#TeamAngelWolf Race Brief from Dubai International Triathlon 07.11.14 People have asked why we would want to start all this. Why not? I think people have many of their own conceptions and opinions of what life is like for us, as a family. Others it may not even cross their mind. But that is fine, why should anyone know, as it doesnt affect their life, this is our problem ... but it is not even a problem, it is just our life - that has not really gone according to the original plan. The plan, as with many other fitness couples when they meet and fall in love, is to get married, have two beautiful children and live that normal adventurous, free life together, sharing our joy and passions. Well, the plan we organised, as with many great plans, didnt quite go to plan (lots of plans in one sentence - life lesson, ditch plans!). Yes, we got married. Yes, we had two beautiful children - Rio (our Angel), then Tia (our Little Wolf) ... but life definitely was not normal - to the point, it changed THE life plan from then on! Rio has a rare chromosome condition called 1q44 deletion denovo syndrome meaning, on chromosome 1, arm q, part of area 44 is deleted, denovo because it is not inherited, just one of those freak of nature events, but very rare and unique. The deletion is a tiny microdeletion, but it is enough to affect his whole life and the all of our lives. He has seizures, he wears nappies (he is 11), he is non verbal, he has gross and fine motor issues, he has severe learning disabilities, he has sensory integration dysfunction, etc, etc .... we know that Rio will never live an independent life, he will always need looking after. We have no idea what his life span will be, as the condition is so rare, there are not that many children older than him diagnosed with the condition, to know what is ahead. It is like looking after a baby whom has the strength of 16 year old, but the heart of an angel. He is truly a happy, beautiful boy. He is a child that lives in the here and now - he holds no resentment from yesterday, no fears for tomorrow ... we have so much to learn from him. Life with Rio affects all our lives, good and hard. It is very tough on Tia, her life has been restricted having a brother with special needs, she has had to grow up, learning responsibility, independence quicker (which is a constant guilt for us as parents), she often looses limelight, which we are very conscious of. As a dad, as a man, it can be traumatising, as you had all those plans to go out playing rugby with your son, do all those normal father son things, then one day you realise that those normal things will never happen. And worst of all, being a man, you have that genetic need to fix stuff, and this is a situation that you cannot fix! As a mum, there are so many mixed emotions - to many to explain here. It is draining - you are a full time 24 hour carer for life ... not just to 18, but until one of you passes away - which is another fear area you avoid thinking about - what happens if I die first, what will happen to him then?. Someone once described it well, you develop the strength of a draft horse whilst holding onto the delicacy of a daffodil. As a family it is hard when we go out, people stare, people dont understand. It can hurt and depending on our mood that day, it defines our reactions ... but we know, that it is due to a lack of understanding that causes this, not usually bad intentions. Saying all this Rio has enriched all our lives, in ways that others could never comprehend. Tia sums it up nicely, I think everyone should have a brother or sister with special needs, they are so much kinder and more fun than normal brother and sisters! He is very special, and not just in a special needs sort of way. We have so much to be grateful to him for, he really has directed our destiny in life. So life hadnt gone to plan ... it had taken another turn. We have choices - to crumble or to make a new alternative route - our own journey of excitement, a different way of sharing our joys & passions and re educate people to create awareness and understanding. This is one of the reasons we started reaching you foundation - to create awareness and integration, which proved successful. We also created many fitness activities that promoted health & fitness, integrating people with special needs as well. This was all marvellous and achieved one of our goals. But what about us as a family, what about our own personal bonding and coping strategies? Holidays and adventures have been restricted with Rio, we so needed to do something that united us all. This is where #TeamAngelWolf came from. The idea that we could all together or individually (e.g all 4 of us/Tia & Rio/mum & Rio/dad & Rio) do challenges in our own way. Nicks thing has always been triathlon. He had always dreamt of doing a triathlon with his children one day. Realistically, Rio will never be able to do a triathlon independently, but that does not mean that he could not enjoy the experience. One of our goals is to allow Rio to enjoy every experience (in some way) that every other person can enjoy - his disabilities should not be an excuse! We have taken him skiing, ice skating, horse riding, indoor skydiving, swam