Desirae and SavannahI have been struggling to write. A recent awareness day event about Cerebral Palsy touched a chord within me and messed with my heart. I was a guest speaker at the event which focused on inspiring younger families with children with cerebral palsy about what possibilities life held for them and that the diagnosis was not the end.

I listened to the stories of hope and sacrifice and achievement. I understood what it was to be the mother who spoke about these things. But that day I felt desolate and even defeated. I felt that we did not belong to a day about hope and inspiration. What inspiration could we offer? We had hoped. We had sacrificed. And our daughter had known what it felt like to defy the odds. But now? Now our truth was that we are also the family of a child who is regressing.

Our daughter is no longer on an upward trajectory. While Savannah is not diagnosed as having a terminal condition, the words “thriving, will develop, recovery, achieve, learn” and such; are not part of the vocabulary used by her doctors to describe her future. We are not the story younger families want to hear. We are the parents whose love is not enough.

It is not enough to keep her on the upward curve. It is not enough to keep her as healthy as she needs to be. It is not enough to stop the ache in our own bodies each time we lift her. It is not enough to keep myself calm when her obsessions make me feel like I am losing my mind. It is not enough to stop her physical pain. Our love is not enough to save her from her suffering.

When Savannah was younger, we felt isolated from our family and friends because they could not understand what we were grappling with in coming to terms with having a child with a disability. But we had solace in the community of other families like us. Now though, we feel the pity and the awkwardness from other parents because we are a treacherous reminder of the other possibility for people like Savannah. The possibility that some children grow up into adults who are going nowhere slowly.

And no one wants to know that this possibility exists. Other families who are parents of adult children with similar challenges know the unpleasant feeling too well too: When we are sought for our wisdom but held at a distance for our truth. We are great inspiration as long as the story is about how our children are thriving. While caring for an adult child with complex needs can be inspirational, no parent wants to pay a price like this for the title of being inspirational.

Last night after Michael’s shift with Savannah, I went to lie with her from about three in the morning. As I felt her trembling body and listened to her ask for what felt like the millionth time “Mum, God heal me? I be better?”, I realised how lonely we are. Lonely yet again. There are books, websites, talks, seminars, support groups, something where mothers of children with different needs can find a sense of belonging.

Where do you go when you are grieving the living? Who can relate to being able to answer the question “Why?” when their autistic adult child can’t make sense of her physically disabled body, that is in regression. How many mothers have looked into soft brown eyes and answered “I don’t know”? How do you say that sometimes I don’t want to do the thing that makes her happy because I just can’t face doing the same thing again? Who has the capacity not to judge you when you want to say “I just can’t do this again today”?

Am I angry? Am I sad? Am I frustrated? Am I tired? Yes, I am all of these in different proportions at different times. Do I think life is unfair? Yes, I do. It can be unbelievably hard to face each day not knowing what Savannah will be going through while we still have to be part of “life as usual” in other aspects.

What then do I believe about God and the purpose of life?
I believe this: Mary birthed a Son. He came, under what must have been terribly awkward circumstances for her. Both Joseph and Mary loved Him for the time that was given to them. When the worst time of that child’s life unfolded; Mary had the strength of all the world put together when she stood at the foot of that cross and watched Him suffer and then die. God did not spare even her, the mother of Jesus; from the truth of life. It hurts to love.

I can’t say I have the same strength as Mary did, but I can say this:
You don’t stop being a parent when it hurts. You can lose the whole world for the sake of your children but you never lose your children for the sake of the world. My heart will break again and again. Michael and I know both joy and sorrow. We already have the ability to weep with one child and then to laugh hysterically a moment later with another. We will talk late into the night about how amazing all our children are; how we are sad for some things and how our “hard” is so unrelatable to most of our friends except for a few parents.

Our love is not enough to give us the outcome that we believe Savannah deserves and that we as parents will find easier to cope with. Instead we continue to dig deep and continue to find ways to make life wonderful and spectacular. When you have lived with grief for a long time, you realise a few truths about life:

• To know grief is to have the choice to choose joy.
• To acknowledge that you cannot do anymore, doesn’t mean you have given up. It means that you       simply cannot do anymore.
• To be able to live in the moment is usually learnt through great heartache.
• Worry is a captor who was given the keys to the prison by the captive.
• Children don’t need superhuman parents who can fix everything and make it all better. They also     need parents who have the strength to hold them when it can’t be fixed and when it won’t get             better.
• The best people are those who don’t need you to fall apart to know that they are there for you.
• It is a conscious effort to make sure that you can remain soft when most of what you understand       about life can make you hard or indifferent.
• From the moment we are born, we are all dying. When that makes sense to your soul, you will          appreciate the magic of each morning.
As sad and morbid as that may sound; really..it is the beginning of living beyond grief.

