Nathan

Tonight my heart is very heavy and sore for a family that I have met over the internet. They live in South Africa in a town near ours. I have been following their journey of raising a child with severe special needs. I have written about him in a previous post. He died yesterday after a fight with pneumonia whilst still recovering from an anti-reflux operation.

His name is Nathan. He was 3 years and 3 days old.

I got to know him this year through his mother’s blog. Although I have not met this brave boy face to face, his life he has taught me some very important things:

All life is sacred and worth fighting for.

Children with challenges can draw out brilliant courage and compassion in their parents and other people.

We should not take any of our luxuries for granted – the simple luxuries of breathing, eating, and sitting up when we want.

We can never control what life throws our way so we should live with grateful hearts for every day that is given to us.

Today I honour Carina – a mother with a deep well of love and a fighting spirit
I pray God comforts her and her family during this season


Today I remember Nathan – a gift from God
I am sad I will never get to see him on this earth, but I rejoice knowing that he has found great freedom in his spiritual body and great joy in the warm arms of His Dad.

Gold Nuggets

These last 3 weeks have been tough. I am not sure what triggered it all off but I have been grieving what Matt isn’t and there have been some really low moments. I feel like for now this season of grieving has come to an end and I have let go of some hopes and dreams and I feel like I can embrace Matt for who he is. I have no doubt that in months and years to come more grieving will be required of me.

I am delighted to discover that I have gained some gold nuggets through this time of trial.

Gold nugget: I have started to be authentic and open about my pain with my broader group of friends.

Gold nugget: Many of my friends have breathed a sigh of relief at my openness rather than feeling awkward and running from me (as I had half expected)

Gold nugget: I realized that many of my friends have been wanting to reach out to me but didn’t know how. In the past I only shared honestly about Matt is people asked directly for fear of inflicting people with sharing they did not want. My holding back meant others held back – we are now finding each other. And it’s good.

Gold nugget: I learnt that if I am putting on a brave face it denies people the opportunity to encourage, love and comfort me. I am learning to recognize my need and to express that need. I have been blown away by people’s genuine care.

With all these gold nuggets I feel RICH and BLESSED.

And ironically, it took a time of deep pain and grieving to discover these gifts.

In raising my children,

I have lost my mind but found my soul.

-Lisa T. Shepherd

Those "ow" moments

I have been thinking a lot about how to manage my interactions with my friends who have kids. Often when I am visiting or chatting with them something will be said that will remind me that Matt is different and cannot do what their kids can do. And that hurts. Up until now I have kept those feelings to myself - I have not been sure how to talk about it without making them feel bad, and usually the feelings are so strong that I am scared that if I do talk about it in that moment I might explode my pain uncontrollably over everyone (not a pretty sight).

I recognise that in each stage of life I am going to have to deal with the fact that Matt's journey is different. So I am sure that those painful feelings are not just going to go away forever. Sometimes I think the easy option is to just withdraw from those friends who have said or done things that hurt me. But I'm sure they won't want that (and then I will have fewer and fewer friends - which I don't want). So I need a strategy that will allow me to be real and genuine about my struggles without blaming or overwhelming my friends. I don't want them to feel like they can't share anything with me or that they can't celebrate their kids milestones with me.

A friend of mine who has been single for many years (but now recently fallen deeply in love) shared with me how she used to cope when her single friends found their Mr Right whilst she was still alone. She recognised that it was a hard situation that could not be escaped. She would take responsibilty for her feelings, but she would chat to her friends if their actions or words were insensitive.

This has given me a strategy to manage those "ow" moments.

ONE I want to chat to my friends and acknowledge that Matt's journey is different (but not less valued) so there will be times when (though it is no-ones fault) I will feel sad. There is no escaping this fact. These will be tough moments that our friendship will need to endure.

TWO I commit myself to taking responsibility for the negative feelings and reactions I have that are due to me being OVERSENSITIVE to what my friends my do or say. God and I will work on those feelings and reactions. I will not make this anyone else's baggage.

THREE I will however share with my friends when I feel they have done or said something that is INSENSITIVE to Matt or his journey. I choose not to withdraw resentfully in silence, but rather gently share with them the impact of their words or deeds. And I will choose to forgive quickly.

