I started blogging our journey for a few reasons. So that friends and family would have a central point to get information without us having to tell the same story repeatedly, so that we would have a record of what happened, so that I could do a bit of writing therapy and also to give others insight into this mad, crazy world of hospitals, special needs and critically ill babies. Before going through this I would have had no idea how best to support someone in my situation. I thought I would write down some of the things that my support team have done for me that I found most useful so if my readers are ever in a place where they can support someone like me, they can get a bit of an idea of what may help.
(1) My support people call before coming around. They recognise that things happen sometimes with no notice whatsoever and even if we had arranged a visit it may not be convenient so they ring and are prepared to leave at the drop of a hat.
(2) My support people listen. I have talked more in the last month than I did in the previous YEAR. I have found that sometimes I would just need to decompress and especially in the first few weeks I would talk non-stop when with people I trusted. Now, I sometimes want to have "normal" conversation. My support people take my lead.
(3) My support people don't push me to talk about things that I don't want to. Some of the things I have seen and Kaylee has gone through literally turn my stomach to even think about and some aspects of Kaylee's diagnosis are very confronting to think about. Sometimes I have seen people before having a chance to talk over a new piece of information with Jon and haven't felt comfortable sharing it quite yet. Sometimes I just want a few minutes where I am not having to talk medical stuff. Also, my whole attention is taken up with working out TOMORROW so while I do have plans at the back of my head about Kaylee's long term care, I don't necessarily want to discuss what we will be doing in five or ten years time. So while my support people ask gentle questions, they do not get offended or push any boundaries if I choose not to share or avoid some topics.
(4) My support people follow instructions. Especially in the early days I felt like I do at the height of labour when I am completely focussed on the task at hand and don't always have my best manners on when I ask for something. My support people do exactly what I asked, exactly the way I ask for it. If I ask for something specific and they can't get it exactly the way I ask for it, they let me know as soon as possible and ask me for further instructions.
(5) My support people are focussed on me. Most of them love Kaylee and love a chance to visit her, but their primary role is to support me so that I can care for Kaylee. So if they don't get to visit Kaylee, it is no drama. They recognise that the best thing they can do for Kaylee is to support me so if our visit is restricted to a cuppa downstairs rather than a visit on the ward they are content with that. Several support people have been happy to drop off stuff and go, allowing me to sleep rather than converse if I needed it. They make it all about me and I love them for it!
(6) My support people do not ask to hold Kaylee. Kaylee's cuddles are precious and sometimes exhaust her so I selfishly prefer to keep them all for Jon, the kids and I. Thankfully my support people have recognised this and don't treat me like I am selfish or over protective or throw hissy fits!
(7) My support people recognise that being sad or angry is OK. They don't try and make me feel differently or "cheer me up". They don't get shocked or upset if I have negative feelings or thoughts. They don't think that I am not coping if I have these feelings. They let me feel it, talk about it, pray about it and move on when I am ready.
(8) My support people don't make their feelings my problem. Many of my support people have been upset about what is going on. Many of them are personally invested in Kaylee and love her dearly as their grand daughter, niece, honorary niece etc. Many of are deeply moved by our adventure and have lots of feelings about their own kids, past or lives that are triggered by what is happening. But my support people make sure this doesn't stop them providing the care they said they would give me. They find their support from others, get the rest and nutrition they need to function and step up to help me the same way I step up to help Kaylee.
(9) My support people don't bite off more than they can chew. They only offer what they know they provide and they let me know if their situation changes as soon as possible. When I am relying on them so heavily if they said they were going to do something then didn't do it or didn't do it in the time frame they promised it is actually worse than if they never said they'd do it at all. It would be if they ran up and kicked a crutch out from under me. Some people get a bit of a high out of making promises of support but drop the ball when it comes to keeping those promises. Thankfully, my support people don't do that!
(10) My support people are very practical! They realise that feeding me, offering to visit me, asking for or simply meeting my needs and feeding my family are important things. They also realise that prayer is pretty practical too!
I have been humbled and awed by my support people and have been blessed by their ministry to me. I hope one day to pass the blessing on to someone else who needs it.