Parents of special needs children are continually scrutinized and judged by others. Those who have not been affected by a child with a rare disease have no idea the difficulties our children and we as parents face on a constant basis.
I remember when Ian was younger, the words of judgement I would hear from those who did not understand my son’s inability to eat was at times baffling. Of course, the countless occupational and feeding therapists understood his need to develop volitional feedings – but friends, family and mostly strangers – had their own inaccurate opinions. One parent said….”oh, leave him with me and I’ll fatten him up”. A family member once said, “so what if he has a high palate and an overbite, he’s still eating – you just have to feed him more.” And even strangers would give me the “look” at the park – wondering why my child was 15-20 pounds lighter than their child of the same age.
Fortunately, Ian’s pediatrician, gastroenterologist, and endocrinologist were understanding of his inability to have significant growth. Although it is a rare disease and there was much to be understood – I was fortunate in that the well-reknowned physicians were willing to work with me, cooperate and work as a team to give Ian the best care we knew how to give him. Unfortunately, many families of RSS/SGA children do not have the luxury of finding physicians who are so dedicated and/or open to learning more about Russell-Silver Syndrome. There is plenty of information out there to learn from – but, much of it is inaccurate. And, like any disease – each child has their own set of circumstances and biological/genetic make-up that makes their issues different from the rest. Add “rare” to their disease – and things get even more complicated.
When visiting the convention and/or during my advocacy work at Capital Hill – I learned a lot from parents about how they managed to deal with outsiders on the topic of their child’s rare disease. Many of them, myself included – realized that unless you have “experienced” this or any other rare disease – other people’s judgements and conjecture are purely inaccurate and worthless. It’s a pity really. Many of us feel the need to defend ourselves to individuals who make harsh and rash statements. “of course I feed my child”….or, “but he needs growth hormone to grow”….or, “well, his gi doc sais he needed the mickey-button – not me….he IS the physician”. In the beginning – I found people’s harsh statements very hurtful. Over time, I have learned to ignore these individuals – well, to the best of my ability.
Someone recently felt the need to tell me I used my children’s illness to gain attention for myself – and then they had the nerve to tell me I wasn’t a true Christian. Yes. Believe it or not – this person was incredibly brash and hurtful. What I found most interesting – is that this individual was uanble to admit to their identity but hid behind a fake e-mail address. They obviously “think they” know me – but, were unwilling to tell me who they were. I also found it amusing that they found the time to conjecture and perceive a situation of which they do not have all of the facts. And….they truly do not know me.
See, what I try to encourage other parents – as an example of the above – is that those who are most fearful of situations for which they have no understanding (such as a rare disease), they belittle others due to their own inadequacies. It’s easy to tell someone else they are doing something wrong – then to focus on themselves and their own issues. And, what I pity the most – is when an individual tries to tell others how to live their life as a Christian. These are the individuals lashing out and making harsh statements about others…certainly not Christian like. Christian’s do not judge and therefore should not speculate or criticize another person’s actions or conjecture about a situation that is unbeknownst to them. My child is unable to eat for a REASON – and “you” may not understand that reason – but, that doesn’t mean is isn’t real. And honestly, if my blogs touch just “one” person in life to make them feel better, then I have done my job.
I had a parent once call me and tell me she was getting harsh judgement from someone at her church about not sending her child to school and keeping her child home for homeschooling. What that person from church did not understand – is that our children are so unique – in that they are very susceptible to illness. It’s hard to explain that it has nothing to do with a weakened immune system – but, that their delicate systems and bodies can not fight the infection as well as others. NO – it is not a weakened system – it is a culmination of many factors that end up putting our sick child in the hospital. Again, without understanding the full scope of a child with a rare disease – conjecture does nothing but harm the individual who is making unfair statements.
How? Each of us (families) have a bond and understanding between us – that we are not alone. I encourage families with special needs and/or children with chronic and rare disease to reach out to each other. Find those support groups. Check out Children’s Rare Disease Network, The MAGIC Foundation, Medpedia and others for support, comfort, and information about your child’s disease. And, do not feel afraid to educate others. Do not defend yourself, but open your arms and share your knowledge with a loving heart.
My wish for all of you…..Happy New Year and God Bless.