This is still very much work in progress. I am yet to take action. But I feel hopeful that being proactive about dealing with the "ow" moments can deepen my friendships and free me from carrying around unnecessary pain and resentment.

I am humbled by Matt

Matthew had physiotherapy this morning. Pam is the name of his physio and her therapy rooms are very open plan and those waiting for their session sit amongst some of those who are having therapy. Pam introduces everyone so that all are comfortable with each other. Matt quite enjoys being able to have therapy amongst others. We usual don't have physio on Wednesdays so we met some new faces, including a 40-something year old man who had some type of disability - I was not sure what. He seemed to have a friendly face, he walked slowly with a limp, and seemed to find it hard to talk.

I was surprised by my reaction to him - I felt awkward and uncertain as to how I should approach him. Here I am a mom who is raising a child with special needs that feels awkward around an adult with special needs. I realised I have a lot more to learn.

At the end our session Matt and I said goodbye to this gentleman - he reached out and shook my hand. Matt was in my arms - he smiled the broadest smile ever and waved goodbye. The man smiled back - a warm beautiful smile - and waved. Matt chuckled. Something special was being communicated between the two of them. My awkwardness dissolved - I felt comfortable being there. Matt showed me how to relax, to smile, to reach out, to just be me and then to connect. Thank you Matt!

Ginger Biscuit

This afternoon as I was settling down to a nice cup of tea with a ginger biscuit, Matt came crawling over. He was showing great interest in my biscuit. I was nervous to let him take it from me as he usually ends up gagging on anything that isn’t pureed. But I also want to let him explore new tastes and textures. Hesitantly I handed him the biscuit and sat waiting anxiously for the inevitable gag and vomit. Matt seemed to like the ginger taste and started chewing with great determination. I watched in amazement as he chewed and chewed. The biscuit got soggy and he chewed some more. He wiped the biscuit on our coffee table, and chewed, smeared the biscuit of the floor, and chewed some more, then dropped it on the couch, picked it up and chewed again. I know most moms would worry about the mess but I didn’t care one bit. I was just thrilled that there he was munching on a biscuit and HE WAS NOT GAGGING.

A Sunny Winters Day in Cape Town

Although Cape Town's winters do not get as cold as other parts of the world, they are very wet. So when a sunny day arrives one has to make the best of it. Two Sundays ago was just such a day so we decided to visit some of our favourite places in Cape Town.

My day of extremes

This morning I read a blog of a parent who has a child with a severe disability. This precious boy has no muscle tone (so he cannot suck, swallow, or lift his head), he can’t see well, is non-verbal, suffers with seizures and frequently aspirates. I was VERY humbled as I read her blog. I was amazed at her strength and courage, even though she sometimes feels that she has neither. I felt that the issues we faced with our Matt were very small in comparison with the challenges that she faced. I was deeply grateful for Matt and that in the light of this other little boy’s story, our lives seem easily manageable.

This afternoon we popped in to visit our good friends who have an 11 month old boy. We had not seen them for a while and I was looking forward to reconnecting. As we walked into their home we were greeted by their precious boy who was boldly walking. I was crushed. The old enemies - hurt, disappointment and sadness ambushed me. It took all my strength to hold it together and greet our friends. I am not jealous of their child, in fact, I was thrilled that he had started walking. Yet it reminded me that Matt is…different, that Matt’s life journey is going to be so different, and that this journey is hard and in some ways is always going to be hard.

I am still trying to make sense of all of this – how I can feel so positive about Matt when I compare my life to one person, and feel so down when I compare our lives to another. I know in my heart that comparing is Bad and Very Unhelpful. Most days I am safely able to interact with others without Comparing, but today I wasn’t.

Grandparents come to visit

During the last week of June Lloyd's folks came to visit. Matt enjoyed bonding with them. Here are some pictures showing the fun that was had:

A shared laugh. Grandpa showing Matt the plants at Kirstenbosch.

Matt taught Granny how to spin a wooden ladybird. Here he is inspecting her technique to ensure she learnt it correctly.

Matt kissing Winnie the Pooh

After lots of fun, its time for bed. Grandpa says Goodnight to cute Matt.