A terrible freedom – life after the loss of a child with a disability

If you’d asked me to describe our daily life with Jessica, I would have said it was pretty normal. All the things that came with having a child with a complex heart condition were just part of our everyday life. We did them without really thinking about them and never really noticed their impact. It was just our normal. It wasn’t until we lost Jessica that I really noticed how different life with her was, how many little everyday things suddenly disappeared from our lives and how much I miss them.

 

Jessica in her buggy - "A terrible freedom - life after the loss of a child with a disability"

 

 

Medicines

For six and a half years, we had a daily routine of giving medication. For most of that time it was four times a day. It was an instinctive part of our routine. Occasionally when there were extra meds (antibiotics or inhalers) it became so complicated, I’d have to write it all out and put it on the fridge to keep track of it all though. It seems so strange that we no longer need to give any meds. The little box of syringes and medications is still in the kitchen where it always was; the pouch with supplies for when out and about still in my bag. I have moments of feeling like I’ve forgotten to do something because I no longer have to give them. I also feel like I should be dropping repeat prescription forms in whenever I pass the doctors’ surgery.

 

A selection of some of the medicines that Jessica was on at one point

 

There are other unexpected moments when the lack of meds for Jessica has an impact. For instance, I went to buy liquid paracetamol for Sophie and suddenly realised I could also buy ibuprofen for her if I wanted. Jessica wasn’t allowed ibuprofen due to being on aspirin. It was hard sometimes when she was unwell to not be able to give anything other than paracetamol as the effects would sometimes wear off before I could give the next dose. We never had ibuprofen in the house as I worried that I might give the wrong thing when sleep deprived. With other over-the-counter meds, I always had to check whether they were ok to take with her other medications. None of that is part of our normal life anymore.

 

 

Jessica’s buggy

I miss pushing Jessica around in her buggy. The boot of our car seems so empty without it. Sometimes I still instinctively go to get it out. Then I realise that it’s not in the car anymore; that we no longer need it. During the last week of Jessica’s life I’d worked out how to fit it in the car if we had all seven seats up. I’d already thought about how we could use a sling for the new baby so we could manage getting out with a new baby and Jessica needing her buggy. I was happy that we could manage the changes needed with Peanut’s arrival. Now it all becomes simple. No need for extra seats up in the car and we can just use a baby buggy for Peanut.

 

Jessica in her buggy about to head out on the preschool run

 

I still look for the accessible route on days out; still notice when paths are not buggy-friendly. Each time I walk to preschool with Sophie, I remember how Jessica would be with me on the days she was off-school. I remember which bits of the pavement were hard work with her buggy and miss those walks with her. I miss tucking her blanket around her and making sure she was comfortable.

 

Grief has strange triggers sometimes. Seeing the disabled toilets was an unexpected one for me recently. I still sometimes think twice about which toilets I’m heading for when out and about on a family day out. I remember that last week on our holiday when Jessica noticed the disabled sign on the toilet door. She asked about the wheelchair on the sign and I explained that her buggy was her wheelchair. I still carry the radar key on my keys even though I don’t need it now. I guess it will still be useful after Peanut arrives for those times when the baby changing facilities end up being in a radar key controlled disabled toilet.

 

 

Hospital visits

It’s strange to no longer have regular trips to various hospitals for check-ups, visits from the community nurse or open access to the children’s ward. I miss that part of our life; the familiarity and the reassurance of it all. It’s funny how you get so used to that environment and how safe it can feel.

 

Jessica riding her IV pole in the hospital

 

 

The loss of our community

For seven years we were part of a community of other heart families. The loss of Jessica has also meant the loss of the heart family community to some extent. When you have a heart child and hear about a fellow heart family losing their child, it brings home that fear that constantly lurks at the back of your mind. Jessica’s death is particularly frightening for our heart family friends. It came suddenly and unexpectedly. Being faced with such a stark reminder that tomorrow is not promised is too hard for some to cope with. I understand that, but it is hard to lose friendships and to no longer feel part of that community in the way we once were.

 

At the same time, we’ve also become part of a new community – the one we never wanted to join, the one no-one wants to join. A community of bereaved parents. There are so many lovely people in this community and getting to know some of them has been helpful. I just miss being part of my old community too.

 

Travel restrictions

I haven’t been on a plane in over seven years. Jessica wasn’t able to fly due to her heart condition. In all honesty, I never missed it. We were happy with UK-based holidays or a road trip around France. Although this restriction had just been lifted post-Fontan, we hadn’t started to think about flying anywhere. We would have had to also check whether there were any extra considerations for Jessica, e.g. whether she might have needed to take oxygen. Now we could just fly somewhere on holiday without any extra things to think about; not to mention the fact that travel insurance suddenly becomes much easier to obtain too.

 

Camping is another one. We never went camping with Jessica. I was always worried about the difficulties with her regulating her temperature. She always got cold so easily and I wasn’t sure if we could keep her warm enough. This isn’t a worry with Sophie.

