Relocating the family home is a pretty stressful event for anyone.  If you are also caring for a young person in chronic pain the stress goes off the chart.

My teenager uses a lot of energy just coping.

She is managing not just pain but also various pressures that come with it like fatigue and medication side effects.

She also has had joint flare up in her knees that made walking pretty uncomfortable.

The chaos of moving simply overwhelmed her and made her job of coping more difficult.

Understandably she was pretty angry about her challenging circumstances becoming even worse.

I did try to get her to stay with relatives during the move but that didn’t really work out well.

If you are really battling you don’t want to be away from home and you certainly don’t want to be far from your own family.

So hey we got through it but it was pretty awful.

On the up side we do have central heating which will make it easier to keep our daughter warm.

We are also closer to family which will make drop in social visits easier and that is great for morale.

The new house has a deep bath for long hot soaks in the tub.  It has a sunny deck for soothing cups of tea.  Sometime soon I am sure I will recover.

Maybe you have some tips for me to think about next time.  I’d love to hear from you.

It’s wonderful and welcome for some honest emotion to be on show. Everyone can relate to why this parent feels sad or overwhelmed – we have all felt the same at times.

There are another sort of tears that come from what I call ouch moments. These tears fall like a tropical storm – enormous splashes with each drop.

They come from the recollection of times when something small happens and it pierces our coping and shoots straight into the heart.

Once my daughter was in a very painful flare up time and her school musical was on. The stage was full of dancing, singing, smiling shiny teenagers. My daughter sat to the side of the stage looking tiny and ghostly pale.

I felt overwhelmed with envy for health and normality of the other kids. These feelings took me away from how gutsy my kid had to be just to show up that day. It was awful jumble of feelings.

Sometimes ouch moments can be brought on by a few innocent words. Once someone was showing us over equipment at the Independant Living Centre. As we walked past the wheelchairs she said, “oh you don’t need those yet”.

The word “yet” ricocheted around my head to such an extent that I struggled to find my way out of the car park. (Our specialist later said he felt it was unlikely that my daughter would need a wheel chair.)

Ouch moments can be accompanied by all manner of difficult emotions – envy, fear, shame, embarassment, rage and feelings of competitiveness can all show up.

We all go out into life wanting everything to be perfect for our kids and when it isn’t, well it hurts like hell. The hurt is felt in little tiny windows of pain.

That’s why getting together with other parents is so helpful. Sharing ouch moments can normalise and neutralise very difficult feelings. The tears then become a spring of joy and laughter.

If you are feeling too sad and the hurt is too raw to talk to other parents maybe a counsellor could help with some of this heavy lifting.

Then perhaps later you will find yourself friends who understand what it is like to parent a kid in pain and you will feel joy again.

I can hear birds and my friend’s whippet coughing up God knows what. Some big fat chooks are going about their chooky business near by. I wonder why life is never this peaceful at home?

At our place my friend has covered the dining room table with a scrap book project she has wanted to start for ages. She is chatting with our daughter and they might go to a movie later.

My friend and I have invented a solution to our exhausting lives. Every few months we swap everything except our husbands.  We take our partners with us and we go and live in each others houses for a few days.

She minds my kids, pets, garden and life and I mind hers.    My friend lives in the country and I live in the city.  Even the three hour drive is a wonderful time to catch up with my partner.

At first we weren’t sure just how household swapping was going to work. Let me tell you it works really well. Here is why I love it.

• I don’t have to talk my kids into going somewhere they don’t want to go.
• I don’t have to have my pets minded.
• I don’t have to pay for expensive accommodation.
• I don’t have to clean and tidy my house because it is my friend staying and she is a Mum like me not a house inspector.
• I relax here because it is not my house – I don’t see jobs everywhere like I do at home. My friend says she feels the same.
• Both of us have found that we have had time to relax and enjoy our partners. We have had fun together away from our usual family worries and pressures.
• The kids love the parent swap too.  They have a enjoy the break from all the parent business.

This might not work for everyone but it has certainly worked for us. Do you have a close friend you could do a household swap with?

I think those lines help me when I am not always the Mother I want to be.

As the Mum of a young person with chronic pain I have times when I am really there as a patient and kind Mum.

At other times I run out of energy, patience, brain space or mother juice and I feel OVER IT. My daughter and I jokingly refer to the character I become at these times as Dragon Woman.

Kids with joint pain tend not to do things in a hurry. Getting out of bed hurts and getting dressed hurts. Getting moving hurts. It is easy to understand why they would want to take things slowly.

