Yes, I am still here, I know that it's been a while since I updated but as you can guess from the title of this blog, life has just been a bit too overwhelming to find the time/motivation/energy to fire up the laptop and write about it, but I think I have my blogging mojo back and in the interests of ensuring that the world understands what it is like for families like ours it's time to pick myself up and get the words down..
I hardly dare to write this but it's been two months since Daisy's last emergency hospital admission. Two months where well meaning people who don't know my world equate no hospital stays with Daisy being well. If only this was the case, no hospital stays are because every day is a battle for us to keep her out of hospital. Not being in hospital does not mean that she is better, it means that bar a life threatening emergency there is nothing else they can do for her. And actually the definition of life threatening emergency seems to be stretching a bit now, a couple of years ago we had to take Daisy to hospital if she spiked a temp or had positive cultures, now we judge whether this is a "manage at home" situation or a "call 999" one. The last admission was for intravenous pain relief but since then Daisy has been on various intravenous antibiotics at home to manage various bacteria which colonise the bits of plastic in her body. Now together with the TPN drip we put up every night and which provides her nutrition into her blood stream, we also draw up at least one antibiotic - a few weeks ago it was meropenem, now it's augmentin, IV antifungals are being mentioned too.....in addition to this, because of her worsening foregut motility and severe reflux (we are not talking vomiting here, we are talking gut renching, blue in the face wretching and projectile vomiting of luminous yellow bile...) we also administer anti-reflux medication intravenously. Drawing up an IV is not like pouring out a medicine, each iv has it's own way of being prepared - some (if we are really really lucky!) are ready mixed, most need mixing with something else - saline, water or some other solvent. They need to be drawn up, measured, air bubbles dispersed and administered. Sometimes as a slow push, sometimes as an infusion via a pump and always with a saline flush between each medication. So another compromise we have had to make to keep Daisy out of hospital and with her family is to add intravenous medication into our daily routine. But it is working and she is definitely better on IVs than she was off them. It's just sometimes it would be nice just to be Daisy's mum, sometimes it would be nice to say "tell you what let's not bother with putting the TPN on tonight, let's go out to the park instead", sometimes it would be nice not to have to change her catheter knowing it's going to make her cry or drag her away from her toys to change her stoma bag because the contents are leaking all over her clothes and burning her already sore skin....sometime there are so many things I would like to do rather than be Daisy's nurse but this is the pact that we have made...for Daisy to be here with us, for Daisy to be enjoying life then this is how it needs to be.
It's just sometimes when I have a brief moment and allow myself the really think about the enormity of the situation I realise how unfair it is, on Daisy, on us, on her siblings. Why does she have to have this rare, sporadic syndrome? It's nothing to do with one of us carrying a rogue gene, or our age or race, just one of those, chance in a million (make that 28 million) occurences that could have happened to any of you. So why then having this dodgy gene mutation does she then have to have intestinal failure meaning that she relies of chemicals and machines and plastic to live and then the final cruel blow - why does her bladder then decide that it's going to join the party too? That's just not fair.
It's the ripple effect that's tough too - Daisy has three siblings. These four children have one shot at childhood and while we constantly tell them there is no such thing as a normal family, a perfect life, I feel guilty at how sometimes I rely on their help as I change stoma bags and catheters and run through TPN when there is no other adult around to help me. Ask any of my children about TPN, Hickman Lines, Mitrofanoff stomas, gastrostomies and jejenostomies and they will confidently tell you all about them, probably more confidently than a junior doctor. They seem oblivious to the physical manifesations of Daisy's disease and see her simply as their sister and she in turn has them completely and utterly wrapped around her little finger. Daisy rules the roost at our house, and given her larger than life personality I think she would still rule the roost despite all her medical problems.
But for all of us, while we present a facade of coping those feelings of drowning are bubbling under. All three of my older children are receiving emotional support - one from CAMHS (child & adolescent mental health services) , two from the hospice and young carers groups. Andy and I attend counselling sessions. These sessions have given me time to reflect and take stock and think about me and what's important. I felt that because I am intelligent, articulate, willing but I think above all, so desparate to have Daisy at home and keep the family together, I was being laden with more and more work and responsibility and risk to manage this. I felt like I had been thrown into a lifeboat with a load of supplies and set adrift left to fend for myself while everyone waves from the land. But the thing is, I am not waving, I am drowning - I am drowning under the overwhelming workload that comes with looking after a chronically sick child, trying to be there for the other children and listen to their problems, trying not to get angry with Theo's asperger's outbursts and meltdowns and reminding myself it's not him, it's the autism, drowing under the paperwork and bureaucracy that comes with my world.....and it seems to me that the more that the world thinks you are coping, the less likely it is to check if you really are.
So when I stood back after a recent long, all day appointment at Great Ormond Street and took stock of all the addtional meds and IVs that we were being asked to add in to our already packed daily routine and I had an epiphany and I realised I could just say no. So I did. It was not about putting Daisy at risk, it was about ensuring that overloading me (because remember it is mainly me, Andy works long long hours to keep a roof over our head) did not put Daisy at risk. This was a really liberating feeling because suddenly the wheels of support starting to turn and a better, more manageable plan was formed, a plan that could be managed at home taking into account the workload and Daisy's needs. Since that time I have been on a bit of a roll, realising that I don't have to do it all. I have stood back and taken a look at my life and what is important, for me the most important thing is my family and my marriage. Since having Daisy I have gradually acquired other projects and interests to take the place of the career that I had to give up when she was born, these things have started to take up more and more of my time away from the family and I have realised this is not what I want, so taking advice from the great Homer Simpson I have asked myself "Can't somebody else do it?" and I have discovered that I am not infallible, the world will not fall apart if I withdraw myself from a voluntary group or committee, there will always be enthusiastic souls like me who are happy to take on more than the lion's share of service to the community!
I have not given everything up though, I have made room in my life for something that is just for me, long distance running. I have run on and off since I was twelve, I ran a marathon at 13. I may not be fast but I have the mental and physical stamina which ensures that I can run and run. And recently this is what I have been doing, I plug in my music and run, morning, evening, it does not matter, running is my prozac, it's my time out away from everything where I can meditate to the repetitive rhythm and escape into music and thoughts. Running keeps me physically and mentally strong to keep going, because I have realised that life with Daisy is not a sprint, it's not a marathon, it's an ultra marathon, iron man, triathlon, decathlon endurance event and she, and the rest of the family, needs me to be up to the challenge.
So I have regained my mojo and with it normal (maybe a bit more streamlined and focussed) service has resumed.
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
special needs (85) costello syndrome (44) disability (32) aspergers (19) Great Ormond Street (18) TPN (18) cancer (18) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)