archer is learning my boundaries. I am teaching him that if I say “Archer where are you?” He is to come out to me and say, “here I am.” He is getting really good at this. both Cameron and I are really strict with making sure archer holds our hand when we are out and about. Having Cameron on board with this helps with consistency for when I am alone with Archer and walking him up to the park or when I decide not to use the pram.
Most of my challenges with my vision involve not having the spontaneity of going to where I need to go when I want to in my car. Archer and I have caught public transport and taxis to get to appointments, go to swimming lessons, library time, play dates and playgroup. We walk when we can. Both of us have needed to learn patients at times especially when caught in the rain. In the end, Archer hasn’t missed out and i still get to socialise.
- I have had to accept that I need to rely on others at times, such as my husband getting me to some appointments and helping me with swimming lessons while I am pregnant.
- I have had to accept that some of my friendships have distanced a little due to changes in our life like having kids, Cameron being in a demanding job and yes, my lack of vision and the obstacles that come with it. As I am gaining more independence and confidence, I am able to make my friendships two way again. I was always one to be jumping in the car and going off to see my friends. It has been really hard to sit back and rely on my friends coming to me while I am getting my confidence back with getting myself around. Add in The factor of having a toddler constricted in a pram for a couple hours on public transport also makes it difficult. However this would make it difficult for any parent. That said, I have a beautiful handful of friends that just get it. I am so grateful to them and feel very blessed.
- I have had to accept that I can’t drive and have to pre plan everything to make sure I am not late for appointments and events. Losing time waiting and relying on public transport, taxis, friends, family and volunteer organisations is very frustrating, particularly when you are head strong.
- I have to accept help and ask for it when I need it. I have learnt to dictate and be assertive with this. Intentions of others are great, but they might not necessarily work for me.
- As time goes on, things have become easier. I am getting quicker at completing tasks. I have learnt tO pay bills again using technology. I read to Archer and all those other simple household things that can be taken for granted.
- I have had to accept that I cannot do everything. As much as I would like to be involved in lots of different things, I just can’t any more. I have learned to compromise with myself and be content with what I can do and appreciate that. I am already doing so much on my own, and have had to because Cameron’s job is demanding. People say to both Cam and I that they don’t know how We do it. However We don’t know any different As we were thrown into parenthood at the same time I went blind and we started up a business. We didn’t have a choice. We just had to put 1 foot in front of the other and nut it out. Cameron often tells me that he would be lost without me. I am able to fill in the gap’s where Cameron can’t get to, and he is able to do the same for me. I could have fallen in a heap and just given up. But I didn’t. Don’t get me wrong there are some very tough days where it would be easy to give up. But some how you just find something to push you through. Cameron and I make a great team and together both of us just seem to make it work as chaotic and hard as it is. We often have a laugh and joke around like we used to. We often talk absolute crap like we used to. We are taking as much time out together as we can within our means of the chaos of life. Marriage can be tough… However it is also beautiful and I am grateful for all of it good and bad.
I guess my next focus is getting through my pregnancy so we can brew another healthy bub. So far everything is going well and we are hoping for a low key birth and recovery. I am just hoping we can walk out those hospital doors after a few days, rather than eight weeks like a normal family and enjoy those first few weeks with our new bundle in the comfort and privacy of our own home. For me I just want my own space with my boys to bond and do what I need to do. However, I am not afraid to ask for help if I need it and will call upon my family to help out if need be. Fingers crossed.
We can’t wait to meet our new little human and see what the next year has to bring.
If you would like to read about how my pregnancy is progressing click here.
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