I want to walk like the others. . .

I was on youtube earlier and saw this video and I thought I'd share it with you so that you can all understand Xaynee's disability.



Hemiplegia is a form of Cerebral Palsy and Xaynee is affected on the left side of her body. Although my little girl can walk on her own, her condition is getting worse and that is why I want her with me so badly to make sure that she gets treated.

This video left me in tears, I have to admit that. I remember how Xaynee used to try to run as fast as she could in her own little way while her sisters ran away from her. I felt so sorry for her when she finally stopped or fell down, exhausted and with bleeding toes. The longing in her eyes broke my heart.

Children nowadays just don't realise how very fortunate they are to just be normal.

The Miracle of A Child's Wish

As my usual day goes, I was thinking about my children today. Suddenly a very special memory came into my thoughts.

Last year September, Lili visited me for the school holiday. We went to pick her up in Kuruman and on our way back to Pretoria, my mom asked Lili that if she had three wishes and she knew they would come true, what she would wish for.

Lili replied that she wished my dad who has a hearing problem could hear properly. Then she wished my mom who has had several operations on her eyes could see properly.

Her last wish was that her little sister Xaynee would be able to walk like a normal child.

I was in tears as I hugged my little girl, she didn't think of herself once.

The time Lili spent with us was the most wonderful time I've had these past two years. Seeing her play with Xaynee and the way she cared and watched out for her was just beautiful.

After we had to take her back, something happened...

One morning Xaynee woke me up by stroking her hand across my cheek. She looked happy in a strange kind of way. I got up and followed her to the kitchen to make her breakfast...then I realised...

My baby girl is walking with her heel down, like a normal child! I woke Johan up and we were so happy...but it only lasted a week before the muscle in her leg went back into spasm.

I wondered about that alot and today, for the first time...I figured it out that Xaynee needed her big sister.

Remembering this has given me new hope to keep fighting. I want my two little girls to be together.

About my daughter with special needs..

During July 2004, my life changed.

Me and my ex-fiance, Johan, went out for dinner and we were on our way home. That whole day I kept thinking about the terrible dream I had the night before. I woke up 11 times, almost screaming. It was strange, all I could remember was this strong, cold wind blowing against my face, it took my breath away.

We had just picked up our daughter who was almost a year old and we were halfway home on the R573 to Kwa-Mhlanga. We were living on a smallholding with his parents at the time.

I remember having Xaynee in my arms, she was sound asleep and I was tired.

Then...

I heard a crashing sound, then...the wind...

I looked down and there the windscreen of the car lay on my baby girl. I panicked. Johan and I lifted the windscreen and pushed it down, Xaynee just lay there...staring at us. Her face was covered in blood.

A car stopped behind us and reality kicked in.

The people in the car jumped out and ran towards us as I opened my door. They were black, but I was thankful, the man said he knew we were within the speed limit. The woman took Xaynee from me as I got out and fainted.

I knew what had happened as I regained consciousness. We ran over someone. I felt angry, all I could think was 'What did he do in the middle of the road at nearly 23:00?'

A crowd was building up around us. I was scared as I saw people taking things from our car. I finally grabbed Xaynee and sprayed pepper spray into the car to keep people out.

I knew I had a couple of cuts and bruises, but I was worried about Xaynee. She hadn't meed a sound since the accident happened. The ambulance took us to state hospital as we had no medical aid.

At the hospital the nurse gave me a piece of cotton wool and toilet tissue to clean Xaynee's face and head. I felt relieved when they told me that the blood on her was actually the blood from a cut in my face and she only had a small cut behind her ear.

But...

She had a terrible bump on the right side of her head.

They took x-rays, but never gave us the results and just told us we should go, they needed the space another emergency.

We went home and carried on, thankful to be alive after seeing how our car looked and Johan was found not-guilty of manslaughter.

Little did we know...

As Xaynee was growing up, I had a suspicion that something was wrong. We took her to the GP, but he only referred us to a peadiatrician and we couldn't afford that.

Xaynee was drooling alot and I had to keep her bib on to keep her from getting chest infections. Then she started walking. At first, she had no balance, then...she started walking on the tip of her toes only with her left foot.

