Motherhood untethered

At the end of some days as a mother, you can feel yourself starting to become untethered. We all know raising kids is hard work, can just suck sometimes, but then they do or say something that melts your heart, then you explode with love but feeling crappy for thinking such things.

It’s normal.

Trying to raise amazing little human beings is a test of any parents’ personal and mental wellbeing.

Add in special needs and I’m finding these school holidays that my abilities to grow, to problem solve or to plan have reached their limits. More and more I’m finding my brain just cannot take on any more. It’s surprising to reach my limits, to truly know I can’t do more.

This is ok. This is normal.

What is the hardest is the need to keep going. Like any parent, it never stops. Kids still need you, need guidance, need love and some discipline. But my Abbey needs more of me these days, so other things are left. The kids come first, everything else is second.

Today I’m untethered.
Today I have no more capacity to entertain, discipline or play.
Today I cried.
Today I hugged my kids.
Today I embrace my limits and celebrate that I know them.

Now I find a tiny moment for me, as it will all start again tomorrow.

Photo: a trip to the local library was a lot of fun. Abbey loves it there.

Making Friends

Making and keeping friends I am finding harder these days. My time is full with so much administration or meetings. Only last week I spent a glorious 5 hours in an NDIS and medicine review meeting in one day. Sheesh, I really have better things to do.

Friendships are so important. It takes patient, inquisitive, courageous and generous souls to forge and strengthen friendships with any special needs parent.

I salute and appreciate all of our friends. From those I see every few months to those we spend countless messages trying to arrange a friendship date!

If you are a friend of a special needs parent, know we love you immensely. You keep us grounded, we love that you care enough about us to go on this really crappy journey at times. But know we wish we could give so much more.

Photo: today I hope I made a new friend, a gorgeous lady and her son. The boys loved being ‘big brothers’ and I loved chatting to another woman about everything!

Small Milestones should be celebrated

For all special needs parents, celebrating small milestones can be the equivalent of one of our boys accomplishing their first Scout Badge.

Abbey has found her thumb and that she can suck it! And she loves it! As all kids do when they find they can do this.

It’s super cute, but not the best for tooth development.

Now we work on encouraging Abbey to use her hands, while preventing any dental concerns.

She does enjoy it though!

Carers are my Lifeline

I use to cope with no worries without a carer on a daily basis. I’d get through until they came again, usually 4 hours on the weekend. During this time, I would catch up on household chores and a few moments to be with the boys. Abbey was 2 years old.

Now we can receive up to 18 hours a week. But we must choose between equipment or a carer for Abbey. This year we chose a carer, but I’m hoping no equipment will be needed.

Over the last 10 years Abbey’s caring needs have increased, dramatically. Now she needs both equipment and a carer to obtain the most out of life.

This past week, my girl has been ill, again. And we have been without her best friend and carer. There have been drug changes, sickness, doctor appointments, paperwork and a host of other needs that centre around Abbey. As we move forward, I’m learning to accept I cannot do it all. That I need support, to ensure she has the best quality of life. Someone attentive to her needs while I navigate the medical system, care for the family, laugh with the boys and care for myself.

Several times this week the boys have asked if her carer is coming. They feel the changes when there is no support so we work harder to ensure they don’t miss out on our presence.

Even though it’s been a very long week, I’m happy that I accept that I cannot do it all, and it’s not a form of weakness or failure. This is way bigger than my abilities as a Mum. It has taken a long time to accept and be comfortable with it.

Now I’m longing for the return of Abbeys carer. For the joy it brings her and the freedom it brings me.

Coming Home from America

I’ve been home about a week. I’ve had the privilege of completely changing my surroundings and going on an adventure. My brain and body received the rest and excitement they needed.

Coming home though, has been an adventure in itself. So many events have occurred this week.

– An unwell Abbey without any direct cause saw her in Emergency, 2 days after I arrived home. She is still not right, and the doctors don’t know why. Now we hop on the carousel of doctors, therapists and tests to find out what is happening to make her comfortable.

– Doctors changing appointments which changes our weeks!

– boys are super busy with scouts and school. Things are winding up for the year and I know I start to struggle with the added load.

– James did not have the opportunity to make a huge impact on construction of the front wheelchair ramp while I was away due to 2 weeks of rain. With fine weather this week we have worked hard to get the frame in. It feels wonderful to see it coming out of the ground.

Coming home has put me back into my roles very quickly. There has been no time to ease in and pick up the threads gradually. The trip away helped to restore a lot of my confidence, especially in managing Home life.

What I had not expected was the huge weight of the emotional burden that comes with being Abbeys Mum and carer. It melted away when I was off adventuring. It hit me in the chest the first day home. I know I can handle all of the events and chaos. It’s the emotional heaviness that sits in my chest and just behind the eyes. The love, the frustration and the wanting more, it never ceases. This is what makes the carer role so much more exhausting.

I’m ecstatic to be home.