Since beginning our life in Amsterdam, I have had many thoughts that have belittled our situation, have been demoralizing, and have been bitter. I am not proud of these thoughts (especially the bitter ones); but they happen, and it's how I proceed that matters. Now, I am speaking for myself and everyone may not agree with my sentiments (which is fine), but if I'm having some of these thoughts then I am sure someone else is as well.
When I first started hearing the term "special needs" my heart sank. I didn't really know what that would mean for Rae and for us. I knew that there were going to be some sacrifices we would all have to make and adjustments in our expectations/dreams. I was advised to seek out support groups because they would understand everything we are feeling or experiencing. They will also be our best cheerleaders, supporters, and guides through the quagmire of paperwork (doctors, insurance, programs, etc..). One would think there would be some comfort in all this, but my mind wondered about how they would perceive Rae's condition in comparison their own child's. Initially, she was ONLY Hypotonic and, at worst, would just have a few developmental delays. How was that special needs? How special was my seemingly short term issue in comparison to a child with Down Syndrome, Cerebral Palsy, or Angleman Syndrome? Wouldn't the other parents think, "Geez...I wish Hypotonia was our only concern." I was convincing myself that Rae's needs weren't that special and were nothing in comparison to other children's so what gives me the right to be so upset (she's my daughter that's what).
That's where the demoralization comes into play. This thought made me feel hopeless and alone. I wasn't allowing myself to feel the enormity of our situation. This nagging, critical voice kept repeating: "It's not that bad. Why are you so depressed? Other parents would be thankful if this was all they had to cope with? You should be grateful it isn't worse. Stop whining!" This dialogue is what I believed other parents would think if I shared my heartache with them. Essentially, I was judging other families (that I've never met) before they could judge me and that wasn't fair to them. I have meet some wonderful parents that have been nothing but supportive, helpful, encouraging, understanding and, if appropriate, angry with/for me. They aren't judging Rae's situation as greater or less than their own and if they are they never give any indication that they feel that way. I was wrong in thinking that would be the case. While it is good to keep in mind that others may be in a worse situation than my own, I've learned you can't deny that your situation is difficult to cope with because it is YOUR situation. So, if this thought has crept its way into your mind banish it at once. It will only hinder you from creating relationships with people that will understand your life better than others. But I have a confession...
Since last September, we have learned that Rae doesn't just have Hypotonia. She also has Scoliosis, Epilepsy, and was more recently diagnosed as having Congenital Myopathy (which type we aren't sure...yet). I have a sneaking suspicion that this will not be the last of her diagnoses, but only time will tell. Her progress hasn't gone as quickly as we would have hoped and her "milestones" are more like "inchstones." As a result, I will honestly admit, that the most shameful, hypocritical thought I've had has been just what I feared people would think of me when we first landed in Amsterdam. I, at times, feel slightly irritated by the distressing cries of another parent when their 1 year old isn't walking (according to Dr. Sears an acceptable range is 12 - 16 months). Upon further inquiry, the child is sitting independently, rolling over, getting into crawling position, and gives no indication of any other complications. There is no official diagnosis from a doctor only a parents suspicion combined with information from the internet (medical concerns are a dangerous Google query). It was a horrible thought and I'm going to own that I thought it... I mentally screamed, "Your child is probably fine other than a slight delay. Boy, I wish that were our only concern. Stop Googling because it will only make you more paranoid and you don't need to request invasive procedures (muscle biopsy) right out of the gate."
My mind raced ahead of my censoring ability and before I realized it, the thought was there. It was a fleeting thought that has no merit because no matter the extent of a child's developmental delay that child is still someone's baby. Someone's heartache. Someone's joy. Just as Rae is ours. My occasional bitterness is not supportive. It's alienating. It has no place in this world because we're all just trying to make it to the next "inchstone" and we need each other. I'm sure from time to time these fugacious thoughts will pass through my mind, but as I stated before it's not the thought that matters, it's how I proceed after the thought. I choose to be supportive, encouraging, and helpful.
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