Finally, someone told us to get her evaluated, this person told us that Xaynee was Hemiplegic and the evaluation proved it.

I fell asleep crying that night. Why was life so cruel?

We suspect that the Hemiplegia was caused by the accident as the injury she had was on the right side of her head and her left side was now semi-paralysed.

Xaynee is almost 5 years old now and despite her disability, she is a little angel.

I must admit that there were times that I felt scared. How was I going to raise a disabled child?

We sent Xaynee to a School for Disabled Children in Pretoria. There she is undergoing physiotherapy and speech therapy.

Xaynee still can't walk or talk like a normal child, but she taught herself and us how to communicate with her. She only says short, easy words like mommy.

I have seen many disabled children at her school and I am thankful for having such a clever and intelligent daughter. She does get frustrated and that leads to 'tantrums', but everyone loves her.

What is hemiplegia?

Hemiplegia literally means paralysis of half of the body. When someone has hemiplegia ('hemi' means 'half' in Greek) it is because one of the hemispheres of the brain has been damaged, usually before, during or soon after birth. Childhood hemiplegia is a relatively common condition, affecting up to one child in a thousand.

How does hemiplegia occur?

The causes of congenital hemiplegia are mostly unknown, and usually parents become aware of their child's hemiplegia gradually during his or her infancy. There is a higher risk in premature babies, and it is unclear whether a difficult birth may be an occasional factor. In most cases, however, the damage occurs during pregnancy, and researchers have as yet been unable to isolate any contributory factors - in other words, it would appear to be mostly a matter of chance. Parents often worry that they may be somehow to blame, but this is not the case.

Acquired hemiplegia results from damage to the brain during childhood. The most common cause is a stroke (when a bleed or blood clot damages part of the brain), but it can also result from an accident or infection

What are the effects of hemiplegia?

It is difficult to generalise: hemiplegia affects each child differently. The most obvious result is a varying degree of weakness and lack of control in the affected side of the body, rather like the effects of a stroke. In one child this may be very obvious (he or she may have little use of one hand, may limp or have poor balance), in another child it will be so slight that it only shows when attempting specific physical activities

What can be done to help?

Hemiplegia cannot be cured, but a lot can be done to minimise its effects. Your child, once diagnosed, will probably be referred to a Child Development Centre (CDC) or the children's department of your local or regional hospital, where therapists will work with you to develop his or her abilities.

The immature brain is very flexible, and many of the functions of the damaged area can be taken over by undamaged parts of the brain. So whilst an adult who has a stroke loses very specific functions, depending on which part of the brain was affected, in children and young people with hemiplegia it makes relatively little difference to their general development which area of the brain was damaged.

Your child's treatment will probably be based on a multi-therapy approach, involving physiotherapy, occupational therapy, and speech therapy where necessary. Therapists work closely with each other and with parents, teaching them exercises and techniques which they can continue to use at home, so that they become part of the child's everyday life.

In general the child with hemiplegia should be treated as normally as possible. However, it is essential to include the weaker side in play and everyday activities, to make your child as two-sided as he or she can be. As they get older, many children and young people with hemiplegia can be encouraged to develop better use of their weaker side through involvement in their chosen sports and hobbies

- Hemihelp

Unfortunately, my relationship with Xaynee's father ended due to verbal, emotional and physical. I was left without anything in his attempts to further destroy my life.
Xaynee was taken out of my care and placed in his foster care.

I will fight to have my little angel back. Since I have lost her, I came to realise that she taught me so much. She taught me to love unconditinally. She taught me that a smile can really make you feel better. She also showed me never to give up.

To my baby angel, I want to say...

Thank you Xaynee

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God.
"Could I give a handicapped child a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today. She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."

I read alot of articles about children with disabilities, especially about children with Hemiplegia, like Xaynee.
I read this poem the other day and it made me cry, thinking about how difficult it was at times being the mother of a child who can't walk or talk like a normal child and how close this poem came to describe how I even lost my faith in God.
I know now that my little angel taught me so much and that nothing can come close to describing the kind of love she radiates with every smile.