You can’t just jump in the car and get to places quickly. Once you are there you can’t just walk fast either. Even getting out to the car takes time.

Watching your child suffer is THE worst thing. After that I’d have to say doing things slowly comes second for me.

I like doing things on the spur of the moment. I like deciding to see a film that starts in twenty minutes. I like being on time, I even like being early. Moving slowly does not come easy for me.

I am learning to notice the times when I am the Mum I want to be. I am learning to plan so that there is adequate time to do things and I can be that person for more of the time.

I am also learning to forgive myself when I do get impatient. I am an ordinary Mum and at times I am imperfect.

At other times, just like ALL us ordinary Mums, I can also be remarkable.

It is through the embracing of our own ordinary challenges that the extraordinary becomes possible.

*Imperfect is off the album LoveThongs by Fred Smith and Liz Fencham.

Are you juggling too much?

As mothers we can fall into a pattern of trying to please or appease others. Maybe we learnt this from our mothers.

I think this pattern can be especially true for the hard working home based mother.

If your child has a complex medical condition your list of people to please might go something like this.

• Husband
• Kids
• School
• Specialist
• Physio
• OT
• Podiatrist
• GP
• Immunologist
• Psychologist

I also expect myself to perform to a fairly high standard in my part-time work, looking after the house, my voluntary work, my extended family and in my friendships.

It is not hard to see why it gets way too hard to be getting it right on so many fronts.  I’ve been there and I am meeting other mothers at hydro who admit that they have been doing the same.  It is a one way ticket to a break down.

The solution is to break down and admit two things.  The first is that you are trying to do too much.  The second is that you need help.

Do not attend your next appointment unless you have a support person with you.  Go to that appointment with the list of roles you are trying to fill.

Ask for help from your specialist to put a pain management plan in place that co-ordinates all your great team.

The earlier you admit that you need help the sooner the problem becomes more manageable…and the sooner the joy comes back into your life.

I am also learning that we are in this for the long haul.  For my efforts to be sustainable  I need to learn to get my name to the top of the list of people to please.

Juggling photo courtesy of madaboutasia at Flickr Creative Commons.

You find yourself going on a journey with your whole family. Your child may have the diagnosed condition but each person in your household is affected by the suffering and the uncertainty.

Franklin D. Roosevelt’s famous quote, “There is nothing to fear but fear itself” has to be one of the most relevant sentences ever uttered. It is particularly useful for parents of a child with arthritis.

Fear of what lies ahead cheats us from being present to what we have now. There is no way to know what tomorrow holds so it is a waste of time to go there.

What we have is today. If we focus on the here and now we give ourselves and our children a priceless gift.

We also save ourselves from burning up energy of worries that may never materialise. Fear equals stress and that erodes both our health and happiness.

One stategy for parenting a child with arthritis is to just do what has to be done right now. If we stay in the moment we give ourselves the best chance of being effective parents.

What strategies do you use to keep fears at bay?

Food and family feed the soul.

I think the reason I put off focusing on the medications is that while I am doing it I have to really concentrate on each pill, the dose and the regularity.

I worry about the effect the medications are having on her and I wish she didn’t have to take them.

The medicine box ritual also forces me to focus on the pain she is managing and I know I try to block that out and pretend she is a normal teenager.

As the winter and the rain have set in our household has had it’s share of seasonal viruses.

I have a big chicken stock bubbling on the stove as part of my response.

I have a recipe that includes sea vegetables for extra minerals. It strikes me that there is a long tradition of women brewing good food to get their families through the winter.

A few nights ago we had my husbands parents over for dinner. I made a decision to cook a season vegetable dish that took some time. I served this vegetable gratin with roast lamb and potatoes.

There we three teenagers at the table and the noise of several conversations filled the room. The baking dishes stayed on the table so people could serve themselves second helpings.

I understand that something really important happens when there is a lot of good food and the family gathers for a feast.

We strengthen our bodies and our souls. We remind ourselves of the tribal strength of family. After a big meal like this I feel we travel better as a family. We are anchored and reassured and able to face moments we would rather not.

So this morning I will attend to the pill box and watch the anxiety come and watch it go away again. Then I will make soup.

Soup photo by lotterymonkey at Flickr Creative Commons.

He said that he is sometimes called to events like bank robberies, mine accidents or shootings where people are shocked and distressed.

He told us that usually he is taken to the person showing most outward signs of distress. This person may be sobbing and yelling. He explained that there may be other people from the same event sitting staring ahead in silence.

In our culture the wailing folk are regarded as not coping and the silent are considered to be coping well.

