As a family of a sick child you may find that your friends stop visiting, your family stop calling and the people that have always been there for you seem to disappear...
This isn't because they don't care it is more likely that they don't know what to say.. They knew you before all of this happened and whether you choose to admit it yet, you are no longer that same person and you never will be again. Your friends and family don't know this 'new person' and don't know how to make you happy, where you can and can't go, what your schedule has now become and all the new needs and stresses your life now brings with it..
Whilst your life has stood still in the moment of diagnosis, the hospital visits and the treatments.. theirs have carried on. They no doubt have their own issues, stresses and changes happening around them but they will worry about burdening you with all of this and feel insignificant in comparison. You can pretend that you care, but we all know *sometimes* we do find ourselves internally rolling our eyes when somebody posts on Facebook that their life is over because "they've run out of cheese for the party" but that doesn't mean it hurts any less when they unfriend you even though you haven't said anything wrong. Is might be that you just simply haven't said anything at all..
You'll probably find yourself avoiding them at points.. Shutting down, rarely commenting or posting on Facebook and hiding from the world are just some of the things we all do in our moments of absolute despair and when your friends and family don't reach out or visit you get upset and then shut them out more then of course making the situation worse as they will assume you want to be alone. Fact is nobody wants to be alone so if you're a friend of a family with a sick child PLEASE just send them a message occasionally.. they aren't deliberately 'not caring' about you they are simply overwhelmed and probably feeling a bit hermit like!
The absolute truth is that NOBODY understands what you are going through except maybe those that have been there or are still going through it themselves.. but then sometimes we don't want life to be all about these illnesses every day and we want some normality to be built around the chaos! That's where making new friends can help.. if you feel strong enough to go out there and make some! They will understand from the outset who you now are and what your life entails. You don't have to relive horrible events if you choose not to but you get to say.. "This is me, this is my sick child and this is our life. I'm not looking for sympathy or to talk about it I just want to focus on enjoying life. We are free at these points and we can do these things if you're interested I'd love to be friends and meet up?"
Feeling alone during the hardest parts of your life can be tough for anybody and you may be feeling like people don't care. If you feel this way then I sympathise with you and I send you a virtual hug.. <3
Friday 25 November 2016
Sunday 20 November 2016
Christmas Countdown
This year Christmas is going to be an emotional one in our house.. Memories of last year, all the battles and trauma that followed and all the pain we've faced in 2016. I think we will be glad to see the back of this year in some ways but we are truly thankful that we still have Dylan with us so our emotions are definitely running high as we approach the festive season..
Christmas Day 2015 was a disaster.. we had worked so hard to make the build up to Christmas magical like we do every year as it is my absolute favourite time of year. Not because of the gifts but the whole feeling that surrounds it of family and warmth and hope for the future. The way the children's eyes light up at the fairy lights on every house we pass in the car, the whole 'Elf on The Shelf' tradition that has them giggling each morning, the baking, the crafts, the events happening everywhere. Whether it's from being a December baby myself I don't know but I've always loved Christmas until last year.
Dylan wasn't himself and was miserable opening presents. He was tired and moody and we didn't know why. He didn't want his lunch and started to get sick and hyperventilate. That's when we realised there was a problem and took him to the walk in clinic, followed by an ambulance ride to A&E and that was where this journey all began. After an X-ray we were quickly moved into the resus bay 'just incase' and were told Dylan had a collapsed lung and it appeared that his lungs were likely covered in cysts called Bullae.. another ambulance ride to QMC and theatre just before midnight for his first chest drain. We spent the rest of December and the New Year in the hospital..
Of course you know the rest of the story.. despite attempting to redo Christmas in January it wasn't the same with the big black cloud of a potential terminal illness hanging over our heads..
Now fast forward to this year and myself and Mike are determined to try our utmost to make it special not only for Dylan and Bryce who missed out on so much last year, but also for Logan's first Christmas. We've gone overboard with shopping, started planning our ideas for our 'Elf' each day, planned lots of crafts and baking and we have brought at Christmas jumpers for the kids. Truthfully we've even watched a few Christmas movies already too!!
Yesterday the two eldest boys helped the wonderful Caroline Blake switch on Derby Intu's Christmas lights and I have to say it was an amazing experience we are so grateful for. They enjoyed every second and we hope this marks the start of a joyful festive season and hopefully a happy new year. There will be some sadness surrounding painful memories and thoughts of those friends lost along the way and those far away but there will also be so much joy and happiness that the two will balance out and no doubt tears will be shed for both reasons.
We do have two cycles of Chemotherapy to get out of the way in December first.. one runs from Nov 29th - Dec 2nd but the final one of the year runs Dec 20th - 23rd which is so close to Christmas it makes me nervous! If anything goes wrong that cycle such as a bad reaction, fever or line infection then we are looking at a stay in the QMC again like last year. But truthfully after almost loosing Dylan at Easter, all that matters is that we are all together on Christmas Day, no matter where that may be!
