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Geraldine’s story

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Geraldine writes about her youngest daughter who has benign congenital hypotonia and her experiences of balancing family life, learning to be proactive and maintaining a sense of humour.

My husband and I have two much-longed-for daughters. After nine years of unexplained infertility we were resigned to a life of childlessness, only to be absolutely ecstatic when we discovered, following years of failed treatments, that IVF had been successful and we were expecting a baby in 1997.

All went well and nine months later our beautiful first daughter was born without complication. Never imagining it would be possible, we were once more thrilled and delighted when, four and a half years later and after more treatment, I discovered I was pregnant again.

However, this time the pregnancy was more problematic and following various complications our lovely little girl was born with additional needs. She was very ‘floppy’ from birth and stopped breathing several times in the early days. She was diagnosed with benign congenital hypotonia which means her muscle tone is low, and each movement is a ‘flight against gravity’. Consequently, she was physically very delayed.

As time went on we also discovered that she had learning difficulties and a significant fluctuating hearing loss

As time went on we also discovered that she had learning difficulties and a significant fluctuating hearing loss. We spent time in the special care baby unit when she was born and then over the years made countless trips to hospital outpatients’ clinics. Despite all this, she is an easy going and delightful child. She has a need for routine and reassurance and never ceases to bring a smile to our faces, particularly with her funny and incessant questions as she tries to make sense of the world, such as “How old was I when I was born?”

From day one, we felt our family life had suddenly taken a very different course from the one we had imagined it would follow. Our younger daughter is now ten and we have slowly moved from being ‘reactive’ in situations to ‘proactive’; learning to adjust our view and see her strengths; to appreciate each day and to be ‘mindful’ of every moment; to cry when needed; to realise that once on a different path, it’s not so bad – we need to look ahead on this path not ‘across’ to the path where we think we should have been.

On our journey, the overriding and positive part has been the support and help we have had from our wider family. Coming from a large close-knit family, I knew and appreciated that they would rally round to help. However, I hadn’t realised the extent of support we would also receive from our friends, our other ‘wider family’.

Having key people who have taken time to get to know and appreciate our daughter, is a huge help. During the hard times, they have been there offering practical help, making meals, doing the ironing and offering lifts to hospital. We also have friends with similar experiences, who provide empathy, emotional support and a shoulder to cry on. We are so grateful for the continued acceptance of our friends and family even when we’ve not been at our best.

Others have lovingly helped support our older daughter along the challenging path of coping with a sibling who has additional needs. I have a very dear friend who is a nurse. She and her family have got to know and love our daughter and regularly care for her, allowing my husband and me to have occasional weekends away together. Over the years I have also grown close to another friend who has a child with additional needs. We find our mutual empathy is of great support and we also know that somehow finding some humour in our situations helps us to cope with the pathway we are on.

As expressed by Mother Teresa, “I know God will not give me anything I can’t handle. I just wish He didn’t trust me so much.”

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