Originally posted on December 29th 2016
Thanks to our Health Visitor and fabulous Mary from SureStart going over and above to help and support our family, doing hours of research along with us to see what, if any support exists for families in our situation, we eventually struck gold a few weeks after Starfish was born. Mary found an amazing charitable organisation called Remap NI.
Remap is a national charity working through local groups of skilled volunteers to help disabled people achieve independence and a better quality of life.
They do this by designing and tailor making equipment for their individual needs. This helps them carry out essential daily tasks without having to ask for assistance, or take part in leisure, work or sports that would otherwise be impossible for them as the equipment they need is not commercially available.
Mary wasted no time in getting in contact with Remap NI and spoke to Victor, giving him a brief outline of our plight and the type of help we needed. Very quickly it was agreed that Remap NI were exactly the right people to help us and a date was set for Mary and Victor to visit us at home to discuss everything in more detail. The night before the meeting I went online to look into Remap NI a bit more. When I read some of their case studies and saw the custom made solutions they came up with I was beside myself with excitement. Even before I had spoken to Victor myself, I had a sense that this meeting would be life changing for Starfish and I.
On the day of the initial meeting we all sat in our living room and Victor asked me a bit about Starfish. I could tell by the questions he asked and the genuine warmth and enthusiasm he showed for my answers that he really cared and wanted to do his best to help us. I started to explain what we had experienced to date and why he had been called upon for support but he responded that I didn’t need to justify why I needed the help and that it was completely natural that I as a mother would want to be fully involved in every aspect of Starfish’s upbringing. I wanted to hug him on the spot! Someone else got it, another member for Team Starfish, who knew what could be possible now.
Victor asked me to talk him through our daily routine, what I did with Starfish, what his Dad did with him and what I’d like to be able to do with him that I couldn’t yet be involved in. As I went through everything Victor listened intently and made notes. He then went a stage further and started drawing sketches of potential solutions to the physical barriers and challenges we had. It was agreed that we definitely needed a changing station where I could get in close to Starfish while in my wheelchair and a means of lifting Starfish out of his cot safely and moving him over onto my knee and vice versa. I couldn’t believe it when Victor said these 2 things would be relatively easy to achieve. He even went on to discuss a potential pulley system style lift to facilitate floor play with Starfish if he and I were in the house alone.
That may seem like a blasé comment “if Starfish and I were in the house alone”. You’re thinking, all Mum’s can be at home alone with their babies, right? Wrong! Because of my physical limitations and the fact that the standard cot, etc that we had didn’t enable me to lift Starfish unaided safely and complete tasks like feed and change him, I had to have someone in the house with me at all times. In the early weeks, if Starfish was sleeping in the Moses basket and woke up hungry; there was physically no way I could safely lift him out of the basket and onto my knee to feed him completely by myself. It is extremely disabling, frustrating and humiliating at 34 years old to effectively need a baby sitter yourself so you can care for your own newborn. Family reassured me that as he grows, Starfish will be in tune with my physical limitations and will quickly adapt to this so we can work together to achieve things. I have no doubt whatsoever that will be true, however the feelings of guilt, frustration and sheer inadequacy in those early weeks were overwhelming.
After the initial meeting with Victor we had some follow up emails and a few more meetings for measurements etc. We decided that the best solutions were to adapt the cot we already had which my friend had gifted us and make a new changing station from scratch. I should point out again in case you missed it earlier, Remap NI is a charity made up entirely of skilled volunteers. They don’t charge for any equipment they make and rely solely on donations. The idea of getting custom made furniture for Starfish, not only that didn’t exist commercially but likely if it did, it would be so expensive that it would be completely out of our reach, just blew me away.
Victor showed me a YouTube video of a mum in the United States who was a wheelchair user with 2 babies, she had a customised cot for her youngest baby and he thought a similar solution might work for Starfish and I. This involved raising the cot up on extendable legs to make it level with my knees when I was in my chair. Next, rather than the side of the cot dropping down as it did already, they could make a hinged door at one side, big enough for me to open it, lift Starfish and slide him out onto my knee.
The changing station is a simple but perfect construction with a set of drawers down either side and a gap in the middle wide enough for my wheelchair to fit in so I can get in straight and close to the top to change Starfish’s nappy; rather than having to twist sideways as I did before. All of this was the handy work of Derek, one of Remap NI’s amazing volunteers with an engineering background.
The most amazing thing about Remap NI is that they are willing to remain in contact with us as a family and as Starfish goes and his and my needs change in the future, they are happy to step in and help us again. This is better than a winning lottery ticket for me as it means the possibilities are endless for us. Rather than me having to explain to Starfish that Mummy can’t take him out to the park or for a bike ride etc, who know what adventures we will be able to go on together thanks to Remap NI?
A couple of weeks before Christmas we took delivery of the finished pieces. I managed to hold it together while Mary, Victor and Derek were here and we even had time for a few photos. As soon as they left I was overcome with emotion. This really was a game changer for us. I’d be able to change Starfish and when he is ready to move to his bigger cot I can put him down to sleep and lift him out in the mornings without fear of injury for either of us. The simple, instinctual, natural things that every mother does for her baby were now possible for us too!
Right on cue and while I still had tears in my eyes, Starfish filled his nappy. He looked up at me with wide eyes, as if he was saying “come on Mum, let’s give this a test drive”. I laid him down on the new station and changed his nappy easily (although not as quickly as his Dad can do it!) When I was putting his trousers back on he rolled a little to one side to let me pull them up, then back and the same on the other side. When I said “All done” as is our usual nappy changing finale, he looked at me and beamed! As if he knew that something really big had just happened. We were both proud of ourselves and each other.
With every day that passes and the more we use the new equipment, we become more proficient and our confidence grows. I’m not quite at the place where I can spend a day at home alone with Starfish just yet but I really believe it’s not far away. I’m also full of excitement for the future and what we will achieve with Remap NI and the rest of Team Starfish at our back.
To learn more about Remap NI or if you would like to volunteer please visit www.remapni.org
If you’d like to make a donation you can do so here https://www.justgiving.com/remap/donate Please put a note on any donation that it is for Remap NI so that the funds are correctly sent to the Northern Ireland branch
Thank you, until next time. Happy New Year
Love Wheelie Momma and Starfish xxx