“Lets run mommy!” I am a mother (26) and want to share this life changing journey which my son and I experienced so far. The last five years of my son, Justin Joshua`s life has been not only difficult, emotional and heartbreaking but miraculous too. Justin was born on 3 March 2009 at 29 weeks. He weighed a fragile 1.5kg`s. He was hospitalised and incubatored for a month, he was on an oxygen machine for a week before being able to breathe on his own. At 22 days old he was rushed to the intensive care unit (i.c.u) due to milk on his lungs. His heart stopped beating 4 times on the way to the i.c.u department. I helplessly followed the nurses into i.c.u, I prayed so hard that the Lord would bless my little angel and keep him safe. In i.c.u he was put back on an oxygen machine and he had a thick pipe down his throat which was bandaged around his mouth as he tried pulling it out his mouth, his fingers were taped to his hands to prevent him pulling any wires and pipes that surrounded him. He had 2 drips inserted on either side of his head and was fed through a tube through his throat. He made a rapid recovery in 3 days, thereafter we return-ed to the nursery where he spent 3 more long and emotionally draining days in hospital before being released to go home. Justin weighed 1.84kgs when we arrived home. Even though he was so small and fragile, he was very alert and he got stronger by the day. Despite the fact that he was premature (prem) and suffered with colic, which resulted in long sleepless nights, he reached all his expected milestones. At 6 months old, he was already stable in his neck and he was able to sit with support, at 8 months old I started to notice that Justin began to go squint in his left eye. I took him to an eye specialist; they could not identify the cause of the problem but mentioned that an operation at a later stage would be able to fix it. Justin started regressing, he became very weak at the neck and struggled to hold his head upright. He could no longer sit with support and lost all will to try and progress. I immediately consulted a paediatrician, who advised me not to be concerned as he was a prem baby and delayed milestones were to be expected. At 1 year old, Justin still showed no attempts to try and roll, crawl or sit. I took him to local family doctor who advice me to have a CTI scan. I took him to Frere where a CTI scan was done, the scan showed no bleeding or pressure or any sign of fluid on the brain. I then consulted a neurosurgeon who suggested that I take Justin for therapy sessions to help motivate and encourage him to sit and progress. As Justin got older, he begun to stiffen and his left hand was permanently closed, he could not grasp objects and became weaker. He tends to suffer from spastic ness in his legs and feet. He could not interact with children of his age yet he lovedttention, laughing and smiling. At 18 months, Justin was diagnosed with Cerebral palsy, but the specified type was unknown. A week after this diagnoses, he attended therapy 3 times a week, hydrotherapy, physiotherapy and occupational, after a month, his sessions were increased to 5 times a week, with the costs of the therapy escalating regularly and as a single mother at the time with one income, it was financially straining to offer him a normal lifestyle and to provide the best I could for him. He has since been able to open his hands and grasp objects; he has attempted rolling on numerous occasions. He is still unable to sit, crawl or walk. He is getting bigger and heavier so its becoming more difficult to carry him around, he is too tall for his car seat and too big for a pram so he uses a wheel-chair. He turned 5 on 3 March. He is still soul cannot drink from his own bottle but he attempts to feed himself. But despite all his setbacks he is be-coming stronger everyday and is such a happy boy. Even though he cannot walk or jump, he loves standing on both his feet and discovering new sensations. Recently it has been discovered that the known condition of cerebral palsy is spastic diplegic, also commonly known as Little`s Disease. This condition is caused at birth in the majority of prem babies. At birth, Justins brain did not get enough oxygen and therefore damaged some of the nerves on his brain, these nerves cannot be repaired in anyway, not even by means of an operation. 99% of CP children develop normally up to a certain age then regress. This form of cerebral palsy affects the lower part of your body so as he gets older, he will find it more difficult to become mobile. He has a custom made wheelchair which enables him to sit upright. He also has to wear AFO`s (braces) every day on his feet as his feet turn inwards when standing and his muscle behind his ankle is short so he tends to stand on tippy toes. With the latest discoveries, it has been confirmed that ustin has a gross motor of a 6 month old but intel-lectually he is of a 21 month old and is socially at an 18 month old level. Justin had his first operation on 21 July 2011, an operation on both his eyes to rectify his squint caused by the brain damage. The outcome was positive, he will not need glasses or a second operation either. Justin also had a second operation on 6 December 2013 to remove some badly damaged teeth due to still being on a baby bottle, and all the meds he has been on. I cannot imagine my life without my son, he has taught me to appreciate the small things in life and that every minute of everyday truly counts and those we need to make the most of it. All that I have been through has now made me a stronger and more appreciative and loving person. I am a dedicated mother. The Lord has given me the strength to get through the last five years and I know he will continue to give me strength and patience to get through the next chapter of our lives. I hope that my journey thus so far will be an inspiration to parents in their own difficult situations and to never give up hope or to stop trying and know that God watches over all of us, we are never alone in anything. Justin started at a normal crèche in January 2013. He is accompanied by a fulltime caregiver; he uses his wheelchair at school but also plays on the swings like the other children. Justin, since he started at crèche, has been able to count from 1 - 20, he knows the entire alphabet, he knows a few nursery rhymes, he knows some shapes and colours, days of the week, he knows the seasons, namely winter and summer. He loves music and is able to sing a few songs. Justin has recently tried to sit, he isnt able to get himself from lying down to sit but if you put him in a sitting position on the floor then he is able to balance him. Justin has also started rolling, from one side to the other, he is determined to get independent and I do believe that Justin will attend a normal school and he will reach all his milestones. He has become so strong and often surprises even me in the way he talks or does things. He often attempts to feed himself with his spoon but prefers eating with his fingers. I would not change him for anything or anyone in this world. The Lord has truly blessed me in so many ways with Justin. Thankfully we have specialised equipment for him, such as a standing frame to help strengthen his body. Justin inspired me so much that I opened a care centre in South Africa when we will still living there. I named the centre after him and opened a day after his birthday last year. The Justin Selby care centre is an edutherapy day-care facility for children with mental and physical disabilities. The Centre also offers a permanent residence for special needs children. The Centre is run as a non-profit organisation and relies on the generosity of the community for donations to keep it running. Please visit The Justin Selby Care Centre on Facebook or justinsel-bycare.webs/ for more information. Id like to reach out families who have special needs children as I plan to create a support group and have plans to open a centre for all special needs children in Walvis Bay. Should anyone like to contact me for advice, support etc, and please feel free to contact me on kimflanagan24-@gmail or 081 479 0725. Thanks to all the support from my family and friends, I know that Justin will one day be able to enjoy the sand between his toes, the cold splashes of water between his fingers, discover the grass and leaves, and all the other simple things in life that we so often take for granted, of all these things that I could wish for my little miracle boy, I have high hopes and know in my heart that one day he will stand by my side and hold my hand and whisper in my ear..............lets RUN mommy!
Posted on: Tue, 22 Jul 2014 08:28:52 +0000
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