Lessons from Reuben: what my son has taught me about life, Down syndrome and myself {guest post}

While Elisa and I have never met in person, from our very early interactions in an online forum, it was clear she is a woman who exudes love, warmth and empathy, a woman with a strong faith, and a woman devoted to her family. As it turns out, we are both mums to all boys and have exceptional taste in boys names 😉 Elisa, thank you for sharing your heart with us here today. ~ Annie x

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2010. Fourth pregnancy. I am 36 years old. After a bleed at ten-and-a-half weeks, I am told I have had a miscarriage…we grieve, but two days later, a heartbeat is found.

At nineteen weeks, we are told our baby is a boy, that he has a chromosomal abnormality, that it is most likely Trisomy 18, and that he will not live long after birth. We name him Reuben that day and vow to love him and hold him close as long as we can. Reuben means ‘to behold a son.’

At twenty weeks, we find out Reuben does not have Trisomy 18 but a diagnosis of Trisomy 21 (or Down syndrome) is confirmed. Trisomy 21 means there are three copies of chromosome 21 in every cell of Reuben’s body, rather than the typical two copies. A termination of our pregnancy is offered. We decline.

Over the next few months, we begin to grapple with the effect the extra chromosome is having on our son’s development.

I grieve the child I thought we were expecting, fiercely love the one moving inside me, choose to trust God through my tears with what I don’t understand, research like a crazy woman, grieve some more, and try not to fear the future.

At thirty-six weeks, Reuben arrives four weeks early.

There are more surprises, more diagnoses, more hospital visits and seemingly endless tests and scans. But life begins again…a new ‘normal.’

photo32014. Reuben is now three and a half years old and these are the lessons he has taught me…

Lessons Reuben has taught me about life:

Reuben has taught me about dreams…

When Reuben was diagnosed, so many dreams I had in my heart for him and for our future died. Life suddenly didn’t look like I had imagined it.

I realised in order to love Reuben wholeheartedly, I had to let go of the old dreams I had of the child and future I thought we were expecting and embrace all of him with his unexpected chromosome and all that entailed.

As I have grown with Reuben, he has helped me to fulfil many forgotten dreams I have held in my heart, and I now realise it is still possible to dream about the future…dreams like travelling overseas, fun family experiences, and Reuben being able to live independently can still happen.

Reuben has taught me the necessity of hope

Hope has kept me walking when my heart has been overwhelmed with fears of the future…fears of Reuben dying, fears of him getting seriously ill, fears of him not walking or talking. Hope keeps me believing that one day he will learn to jump and run, that he will be able to communicate effectively, that he will one day move out of home, that he will live a long life. And hope also helps me believe I will be ok and that my heart will not be overwhelmed by the ‘what-if’s’ of the future.

Reuben has taught me not to take anything or anyone for granted

During our pregnancy, we were told not only that our baby had miscarried but that Reuben would also probably die soon after birth. Thankfully neither of these predictions came to pass and we are eternally grateful he is here. Harder days are made easier when a choice of gratitude not grumbling is made.

On this journey, I have had the privilege of meeting families online whose little ones have become seriously ill and have passed away. Each of these children holds a special place in my heart. They have taught me to never take life or our children for granted and to be grateful for what we have.

Reuben has taught me to live in the moment – to live mindfully…

I have spent a lot my life fearing the future and not fully experiencing the present. I now realise life is to be lived not feared. I have learnt too that the root of my anxiety is the fear of more emotional pain. Pain may or may not happen, but there is no point missing the wonderful everyday moments of life fearing an uncertain future.

Reuben has taught me about love, grief and joy

These three emotions manage to co-exist in my heart, though as time passes, the feelings of love and joy grow stronger and those of grief are lessening. Reuben has taught me all emotions are valid and that I need to be gentle with myself as each one comes and goes.

I suspect grief will always be a part of this journey as I see Reuben experience areas of developmental delay alongside his typically developing peers, but deep love, overwhelming joy and great pride will always be present too as we celebrate the milestones he reaches.