Our family had a great treat on Saturday when Savannah was able to attend a wedding with us. After attending so many functions as a family of four; it was awesome to finally attend something as a family five. What fun it was to get dressed. A very dear friend loaned Savannah a beautiful Punjabi (a traditional middle eastern garment) to wear. She spent days looking at it and feeling it so that she could become used to the texture and colours.

Savannah struggles with sensory processing difficulties, amongst other struggles. For many, many years we could not wear traditional clothing because the colours were too overwhelming for her. So overwhelming in fact that she would throw up after terrible bouts of gagging. This past weekend Savannah, Talisa, my mum and I wore traditional Indian clothing and I had a special time getting the girl’s hair and make-up done.

We took many photographs and created lovely memories that was special to share with my Facebook contacts on my personal page. Everyone enjoyed seeing us decked out and acknowledged how special it was that we have a photograph of us as a family of five. As I study the photo of my family looking back at me, there is something that I want you to know about families like us.

We are grateful when Savannah is acknowledged.

No, we do not want to be the centre of attention nor do we want her to be treated any differently. But her disability means that there are some things that she will never be able to participate in for varying reasons. Please don’t go off on the “positive thinking” thing. Some people are born really short and need a step-ladder to reach the top cupboards in their own homes (I know, I am this person), and all the positivity in the world doesn’t make them grow to reach the cupboard. So yes, same thing. Savannah’s disability means she just can’t do certain things. When she is acknowledged with kindness and compassion just for who she is; it builds up her self-esteem and makes the hard stuff a little more bearable for Michael and I.

Earlier this year at one of the weddings that Savannah briefly attended, the bride and her mum had a family member bring a bouquet of flowers to Savannah to hold. The bouquet was a smaller version of the brides’ bouquet. Savannah held it while she watched the bride walk down the aisle. With so many things for a bride and her mum to think off on such a big day, it was very touching that they thought of including Savannah in this way. Note: the bride never posted a single picture of this on any social media platform. It was just a special moment for her and Savannah and was not the brides’ opportunity to be “applauded for doing something nice for the disabled kid”.

At another wedding that Savannah could not attend because she was unwell; instead of throwing her bouquet, the bride gave it to me for Savannah. Yet again, at a different wedding, the bride also gave me her bouquet for Savannah paying tribute to Savannah in a moving speech. Then all the guests stood in prayer for Savannah. I wept.

At the wedding that we attended this past Saturday, the guests joined the bridal couple on stage for photographs. We would not have been able to get Savannah up on the stage and were contented to not have a photograph with the couple. But the bridal couple came down to where Savannah was seated and took a photo with her. That was very meaningful to Savannah that the bridal couple acknowledged her.

All these ladies displayed an unselfishness that is not seen too often today. To think of Savannah in these thoughtful ways when they have every right to be selfish is simply breathtaking. I recognise that we are incredibly blessed to have so many people of calibre in our lives. But too many of my friends with children with special needs do not have this support and insight from their own families and their places of worship. Some people even say it’s unfair that the child with the disability “steals” the attention on the day.

Families of children with special needs recognise that we are the “eye sore” of an event and we definitely do not want to “steal” the attention. Believe you me, it is no fun having people stare at your child or make patronising comments to you when they’ve had a couple of drinks and are suddenly less awkward to be near your child.  Or having to withstand the lovely ladies in their finery who stare condescendingly at you and at your child. No, thank you.  We do not want to “steal” the attention at all.

In society today, people without a disability wax lyrical about how hard everyday life is for them. A life they choose to live, built by their own hands. So it is astonishing that as a society we are not nearly as compassionate or caring to those who cannot live at the same pace that society sets. There is little point in buying a sticker or dressing up in costume to support a fundraiser for special needs; if when you have the opportunity to acknowledge the family in your midst with a person with special needs, you don’t do it. It is a testament to our humanity when we show that we care. It reminds families that there are good people in the world. It makes them brave and helps them to make beautiful memories with their children. The consequences of these actions have a far deeper impact than wearing a sticker ever will.

People with special needs and their families did not choose to be in need of support and care but we are. Our children did not choose to be dependent on their families forever but they are.  We want to rejoice and celebrate in the happy events of our families and our friends. When we make what is sometimes a mammoth effort to show up and to keep our bleeding hearts in check to celebrate someone else’s happiness; please simply acknowledge it; quietly and gently. You may forget the moment soon after the event has passed but we will remember it forever.


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