Support
Us parents may seem like we need super powers to follow through with this whole process, but unfortunately, no, it’s just our own blood (hopefully not), sweat and tears. We do it for our children, their happiness and wellbeing. One thing we do need though to stay strong and sane is support.
2012 – 2015 proved extremely stressful for our family, and my body warned me when enough was enough. I’m the type of character that tends not to listen to these warnings however, thinking I could push my limit further and further and so I suffered several health issues from lack of sleep and stress such as cardiac arrhythmia, burn outs, and alopecia. After 3 years, on my honeymoon actually, I finally came to my senses and realised what it was like to relax for the first time in years. Since then I have adapted various measures that basically involve ‘less stress and more play’.
Our journey has been a difficult one to get our sons skin back to normal, and we put everything we had into it. I didn’t see any other way of doing it however, as I would stop short of nothing to help my child. If you are about to undertake a similar journey, here are some support ideas that may help you along. Every situation is individual, so some of these may not apply, but don’t be put off by hard work in the initial stages. It will get easier, especially as you see results and you get to the maintenance stage. Also, our son is an extremely sensitive boy, whereas some cases may not be that severe. In terms of exhaustion, myself and my husband were simply lunatics that thought it possible to do all this as well as run a homestead, business, family life and building site.
Be kind to yourself –
It is so difficult to take a few minutes to yourself, especially when you think there must be something more I can do to help my little one, what’s the missing link? Well even if you haven’t found the missing link, remember you need to listen to your own body too. Without you your child wouldn’t be getting the love and care it needs. Be kinder to yourself! It is difficult to sometimes remember that you ARE really trying your best. It is not your fault, and you are not a failure as a parent. The road on this journey is tough, but you need to be ABLE to be there for them, truly, from the heart. Not just in a zombified state of mind that is merely functioning to upkeep your efforts and survive yourself. Someday it might catch up on you. Give yourselves a pat on the back, or a hug.
Ye deserve it
Find someone to lean on –
I have been lucky enough to have an amazing husband to share our children and their journey with. All through the tough times with Torin Tom, my husband, has been an incredible support emotionally and physically, and we seem to be a good team where when one gets knocked down in some shape or form the other is there to help them up again. If you can get any emotional support, someone to just listen when you are a parent worrying about the health of your child it is such a help. There is nothing in the world that hurts more than to see your child suffer, and this is a difficult weight to bear. The nights I have wished I could just take Torins suffering away and onto my own body are countless. Having emotional support there from a partner, relative or friend can help keep you upright and strong. Desperation, anger, exhaustion and stress may take over your lives, but remember that our little angels have to go through so much more, and we as the person they trust and love need to keep strong and focused. We are their world. Having a supportive spouse or family is key.
Ask for help –
It’s not a sign of weakness to ask for help, it’s a good habit to get into. Too many times I found myself being polite saying ‘No thank you, i’ll be fine’, when a simple ‘Yes, please’ would have made my life so much easier and happier. Ask family and friends, find support groups (see links page), maybe look into getting help in the home from websites like helpx, swap favours, there are plenty of options to get help.
Look online –
There are several websites online that can offer help and support. Websites from mothers sharing similar experiences such as solveeczema, I think it even has a forum page. There are also several eczema support websites such as National Eczema and Irish Skin Foundation which also advertise support groups that may be in your area. Even if you think you may not need this type of support, you may be able to share experiences and help each other. If you child suffers from asthma there is also the Asthma Society of Ireland that may be of some use. There are several more options to be found in a simple google search as well as facebook support groups.
Financial –
The cost of looking after a sick child can be daunting whatever the illness and severity. Everything from doctors visits, medicines, therapies, and time off work adds up, and that’s before you add in organic baby clothes, food and products.
Every families financial situation is different so I can only give very vague advice, relative to living in Ireland. Check out if you are eligible for a medical card or GP visit card, learn how to budget, for birthdays and christmases think ahead and ask for items that are needed to facilitate your childs health, shop around – sometimes local businesses can offer discounts, sometimes better deals can be found online, keep meals healthy and clean, but simple, buy products in bulk and reduce waste, grow your own veg, and again, swap favours. If you encounter other parents in a similar situation ye could maybe swap products and time and hand down clothes, bedding etc. If you live in Ireland and your case is severe enough you may want to look into applying for Domiciliary care allowance, there are also other options available to people seeking financial help on the citizen information website.
Sibling support –
One of the big issues I have been struggling with as a mother since our son was born was how to juggle his care along with the needs and happiness of his older sister. One moment she was an only child, and the next her life was surrounded by chaos and worry. I needed to try my best to make her life as stable and happy as possible.
Whatever the day was like, bedtime would always be the same calm routine of getting pj’s on, brushing teeth & washing, story time, and chats and cuddles. During these bedtime chats I relished the time I could spend with her in peace and I’d ask her every night how her day went and how she felt about it. I found it very helpful to ask two questions: ‘What was the most difficult part of your day?’ and ‘What was your favourite part of the day?’. It encouraged her to talk to me about any problems she had and also understand what was happening. I asked both questions in that order too so as not to end on the negative one, and hopefully leaving her sleep on a positive note.
Quiet time was also needed. In the hustle and bustle of a sick sibling a child can become introvert and closed to their emotions. I wanted to prevent this and so tried adding in quiet time wherever I could. Just us two, sitting there, maybe not even facing each other. As a parent you know when the moment has come where you can sit and enjoy this quality time. It is also a time for healing and processing of thoughts, not an easy task as a child.
One day I remember noticing she had gone particularily introvert and I sat down in silence with her just to show her I was there, and available should she need to get anything off her chest. And for 20 minutes not a word was spoken, until all of a sudden a wave of tears and jumbled sentences poured out that we gently managed to clarify somewhat in the talk that followed. It was one of the most teaching 20 minutes silence and discussions I have ever had.
We also tried to incorporate one on one time as often as we could with mum or dad so that it wasn’t just her brother that was ‘stealing’ her parents all the time. One on one time at outings and trips to fun places seem like hard work to plan and find time for, but so important for the happiness of children in situations like this.
Little acts of love to make them feel special make all the difference. For eg. I rearranged all of her socks on her bedroom floor one night to make the shape of a heart when she was asleep so she would wake up to it in the morning, and it made her day.
As time went on I also noticed an increasing amount of responsibility that our daughter was taking on in terms of worrying about her little brother. She loves him immensely and so panicked frequently at the thought of him coming in contact with detergents or allergens when we were out and about. Over time I have tried showing her that it is our role as parents to do this worrying, not hers, and that we do actually have the situation under control and there is nothing for her to worry about. Her help and awareness was nevertheless appreciated, but there was no need to worry or panic or be afraid. Our son was also constantly learning himself what he could and couldn’t do, and knew more himself about allergies and their effects than many of his extended family.
Getting the right support and learning your limits and how to look after yourself is important in any way of life, but especially when you have children as you are their future and they need you not just to be there, but also to be present. My advice is take it slow when you can, and don’t wish a moment away as it can be very precious.