The Friday Focus 01/04/16 – A reminder of the journey to come

Yesterday was Jessica’s cardiac check-up.  I’d felt more anxious in the run-up to this appointment than I had for a check-up in a while.  Partly because of our old consultant leaving but mostly because I knew we would be discussing Jessica’s next surgery.  We met our new consultant and Jessica had her echocardiogram, ECG and other tests carried out. As far as I can tell, things sound pretty stable.  However, the discussion with the consultant has been a sharp reminder that another heart surgery will need to happen, and that it could happen very soon.

Reminder - this week's word of the week - The Friday Focus 01/04/16 - Little Hearts, Big Love

I know all this, of course.  It’s been hanging over me since I first turned over the calendar to 2016. The  thought that this could be the year that the next big step on Jessica’s journey needs to take place.  But talking about it with the consultant, knowing that the plan is to discuss Jessica at the next team meeting and perhaps start taking steps towards that next stage makes it all sound horribly real.  Especially when the consultant also mentioned that this surgery may well take place before Jessica starts school in September.

 

Hubby has reminded me that there are no plans as yet for Jessica to have a cardiac catheter procedure, or for her Fontan to take place in the near future. All we really know for sure right now is that Jessica will be discussed by the team in a couple of weeks’ time and that we have another appointment booked for July.  We will know more once the team has had their meeting.

 

Jessica waiting for her hospital check-up - The Friday Focus 01/04/16 - Little Hearts, Big Love

 

I wrote a post last week about how being a heart mummy doesn’t make me a superhuman.  It was also published by The Mighty earlier this week.  It’s something that I’ve been reminded of again – yesterday I felt anything but superhuman – just scared, unsettled and anxious.  I had a good cry, took a deep breath and reminded myself that God is still bigger than all of this. Somehow we will get through it all.  I’m still scared, still unsettled, but holding tight to that faith.  Today I will focus on making happy memories and not think about what tomorrow may bring.

 

Things I have loved this week:

  • Going on the Good Friday walk of witness with the girls – and not needing to take the buggy!
  • Being back at Chiltern Open Air Museum for the first day of the season and enjoying an afternoon out in the sunshine hunting for Easter eggs – it was so warm we didn’t even need coats.

 

Outdoor fun at Chiltern Open Air Museum - The Friday Focus 01/04/16 - Little Hearts, Big Love

  • Watching my girls having fun at their friend’s birthday party.
  • Going out to the supermarket on my own (with a cheeky stop-off at Costa on the way!) and then arriving home to find that hubby had cleaned the house from top to bottom in my absence.

 

An Easter egg hunt at Cliveden - The Friday Focus 01/04/16 - Little Hearts, Big Love

 

On the Easter trail at Black Park - The Friday Focus 01/04/16 - Little Hearts, Big Love

  • Being reminded of how amazing and supportive my friends are.

 

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What Katy Said

 

 

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24 thoughts on “The Friday Focus 01/04/16 – A reminder of the journey to come

  1. Ah hon what a scary time and it is understandably nerve wracking for you. It’s so great that you have your faith to help you through and all I can say is that I hope that all goes well for you… But I know that doesn’t help at all. Glad to hear you’ve had some lovely fun times over the last week too and I guess all you can try and do is focus on those in the meantime! Xx

    1. Thank you Caroline. I know Jessica will be in the best possible hands when it finally has to happen but it’s still a scary prospect. I’m going to try and put it out of my mind as much as possible and focus on having fun in the meantime x

  2. I spotted that you were going for the appointment, sounds as though it was tough. I can imagine that though you know it’s on the agenda at some point, having it discussed like this makes it feel more real somehow and therefore more frightening. Sounds like your wonderful husband and your faith are there for you keeping you calm. So important to have supportive friends, too x Thanks for sharing with #WotW

    1. Thanks Jocelyn – it does feel more real now since the appointment and I had a bit of a wobbly moment afterwards. I know we have a lot of support and lots of love surrounding us and as we don’t yet know what the plan is, for now I shall try not to worry and focus on enjoying the moment instead x

  3. Hold tight to that faith lovely and hubby is right- no decisions yet (he is alps awesome for cleaning the house!!) glad you have had a good week and got out and about with the girls. I liked your supermum post – still think you kind of are 🙂 xx #wotw

    1. Thank you Sarah – it’s good to have hubby being rational about these things. I came away from the appointment hearing “we’ll book her cardiac catheter and plan the Fontan for before she starts school” whereas hubby is much better at remembering what was actually said and reminding me that those decisions have not yet been made. Thank you for your lovely comment x

  4. For me you seem to have just summed the difference of men and women up. As women we procrastinate and hurt ourselves by thinking through all the might happen scenarios. While men seem to just look at things in black and white and don’t let their minds wander or at least not show it.

