Terrible Palsy – Warrior Girl

OK…there is a breed of girls out there that you don’t want to mess with. They are Warrior Girls who advocate for their kids and don’t take no for an answer – if they are forced to accept a no, it will be temporary and they’ll be back for round two…or ten. Most normal mums are a force to be reckoned with but if you put pressure on a mother with a high needs kid, you better be ready for a battle.

I know there are many people out there with enormous challenges and I don’t for a minute want to dilute those experiences down… but lets for a minute focus on one certain group of tenacious women who eat steel in their lunch break and would move heaven and earth if it meant their child could walk, talk or just live a better life.

Step into some different shoes and imagine this….you wake up in the morning with a tired feeling that has been incubating for months ever since your baby has been on life support. You are tormented by the thought of your baby being on their own in hospital for a majority of the day but you have to work, continue with life and pay bills. On arrival at night to the ICU, you process the chaos that happened during the day as the nurse downloads test results, how many seizures, heart apnoea, spells and whether your child held any food down. You look over to your kid as the nurse’s words turn into a muffled and distant tone, you are distracted by the smile your baby gives you despite the ventilation tube that obstructs their mouth.

Finally your child comes home after 6-12 months of a torturous hospitalisation and near deaths and is monitored by a machine that blares emergency alarms if the heart rate or breathing becomes abnormal. Most ’emergencies’ in the middle of the night are false alarms but you can’t go back to sleep, so you study the bedroom ceiling until dawn breaks. Glazy eyed you start the morning routine but are limited by a 60 foot tube connected to a large oxygen tank at one end of the house and taped to the face of your kid to ensure he or she doesn’t go blue.

During the day you attempt to normalise by hanging out with other mums but they complain how their kids are into everything now that they can walk, as though that is somehow bad – you would give anything to have that problem. Adding to the heartache is the passing of developmental milestones but you let it go and hope it is met next year.

Things have gotten better and your kid is finally able to breathe without oxygen support but each winter brings a virus and you wonder if this is the one that is going to take your child out for good.  You growl at people with colds and insist on everyone washing their hands as they walk into the house…even if you do come across as a clean freak. The hospital visits keep coming on a regular basis as you juggle 5 different specialists who all have varied opinions on what to do. You have to balance what your intuition is telling you because you know your kid better than anyone but you are mindful that the wrong decision could make things go terribly wrong.

Throughout the journey you are hoping with your whole heart that someone is going to come up with a revolutionary medicine that could change everything but it seems so far off it isn’t worth wearing hope on your sleeve. One day the doctor delivers the news that will change your life forever in 14 words, “Your kid may never walk, talk or go to the toilet on their own.” You wonder what is going to happen when your child turns 25 and how you will physically cope transferring from a wheel chair to a commode several times a day.

As your kid gets older and enters school you want to integrate so they can sense the world and interact with people. To your horror you discover that a reluctant teacher discriminates against your child. On the other hand you feel joy as you see young children embrace your child, but you fear what it will be like in the teenage years. Will children see past the dribble and discover your child’s remarkable heart and want to be friends? Your kid would be the greatest friend ever!

After fighting endless wars with government bureaucracy, dead end rabbit trails, endless paper work and a system that ultimately requires a ‘case worker’ to help navigate, you finally get some needed funding for the therapeutic wheelchair that will help with positioning the body correctly. Unfortunately the government system has slowed the process so much, the chair is one year late. With deep gratitude you also receive donations from friends making a standing frame a reality. It will give your child the ability to look other kids in the eye and slow the hip displacement. You take the money with humility because you wouldn’t let your pride get in the way of helping your kid in some way.

It’s time to visit the shops, you look for a disabled car park out of the rain but there are none left so you park down the other end. Your kid is freaking because the rain on their skin creates sensory overload. On your race to the entry doors you notice two able bodied people who are perfectly healthy, jump in their car and pull out from the car park meant for you.  You curse under your breath but it is your kid’s birthday, so you make for the specialty shop to spend the birthday money from grandparents. It is the only shop that stocks the toy with the specific shape your kid can grasp. On arrival you realize the shopkeeper hasn’t thought about wheel chair access, all the aisles are jam packed with junk and you simply can’t get around. That doesn’t stop you from making great memories though – no one messes with your kid’s birthday!

After the shop it is time to treat yourself to a coffee. Pushing the wheelchair down the causeway at the shopping centre, people stare, really stare. Reflexively you want to punch them in the nose but instead you just pity them. In contrast some people look you straight in the eye with affirmation and you return the smile on behalf of your child, reminded that there are great people in the world. After arriving home from the shop you are completely exhausted and wonder where your day went. Then your other kids come home along with a husband all waiting for the evening routine to begin. As happy as you are to see them, it reminds you of the time warp in which you live but you manage to be in the moment and not allow your grief to rob you of ‘normal’.

THEN ONE DAY SOMEONE HAS THE AUDACITY TO SAY, ‘NO’ to the Warrior Girl. From a busy concoction of activity the world stops spinning, waits…..the universe holds its breath…….’No’ is not acceptable for the Warrior Girl – whatever resistance they are confronted with, they have been through much, much, much worse. If you are wondering who might be a warrior girl, you will know when you say no to one. You will feel the deep penetrating look that can only come from a war veteran who will fight to the death for their child – you can feel ‘the look’ through a phone line too. Yes is the only answer a Warrior Girl will accept – they will keep fighting for the best outcome for their kid.  To get a ‘Yes’ they may roar, they may do it by stealth, they are cunningly patient, steely eyed and driven, they may even collude….the only choice is to give them a ‘Yes’ and no one will get hurt!

Say ‘NO’ to a Warrior Girl at your own peril.

10 thoughts on “Terrible Palsy – Warrior Girl

  1. Wow'Jay, I don't know you but that was amazing & Thank You for putting it in words. Yes, tears rolling down my face. Yes”I know a few “Warrior Girls'” One whom is called Sue Mackie. x x

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  2. LOL I read this and chuckle as tonight, my mind is racing as I gear up to fight the kinder teacher who has said “NO” . She has done it before and lost – here we go again – watch out kinder teacher!!!! say no at your peril!!!! lol!Love it.

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  3. This sums up my daughter too, I have to kick down so many walls that my body aches, my daughter deserves every chance any other child has and I will get them for her. Well said Jay.
    Coraley Craig

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