Daily Archives: March 24, 2017


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Moving house can sometimes be an inevitable activity for a family. It is a difficult decision to take and carry out. It is hard for a family with a sick child because not only does the house “move”but even the services that support their family may have to “move” as well. The structures that have become part and parcel of the family’s coping mechanism may have to change. When there is severe illness in the home, support although readily available may be inaccessible to the family for reasons such as lack of information, time or a simple dis-interest. Over time as the family become even more pressured, they begin to become more aware of support structures and gradually access them. Accessing support requires information, time, patience and adjustment. It is hard to accept the interference of other parties in the home however well intended. Overtime, families learn that their new routine will involve accepting this well meaning “support”. The family adapts to the support they receive to the point of comfort until there exists a smooth flow of seamless support from the community. When house moves occur, some of these structures which by the way are at times tailored to suit the families peculiar needs become altered, irreplaceable or totally lost. The prospect of this change can discourage a family from taking the next step to accessing more adequate accommodation. Some families are lucky enough to find suitable housing within the same locality. For others who have to move far away, the case is totally different and adds more stress to the family setup. Changing energy suppliers and other familiar infrastructure seemed quite normal but can be very disruptive to a family with a sick child. Children may need to change schools. For siblings or children in the home this can be very traumatic. The school setting is more than a place of learning to these kids. It is a hub of stability, a safe haven. The social ties and friendships formed at school impress greatly on them emotionally and psychologically affecting their overall well-being. These ties protect their otherwise fragile and delicate emotions from the disruptions that having a sick sibling can bring to the home. School becomes the one “constant”amidst the dynamism that sums up their life. For parents who live in the same community but have moved far from the school, the commute may be too strenuous. Support exists within the community to help families through this adjustment process. The children and family practice, Contact a family, Carers UK and even the Social services can advise on issues related to home-to-school transport and volunteer school-run groups. Another aspect of moving home may involve changing the General Practice or GP surgery. The GP surgery that the family is used to can be a structure that evolves into a hub of information for the family. Many GP surgeries in addition to providing primary health care to all families act as sign-posters to other services within the locality that can support families with sick children. GPs kick-start many support and diagnostic processes by making simple referrals which help families access further help. Moving houses may mean changing surgeries. It is fine and totally normal to feel lost at the prospect of changing surgeries. However since 2015, all GP practices in England have been free to register patients outside their catchment area. Although this is totally at their discretion, it can be worth discussing your family situation with the surgery especially if you feel your child or loved one’s condition is too delicate for a new surgery to adapt to. Things are easier when discussed with the right people. So while it may be a stressful time for you, we hope that you do not feel alone at this time. Thank you for reading If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series. Photo credit: Pixabay  

Hospital life : Moving home when you have a sick child


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This series was created to share with our readers the thoughts and emotions of a grieving parent dealing with the monumental tragedy of losing a child. Enjoy! For the next few weeks, I have decided to pen (or type) down my feelings as I walk my way through … and hopefully …walk my way out … of the weight of the emotions that have taken up abode in my heart since my son’s demise in February this year. I, as usual, refuse to let this whole experience be the end of me… but a rebirth. I am absolutely certain that within this circumstance, there will be many lessons to learn. Hopefully many interesting emotions too! I can certainly testify to the fact that I have been swept by many so far.  I will tell you about this one that I feel I have just come through: GETTING HIS FUNERAL SERVICE DONE We had the final service in memory of our son at the St Christopher’s chapel at Great Ormond street Hospital London. It was special. After a lot of e-mails and phone calls back and forth between the chaplain and I, we pulled it off! When Fred died, I was not really sure about how the next hour would be because it hardly made any sense to me. All I knew was that I was not going to let myself worry. The worst had happened and in my mind, everything would be easier…fall into place. Nothing could possibly be worse than his death. I set out asking questions and being initiated into a new world of funerals, flowers, invitation cards, thank you cards and what have you. One by one each activity slipped into place. We were directed to the Coop funeral services by another lovely parent whose daughter had also sadly passed away. She reassured me about how personal and comforting their service was. I knew I had to contact them. Although I had been referred to many other directors locally, I could not shake off the reassurance in this woman’s voice. So I made the call one morning and booked an appointment. The atmosphere was serene and comforting when we arrived. They put me at the centre of all the discussions to my discomfort. As a woman of African origin, it was quite difficult for me to have these discussions when my husband was present. It just felt disrespectful. He was the dad too. Interestingly there was a cultural shift in my favour. My husband was too westernised to care so I ignored the discomfort and let myself enjoy being at the centre of the deliberations. It began to feel comforting that I was being indulged in a sense as the “Mother of the child”. As soon as the signatures and payments were done, the Coop funeral services took over. They handled bringing our boy back home and all I really had to do was focus on giving him the best send-off. The day of the funeral service was a day of remembrance. We had all Fred’s nursery rhymes on cue. We had no hymns per se. What we sang were two of Fred’s favourite nursery rhymes. Row your boat and Twinkle little star. We all shared fond memories of him throughout the service. His lead consultant, Ward sister, School teacher and Former PA to the consultant gave lovely tributes to my boy. There was laughter and love in that chapel that day. It was filled to capacity with all his team. It was amazing that everyone could find the time to come and I will remain eternally grateful to everyone who attended physically. Many hearts were united with us from all over the world… those who could not attend in person. I appreciate all their prayers too. It was also a memorable experience for Mark who now is left without a brother. He kept asking if he could play in the hospital Activity Centre because he had missed not being in the hospital for that reason. It was lovely that everyone who attended made the day special for us as a family. We all felt fired up with strength for the event of the following day which was the day Fred was to be committed to Mother Earth. We did not really want to invite anyone because we were very conscious of what Fred meant to everyone. He was a special cheerful boy and we worried that it would be too much emotionally for some. On that sunny Friday morning, we arrived the Cemetery all set to go on that final walk with our boy. But guess what? We met all the nurses in his Local team right there waiting to walk with us. It was amazing. His consultant was in attendance, some  representatives from GOSH, even Mark’s class teacher attended. We also had friends, Family, Fred’s school Driver, people from his school….we were blown away. Now I am sitting here this sunny Sunday afternoon thinking about how blessed I have been because of Fred. He drew all these people into my life. All this love, comfort and support network now surround me. I am blessed because he was mine. I feel honoured to have been the one who bore him. We hope to learn more about Propionic Academia because Fred once walked this earth. His life may have been short, but it was long enough for him. This is a vote of thanks to everyone who has stepped into our life in the last 4 years. We love you all. Not forgetting all of you online who have supported us through this most difficult time. We appreciate you too. Thank you for reading If you enjoyed this, you will find more articles like this here Photo credit: Pixabay  

Death at my door D.A.M.D (Musings of a grieving parent) Part 1 – THE FUNERAL SERVICE