 

 

The loss of identity

Losing the restrictions we had has also come with a loss of identity. Am I still a heart mummy? Part of me tells me yes, I am, and I always will be.  And yet, in many ways I am no longer a heart mummy. I am no longer a parent to a child with a complex medical condition. Nor am I a “normal” parent. Our life may now appear normal, but it isn’t normal and never will be normal. That emptiness that is forever there is invisible to those on the outside.

 

 

Other day to day considerations

As well as the things above, there are all the little day to day things that were just automatic. Always making sure I had extra layers for Jessica as well as spare clothes. Staying reasonably close to home during the day in case school phoned with any concerns. Constantly being aware of Jessica’s colour and energy levels and the little ways in which that had an impact on the activities we did (such as swimming).

 

Jessica having her sats checked

 

Suddenly we have so much more freedom in our day to day life and I hate it. I never resented the restrictions we had and the removal of them is unsettling. The price for this freedom is too high. I would rather have the restrictions back; or even increased, if it still meant having Jessica.

Our daily life has changed in so many ways. We miss Jessica – her smile, her laughter, and the joy we brought to our lives but we also miss the little things that were part of our everyday life with her. We have a new normal to adjust to; a new normal to try to accept. Having to accept that new normal, and the freedom that comes with it, is incredibly hard to do.

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7 Comments

  1. June 14, 2018 / 7:47 am

    Jessica has left such a huge hole in your life. I can’t imagine what if must be like to keep noticing new things which have changed and will never be the same again. Your new ‘freedom’ must be so hard and a constant reminder of what you’ve lost. X

  2. June 14, 2018 / 11:10 am

    Louise,

    I can very much relate to what you’ve written, especially about Jessica’s medication, but also about some other things.
    My father’s medication got more complicated in 2009, and for the next eighteen months (while he was still living at home) I had to phone him morning and evening, taking him through his medication item by item. This wasn’t an easy job. I once blogged: “Do old people who are on complex medication and have no-one to supervise them, take the right medication at the right time? I doubt it very much.”
    Then he went into hospital, and for a while I had “moments of feeling like I’ve forgotten to do something” because I didn’t have to phone him for his medication sessions. And I didn’t have to collect his prescriptions any more. I certainly had new freedom, but it had come at a high price.
    Then on New Year’s Day 2011, shortly after he died, I was in my car, “…waiting for the traffic-lights to turn to green. I reflected that this was the first time I had ever left [my home town] without seeing the Old Man.” As you say, “Grief has strange triggers sometimes.”
    We’ll be continuing to support you as you adjust, gradually, to your new normal.

  3. June 14, 2018 / 9:30 pm

    This is heartbreaking….
    These are the things you wouldn’t even think about until you lose a child…
    Thinking of you, as always x

  4. Pat Wilder
    June 15, 2018 / 8:02 am

    I know the loss od a child must be the most devastating thing ever, but I remember saying when I lost my husband that I had my freedom back, a freedom I never wanted though. I was happy looking after him, giving medication, constant hospital visits and yes where was their easy access fir his wheelchair. My thoughts are with you and your family and I’m sure it’s been said before but that hole Jessica has left will get smaller as the years pass.

  5. June 17, 2018 / 1:49 pm

    So many things that I’ve never considered. The more I read about Jessica the more I realise what an amazing little girl she was. To bring so much joy to everyone she met despite all she was going through is incredible, especially for someone so young. Even in the most difficult time of unimaginable grief, you must be so proud to be Jessica’s mummy.
    Nat.x

  6. Liv
    October 12, 2018 / 12:12 am

    Thank you so much for this blog. I found you last night in the lonely darkness, while I searched the net for some sort of rhyme or reason for why my little girl is not here with me anymore. You see our little heart warrior also passed away recently, on Sept 4th. She was 2 years and 9 months old. She too was doing so well, after a very hard start and many battles. Then just like that she was gone. My husband and I sit here everynight talking about all the empty time and space we now have, no more meds, no more equipment, no more appointments. We have to stop ourselves from getting up each night at meds time, we have to stop ourselves from jumping up to fix her feed pump everytime we hear a beep, we have to now tiptoe around the house at night, so as not to wake the twin brother that she left behind, because we no longer have the noise of her oxygen concentrator creating a constant background noise. The terrible freedom that you wrote about is just so so heavy and vast, I hate it, but I’m glad that I’ve found someone else who gets that. Thank you!

    • Louise
      Author
      October 12, 2018 / 3:25 am

      Liv, I am so very sorry for the loss of your little girl. Losing a child so suddenly and unexpectedly when they have overcome so many battles is utterly heartbreaking. I am glad that my words have helped you feel less alone. I too have had nights of sitting in the darkness trying to find someone else who understands. We are now coming up my daughter’s six month angelversary and while I have now adjusted to new routines, I still miss all the things that were part of our life with Jessica. Her meds are still in the same place in the kitchen. Sending huge amounts of love and hugs to you and your family xxx

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