Having My Daughter Present at My Red Cell Exchange Brought us Closer Together.
- âSituations like the pandemic really does shape a momentâ
This was a mouthful to get out đđ However, for a very long time Iâve felt the need to share my experiences, thoughts and stories with you all. Part of me has always been cautious and apprehensive of what others may think as showing my vulnerability in my day to day life behind closed doors could be judged and frowned upon, another part of me has Anxiety and PTSD to the highest level ( which I hide very wellđ can you tell?) thatâs another topic Iâll touch on at a later date, but for nowâŚ
Thank You in advance for taking the time out to read my story, as you know pictures can tell a thousand stories, nevertheless I wanted to share my story behind these pictures and the article â The Life Changing Power of Exchanges & Transfusionsâ
1) I donât really share often and felt this space was the right space to do so. 2) Instagram posts has limits on how much you can actually write whilst postingđ¤ and this is one of main reasons Iâve decided to share my stories here. I very rarely get a chance to process things, itâs literally surviving every day, being a mother, cooking, cleaning sleeping etc and repeat if you know what I meanâŚ
- As itâs Black History Monthđ¤âđžI wanted to take the time out to appreciate my Young Queen and to share this moment, đ§đžââď¸Meet NyâAsia Coco-Raeđ§đžââď¸ -If you know me well, Iâm very private and very protective of what and whom i allow to come in to contact with. my daughter, having the right energies and positive influences are key values I affirm to and what is reflected from those within, whom we are lucky to have in our lives.
I honestly donât know where to begin⌠as a Mother who has.
- Regular Exchanges đ
- Works 24/7đ
- Anxiety & PTSD đ
- Constant Pain đ
- Legally blind Retinopathyđ
last but not least the responsibilities and sacrifices that comes with being a Parent despite the cards Sickle Cell deals me every dayâŚthe list is endless! Somehow, I manage to manage, to pack all these enemies of progress in a bag or just get on with it. Usually, when Iâm booked in for my Exchange transfusions, my grandmother would be the person to step in with child care and support, or iâd schedule my appointment whilst NyâAsia is at school. On this occasion, my grandmother wasnât in the country so childcare for an option was out the window, itâs the middle of the Pandemic, school was out of action. Iâm listed as vulnerable who should be shielding, the measures & procedures put in place for attending appointments for receiving exchanges were very limited. I didnât fall in to a criteria with regards to what support was offered for Single parents who had no child care, hospitals were very strict about who was able to accompany you etc. All of these concerns heightened my anxiety, I knew the stresses would take a toll On me mentally and physically, So I it took upon myself to speak to the Aphorises Team, to be open and honest about my situation, I was very clear I donât have child care, my child would usually be in school, how can you support me ?
The Team were very understanding and managed to accommodate an option for NyâAsia to use the day room situated on the ward whilst Iâm having my exchange, or to accommodate a side room which is more private for families.
It then suddenly dawned on me that NyâAsia has never ever seen me have my exchangesâŚhow would she feel ? Is she comfortable with seeing mummy having the exchanges all these worries went through my mind. Furthermore sheâs only seen me in hospital once her whole life! Iâve tried to shield her from Seeing me in pain or having to see me struggle with the challenges as I donât want to be a burden on my child, I want her to be a âNormalâ 10 year old who still has that innocence and carefree spirit without worrying that mum is always in pain!
NyâAsia opted for the side room then asked to come in to the room after, as she was scared of seeing needles being inserted in me ( totally understandable) even so, NyâAsia really intrigued to find out as she doesnât like to miss anything!! NyâAsia was shown to the side room, whilst The A Team set me up and got me ready for my exchange, shortly afterwards NyâAsia came in the room and had a worried look on her face. She asked me â Mummy are you in pain ? Are they hurting you? ( she asked this whilst looking at the staff just in case she needed to hold anyone accountable or needed to have words đ)
This is the part Myself & The A Team thatâs what I like to call them ( Apherisis Team) explained the needle procedure( in simpler terms of course) and what each needles job is to do- The Big needle is the reverse which is used to drain. and take out all the âbad sickle bloodâ and the return is to insert â healthy new bloodâ and then went on to explain that the machine used is called a Blood Cell Separator which can separate blood into its various parts. The machine separates and removes the red cell portion of the blood and gives back replacement red cells.
This simple explanation helped NyâAsia to understand the process which reassured her that her Mumma was in good hands and that she trusted the Nurses and felt like they are helping to make her Mumma better.
â Thank You Universeâ
Situations like this really shapes a moment! Thanks universeđ as I believe this situation sealed a moment for me and NyâAsia, I learnt that she doesnât like to see her Mumma in pain, however seeing every 5 weeks that I need regular exchanges to give me a better quality of life has helped her to understand the importance of why regular blood transfusions are needed and why Iâm tired all the time. She understands when Iâm too tired to cook and will help out by planning to cook a meal once a week, (an amazing cook btwđđ) or she will run me a bubble bath to help me relax. Itâs the small things Iâve noticed which will prompt NyâAsia to ask questions and for me to be open to discuss the challenges and the health care plan that occurs with Sickle Cell.
â The only âLâsâ Iâve taken so far are LIFE LESSONSâ
Donât be afraid to have difficult conversations that impact your Health, you could impact the support or lack of understanding when we internalise the challenges as opposed to be being open to what we see or deem as vulnerable or not wanting to be a burden to those we love, those we love and love back will love you the right way without limitations.
â Sickle Cell patients rely on regular blood transfusions/ exchanges to help live and sustain a better quality of lifeâ
On a more important note Black History Month highlights the importance of Blood Donation with the key messaging to encourage donors specially from the African & Caribbean community. Itâs important to understand that in order to live the best quality of life and to sustain this quality of life, ethnically matched blood is needed from those of the black community.
If you would like to read up and find out more information on my blood recipient journey.
âThe Life Changing Power of Exchanges & Transfusions â and how you can register to become a blood donor
âźď¸Click the Link above âźď¸
Thank you, I hope you enjoyed my first read #UnsickleMyCellsđ¤đ§đžââď¸
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