with dolphins, etc - he may not have done these experiences independently or as other people may experience them ... but he has experienced them. We have strived to give him opportunities! Also, some people may not be aware, but Nick had a big cancer scare in April of this year, 2014, where they discovered a 6cm tumour in his colon, that he had to have surgery for. That was another life changing moment - one of many that we have experienced as a family unit. Nick had done Kona Ironman Triathlon back in 2002, when we were pregnant with Rio, he had always intended to do another one, but time/opportunity never came about. Immediately after the surgery he decided to do Barcelona Ironman in October 2014 - to just get on and do it, as this experience had proven that life is far too short. My mum had first taught us that in the year 1999, she was 49, a fit, healthy, beautiful lady, then one day she got diagnosed with pancreatic cancer and died 2 weeks later - we should have learnt more from that! Unfortunately, again life scenarios, work and stuff got in the way and it wasnt possible to make it to the Barcelona event. This caused frustration and a rethink of everything. Knowing that more time with the family was needed, plus personal achievement was craved for - so what other, logical (?) way to fulfil this than to do a Half Ironman with Rio! We then discussed all the other adventures that we would all like to do, including Rio. Dubai International Triathlon and the opportunity that Adventure HQ gave us, allowed us to start this adventure, to make it real! This adventure will hopefully bring us a new journey as a family, spread awareness of children with special needs, and, promote health and fitness! Pre race: Before the event, Nick was physically prepared to cover a half ironman distance. The thing is, the specialised equipment arrived in Dubai only a couple weeks before the event (due to the sporadic, impulsive decision of Nick, only a few weeks before the event, deciding that #TeamAngelWolf should start NOW and thankfully Adventure HQ coming to our rescue!). So this only gave a week and a half of training on the new equipment ... with Rio! Training went well, thankfully. Rio reacted really well!! With Rio, he loves motion, if you keep going, he is happy and at peace, if you stop, he is not impressed. As Nick discovered in a training session in the sea. He swan into a school of jellyfish, got stung, stopped in shock, Rio jumps over board!! Lesson learnt - do not stop! With the bike and running training, Rio loved the equipment, to the point at the end of a training session, he would refuse to get out, and when forced out, he was angry (Rio never gets angry!). Rio hates hats and helmet, but he tolerates helmets for activities such as cycling/horse riding, but a day after his first cycling training session, we saw Rio find his bike helmet, he put it on his head (which is unheard of by choice) and he signed bike (Rio can sometimes use basic sign words instead of verbal words)! All very positive signs for a good race. So we new Nick had the distance training, the equipment was here, Rio liked what he had experienced in training - all again positive! Concerns was, that Nick had not covered the distance with the new equipment and we had no idea how Rio would react to the length of time he would have to be in the equipment - it could be anything from 6.5-8 hours - that is a lot to ask of any child, never mind a child with special needs! Race day: We got Rio and Tia up at 4am in prep to get a good porridge breakfast and hopefully to give Rio the opportunity to go to the toilet (my biggest concern is toileting issue along the race, as Rio is still in nappies, but we still wanted Rio comfortable). Nick left at 4.30am for preparation. I left with the children at 5am so there would be less hanging around for Rio, to cause him less stress. I remember looking at Rio in the car thinking, Oh my angel, I have no idea if you have any clue what is ahead of you today. I wonder if you do know from all those times Ive tried explaining it to you? I just want you to enjoy this! This is for you, I had a need to apologise - just in case! At the race, the atmosphere was incredible - you could feed off it. It seem to occupy and distract both children, until the race started which I was grateful for. It was very sweet, so many people greeted Rio with a High 5, wishing Nick & Rio good luck! Time passed quickly - We put Rio in the kayak and off they went ... he seemed very happy - a good start! We always knew where they were, as we could see the kayak and Rios little head in the distance, (along with Sam on the SUP board). I remember thinking that he will love seeing all the splashes in the water from the 100s of other people swimming!! I kept checking - yes, I can still see Rios head, he hasnt jumped overboard then, phew! Tia was having far too much fun climbing the rocks finding crabs! It was exhilarating watching all the swimmers come out and all the applauds. Such an amazing atmosphere. Tia and I waited for Nick and Rio in the transition area. We saw them running (Nick was giving Rio a piggy back) from the sea to the transition), everyone was cheering them on - immense pride of my boys. I was amazed that Rio lasted 45 mins in a boat and didnt jump out - as he loves water and swimming! Tia was so happy to see her brother and kept signing to him and asking if he was happy - very sweet. I changed Rios nappy, put suncream on him, got him ready in dry clothes for the bike section and gave him water; whilst Nick got himself and the bike ready, and off they went. The bike leg went incredibly well, it was windy, little hills and hot, but Rio seemed to have loved it and coped for the whole 3:48 hrs - which was a miracle to me - not many children would keep still in a seat for that long, especially a child with special needs. Again, Tia and I were waiting for Rio and Nick in transition. Tia checked on Rio, I cleaned him up, changed his nappy (I think the nappy changing shocked people, as they knew Rio was 11 years old - but this is our life, I am not embarrassed/ashamed by it, people need to be aware - that was the whole point), I re-did his suncream, tried to get more fluids down him. I was concerned, as I had heard that he was refusing any food, so I tried to get some food in him - he wasnt that interested, but I guess the sensory experience was feeding him? Off they went for the last component for the challenge - the run. It was so, so touching to hear and see so many people cheer on Rio and Nick. Some people even seemed to be crying - its odd, when you are caught up in the logistics and rushed routine of the moment, you do not get to see or feel the emotional perspective of what is happening ... until later, when you have time to think. Nick later told me that the support along the route was outstanding, he was so touched - be it from other racers, spectators, people in cars! The most frustrating part from my side was waiting during the bike and run - we had two lots of 2-4 hrs waiting, not being able to see Rio and know if he was ok, having no idea where he was, or if he needed me! I was grateful, as Sam (who was shadowing Nick), was in constant phone contact with Sally (his wife), so I got updates that way! My typical motherly thoughts during the race - ohh this is the most break Ive had in ages, what if he needs a poo/has dirty nappy - will they notice?, it is so hot, has he over heated or what if he gets heat stroke and he has no way of telling anyone?, what if he has had a seizure?, what if he needs me and no ones understands him?, what if he isnt happy and has had enough?, I feel guilty as Tia must be so bored and is sacrificing again, etc, etc.. None of the fears were real though (as typical of fears in life) as Rio was very happy, he never had a dirty nappy, he had cold water constantly poured over him and in him. And Tia ... well, when she wasnt in transition with me helping, she spent hours (and I mean hours) in the kids area on the bouncy castle slide thing - she was more than happy. I was very, very proud of my Little Wolf (Tia), she is an amazing young lady! I gather the run was long and very hot - luckily Sam was shadowing on a bike, so he kept returning to base to re stock on bottles of cold water & electrolytes for the team! Then came to the time we heard that they were close to the finish line. We were kindly allowed to be right at the finish line to wait for them to cross the line. Tia was given the medals to give to them! I knew Nick must have been in extreme discomfort and exhaustion, but his face was full of renergised honour and pride as he came to that line - his goal was achieved! So many cheered them on, it was emotional! I had a very tired but very happy family post race - Very proud of my boys and Tia - it was a long, tiring, hot day for us all in so many different ways, but so much was achieved. The race was definitely another one of those thought provoking, life changing moments, that makes you put life back into perspective again. We all need those moments. We are truly overwhelmed by how many people Rio has touched by this race ... I think others now see that special something in Rio that we always see! There is definitely more to come - more triathlons for Nick and Rio, Tia will take Rio around The Colour Run and I would like to do running races with Rio in his jogging chair. There are endless challenges that we can do or can create ... watch this space. We are very grateful to so many people! Adventure HQ for making this even possible. To Sam Whittam for being a superstar, shadowing and helping Nick throughout it all. To Sally Whittam for a sacrificed early start, all her time in creating the amazing photos & video (and keeping Delphine entertained during this long waits and donating her husband for the event). To Marcus Smith from Inner Fight, for keeping Nick going on the run. To raceME team for letting #TeamAngelWolf enter the race and cooperating so wonderfully - especially to Crissey Harris for all her help and support! To Pearl 102FM for all the media support. Also we are truly grateful for all the support close and afar - from all the lovely comments on Facebook and all the marvellous love and support given on the day by people cheering on. THANK YOU xxx #TeamAngelWolf
Posted on: Wed, 12 Nov 2014 15:40:58 +0000
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