So it has been just over a month since we received Oliver’s diagnosis.
Things I’ve learnt:
- Everybody takes news in different ways
- People who you didn’t expect to offer support appear
- People you expected to give you support back off
- At 27 years of age you can still surprise people
- Personal experience is invaluable
The past 8 weeks have been a rollercoaster ride. I’ve been up, I’ve been down, I’ve been numb and I’ve been completely confused by feelings. Hormones after you have a baby are all over the place anyway but having gone through what we have all been through can take its toll on you. Oddly I’ve discovered an awful lot about myself and the people who I surround myself with. I’ve friends that I thought would be crutches not appear, I’ve found that work colleagues are actually more than that and that being direct with people is probably the best way to deal with things.
I think as a unit we have surprised a lot of people, which has surprised me a great deal. I never thought that me surprising people would surprise me and makes me wonder how I am perceived by other people or if my reaction, Mikes reaction and our reaction as couple is unusual.
Our support network has extended since having Oliver’s diagnosis. Oddly to people we have never met. Facebook for all of its faults, has actually become one of my crutches. Not my own private profile but a group profile that we have been added in to. Having a diagnosis of something that is rare (one other case go through Arrowe Park as far as we are aware) is, as you can imagine, quite a lonely place. That lonely place we were in lasted about 4 or 5 hours. It’s not lonely when you have a facebook group full of parents who have children with exactly the same condition. Right now I feel closer to a group of people that I have never met because they completely understand every worry that I have, most have already been through it and can not only hold your hand (metaphorically) but can also guide you through, pick you up when you are down, dust you off and send you back on your merry way. One thing I can tell you about their behaviour, it’s catching. We’ve been in the group a little over a month and other families who have just had their diagnosis have come through and watching their struggle is heart wrenching. Not every one has reacted how Mike and I reacted to the news. Maybe their reaction is more honest or indeed everyone doesn’t react in the same way. Some people are more in touch with their feelings and express them more easily. The only thing I know is that these families genuinely care for each and every other family in the group and this includes us. We now belong to a small community – a supportive, praising and morale boosting group of amazing families.
I’m a self confessed Googler, I believed that if you needed the answer, google has it. Google does have the answer to pretty much everything you need. I can tell you what Google didn’t have for us, real life experience or up to date information.
I can imagine that if you have signed up to read this blog then you may well have read up on Prader Willi. I can tell you, hand on heart, that what you read on Google is not the reality of the syndrome anymore. The families we are now in touch with have shown us exactly what Oliver’s future is likely to be and it is 100% not as bleak as any search engine will have you believe. The families we have spoken to have shown us and told us what life will be like. This has probably been the biggest boost for us, they have been a safety net when we were falling and its something that I don’t think I can put into words how thankful we are.
The title of this entry I originally picked ‘Just getting on with it’ because that’s exactly what we are doing. We’ve been told what is important to push for and we have started the ball rolling for each of those things. Now we can just enjoy being a family, a normal family because in reality that’s what we are. We go shopping, take the dog for a walk, have PJ days and have lazy mornings. We’ve slowed down with the compulsive checking and looking for things that we were doing early days and have relaxed into home life. This is in large part because of the Facebook group but is also due to our family and friends stabilising us. Without the time and space given to adjust and relax into this, I don’t think that we would have got to the point we are at, as quickly as we have.
We will still do it, just at our own pace.
Last month we didn’t think quite like this, if I am honest, it’s probably only in the last week that I have felt like this. PWS hasn’t stopped us doing anything so far, except getting out of hospital at the expected time and for now that’s exactly how it is going to stay.
So if you see us and we look like were being a normal family, doing normal family things. It’s not because we aren’t ‘dealing’ or ‘coping’ with our situation. It’s because Oliver’s syndrome is the smallest part of our family life and we aren’t going to let it stop us doing anything that we wanted to do, if you have witnessed how far he has progressed since day one, you’ll know that Oliver is very much of the same opinion.