We didn't dream that we would still have Dylan with us this year and sadly not all families have their loved ones and children at Christmas so it's important during all the festivities to remember to think of those no longer with us and be thankful and grateful for everything we have.. <3
Christmas Day 2015 was a disaster.. we had worked so hard to make the build up to Christmas magical like we do every year as it is my absolute favourite time of year. Not because of the gifts but the whole feeling that surrounds it of family and warmth and hope for the future. The way the children's eyes light up at the fairy lights on every house we pass in the car, the whole 'Elf on The Shelf' tradition that has them giggling each morning, the baking, the crafts, the events happening everywhere. Whether it's from being a December baby myself I don't know but I've always loved Christmas until last year.
Dylan wasn't himself and was miserable opening presents. He was tired and moody and we didn't know why. He didn't want his lunch and started to get sick and hyperventilate. That's when we realised there was a problem and took him to the walk in clinic, followed by an ambulance ride to A&E and that was where this journey all began. After an X-ray we were quickly moved into the resus bay 'just incase' and were told Dylan had a collapsed lung and it appeared that his lungs were likely covered in cysts called Bullae.. another ambulance ride to QMC and theatre just before midnight for his first chest drain. We spent the rest of December and the New Year in the hospital..
Of course you know the rest of the story.. despite attempting to redo Christmas in January it wasn't the same with the big black cloud of a potential terminal illness hanging over our heads..
Now fast forward to this year and myself and Mike are determined to try our utmost to make it special not only for Dylan and Bryce who missed out on so much last year, but also for Logan's first Christmas. We've gone overboard with shopping, started planning our ideas for our 'Elf' each day, planned lots of crafts and baking and we have brought at Christmas jumpers for the kids. Truthfully we've even watched a few Christmas movies already too!!
Yesterday the two eldest boys helped the wonderful Caroline Blake switch on Derby Intu's Christmas lights and I have to say it was an amazing experience we are so grateful for. They enjoyed every second and we hope this marks the start of a joyful festive season and hopefully a happy new year. There will be some sadness surrounding painful memories and thoughts of those friends lost along the way and those far away but there will also be so much joy and happiness that the two will balance out and no doubt tears will be shed for both reasons.
We do have two cycles of Chemotherapy to get out of the way in December first.. one runs from Nov 29th - Dec 2nd but the final one of the year runs Dec 20th - 23rd which is so close to Christmas it makes me nervous! If anything goes wrong that cycle such as a bad reaction, fever or line infection then we are looking at a stay in the QMC again like last year. But truthfully after almost loosing Dylan at Easter, all that matters is that we are all together on Christmas Day, no matter where that may be!
We didn't dream that we would still have Dylan with us this year and sadly not all families have their loved ones and children at Christmas so it's important during all the festivities to remember to think of those no longer with us and be thankful and grateful for everything we have.. <3
Thursday 10 November 2016
The Elephant In The Room
I think it's time for me to address the elephant in the room.. or more the media, which is the article the Daily Mail printed. If you haven't seen it you can find it on google. It is a very accurate article compared to all the rest out there, bar one misprint, but instead of focusing the story on Dylan's recovery they also focused it on me..
"My guilt at giving up on my dying son: Kerry wanted to let doctors turn off their son Dylan’s life support against her husband’s wishes.... but then he became the 'boy who came back from the dead'"
Firstly, I did not WANT to let the doctors turn off life support, what mother in their right mind would want that?!! Following the article I had some vile messages from people that hadn't taken the time to read on past that point and thought of me as a bad mother evidently. This really hurt me at the time and coupled with a few other issues such as friends turning their backs on me and a few sleepless nights with Logan I was in a bad place for a while.
The truth is.. I thought my son was suffering! I was told he was dying and convinced repeatedly by nurses that we were potentially being selfish and cruel. They even told us of stories where they have had to take parents to court that refused to accept their children were only being kept alive by machines. Of course I didn't want to lose him I was completely heartbroken. I kept reading story after story of miracle recoveries and hoped with all my heart for one but I couldn't bare the thought of watching him go in to sudden cardiac arrest and felt letting him slip away peacefully was more humane. They had talked to us above how it would all go ahead and all the ceremonial aspects and support etc. I felt there was no other option besides sitting there and waiting for his heart to stop which felt wrong.
Unless you have been in our shoes then you cannot possibly understand, it is like literally being torn in two.. you want to fight every single second until there is no fight left because you cannot comprehend the thought of life without them but you also love them so much that you'd rather put yourself through the heartbreak of losing them than watch them suffer and cause them any more pain unnecessarily just for your own selfish needs. I just didn't want him to suffer anymore because he is my baby and I love him and that is the beginning and end of it all.
