Welcome to the Staying Alive “High Five”, a space I want to create where other Irish parents who need to highlight their situation, the difficulties they face right now or maybe even the positive outcomes of their fight and struggle can be shared here in order to raise awareness for those of us who basically have no clue.
The aim is to try and help these parents in any shape or form, be it through support on social media or through any avenues that they may deem applicable. Each situation will be different but support is support and it is paramount that we do our bit and do what is right as every child deserves the same right and chance as the next. There is great power in knowledge and huge power in the strength of the everyday people just like you and I, who are the backbone of it all.
The “High Five” is a simple salute to those parents who are doing the best that they fucking can in dire circumstances and to let them know we see them, recognise what they are doing and more importantly, support them.
My first “High Five” is Brenda O’Connell-Barry, another Cork mom to son Fionn, 3, of FIGHT FOR FIONN. We actually were introduced a few years back before Fionn or Bodhi were even born through a work for home opportunity we were both a part of. Little did we know years down the line that we would be brought back together again for a much bigger reason, our sons.
1. First of all, “Happy 3rd birthday” to Fionn, who turned 3 over the weekend, for those who aren’t aware can you tell us a little about Fionn and the difficulties he faces?
Fionn is 3 years old now but sadly cannot yet sit unaided, stand, walk or talk. He also has a severe visual impairment and extremely bad reflux and constipation at times.
He is fed via a special tube into his tummy called a mic-key button, he cannot have any liquid by the mouth and thankfully because he is such a fighter he is learning again to have spoon feeds but they must be a specific consistency as anything too watery could possibly be aspirated (this means some of the food goes into the wrong tube, down into his lungs instead of into his belly and can cause a thing called aspirate pneumonia and possible choking and even death)
He suffers from terrible agitation and can scream for days on end and goes through periods where he also may not sleep for 5 days or nights. In essence it is like caring for a baby of 5 months of age in a 3 year olds body. He has to be lifted and moved everywhere and depends on us solely for every aspect of his daily life.
He needs 24 hour care as his swallow is unsafe and cannot be left unsupervised for even 5 minutes as he could possibly aspirate and choke on even his own saliva. We administer medicine several times a day and he is also fed 4 times daily which can take 2 hours per feed.
2. What do you find the biggest challenge as a mother, to date, has been?
To be honest every day is a challenge.
I find it difficult to even view myself as a mother, we seldom get to do the things an average family would do.
I feel I am trying to be a doctor, nurse, dietitian, physiotherapist and alternative remedy therapist before being a mom even comes into it, but my biggest challenge is trying to cope watching my baby in pain and not being able to make it go away, to not have the proper facilities for him and desperately struggling to keep fundraising and fighting every day on top of it all….
3. Are you receiving any funding or help in order to put in place the necessary items for Fionn to live in comfort in his own home?
We need to basically put a bungalow onto the side of our small cottage. Our rooms are too small and have narrow doors and some steps which makes moving Fionn’s equipment extremely difficult.
We desperately need the appropriate bathing and changing facilities for him as all his equipment is only suitable for a baby. His current bedroom would not even have the room for any of this equipment, going forward Fionn will need a paediatric hi/lo bed, a changing table, a shower trolley and a hi/lo bath, these are all EXTREMELY expensive pieces of equipment but absolutely necessary.
Our kitchen/living room is packed with a stander, a p pod, a special chair and his buggy, none of which can be easily moved to any other area of the house due to the step and narrow door, when we use one piece of equipment it means several minutes of jigging around the furniture to put all the other bits back out of the way so we can walk in the door.
In the cold weather we cannot all sit together in the sitting room as it is too small and his chairs are so large Fionn ends up too near the fire if it is lighting as there is simply no room for him anywhere else in the room.
If Fionn is unwell for any reason he struggles to keep down his feed so moving him is very risky, we have to try to keep him still without and bumping or unnecessary handling, this is extremely hard in our current situation as he literally cannot move freely between any of our rooms currently. There is a big step dividing the kitchen/living room area, an extremely narrow door which all of Fionn’s chairs have to be shoved roughly through into sitting room, he cant fit any seating equipment into the bathroom so he must be carried through the kitchen/living room and sitting room and hall from his bedroom and the door way to the front hall and bedroom are tiny and are also obstructed by a couch and door saddle so he cannot access even his own bedroom without being lifted out of his chair and carried.
Fionn has to be carried from his bedroom through the sitting room and kitchen to the bathroom to be washed, I find this incredibly difficult, carrying my child in various states of undress through the main living areas of the house I really could go on all day about how our home is so unsuitable.
