The Parenting Road Gets Bumpy Sometimes!

As a child, my dream was to one day be a Mum. Growing up, I loved children and especially babies. I left school at 16 to train as an Early Childhood Educator. Children were my passion.

I couldn’t have children of my own. I tried for many years to get pregnant. I tried IVF (In Vitro Fertilisation). I tried natural therapies. I was even accepted (with my husband at the time) as a suitable adoptive parent. But the demon that is Lupus has not lead me down an easy path.

I was 20 years old when I first had Chemotherapy treatment. I have since had 3 more rounds of the toxic therapies. It makes my stomach churn just thinking about it. It not only nearly killed me each time, it also left me infertile.

In 2014, my new partner’s son came into our care. He was nearly two years old. It was not a decision that I took lightly. When you have a chronic illness it is hard enough to look after yourself, let alone another little human being! It was a fast process and it was certainly a big shock to my system!

I was working full-time as a Client Services Manager for an Accountancy firm in Tauranga. We organised childcare for our son. I negotiated with my employers for a drop to part time hours. But the stress of having a little person to take care of as well as my own health needs just got the better of me!

After my kidney function went downhill, I reluctantly resigned from my position. It was unfair on my employers that I was taking so much time off work, not only due to my own health, but we soon realised that our son had high needs also. He has since been diagnosed as Developmentally Delayed. I knew that we needed to dedicate more of our time to help him to catch up with his development.

I am currently self-employed. I contract my skills in administration and I am a Virtual Assistant. I can do most of my work from home. This means I can spend more time with our son. Along with my own medical appointments, our son also has a multitude of different appointments for various different therapies. We are so busy; I don’t know how we would fit everything in had I still been working full-time.

These are some factors that have made parenting work for me:

Don’t feel guilty.

Having a chronic illness is not a choice! Parents with Autoimmune Diseases often feel guilty that they are not giving enough to their child/ren. There will certainly be days where you won’t want to leave the house. Some days just caring for your child’s basic needs will deplete all your spoons (read about the Spoon Theory)! There are plenty of activities to do at home. From play-dough to art and crafts and even cuddling up to watch your favourite movies.

Be honest with your children.

Even young children can sometimes understand when a parent is not feeling well. I have found that being honest with our child has helped him to understand what might be going on. This can alleviate the anxiety for both your child and yourself. If you need to stay in hospital, let your child why you will be away. If it is possible, have your child come and visit in the hospital, so that he/she can understand why you are not at home. And let your child know that you will be coming home again.

A great support network.

Having a great support network has been essential to me. I am lucky enough to have a wonderfully supportive partner. Some days my partner will work a 12-hour day. Even so, when he gets home, he will always help with whatever is needed without having to be asked. We make sure that Dad has certain tasks with his child. Dad will give our son his night time bath and read him books before bed every night. We have found this is great for ensuring that Dad and son time is ensured, even when the household is busy. Dad and son outings on the weekends also allow me some time out.

Family is important! Again, I am lucky enough to have such great family members who help. Sometimes they will take our son out to the park. Other times he will stay with them overnight. Having these small breaks have made a world of difference for me.
If you are not as lucky as me to have family supports, think about joining support groups. These can be web based supports such as Facebook groups or local parent coffee or play groups. It is surprising how you can find support in places as unlikely as Mainly Music groups as an example.

Finding a balance.

I am now lucky enough to have employment that works around scheduled appointments. Because I can do most of my work from home, I can fit this around my child’s needs. Work can be completed after a trip to the park in the mornings, or even after your child has gone to bed. Working full-time just didn’t work out for me. So I made the changes needed by setting up self-employment.
Knowing my limits.

Ask for help.

Only you will know how you feel. And some days you can feel pretty crap! These are days where you need to ask for help, or have quiet ‘at home’ days. Don’t try to conquer every mountain. Organise your activities for each day depending on how you are feeling. Pushing yourself too hard will only put you backwards.

Looking after myself first.

Make sure you ensure that you see your Medical Specialists regularly. Take your medications! Eat right and put yourself first. Because at the end of the day, if you don’t look after yourself first, your family will suffer! And so will you!

Parenting with an Autoimmune Disease is hard!

There are mornings that I force myself out of bed. My child is my alarm clock now. When I hear him stirring in his bedroom next door I often look at the time and want to crawl back under the covers. Most mornings I’m stiff and sore. But life goes on, even when you are sick. I’m finally getting used to these early morning wake up calls. And believe me, I am not a morning person!

It has taken my body a whole year to adjust! I am by no means an expert. Most of the time I am just winging it. Let’s be honest, most parents are just winging it! Our son has made a huge improvement already. I see how far he has come and I know that all the hard work is worth it.