How My Child with Down syndrome has Ruined Me {guest post}

Ruth and I first connected over our blogs and chromosomally enhanced children, but it wasn’t long before we met in person and I felt like she was a kindred spirit and we had many common interests. She is that awesome mix of spirited, lovely, fiery, thoughtful and fun, so I love any opportunity to catch up, with and without our children in tow. I am thankful to have her in my life and honoured that she was able to share a guest post with us here in October. Thank you lovely Ruth x

Maybe it’s a cliché, but it’s certainly the truth that having children changes you. You may want to stay the same but the minute that child arrives you are overwhelmed with the Love gene. This baby screams and cries at horrid hours of the day and night yet you still love it irrevocably, unconditionally and seemingly can’t get enough of this parental drug you now possess. You are ‘using to feel normal’.

If having a child changes you, then having a child with special needs ruins you…

It’s no secret Eden’s diagnosis happened post birth and was a huge shock to me. At the time I thought my world was caving in but, lo and behold, life was just beginning. Turns out a renovation was in order, one of the personal kind, and it was my personality that was getting the revamp.

1. Life is now SLOWER. I have slowed down! I never really considered how busy I was before. I used to say that life was full but no, it was just plain busy. Life existed around work, church and little else. I always seem to have time now, there are fewer nights out (if any) and everything revolves around family and having quality time together. If the washing doesn’t get done, who cares, there’s always tomorrow. Is it a crime if my floors aren’t pristine day in and day out? As long as I can go to bed with no toys in my immediate sight, I’m happy.

2. Eden has taught me to enjoy life and not to stress about the little things. At 10 weeks old she required Open Heart Surgery and we were told at surgical admission that her symptoms were so advanced, she wouldn’t see the next week without surgery. In our house, there is always time to read a book, have a play, sing a song and have a cuddle. Life is precious and, in some cases, far too short; you never know when it’s going to be up. Make the most of it now.

3. I’m female and I like nice things, but my view of materialistic things has shifted significantly since Eden’s arrival. I never would have pegged myself as a consumeristic type, but in hindsight there was a level of it. I believe life and earnings are to be enjoyed; having the best of everything though pfft… it can all be a little overrated. Going to the shops doesn’t fill a void like it seemed to and my Ikea catalogue doesn’t even rate a mention now. You can have your brand name clothing and latest technology, it doesn’t even begin to compare to the love of family and the celebration of milestones, like a small child with an intellectual disability going to get her shoes when asked. Watching shows like Million Dollar Listing, which I once would have enjoyed, now makes me nauseous and a little uneasy.

4. Gratefulness is not a trait that all are born with; there are times in my life I’ve had to consciously practice this. But since having a child with Special Needs I’ve never been so grateful. The number one thing is that I am grateful for being exposed to the Special Needs community. THESE PARENTS ARE AMAZING. They are all so grateful for their situations even when they may be facing the greatest of adversities. When I’m at a medical appointment I see an array of disabilities, and I always leave feeling grateful for the card I’ve been dealt, thankful for the life that was saved. I look around these rooms and there is no one wishing they were in another’s shoes, just a room full of people grateful for the life they live and the life of their child. Whenever I look around society I see the opposite – people wanting what they don’t have, ditching what they have for what’s on the other side of the fence, marriage, family, job, homes etc. If this is all I have, I’m grateful.

5. Having a child with special needs makes me a better parent! Not a better parent than you, you insecure git, just a better parent than I was before. I’m aware of my child’s development like never before. I can’t rely on nature to do its thing with this child. Early Intervention is not a once a week appointment, it’s an all-day appointment from sun-up to sun-down. Sometimes there are appointments with professionals, but 99% of the time we, her family, are the ones encouraging and shaping her development and helping her achieve milestones.

ru·in

1. The state of being physically destroyed

2. Fall headlong with a crash

Take either of these meanings and that’s me since our Eden came along two and a half years ago. I was physically destroyed and fell headlong into a new way of life.

Ruth Usher lives an extremely blessed life, one most people only ever get to dream about. A coastal life in a small community on the east coast of Australia, life is simple yet not without its challenges. Summer days are spent on the beach building castles, listening to the waves, watching kids learn to surf and Eden eat sand (surely she’ll grow out of it one day, until then we just put it down to roughage). Occasionally Ruth likes to write and you can follow her antics at Perfect By Design x 2. She spends way to much time on social media, so you can also catch her over at Facebook and Instagram. But her favourite pastime is cooking – you know, the old fashioned way, with real ingredients and without fancy pants appliances.