​As in the film! You know the one with Bill Murray in a time loop, repeating the same day, again and again.

​I never thought that when my little girl was diagnosed with Global Developmental Delay at 11 months old that I would end up feeling trapped in my own personal Groundhog Day.

Babies are only babies for a short period of time for a reason. It’s bloody hard work and it’s exhausting.

Try having a child stuck at the baby stage for 7 years and I challenge you not to be frustrated, tired and a little bit fed up.

You see, my little girl has a developmental age of a 6 to 9 month old baby. She’s been at this stage since she was 11 months. You know that line they chart on the developmental graphs? Well hers has stayed stubbornly horizontal at every 6 month review with her Paediatrician for the last 6 years.

In fact the diagnosis of Developmental Delay is a bit of a misnomer, Developmental Deadlock or Developmental Standstill would be more accurate.

This is despite endless hours of physiotherapy, speech and language therapy, occupational therapy, sensory therapy, hippotherapy, hydrotherapy… Anyway, you get the picture. It’s not been for want of trying. Don’t get me wrong. She’s has made ‘progress’ but just not enough to push her into the next developmental stage.

So sometimes that leaves me with the feeling of same shit, different day. And I don’t just mean the nappies. But yes, when I thought that stage would be long past I’m still changing nappies. What this means is if you visit us you could be forgiven for thinking we had a baby in the house. You may be greeted by the pungent aroma of a freshly changed nappy. You’ll find packets of baby wipes in every room, changing mats stored in the corner. Nappy disposal bags tucked into pockets and drawers. Thankfully I don’t have to pay for them any more - her incontinence is now a medical issue which entitles us to free nappies.

If you’re a mum I’m sure you remember that exciting time of weaning - preparing little pots of pureed fruit and vegetable with love and care, cutting up varieties of food into small chunks. The delight of watching your little one try new textures and flavours, watching him or her discover this whole new world of food. 6 years on and that weaning stage has lost it’s appeal - it’s replaced now with a dreading of meal times, tears of frustration, hair pulling and endless worry. Is she eating enough, how much did she actually get in to her mouth and how much was thrown on the floor for the dog. Will she have lost weight at her next weigh in? Will she be one step closer to having a feeding tube fitted. I sympathise with anyone who has or has had a windy or colicky baby. It’s horrific to watch your baby writhe in agony, pulling their little legs up to their tummy and not being able to do anything to ease their pain. But remember, this time will pass. For us it hasn’t. Reflux is a constant in our lives. But please don’t think you know what life is like for us. You don’t! Your baby had bad colic? It’s not the same.

My 7 year old may have the developmental age of a 6 month old but she’s the size and weight of a typical 7 year old. We can’t walk her around to ease the pain caused by reflux, we can’t rock her in her car seat, we can’t sit and rub her back, we can’t just pop her in the bath. If she throws herself back as another cramp snakes through her body, she’s in danger of breaking the nose or jaw of whoever is holding her at that time. To move her at all is a two person job or involves the use of the hoist. Our bath has now been replaced by a wet room. It’s nearly impossible to ease her pain.

It’s been like this for 6 years.

And yes we’re still as exhausted as we were when she was 6 months old.

Remember back to those days when you proudly pushed your newborn around in a fancy new pram? Endless strangers stopped to comment on your beautiful sleeping baby. It was bliss. Now do you remember how 6 months later when strangers were still stopping to coo at your baby, it was starting to get a little bit annoying. Your baby didn’t always like the intrusion of strangers, sometimes they even cried leaving you to apologise and make your excuses ‘Sorry she didn’t sleep very well’, ‘Sorry he’s at that being strange stage.’ Inwardly you were thinking would you please just leave me alone to get on with my day. Well that still happens to us.

A pretty little girl in a sparkly pink wheelchair can attract a lot of attention. She doesn’t like it. In fact coping in a busy environment is a big enough challenge for my daughter without a stranger sticking their face in hers. So 6 years later and I’m still making my excuses and giving strangers false smiles.

That never ending Groundhog Day. If I’m completely honest I wasn’t that that keen on the baby stage with my other children. It can be a lot of hard work for very little in return. So what keeps us going with our daughter? Well it’s those little glimmers of hope. Was that a proper wave goodbye this morning? Did she actually clap her hands during song time? I’m sure that noise sounded like ‘Ma Ma’. She definitely pushed up through her arms during tummy time. She ate all of her lunch yesterday and wasn’t sick. Her eye contact has been brilliant today!

All little signs that the hard work is worth it.

That’s what makes it all worthwhile.

Together with the most amazing smile.

A smile that makes up for all those developmental milestones still to be met.

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Jean Connor's avatar
Jean Connor August 04, 2015

It is so frustrating but those little milestones that they meet are so special my granddaughter is 13 but that smile and the love she gives us is marvellous love her so much xx

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Ramz246 August 16, 2015

Thank you for sharing, I often feel like the only one. It never seems OK to share that you are bored or stressed by your kids. I just want to sleep in….. But that messes with the routine and you don’t mess with the routine.  I have 2 girls who came to me from the foster care system. I have had them since they were 2& 3, now both are 13. Both in diapers, non-verbal, very low developmental functioning. The one who can walk, does Not like her routine to be changed. And at 90 lbs. I can’t take her anywhere that she may decide to just sit down. It is very difficult to move her. The other uses a w/c. She has a feeding tube- the BEST thing that could have happen to her. She can take a sip or taste of liquid but after two swallows, she is coughing and stressed. The tube also allows for easy access for giving her medications. I have made the difficult decision that I will stop caring for them when they turn 18. My body is a mess and there is just a point I will need to stop. It scares me to think about there future and I am doing everything in my power to provide a positive lifestyle but I know I have to get out of the loop. Again, thank you for sharing that not all of our special kids are becoming actors, finding jobs and running races.

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nathansgaga August 18, 2015

My heart and respect goes out to all parents who deal with this everyday. My grandson Nathan is going to be 3 and he has similar issues. Due to a brain injury at birth he is unable to sit up and walk independently and has a feeding tube. We take Nathan on the weekends to spend time with him and give Mom a break. Taking care of him requires a lot of work but when I see his smile or I hold him and he cuddles up to me all I see if this beautiful handsome little man that God gave us and all else goes away. God Bless you all and all of these special Angels sent from God….

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Echo Cardiographer September 17, 2015

I hear you loud and clear. We have the same with our 5yr old and he has low muscle tone (hypotonia). No real cause or name just developmental delay and hypotonia.
We are exhausted all the time.
We do get help and he’s in a special needs school. We had to apply and jump through hoops for the disabled grant to help us get equipment and modify our home. We get respite and direct payments to help pay for this. There is help out there but you have to shout and push for it.
We found a wonderful foundation called BIBIC. They help parents and put packages together to work on sensory development.
I highly recommend them.
All this aside the constant care for a baby whose body is growing at a normal rate but not their little minds….. is exhausting beyond any explanation. And only a handful of people going through the same heartache day after day, sleepless night after sleepless night, will ever fully understand.
We can’t even grieve for our lost normal child because we are too busy being a mum/dad and full time carer for our beautiful damaged child.
I just keep saying to myself that ‘special children go to special people’.
And like you ..... Look for that small improvement that can appear out of the blue when you least expect it.x

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