When David was born in 1997 we could never have imagined the trauma that was going to face us during his birth or in the years that have followed.  As any other parent will know, expecting a child should be a joyful time, and the birth an opportunity for unbridled joy!  Our reality was somewhat different.  David, our beautiful precious son, came into the world in a storm of chaos and uncertainty.  Both David and I were very poorly and nothing about the following period of time could be described as normal.
 

My husband and I entered a state of shock and trauma as we learnt that David would have disabilities.  At the time it was a total blur and we almost felt alienated from our own situation as we tried to come to terms with the prospect of caring for such a vulnerable child.
 

Gradually we started getting on top of things, learning about how we could manage David’s health needs and try to assemble some kind of family life.  We wanted to give David a loving environment and to give him the best possible care.  And with determination, and love, we set about creating some structure to our lives.
 

Soon after David was born we were given further difficult news; David was suffering from severe epilepsy which was diagnosed as a life-limiting condition.  We could accept David’s disabilities, but knowing that he would have a very short life and not grow up to be an independent adult was almost unbearably hard. 
We struggled on for the first four years, lunging from one crisis to another, never quite sure how things would work out, or when they would settle down; a nightmare really.  Then we had something of a breakthrough.  Our local Community Nurse told us about Naomi House and explained how the charity might be able to help the whole family.

 

We visited Naomi House shortly after and found out what a children’s hospice could offer David and us, and how the team there would be able to help us cope with the unrelenting regime of caring for David.  Naomi House has given us a lifeline, a coping mechanism during stressful times.    The endless hospital visits and complex medication routines combined with David’s breathing difficulties (David breathes with the aid of a special machine that keeps his lungs inflated and his airways open) meant that we have struggled to manage.
 

It is not unusual to be up to help David around 20 times a night.  David is very vulnerable, and needs attention 24/7.  Before Naomi House we had forgotten what a complete night’s sleep felt like, didn’t realise how near the edge we had become; the fatigue was overwhelming.

 
Whatever life throws at us, Naomi House is there, to give subtle support, and in times of crisis they pull out all the stops to put our needs first and help us get back on our feet.  This was never more important than during a period of ill health when I had a major operation.  My husband simply couldn’t have coped with my illness and looking after David.  Naomi House stepped in and offered us emergency respite for David until I got back on my feet.  They were like a pressure valve easing the whole situation – and we can’t thank them enough for that.  They came to our aid when nobody else could sort things out.  The emergency visit for David meant that social services could put measures in place so that we could cope at home.  Who know what would have happened without the hospice!

 

 

Now, against the odds, David is starting to become a young man.  At 14 years old he is growing up fast, and his needs are changing.  Over the next few visits to the hospice he will start visiting jacksplace and we can’t wait.  David is ready for a more grown up environment.  It is very exciting for us all and we feel very positive about what lies ahead. jacksplace will give David a place where he can experience some degree of independence, although not in the usual way of teenagers and young adults.

The staff at the hospice will be there for David up to the end, whenever that dreadful day arrives.  Naomi House and jacksplace has given us back some elements of choice.  During David’s birth we had no control, but after looking around the end of life suite we recognised that we will be able to manage David’s death.  We would be able to be a part of that sad time, rather than become bystanders as we were when he was born.  That is a very empowering change of perspective.
 

Our lives have definitely been so much better since we walked through the doors of Naomi House 10 years ago.  David loves his time there, with all sorts of opportunities to join in activities from hydrotherapy to music and messy play.  He is full of smiles, giggles and laughter when we pick him up.  Our quality of life as a family is so vastly improved because of the care the hospice gives to all of us.  We know that it is a loving environment where David’s needs come first, which means we can relax and give ourselves a chance to enjoy life, a chance to have a nice life, not just cope.  Nowhere else is able to offer us that.
 

 

 

 

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please contact us, or call us on 01962 843 513