I know on various levels I have visited this topic but after reading some comments on one of the Down syndrome support boards that I frequent and also a personal experience that I have recently had, I wanted to share a bit more with the world on this topic.
There are many places which parents start at, deal with or get to during a diagnosis and journey with Ds. There is the initial grieving stage, (commonly known as grieving the loss of a typical child), accepting or having peace with the diagnosis and daily dealing with Ds and the future - which is always unknown.
From my perspective:
Being a parent guide or support person for families who receive diagnosis or anyone at all who might need support with Down syndrome and even the educational aspect for my role in being an advocate perhaps puts me in the position I am in with where I am with how Ds affects us (as opposed to effects us because it really is about influence rather then cause or result which equals effect).
I chose Ds if that is what I can/should say. I knew full well my son was going to be born with Ds via amniocentesis, and quite frankly we weren't devastated but I used the word shocked because we really were shocked! But never sad, or mad or angry with Ds. I think when I cried at first, (now looking back) it was because I knew both my own mother and mother in law would want us to terminate, and we already knew in our hearts and minds that we would never do so.
In fact, and many people might really not believe this, but recently with my becoming pregnant my husband and I actually would welcome having another child with Ds. Ds is so much a part of our lives as much as it isn't a part - if that makes any sense. Most often I read that people feel that for themselves a way of determining if they have come to terms with Ds is when they don't think about Ds any longer when they look at their child. But for us, it's quite the opposite. We think about Ds all the time because we want to advocate and we want to teach and educate... so Ds is always in the front and foremost parts of our minds. I don't think I will ever look at Hunter and not think about Ds, but for us that thought was and is still never negative. I don't look at my son and think - I wish he didn't have Down syndrome. Instead, I look at him and think, I wonder what great things he will accomplish, will I be the best teacher I can be for him? Can I continue to keep my expectations high so that he can achieve higher? I know that many mom's always think, it's going to be rough down the road when people may verbally or emotionally mistreat their child, prejudge their child or whatever else that we all read or think of on our own or by ourselves, but the truth of the matter is, I personally recall many hurtful things that were said to me as a child and I didn't have an extra chromosome. So, in hindsight I think it matters not what you are made of, how your chromosomes are aligned or what other instrument of malice people wish to use against one another - kids will just be kids, people will be people and the world is full of others who have narrow minds and are prejudiced, racist or disrespectful for one reason or another. Ds is no different in that specific respect. Name calling, disrespecting, not getting jobs etc. These all happen to others with or without Ds, so I think the while the reasons behind my son's potential hurts from others might come sparked additionally from his extra chromosome, without it, he'd just be hurt from other inflictions that probably have nothing to do with Down syndrome.
Maybe I am not making much sense but I just wanted to say - as I think many often do, loving him for us is no different and because of that his Ds matters not to me in that way.
Now, on the flip side to my opinion above, I wanted to also note that the opposite is still true too. And this is probably more often the reality that comes associated with perspectives of a parent to a child who has Down syndrome or at least more often in the beginning. My husband has a male co-worker who has a child who happens to have Ds also. My hubby noticed this in one of the man's family photos that My husband happened to ask him one day if his son had Ds. The co-worker was immediately angered and extremely defensive asking "why did he want to know?" It wasn't until my husband said that our son also has Ds that the co-worker relaxed a bit and said yes, but was still hesitant to speak about it. That was over a year ago. Some time down the road after my husband had noticed the co-workers initial defensiveness, he mentioned to him that I run several Down syndrome support groups and also counsel families with new/existing diagnoses if he or his wife ever wanted to chat or come to our child/parent play group. Sadly (but understandably) he adamantly refused.
It goes to show that there are many people out there who are still very angry with Ds as this man clearly was and still is - even after 5 years... his son was 5 years old at the time my husband mentioned anything to the co-worker. I have no problem with people being unable to accept their child's diagnosis but what I can't accept is the result of it. To this day, since this particular man doesn't accept his son's Down syndrome, he will show unconditional and wonderful love toward his other child who doesn't have Ds and will completely ignore the son who has Ds. It breaks our hearts. Not only does the man still become very angered and defensive (which we understand may be his way of coping with his harsh reality and world) but he constantly only speaks of/about his typical son and as a result his son with Ds is often left all alone with no attention or praise. My husband's boss even spoke to the man about it on several occasions, noticing it for himself too. The boss said to me just today, "How could he abandon and ignore his son just because he has Ds?" The boss further said, "I told him off because I didn't like seeing him treat his son like that, no child deserves that...." This from a man (the boss) who knows nothing about Ds, except through us and our son - who he just loves to bits. While it upsets me, (and we have offered our ears and support on many occasions) I understand that the co-worker just doesn't know how to cope. But, regardless - his son needs him and he isn't there emotionally or physically. Unfortunately I don't know much about the mom, but I am hoping for this child's sake, her emotions regarding Down syndrome is nothing like the fathers.
This is the reality of emotions for some parents who have a child with Ds. Like it or not. And while it is completely "normal" to have or harbour feelings of confusion or acceptance - even anger and resentment I don't know where it fits in for me to be compassionate toward this man for how he "treats" his young five year old son with Down syndrome as a result. I feel for the father and I can comprehend his emotions but I can not accept his actions. I can feel bad for the father, but I feel worse, fearful, sad and hurt for the child. And that all equals anger in the end for me toward the father. We can all be compassionate to an extent in understanding but when those emotions lead into actions or lack of actions toward an innocent child, I have no place or room in my heart for that.
It brings me to my next question, "How long is enough when it comes to grieving and being angry about having a child with a diagnosis that you don't want to accept?" When is it too long? When is it no longer okay to have those feelings which lead to or result in emotional abuse? We have all heard and understood stories of a parent who can't quite bond with their child for whatever initial reason after birth - but as humans we have invisible limitations that set us back on track - where we say, enough is enough. I wont be sad anymore because my child needs me. But do we say in someone else's case, "this is long enough" or "now is time for you to care"? Most often these are automatic time limits that should kick in either maternally or paternally... but what if they don't? What if that time seems to be never? Is it appropriate for someone to step up and say something? Do something? Who gives the authority to put limits on emotional grieving or acceptance? I know for me, the answer is simple (if we are able to separate and remove our compassion toward the grieving father). It's easy for me to say, after five years he needs to get over it and care for his child and treat his child as he does his other - because I did it..... But who am I?