Michael then carefully explained that the sobbing person is already adjusting and adapting to the reality of what they have just experienced. The silent person might be numb, not feeling anything, as if the event did not happen.

He told us that he saw his job as helping people who get stuck at some point along the path of adjusting and adapting to their new reality.

I am bringing this up because people have often told me they don’t know how I cope. They tell me this because I am acting normally and therefore labelled as coping well.

If your child is suffering on a fairly regular basis you can suffer a chronic fatigue and get numb and detached. Our culture rewards this by labelling it as “coping well”.

We run the risk of tuning out to our child’s reality because we feel powerless and overwhelmed.

I think kids are remarkably able to adjust to what they have to deal with.

One thing they do need from us is the ability to be present, to share how things are for them. That doesn’t mean doing or solving, that means sitting with the truth of how things are whenever we can.

I think coping well is not being numb and detached from what is happening in your life. Rather I think it is feeling as much as you are able, when you are able, and getting help if you get stuck along the way.

Photo courtesy of timcaynes at Flickr Creative Commons

Pay attention to your own needs - self care is a necessity not an option

My friend told me about a dream she had. It struck me that this story contained a universal message for each of us. With my friends permission I would like to share it with you.

In my dream I have a beautiful beautiful baby and I’ve been very busy
working and caring for family. One day I pick up my baby and it is floppy
in my arms. I realise that my baby is nearly dead. I feel so guilty and
ashamed because in my busyness I’d forgotten to feed my beautiful child. My
baby does not cry or complain, it is passive about its own needs. My baby is
not dead – it can be fed and revived. If the child had cried, fussed or
yelled about its needs, it would have a better chance of survival. A wise
woman told me the child in my dream is me. I now understand that if I get
too busy to nurture and care for myself, I will quietly die.

All parents are busy. If your child requires doctors visits and physiotherapy you will be very busy. Your concern about your child might drive you to even greater heights of activity. People sometimes even say – it helps if I keep myself busy.

The problem is that we might not consider our own needs as a priority in all that activity. We might not even know what our needs are.

Some parents might be able to get away with putting themselves last. Parents of children with a chronic condition just cannot afford to.

We have to schedule time to refresh our spirit in whatever way works best for us.

As the airline staff tell you, “Put your own oxygen mask on first, then assist your child.”

I am not saying this is an easy thing to do. I think it is particularly difficult if your own parents did not model doing things just for themselves.

You might experience feelings of guilt, selfishness or anxiety. Notice those feelings and make attending to your own needs a priority anyway.

As the dream so elegantly tells us – on some level getting this right is a matter of life or death.

Photo courtesy of kudumomo at Flickr Creative Commons.

Having your own mug and some nice tea can be comforting.

Whether you are a constant bedside parent or a visit after work parent you can do several things that improve the hospital stay experience for you and your child.  I don’t always have the energy to do these things but I know they work.

Supplies
Leave you and your partners favoured coffee mug along with your favourite teabags or coffee in a bag in your childs cupboard. You might also bring a plastic container with your preferred biscuit or fruit cake, nuts etc.  Take time to make yourself a  good cuppa and sit back and enjoy it. Remind yourself to relax.

Learn and Use Other Patient Names
All the kids have their names on the wall beside their bed.  As you enter and leave the ward say hello and goodbye to the other kids by name.  ”Hi Michelle” ” “See you later Jo”.  I have found that this simple process helps the kids learn each others names and acts as a bit of an ice breaker on the ward.

Learn and Use Nurse Names
I use the staff names in front of my child.  If a nurse delivers a medication, I notice the name tag and say, “Thanks Kevin.”  It encourages your child to do the same.  Kids who are polite and appreciative are more likely to be chatted to by staff.  This also means your child is more likely to ask for assistance if they need it because they know who their nurse is.

Acknowledge Other Parents
It is easy to acknowledge other parents without being intrusive.  Most parents are very tense – don’t be put off – be friendly anyway.

• If you are making a tea, offer to make them one too.  Some people find it hard to leave their chid.
• When you have finished with a magazine or newspaper offer it to another parent.
• If you are off to the shop ask around and see if anyone wants supplies.
• Give a nod of acknowledgement as you come and go from the ward.

I have found the process of learning names and acknowledging other parents makes an important difference.  Somehow it makes it easier for other parents to comfort or assist your child when you aren’t there.  This might be a simple thing like opening the high security plastic in the little cereal boxes.  It might be something major like noticing your child is distressed and alerting staff.

Coffee mug photo courtesy of radiant guy at Flickr Creative Commons