I keep an eye on Family Fund’s blogs, I love to read what other parents write. Their stories, their tragedies, their triumphs but in all of this, their resilience. 

I too have a story, it’s different in parts to most, but it also overlaps many. It involves a premature baby who suffered brain damage, it involves having that one in every 100,000 children who, for no real reason, have a major stroke in childhood. It involves the happiness of new birth and the tragedy of watching a close family member succumb to cancer. I know what it is to experience the ‘normal’ sadness of losing your close but elderly relatives. I know what it is to experience the sadness of having to accept that life will never be the same again. I am changed.

It all sounds very dramatic, but what I have learnt is that life is not. For me it's been a series of small but significant changes. 

Learning my son had brain damage meant nothing until we learnt that meant he wouldn't walk. But that really didn't mean anything until we took the wheelchair out and found we could no longer go to the same places as before, or that now it meant we needed to take two wheelchairs and allow around an extra hour in travel, packing and planning time. This meant that the car had to be changed, one that suits wheelchairs and the heavier he gets, the harder it gets. Lifting a 4 year old is very different to assisting my now 12 year old in and out of a chair. Planning a trip became a whole new level, don’t even get me started on holidays. These changes take time. And the chipping away starts.

Learning my daughter had a blood clot in a major artery meant nothing, until she started to fall behind at school, missing chunks of her education, or she started to get dizzy and collapse in random places, meaning we had to always be in reach of our local hospital. Learning that because she can walk, that because she looks well, does not cause a fuss and she tries hard she doesn’t qualify for all the help she needs. No one sees the sleeping pills given at night. No one sees the Ibuprofen poured each evening as her muscles have been adversely affected and she is desperately trying to keep up with her peers. Chip, chip, chip, as you dry the tears after another fall to the floor.

Then austerity came and the government felt it right to cut funding, so councils changed policies to save money. Every little bit of help we get, the Physiotherapy, the Occupational Therapy, the wheelchairs, adaptations to our home, adaptations to our car, getting to see the right consultant or the right specialist takes hours of calls, emails, evidence of what’s going on for you then convincing professionals to listen, and then release the funding. Or even, filling in a form for funding where you have to declare all your income, all your outgoings, debts, all of it, all to prove why you are unable to fund a child’s bike that costs £2,000 or wheelchair that will come in at around £6,000. All the while, it is recommended that you need both. While I totally understand why charities do what they do and I do not resent them for it, I hate that I am in a position where I have needed to ask. Again, it chips at you. 

Other parents don’t have to do this. Other families haven’t had to change, sacrifice what I have. They haven't held their son as he cries into your arms wishing his disability away, knowing that he's been excluded at school because of it. Or waking in the middle of the night as your daughter has a dizzy spell and can’t shake it, so you hold her and check her neurological signs, she cries, you hold her tight, it passes but you’ve no idea what these are and you just pray they are simply dizzy spells, nothing nastier as all the tests are normal. Doctors are stumped. 

This is my reality. I read other stories and see the realities of others, it’s a hard road. A friend of mine, whose son’s epilepsy, has had them in and out of hospital for the entire two years of his life. This is her reality. It's hard going. It's lonely. It's scary. But the chipping is actually sculpting. I read Family Fund’s blogs and I see the resilience in the human spirit. I see the real character of real people, driven by the love of their most precious gift, their child.

What drives me? My love of my most beautiful and most precious gift, my children. We will face tragedy together, that’s life. They will cry into my arms, they face more than most. But they overcome more than most. Every tear is replaced by a smile when they realise their strength, when they realise their worth.

In them and in me I see resilience, I see strength.  Each chip that painfully changes me, or my child, each experience, each tear, each laugh, it makes us stronger, it makes who we are. It makes us special. It binds us as a family. One day I may understand why we had to walk a hard road, but for now, I choose to be the best me. I choose the fight, for if I change it for us, I may change for others. I am resilient, so are my children. So are the Family Fund bloggers. So, bring on those hammers that chip away, I want to see what I and my children will become and how they will change the world. Because they will, they are the strongest fighters I know.

Maria is a new Family Fund Blogger, read more Family Fund blog here.