sharing facts from our Paediatrician
yes I know it has been a while since I have written anything. I realise how important it is to share our experience of caring for our children in the hopes we can help other parents. For us it was a scary journey and still today I am learning how much those 9 years of caring for Melissa has impacted on my life today. I have no regrets but feel I am still learing about life. There is some great sharing being done by families.
this is difficult to admit but it is very true. Having Melissa changed me for ever. Caring for her 24 hours a day for 9 years changed how I think about so many things it may be difficult to explain. Life is different, I know I see things differently , my values are different from others and it can make it difficult in your everyday life. Moving on you are a different person and for me I find it difficult to fit back into what is/was a normal life.
life was our biggest challenge with the birth of our child with Trisomy 18. We did not know anything about it and the professionals gave us very little help or assistance as they too were not used to a child surviving. So how did we cope? We embraced each day, had lots of hugs, cuddles and made memories to treasure. We made it home and celebrated several birthdays - the first year each month had a birthday celebration. Each tiny wee milestone was a miracle that we treasured and still do. We had many frightening events - turning blue - vomiting - and several trips in a rush to hospital where they did not understand or know what to do - so once stabilised we would return home. Issues covered sunlight, feeding, sleeping, and communication. Caregivers were scared to provide care unsupported, and could not attend if they were unwell - due to poor immunity. The youngest of 6 children we had our work cut out. What we were taught was very valuable - love and laughter and making memories we still treasure today. We had 9 years 7 months with our precious child and have no regrets as somehow we were given the strength and knowledge of what we needed to do. We learnt so much about what is important in life.
Our story was written with love and pride and to share the difficult challenges our family faced in caring for opur much loved daughter, Melissa. It was written to share with others the ways in which we coped and shared her short life. The hope is that what we learnt can be shared with others. As a family we all chose to remain positive. We were not in denial. We could only cope by being positive. It was difficult to discuss the fight for life we were facing. Almost proving too big a challenge we were supported by our community and still cannot thank those special people who were there for us. It is only now I can be honest and say what a scary and lonely time it felt at times though every wee giggle and new goal made every minute worth while!
🙂At seven we felt it to be a miracle in medical terms due to the unfavourable report we were given at her birth. She was classed as severely physically and intellectually disabled as well as having other abnormalities associated with the syndrome. Detailing some of Melissa's needs:-
1. Melissa required feeding every 2 hours throughout the day.
2. Great difficulty bringing up wind. A constant problem.
3. Melissa was inclined to choke during early stages of sleep. If not attended to this led to vomiting! All sleep day and night supervised. 24 hour supervision necessary.
4. Melissa had light and heat sensitivity. Does not cope well with illness i.e. a cold . Melissa confined to her home 99% of the time.
5. Can be difficult getting to sleep often taking hours to settle.
6. Melissa needed to be kept happy and occupied when up / awake to avoid her crying as the crying led to vomiting!
7. Bottom line Melissa needed intense one to one input
But I need to add to this we had fun and lots of giggles and happy memories. 🙂