Reuben has taught me God’s presence is very real

I understand not everyone shares a faith in God, but for me, God has faithfully carried me through some very dark and overwhelming moments. I know He is with me and will hold me no matter what the future has in store for Reuben, myself, or my other family members.

Reuben has taught me about living simply

One day during Reuben’s third trimester, I was feeling overwhelmingly concerned about the future, and was writing in my journal. I felt the need to write the words,

“Trust Me [God] and love Reuben.”

These two simple instructions, while sometimes easier said than done, changed my thought process and helped keep me grounded when my mind started racing too far ahead.

Lessons Reuben has taught me about Down syndrome and those with an intellectual disability:

Reuben has taught me what true beauty is all about…

True beauty has nothing to do with the outward appearance. No matter how a person looks, how responsive a person may be, or how many chromosomes they may have, that person is worthy of great love and a wonderfully fulfilling life.

Reuben has taught me never to compare him to anyone else…

Every person who has Down syndrome is an individual. They may have similar features or medical conditions, but no two individuals are the same. Each grows and develops at their own pace. I realise this may seem obvious, but Reuben has shown me that an individual who is developing at a seemingly slower pace has as much value as one who is reaching their milestones more quickly.

Reuben has taught me that communication is not just about words

Communication to me is about hearing and seeing the heart of a person and taking the time to listen to them, however they are able to communicate, so they feel understood. Communication may take place using words, gestures, sounds, facial expressions, sign language, communication cards or an assisted communication device like an iPad, all of which we are using with Reuben.

Reuben has taught me that every person with an intellectual disability deserves acceptance and respect

I wish I could say this wasn’t the case, but before I had Reuben, my attitude toward people with an intellectual disability was one of condescending tolerance. I did not see them as being equal to those without a disability or place much value on their lives. Reuben has helped me examine my own heart and has revealed the prejudices I didn’t realise I had.

Reuben has taught me the importance of connection with people on a similar path…

Friendships and support networks, both face to face and online, literally keep you walking when you feel like giving up. Hearing someone else say the words ‘me too’ is incredibly reassuring.

My journey with Reuben has taught me that doctors and medical professionals need to be listened to and respected but they are not always right… We were told many worst-case-scenarios throughout Reuben’s pregnancy, and none came to pass. And thanks to the advice of a good friend, I am learning not to cross any diagnosis-bridges before I have to.

Reuben has taught me that people with Down syndrome understand a great deal more than they are able to communicate…

and that they have a unique and wonderful sense of humour and way of seeing life. Reuben has brought great delight and laughter to our family, and has been nothing but a blessing to his brothers.

Reuben has reminded us of the importance of optimum health and nutrition

Like all of us, Reuben particularly needs to eat foods which will hopefully lead to a long and healthy life, without diseases like diabetes, obesity, or Alzheimers, which people with Down syndrome are more susceptible to. He has inspired me to reassess our family’s diet, to help give each of us the best possible future.

photo2Lessons Reuben has taught me about myself:

Reuben has taught me about the importance of looking after myself…

On a journey like this one, I am finally learning that looking after myself is not self-indulgent but is crucial for survival. If I am not functioning well, my children and home fall apart. For me, it’s about taking a mental break from being constantly responsible for Reuben’s needs, and those of the family.

I am learning to schedule some ‘me-time’ into my week, like I schedule in Reuben’s therapy appointments.

Reuben as taught me to be the playful, fun Mum I always wanted to be.

He has taught me to trust myself more and rely on the opinions and approval of others less.

He has helped me find my voice again, and has shown me that I can advocate on his behalf.

He has taught me that my worth as a mother does not lie in what my children can or cannot do…Reuben was unable to breastfeed, but that does not make me a failure as a mother.

Reuben is the most wonderful gift and I am forever grateful he is our son and part of our family.

Elisa, her husband and their four boys live in Tasmania. She has a Bachelor of Music and a Certificate IV in Christian Ministry and is currently a stay-at-home-mum and primary carer for their youngest son Reuben. For work experience in Grade 10, Elisa elected to spend two weeks in a Special School, never realising the journey she would find herself on many years later.

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