    I wonder also how your daughter feels about things is she in the dark? or do you have someone that can talk things through with her. When my daughter had her finger mended as she caught it in the kitchen door one of the things they read out was had a discussion taken place as to how she felt. Of course being nearly 1 at the time she couldn’t respond but I wonder what she may have said.

    May whatever happens be right for you all. #WotW

    1. Thank you Helena – it is good that hubby tends to be more analytical and rational about these things. With regards to how Jessica feels about it all, she understands that she goes to the hospital for the doctor to “take pictures” of her heart. For her, the big focus is the fact that she has to have ECG stickers put on her chest which she hates and gets very upset about every time because they hurt when they get taken off. I always make sure I have special wipes to dissolve the adhesive and help remove them but it’s still the most traumatic part of the visit for her. Other than the fact that she has stickers on her chest, there are good toys to play with in the waiting area and she gets to watch Peppa Pig whilst she has her echo done, she doesn’t really seem to take much of what is said in. She knows that she has a “special heart” and that the doctors are helping to look after it and make it better but that’s about all. For now, I’m thankful that she doesn’t have many more questions. We will prepare her more fully before she goes for her next op and there are plenty of resources available which will help us with this.

  5. Aww! Sending hugs. Cardiac check ups are so worrying. I still stress when my girls have theirs and we don’t have any surgeries planned for years and years….I can’t imagine how you feel.
    You will all get through whatever comes your way….Jessica is a little trooper and you are an amazing mother.

  6. I can’t even begin to imagine how this is making you all feel. After being reminded by two people this year how important your heart is with scares of our own, it really does bring a whole new level of anxiety. I really hope everything goes well with Jessica and you aren’t waiting too long for the answers that you need. I really need to listen to your words of advise too as this year has really knocked me and I need to pick myself up and dust myself off #WotW

    1. Thank you Jane – I hope that things start getting better for you soon – it’s hard sometimes to pick yourself up and dust yourself off when things are difficult.

  7. I wish I could give you an enormous hug but I will send a virtual one in its place. Stay strong lovely! You are amazing and your reaction is perfectly normal. We are all behind you too. Always here to listen. You have had a lovely week too focusing on making happy memories. I remember a therapist telling me not to think too far ahead and I think that is good advice. I am rooting for you!!!

    1. Thank you so much Catie – virtual hugs are very much appreciated! Not thinking too far ahead is good advice – it’s something hubby reminds me of quite often too.

  8. Not an easy time for you, sometimes the not knowing can be worse, than knowing what is coming for your Jessica. My heart goes out to you. On the happy side of the coin, isn’t it fab when you don’t need to wear coats, spring is on its way! x

    1. Thank you Laura – I think sometimes knowing is worse – the prospect of this next surgery definitely feels much harder because I know so much more than I did when Jessica was a baby. Focusing on making memories is a good way of trying to take my mind off it – and yes, it is lovely to be able to shed the coats!

    1. It is worrying waiting for surgery and I can imagine that it must have been a very anxious time with your son – hope that the surgery was a complete success for him x

  9. Hi Louise, I don’t blame you for feeling scared and anxious at the thought of more surgery for Jessica. I’ve never met you and I honestly feel for you.

    Taking joy from the simple things in life sounds a perfect way to change focus. You certainly sound like you’ve had fun over Easter with plenty of egg hunts and if my husband were to surprise me by cleaning the house from top to bottom he would be a very lucky man indeed!

    xx

    1. Thank you Debbie – focusing on the fun moments is a good way of trying to take my mind off it all – hubby has been very good at reminding me that no decisions have been made as yet (and yes, the cleaning the house was amazing – very unexpected but so lovely to come home to!)

  10. I’m not surprised you are feeling so scared and anxious, it must be so worrying thinking ahead to Jessica’s surgery. I am so impressed that your husband did all the cleaning, can he have a word with mine?! Thanks for linking up to #HappyDaysLinky x

    1. Thanks Sian – it is worrying knowing that we are starting to take steps towards it now, just trying not to think too much about it until I have to. Thanks for hosting #HappyDaysLinky x

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