Sadly like any other couple we had not bargained on this happening, when we bought our charming cottage and spent every penny we had renovating it all those years ago it never dawned on us to make it wheelchair accessible or that having bedrooms only upstairs would be a problem (this is another issue), our own bedroom is upstairs and as our old style cottage stairs is like a ladder it is totally unsafe to carry Fionn up what was to be his beautiful bedroom next door to ours. Now sadly one of us has to stay up most of the night caring for Fionn if we have no nurse to help as we have no bedroom downstairs for ourselves.
We have applied for the housing adaptation grant but sadly even this does not come close to enough for the house extension and renovations. Should our application be successful we are entitled to less than €6000/8000, the application process is like everything else, complicated long and drawn out and of course added pressure on me trying to gather documents in the middle of everything else.
4. Can you give people an idea of how much the weekly therapy sessions alone cost?
To purchase Fionn’s organic food and supplements at the health food shop costs a MINIMUM of €150 per week, his goats milk is almost €40 per tin, (Fionn is dairy intolerant), a free range chicken is €13 and an organic one is €24 which I then simmer for hours to get bone broth along with potatoes and veg all organic which is then pureed for him, he has several types of organic porridge, nut butters, coconut milk, coconut oils all dairy free diet for Fionn with as many calories as possible to build him up as he lost a significant amount of weight during last winter from various illnesses.
I have also studied and learned about essential oils and use a huge range of these on Fionn, I have different combinations of these to ease all his various symptoms, peppermint and cardamon for his tummy, lavender and vetiver to calm him, frankincense and helichrysum for his brain, peppermint, lavender, wintergreen etc for sore muscles and so on. These oils are extremely expensive but I discovered the efficacy of the high quality ones to be much better and no comparison to the cheap ones readily available in shops, no comparison. 1 tiny bottle of oil costs from €20-70 and bottles are TINY but invaluable to Fionn.
Fionn attends a private eye specialist at a cost of €120 per visit, the hospital had written Fionn off as blind but with the guidance and tests done privately by the specialist we now know that Fionn can see but is very limited and his cortical visual impairment can be improved upon with specific activities and equipment all of which cost money.
Fionn gets bio energy therapy in Mayo costing €100’s of euros per visit, we need to be seen 3/4 days in a row when we go here.
We have taken him to the UK to a special neuro developmental centre called Snowdrop and we are now on a distance programme for this as the journey was too stressful on everyone and it cost us a lot of money too for the journey to Devon and accommodation etc and the stress was unmerciful caring for Fionns needs is EXTREMELY difficult at home not to mind trying to do so while travelling. A lot of special equipment is needed for this too, all things to promote the various areas of development, I spend several hours each day doing these activities along with the essential oil massages to ease Fionn’s discomforts and try to calm him.
We had to get a specially adapted car with a turning seat for Fionn, the car has sliding doors at the back so that if Fionn was to start coughing/choking we can safely pull in on a narrow road and attend to his needs without the doors sticking out too far onto road, we got a few bad frights with this while we had our old car.
Several of Fionn’s medications are not covered by the medical card and we spend at least €40 per week in the pharmacy on things, Fionn is also still in nappies so we have to buy nappies and wipes and creams for his bum at a cost of around €40 a week.
We drive to physio, therapists and doctors appointments daily so would use €70/100 of diesel each week.
Fionn currently gets speech therapy at €50 per hour monthly, this will be increasing soon as thankfully he is doing much better and learning to eat by mouth again and will need help strengthening his oral skills.
We get a certain amount of equipment from the HSE but not everything is supplied, just last month I had to buy a special seat to help Fionn to be able to be under the water while in the bath, the one that was supplied to us is too high from the base of the bath and we are not able to submerge his legs in the water, we give him baths with epsom salts and essential oils to ease his muscle aches and cramps and he needs to be covered with water to make it effective, this seat cost us €400.
Fionn also needs a bigger buggy and seating solution for home but will only receive one of these through hse so we will have to source the other one which will cost over €1000.
We have installed a special play area outside with equipment sourced from England with swings and a trampoline, these items are to stimulate his vestibular system and cost €2500 to complete. On days when Fionn is extremely agitated this is invaluable.
5. Does Trevor (your husband) still work away from home in Shannon during the week, what advice would you give people out there who are trying to parent and maintain a strong relationship under very stressful conditions?
Yes Trevor has gone back to work in Shannon, we have a very big mortgage unfortunately and lots of everyday bills to pay which has been a huge issue for us. Even though I desperately need him at home he had had to go back or we could be in danger of losing our home.
I’m afraid I can’t offer any advice on the relationship front as we are struggling desperately ourselves.