Yes I did and still do sometimes feel guilty knowing now that he did fight back in the end BUT had we not taken that first step and stopped the muscle relaxant we wouldn't have known he needed more sedation and with a heart rate of 200+ it was a miracle he made it through the night before, he WOULD have gone into cardiac arrest had it remained that high much longer and he would NOT be here today. So truthfully in taking that step towards turning life support off we probably saved his life and that is what I try to take from it all now and I refuse to be defined as the mother who 'feels guilty' or 'wanted to take her son off life support' because I am so much more than those labels!!
"My guilt at giving up on my dying son: Kerry wanted to let doctors turn off their son Dylan’s life support against her husband’s wishes.... but then he became the 'boy who came back from the dead'"
Firstly, I did not WANT to let the doctors turn off life support, what mother in their right mind would want that?!! Following the article I had some vile messages from people that hadn't taken the time to read on past that point and thought of me as a bad mother evidently. This really hurt me at the time and coupled with a few other issues such as friends turning their backs on me and a few sleepless nights with Logan I was in a bad place for a while.
The truth is.. I thought my son was suffering! I was told he was dying and convinced repeatedly by nurses that we were potentially being selfish and cruel. They even told us of stories where they have had to take parents to court that refused to accept their children were only being kept alive by machines. Of course I didn't want to lose him I was completely heartbroken. I kept reading story after story of miracle recoveries and hoped with all my heart for one but I couldn't bare the thought of watching him go in to sudden cardiac arrest and felt letting him slip away peacefully was more humane. They had talked to us above how it would all go ahead and all the ceremonial aspects and support etc. I felt there was no other option besides sitting there and waiting for his heart to stop which felt wrong.
Unless you have been in our shoes then you cannot possibly understand, it is like literally being torn in two.. you want to fight every single second until there is no fight left because you cannot comprehend the thought of life without them but you also love them so much that you'd rather put yourself through the heartbreak of losing them than watch them suffer and cause them any more pain unnecessarily just for your own selfish needs. I just didn't want him to suffer anymore because he is my baby and I love him and that is the beginning and end of it all.
Yes I did and still do sometimes feel guilty knowing now that he did fight back in the end BUT had we not taken that first step and stopped the muscle relaxant we wouldn't have known he needed more sedation and with a heart rate of 200+ it was a miracle he made it through the night before, he WOULD have gone into cardiac arrest had it remained that high much longer and he would NOT be here today. So truthfully in taking that step towards turning life support off we probably saved his life and that is what I try to take from it all now and I refuse to be defined as the mother who 'feels guilty' or 'wanted to take her son off life support' because I am so much more than those labels!!
Sunday 6 November 2016
Halloween & Fireworks
It's often the simple things in life that make me feel lucky, the things we often take for granted. This last two weeks there has been a lot of those moments in our house as we approach the holiday season..
We have always taken every opportunity to celebrate occasions with our children and this year has been no exception so far..
Despite not having any parties to attend and not being able to go trick or treating properly, we still managed to make the most of Halloween with a visit to a local farm's spooky trail, pumpkin picking and carving and a trip to a theme park with a trick or treat trail. We also dressed up at home and decorated the house and had 'party' food and spooky films!!
The same goes for Bonfire Night.. unfortunately we missed one display we wanted to attend and of course we have two small dogs so we wouldn't have fireworks at home. But we made chocolate apples like we have previous years (even though more expensive than just buying them it's definitely more fun) and we did go to a display near my sister and her husband's house with the family which was lovely..
Watching the kids kicking the leaves, carving pumpkins with Daddy, pulling silly faces, searching the sky for fireworks and making and munching chocolate apples makes me feel so warm inside despite the cold weather! I have moments, particularly on special days, where I look at the three of them and think how close we came to only having two children on this earth. Those thoughts use to make me sad and make me relive the awful events of Easter weekend but now they make me smile instead and all I can think is how insanely lucky I am and how much I adore those cheeky (chocolate covered) faces!
We have always taken every opportunity to celebrate occasions with our children and this year has been no exception so far..
Despite not having any parties to attend and not being able to go trick or treating properly, we still managed to make the most of Halloween with a visit to a local farm's spooky trail, pumpkin picking and carving and a trip to a theme park with a trick or treat trail. We also dressed up at home and decorated the house and had 'party' food and spooky films!!
The same goes for Bonfire Night.. unfortunately we missed one display we wanted to attend and of course we have two small dogs so we wouldn't have fireworks at home. But we made chocolate apples like we have previous years (even though more expensive than just buying them it's definitely more fun) and we did go to a display near my sister and her husband's house with the family which was lovely..
Watching the kids kicking the leaves, carving pumpkins with Daddy, pulling silly faces, searching the sky for fireworks and making and munching chocolate apples makes me feel so warm inside despite the cold weather! I have moments, particularly on special days, where I look at the three of them and think how close we came to only having two children on this earth. Those thoughts use to make me sad and make me relive the awful events of Easter weekend but now they make me smile instead and all I can think is how insanely lucky I am and how much I adore those cheeky (chocolate covered) faces!
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