The shattering of a heart when being broken is the loudest quiet ever.
Carroll Byrant
There were many reasons this photo would normally have quickly gone to the deleted folder. A quick snap taken early morning at the end of our regular occupational therapy session.
Smiles all round. Me with my little chap. But what you don’t see is my heart has just shattered into a million pieces. What you don’t see is that I’m smiling when I want to be crying. What you don’t see is that in this moment everything has changed but nothing has changed.
The photo shows a mama with her sweet little boy. What it doesn’t say is that I’d just been told that Oscar likely has autism in addition to Down syndrome. What it doesn’t say is that this has been a hard season and it feels like it keeps getting harder. In this moment I am exhausted and devastated.
Our path has taken a diversion down a narrower side path. Or as I said to my husband, when the tears could finally fall, I feel like we’ve been on a mountain and it’s just been revealed that there’s another mountain behind it to climb.
Fast forward a few months, and on World Autism Day, we sat in a Specialists office at Starship for a formal assessment. A week later the official letter arrived confirming that Oscar also has autism.
I kept this photo. It marks the start of a new journey. A widening of the lens. Nothing has changed in many ways. He’s still my Oscar. We’ve just had language put around the layers and challenges that we have been dealing with. Answers to why we were seeing a widening gap between him and other children with Down syndrome. Why too, language and skills gained have been lost. Why some things are just too hard for him to deal with. Why milestones keep being missed.
Today, the tears are still close to the surface and at times it feels very heavy. It is a more challenging path we now navigate. My bedside table has had a few more books added to it. We’re learning new normals.
But Oscar tells me multiple times a day that he loves me. He tells his dad, brothers and grandparents the same. (Occasionally the McDonalds drive-thru worker is also told). And in these precious few words of his is the key. The key to keeping on. The key to life.
Love.
In Corinthians, Paul tells us to “follow the way of love.” Love is what matters most. Love is what lasts. Beyond milestones or achievements. Beyond language. Beyond hard or even easy days. Love is what we are called to do.
Love is patient, love is kind…It always protects, always trusts, always hopes, always perseveres.
1 Corinthians 13:4-7
Love given.
Love received.
Love.
Blue Skies & Lollipops 
Oh Pips.. no words are adequate… you are an amazing family showing Oscar so much love and care..and now you and Dean have to dig even deeper to parent. Praying God will give you courage and capacity and he will make up any energy deficit each day.
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div>Aunty Faye and Unc
Thanks Auntie Faye, it’s been harder than we expected but learning to work to his time and space. He’s such a honey and his hugs help me reset. Xx
🙏❤️🙏❤️🙏
Oh, Pip the tears have come. My heart breaks for you, such a reality, such a challenge, but with God who enables. I have to say, still not easy and doesn’t take the tiredness away, BUT God, where would we be without Him?
Pip, our lovely farming neighbours here who live at Taihape and come through regularly and Air B&B their house in between, have 3 young children, the eldest, James has autism. I have felt a bond with him since we first met, having no idea anything about him had a label. He is their only son and this year has been boarding at Huntley ( school near Marton ) and next year has been accepted for Palmerston North Boys, boarding. I have written to James at school and his ‘precious’ reply is in my ‘memories’ box. One day while we were chatting he said to me with all sincerity….Judy is your Mother still alive? I was SO touched, as over the years, I have had times of longing for someone to ask that question. He is sincere and loving. His Mum and I have become good friends. It’s been a privilege to encourage her and tell her how I see James. Leanne, his Mum has asked about my faith and wanted to know why I am like I am? I have shared my testimony with her.
All this to encourage you Pip. You are an amazing Mum, with a huge heart, a busy Mum giving out to so many. There are no favourites in the Lord. His love and arms are everlasting.
Keeping you and you all in prayer.
Much love Judy xx
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What a beautiful story!! And so lovely that you’ve been able to come alongside James – he mother will be so blessed. But for God! He led us to transfer Oscar into a special needs school – so grateful now as I know he gets the support he needs! Isn’t God amazing! Xx
Dear Pip – oh such an incredibly moving post. My eyes are full of tears for you. I have the deepest admiration for you and am in awe of your faith, strength and love – and for the way you keep on going even though the going just gets harder and harder. Oscar is so blessed to have you as his mother and I hope that you can drink in his hugs and his expressions of love and that they help you on this road. I will keep praying for you and Oscar and hope that you are encouraged and uplifted. Much love, Bex.
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Oh thanks Bex! He’s totally worth it and his love keeps me going. Trying to tool up as best I can!!
Oh Philippa and Dean. What heart-rending news for you after all you have faced. But what a dear boy and how delightful that he is able to express his love for you despite. You are raising a remarkable family.
With love, Keri.
Thank you for the encouragement! He’s my darling wee chappy! Knows when to melt my stress away with a hug!