Marriage is hard going with a healthy child and no problems not to mind the situation we find ourselves in, stress, worry and uncertainty every day. It’s a struggle but we are still here, together, fighting for Fionn. It would be so much better if all our bedrooms were side by side and would feel like more of a family unit I think.
6. What is one simple thing that you think that could be done that would make a massive impact on your life for Fionn?
Fionn’s extension. We desperately need to make our home accessible for him. Currently our day to day existence is a real struggle and things like changing his nappy and bathing him are much harder than they need to be, if we had rooms suitable to take the type of equipment he needs and if our floors were all the one level with no steps or narrow doors transporting Fionn from room to room would be so much easier and less pressure on me physically.
I myself have lupus and currently am undergoing chemo to reduce my immune system so I am exhausted and not strong enough to lift Fionn the long distances I currently have to take him. We will have a hoist facility in the new extension please god.
I am currently fighting to get the full grant form council for this as we have no hope of affording the extension without it.
We will be using a significant amount of Fionn’s fundraising money which we have been trying to set aside for materials for the extension now for the €375 a week physio bill.
7. I know people mean well at the best of times but have you ever come up against any ignorance or prejudice in your Fight for Fionn?
Firstly I must say that people who have not lived through this kind of trauma cannot ever truly understand what it is to be dealing with this type of situation and living our life.
People constantly say “I don’t know how you do it” “I couldn’t do what you do” – I HAVE to do it, he is my only son who I love more than life, I have no choice only to do it, day in day out this precious little boy HAS to be cared for and nursed because he is my life now.
The amount of people who call and have seen him agitated and promise to call to help but never do, including family.
Fionn can scream for days on end and when he is in this agitated state he may also not sleep day or night for up to five days. During this time if Trevor is at work I might not get to even eat and it is even difficult to run to the loo, he can scream so bad he goes blue and can only settle in a certain position or if being held. there are times I cannot leave the house for days and that he is so agitated and screaming he simply is too rigid to go into his car seat making a car journey impossible, he can also easily aspirate when he is like this if he was to be left alone while I attempted to make even a cup of tea it could put Fionn in danger so I have to go without myself and wait for Trevor to get home.
If someone called with a sandwich or a dinner on days like this?? oh my god it would be amazing, or even just to sit under Fionn and let me just have ten minutes outside away from the screaming… Holding a SCREAMING three year old for hours and sometimes days on end is truly soul destroying.
My only contact to the outside world is my phone and facebook, it was recently said to me that my facebook activity was damaging our fundraising campaign and that my green activity light was always on!!! Well I spent nearly two days trying to get my green light off, it doesn’t go off or stay off easily but it does not mean that I am always online, if I do happen to comment on facebook or be “active” it means that Fionn is either in my arms and has been screaming for hours and has fallen asleep so I actually dare not move to go to the toilet, turn on tv or basically move a muscle while he is resting so I just have my phone near and randomly check facebook.
I seldom go out with him and try to only bring him out when he is settled as I find it distressing and feel people don’t understand if he is screaming or why, it is the most gut wrenching thing to witness and people have said things like “he needs to be taken to hospital…. no child cries like that…. that’s cruelty…”
In fact Fionn spent most of his first 2 years in hospital, searching for answers and he screams because something is wrong with his brain and he CANNOT help it or I can’t do anything to help. I give him regular pain medication and every thing that he is prescribed from the doctor and hospital when he is like this and he has spent weeks and months admitted to hospital trying to find a medication to help but to no avail.
It is utterly devastating to be totally helpless and I have to just try my best to hold him and comfort and reassure him when he is like this as there is absolutely nothing that helps when he gets this way.
It has also been said that we are having a fine time of it and spending all Fionn’s money on a fine car. Yes, we got a new car, due to qualifying for a primary medical cert and having a child without the use of his legs or arms, this is the true price we paid for our car, we hate our car and resent what we and Fionn has had to sacrifice to get it. We would love to have a banger of a car and would gladly walk to the shops if we could have a little boy who would walk with us, the car is a necessity and its modifications also a necessity for Fionn and myself to get him in and out easily and safely.
There is no end to the cruel and awful things people have said and will sadly continue to do so, I truly wish these people would just take a step back and see the bigger picture, the young family desperately struggling with a life limiting diagnosis, trying to stretch his fundraising money to get him things to improve his quality of life and trying to care for each other with little or no help. Trying to be a family not knowing what each day will be like is absolutely gut wrenching. Not knowing what tomorrow holds for our precious Fionn.
8. Are you able to have any time set aside for yourself, do you have a lot of support?