Raising a child or children with additional needs saps your energy and strength. Parents may feel they are engaged in an unending battle.

We fight to have our concerns taken seriously. We fight to get a diagnosis, for acceptance, for resources, for access to the right education, for respite and or support.

When the rest of your circumstances demand a fight, it can be hard not to fight with those (or flight from those) nearest to you. It is no surprise that family break down among families with disabilities or children with additional needs is high. We must be intentional about standing shoulder to shoulder with our nearest and dearest, fighting together not blowing apart.

So how do we avoid hurting the ones we love when everything else feels uncertain?

First, choose faith not frustration. In times of loss, exhaustion, disappointment and fear, we can lose sight of the person we married, opting to focus on their flaws or our own frustrations in the relationship. When dreams we never knew we dreamed lie shattered in pieces around us, disenchantment and anxiety, feelings of guilt (what did I do wrong?) and self-loathing (why can’t I cope?) can cause us to withdraw or to project our pain on to the people who actually are best placed to help us: spouses, partners and other key relationships, for instance, parents and siblings.

Perhaps we don’t recognise ourselves anymore so we struggle to connect with those nearest to us. They too are changed and changing to cope with the new life we share. We dreamed we’d be a butterfly but it looks like we are going to be hairy, earthbound caterpillars a lot longer than we presumed, and our time in the chrysalis is going to be darker and much harder to break free from than we imagined. I look at you and realise I didn’t much like the caterpillar – but the chrysalis … well, I don’t find that attractive at all!

Every ounce of our emotional and physical energy is being invested into meeting our child’s ‘additional need’ (if only it were just one – need and child!).

The heaviness of our circumstances can cause us to become disenchanted with our spouse, their quirks that once made us glad now make us mad. Their commitment to work which once made us proud now makes us feel alone. Their playfulness which used to make us laugh now makes us feel old and tired.

As in everything we have a choice. We can choose frustration and resentment or we can choose faith and hope. We can choose to learn to love the new people we have become.

Next, see potential not imperfections. It’s easy to focus on all of today’s problems, and perhaps even easier to shy away from a future that seems overwhelming, but viewing your relationship in terms of what it could be – creating a hope-filled narrative for the future of your marriage – will always leave you willing to invest more. It has been said that in marriage, you marry someone’s problems and their past, but you also marry potential. You marry what they could become. Now is not forever. It may help to take some time to imagine what your relationship could look like in five years. Choose a hopeful perspective, a ‘glass half full’ approach as you imagine what your relationship could look like then.

Lastly, chase fulfilment not happiness. When life doesn’t go according to plan, it can be easy to focus inward, acting out of a desire for personal happiness that now seems far out of reach. But healthy relationships are about giving, and in return receiving more than you need. Selflessness rather than selfishness, vulnerability rather than pride, asking for help rather than doing it ‘your way’ will ultimately result in true and longer lasting happiness.

If you’re a parent who’s struggling with a diagnosis, disability, loss, grief, or an unexpected twist in your story that will alter the rest of your life, know that you’re not alone.

You may find these pages on our website helpful:

You are also welcome to call Care for the Family on 029 2081 0800 or email Nicola.watson@cff.org.uk

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At Care for the Family we support couples, parents and those who have been bereaved. If you would be able to make a one off donation to support our work, we would be very grateful. Thank you.

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