I've been drafting this post for a few days. I was really hoping to not feel the need to post it. However, I fear that if I don't address a comment on my last post, I will possibly refrain from sharing difficult information in the future. If you haven't read the comment thread from my last post, then feel free to ignore this post.
First, let me say that one thing the commenter said is absolutely true: there are many worse things that we could have gone through. I have no idea about what it's like to have a child go through a transplant (or two). I felt that quite strongly while in the hospital with Micah 2 weeks after his heart surgery when he was in the step-down unit in a room next door to a transplant patient. We never even saw the family, but I said a prayer every time I walked by the room. I hate that any family has to go through that because it must be very difficult. Yes, there are many worse things that we could have gone through. We haven't watched our child go through a battle with cancer and lose the battle. We haven't witnessed our child get hit by a car and die in our own driveway. And there are many other things people far braver than I have come through.
I have a friend who is currently awaiting the birth of her child who has Trisomy 18. She is both finalizing a birth plan and setting up funeral arrangements. I have no idea how hard that must be for her. Does she find my posts to be "whiny?" I'm pretty sure she doesn't. I have another friend whose son has been through more surgeries than can be counted on two hands and he's not yet two. Does she think I'm playing a victim? No. In fact, she wishes she could say out loud some of what I say in my blog but feels she can't because some of her husband's clients read her site.
On the other end of the spectrum, I most certainly would not expect a friend to not complain or worry about something their child is going through because it's "less severe" than what we are going through (or have gone through) with Micah. I would never condemn someone for expressing how hard it is on their family to have a child in the hospital with pneumonia. That's because IT IS HARD. And if someone asks me to pray for their child who has an ear infection, then I'm going to pray for that child and the family (it's no fun being sick or having a sick child). And I definitely wouldn't attempt to minimize what someone else is going through to make myself feel more like a martyr.
The commenter said, "But to go on line and search out sympathy, looking for people to feel sorry for you is disgusting." - I haven't searched out anyone. I've published my URL to my family and friends, as well as my online support community. This blog was set up to begin to chronicle our journey with Micah. It was a lot easier to explain what was going on with us by writing it here. That way, the telephone game wouldn't creep in and cause miscommunication. My "readers" began with my friends and family who knew me best, so that they would know how best to pray for our family. I share our ups and downs (no pun intended). I'm not here to seek sympathy, rather to be understood. And this is therapeutic for me. It helps me to write it out. It works for me. Just because it doesn't work for someone else doesn't give that person the right to judge me for how I deal with what is going on in my life.
I'm happy for anyone who can deal with their child's challenges without complaint, as long as you're truly dealing with it in a healthy manner. Maybe cutting down someone else (aka me) for not dealing with things the way you do is part of your means of coping. Seriously, though, I do admire you if you never have days that you say, "This stinks." You're in the minority. There are some women on my online community who never struggled with having a child with a disability. But based on my communications within that community, I believe they're in the minority. And to the best of my knowledge, they don't judge the rest of us for expressing our concerns and fears. And if they do, they keep it to themselves rather than reminding the rest of us that they're better than us.
If anything, I hope that there are some parents who see that they're not alone in the fears and concerns they have, especially parents who are new to the Down syndrome thing. Those first days/weeks/months can be very dark days and I hope to have at least encouraged someone along the way to know that there are others out here who have walked the road and felt that darkness and come through it. Some will say that, "God doesn't give you more than you can handle," or "God must think you're pretty special to give you such a special kid." I disagree with both of those statements. I believe that God will allow challenges to come into my life to cause me to rely on Him more. Some will say, "I don't know how you do what you do." To them I would say that as a parent, you do what you have to do. You do what God has called you to do. My journey is different from everyone else's because it was hand-scripted for me.
And as long as I'm responding, I might as well take the opportunity to educate. The commenter said, "I know Micah is happy - most DS kids/adults are." Please take the stereotype away because you really shouldn't classify someone's demeanor based on a medical diagnosis... Micah can be as ornery as any other 17mo old, he's just especially cute doing it. And please don't say "DS kids/adults." Please use people-first language. Micah is a baby with Down syndrome, not a Down syndrome baby. Think of it like someone referring to a child with leukemia as someone's "leukemia kid." That doesn't sound quite right, does it?
I do understand that there have been some posts on my blog that have been "glass is half empty." Yes, that's part of my personality sometimes, I'm afraid. What's hilarious to me is that the commenter chose the last post to claim that I was seeking sympathy. Really, it was mostly a factual post, not a "woe is me" post. But I've had some of those too. If you'd like to rip on me for a "woe is me" post, you could have found a more appropriate post.
Your judgment of me based on having children later in life is terrible. I know many women who have children with Down syndrome who are in their 20's. And Micah's diagnosis of Down syndrome does not mean that he would necessarily have all the health issues that he has. He's definitely on the extreme end of medical issues associated with Down syndrome. And what is your definition of having a high chance of issues with a later in life pregnancy? Is 1% high?
But seriously, I'm concerned that you're not being honest with yourself about your grief over what your child is going through. I'm concerned about the anger you expressed in your comment. You're correct in that what we're going through is not the worst thing imaginable. But there are others who have come to my blog and not felt the need to put me down. So I urge you to discover the root of your anger at my blog. And take that anger to God, because He can handle it.
Now, on to the reason I wrote this post. In the interest of being open and honest, I need to tell everyone why I went a few months without really sharing much about Micah. Part of that has been that I'm just plain tired from being mommy to a newborn and two others. But during this time of Matthew newborn stage, we also went through our annual assessments of Micah's progress and those were very hard for me. Yes, he's making progress. But it's really hard to see numbers put on paper (he's 7 months in gross motor skills, etc.). And the reality is that he's very weak. He will not be walking when he's two. And it won't be because he's just stubborn and won't walk. It's because he can't. He still won't put weight on his legs without a ton of encouragement while holding him firmly under his shoulders, and even then it only lasts a few seconds. Maybe if I keep telling myself that he won't be walking on his second birthday then I won't care on his second birthday. His social awareness was his most advanced skill set, though, at 11 months, I think. For those of you who have met him, that likely doesn't come as a surprise. This child will do anything to make you smile and interact with him.
And last week Micah did his first sign. He signed "more." It was so great! Most kids learn their first signs related to food, and since Micah doesn't eat, I figured it would be a while before he signed anything. But he figured out "more" because his therapists and I sign it to him. He loves to bounce when I'm holding him. After I bounced him one day last week, he tried to bounce himself. I asked him if he wanted more bouncing and he signed "more." I scared him with my excitement!
Speaking of scaring him... I have a question for those of you with kids who have Ds and/or a feeding tube. Does your child have auditory sensory issues? Can anything be done about it? Micah is getting more and more irritated when presented with loud or unusual sounds.
Anyway... that's all the news that's fit to print. I'll post some new photos of the boys soon. I took some cute ones of the Chubby Bubby today.
Suspense by Rachel Dylan
5 weeks ago