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The hardest transition when you are a parent to an adult with a disability is that your child no longer has the safety of the pediatric ward when they become ill.

In the pediatric ward, everyone is in the same boat: parents looking after their children. Now that Savannah is sick again, she has to be in the adult ward where there aren’t any other caregivers staying with loved ones. So I’m an alien here.

On the plus side though we automatically get a private room because I’m not allowed to stay with Savannah in a general ward. It’s cheaper and easier to have me around or else the ward has to employ an extra nurse just for the adult with special needs. The nurses are really nice to us. I think it’s weird for them that they have nothing to do for Savannah but make sure that I’m administering the medication correctly. Bathing, toileting, lifting and carrying is all on me because Savannah is so anxious and doesn’t want strangers touching her.

The downside is that it’s a scary place when other adult patients aren’t so nice and we hear the yelling and arguing with nurses.

There is also an elderly lady in a room down the hall with dementia and at night she screams out names every couple minutes. It’s a little frightening to hear but at the same time I feel for her and her family. Being a caregiver to my child is more natural… Not easy just natural. But it must be so tough for this lady’s adult children to cope with the emotional and medical chaos of their elderly parent while maintaining their own lives. I said before.. Sometimes I learn too much about life.

Savannah’s doctor has a reputation for being the good looking doctor. He is Greek so I guess that explains it according to the nurses. All the nurses swoon when he arrives. When they ask Savannah if she thinks he is handsome, Savannah replies with a deadpan expression “No”. The guy is about her father’s age and as she says “eeuw” ?

For some ungodly reason tea is served at 4:30am so I’ve been awake since then. I’ve already showered, bathed Savannah, administered her meds (the fight against the nurses injecting her is less stressful each time) and I’ve tried to entertain Savannah by taking selfies with her and reading Anne of Green Gables, until she is sick of me and turns to sleep.

Then I have my own care pack and entertainment pack with which to pass the hours of interminable waiting for Savannah to turn the corner.

If you know of someone who is a caregiver and you want to do something nice for them: Take a close look at the picture of the items that make up my care/survival pack. By providing one or two of the items or similar items to a caregiver, you can make a real difference to their physical and emotional health. A subscription to an online network or a contribution to their data bundle are other ways of helping that are meaningful too.

When I have ways of coping in these stressful, unusual situations.. I’m less of an alien.

What a surprise for Michael and I to read Talisa’s essay. Her teacher wrote”Look after Savannah – she is a blessing. Treasure what you guys have. I think with some polish you can be a great writer”.

I agree.

Here it is.. Talisa’s perspective.

Who is Savannah? You may ask. Well she is my almost twenty year old sister. No biggie,right. You are probably thinking just a twenty year old girl in varsity who goes out to parties and gets her hair done every week at the salon. Just like any other twenty year old. But she is different. Savannah is uniquely different.

Savannah is autistic and has cerebral palsy. Autism affects how she experiences the world. Her brain is just wired differently. Cerebral Palsy affects her body. It doesn’t function the way ours does. She also had an operation to correct her scoliosis. She had rods put into her back to keep her up straight. The good news is that her back is straight. The bad news is that she lost her ability to walk and now uses a wheelchair.

That was honestly the hardest time for me. I couldn’t grasp the idea that one minute Savannah and I were playing Hide-and-Seek, and the next minute she couldn’t even get from the bedroom to the bathroom on her own.

During that time we lived in a tiny townhouse in a complex. Our unit was upstairs, so my parents carried Savannah up and down those stairs for four years. Eli , my brother was a baby then, so they also had to carry him up and down those stairs. Savannah and I shared a room since I was two years old. When she had the operation I was six years old and my parents tried to get me to sleep in another room. But I didn’t want to be away from her.

Even though the house was small, I have the best memories of that time. Savannah and I used to dance together all the time (before the operation), and we played “teacher-teacher” or “doctor-doctor”. It did not worry me in the slightest way that Savannah was different from other sisters. In my eyes she was and is as perfect as can be.

In 2013, we moved to a bigger house. This house was like a palace compared to our tiny house. It has a pool, a front and back garden, a lapa and even a cottage for my Gran. My Gran’s cottage is way bigger than our old house.

We all have our own rooms. It was weird for me at the beginning; not having Savannah with me. Eventually I got used to it. But there are still times when I miss having her in the same room as me.

I am an animal lover and the best thing that happened to us, is that we have a dog now. His name is Jaime and sometimes he sleeps in my room, sometimes in Savannah’s room and sometimes in my parent’s room. This was the start of a new chapter for my family.

Savannah no longer attends school as she cannot cope with it. She used to attend the Johannesburg Hospital School for autistic learners, but after the operation, she was unable to physically and mentally cope. My parents tried respite care for Savannah to have a break from us and for my parents to have a break from caring. It’s not easy being a parent, but being a parent to a person with special needs is much tougher. We thought we all needed the break but it was not so.

It was too weird not having Savannah there with her music blaring out when I got home from school. I felt sad that she was not there to ask me a million questions about my day. Although these things can sometimes be annoying, that is what makes this family. We all felt lost and empty. I missed her. We all did. When she came back we couldn’t let her go again because our home was not the same without her.

She spends her week days at home and my mother has designed a program so that she is still learning. Everyone in our home helps Savannah to do something everyday. It can be baking, tracing letters and numbers or helping her to type e-mails to her old friends. She can’t read or write but uses a special picture program to type. On week-ends she does whatever we are doing as a family. Sometimes she has her own plans with her friends.

All Savannah’s quirks and strange ways, have made our family weird and unique. I would not want to change that! I will always continue Loving Savannah.

In my previous post I shared that our family sets goals at the beginning of every year.

Life is unpredictable and a little too tough at times, so it helps us to place some anchors into our dynamic especially for the children. One of those anchors is to have a great go-to song to carry us through the year. For those days when life doesn’t make sense: when our children have to cope with twists without mum and dad because Savannah is in hospital, when we have to say no to a necessity that is unaffordable, when we can’t understand Savannah, when people are mean, when we feel exhausted and sleep doesn’t fix it, when we need to escape from reality…we simply turn up the volume of our favourite song.

This year, how could our theme song be anything other than “This is me” from the soundtrack of the Greatest Showman. Wherever you are right now, turn the volume up and play this song.

 

[youtube https://www.youtube.com/watch?v=CjxugyZCfuw?rel=0&w=560&h=315]

Be you.

YOU are meant to be!

‘‘Twas the night before school began and all was solemn and all was sad”.

Well that’s how it felt in my house. Talisa and Eli were feeling nervous as they prepared for grade ten and grade five respectively. Eli, a little more so because he was also beginning his school year in a new school.

I don’t believe in assuming what Savannah might be thinking, but just as I imagine what I’d like Talisa or Eli to think about me, sometimes I imagine what deeper conversations are denied to Savannah and I because of her disability.

“I know different” by Tricia Proefrock helps my imagination and lightens some of the burdens of my heart. May it do the same for those of you who walk the same path. And may it help you to be Different to us if you are not on this path.

I KNOW DIFFERENT
by Tricia Proefrock

Dear mommy,

I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can’t do…I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible.
Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I’m perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me…I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won’t look you in the eye, but stare at me, when they think you don’t see. I know different because I’ve seen the many, many more times you have raised your head up high, with pride, because I’m yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid…I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don’t need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me. I know your body hurts, because I’m getting so big. I know that more than anything, you want to hear me say your name. And I know you worry that you aren’t good enough, and that you will fail me…BUT I KNOW DIFFERENT MOMMY.

I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.

Desirae & Savannah

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