A Little Something Extra

Monday, June 15, 2009

Addressing a comment

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.

19 comments:

Anonymous said...

Jennie, thank you for sharing your life through this blog. I'm sure others find it therapeutic and informative as I do. I know it's hard not to be bothered by negative comments but I think you and Mark expressed yourselves very well in response. I wonder why Joscelyn would feel the need to attack another person's personal thoughts in that way and hope that she is able to find the help and support she needs.

Jonathan's Mom said...

Hi Jennie,

I just had to respond to the end of your post. That's sooo great that he's signing "more!" Great job Micah and Mommy! Oh, I bet you were just thrilled.

I won't respond to the other part here because I already have elsewhere, but know that we still love and support you and you are in our prayers, of course.

Miss you!

Anonymous said...

I have not been to your blog lately but I found this post! Wow, I miss a day, I miss alot. I like your rebuttle! If you watch Bill O'Reilly this anonymous commenter wins the Pinhead award!! I'm an "older" mom, I knew the risks of having a child at age40. Wyatt came along with Down syndrome. He is high functioning and is in the midst of some very successful potty training.Although Wyatt is right on for a 4 1/2 yr old in social settings he still does many things from a 2-3 yr old mentality.I find myself the laundry room sweating and swearing because it is exausting to care for him some days! And my two other "normal" children also provide me with plenty of stress! My mom has said to me "Well you are the one who wanted three kids and you were older when you had Wyatt, what would you expect" I called her bad names too! Having your own mother saying this is very hurtful. I suppose I complained too much to her but a little empathy is nice. Perhaps this coward reader (who sounds like my mother) doesn't know the difference between sympathy and empathy. I agree that "anonymous" is an angry person and I think they ought to be looking inward instead of lashing out at you/your blog.
Yours sincerely from Jayne, another cup half empty, tired, but wouldn't have it any other way Mom.

Michelle said...

Hi Jennie - I really found the article you posted about anesthesia the other day interesting. I hadn't read the comments. Wow!

I love your honesty. I love that you share so much with us. And everyone's story is so different - I think that's what makes it so interesting. And I LOVE MICAH! He's such a sweet little guy. But I know it can't be easy to care for him 24/7 - he has a lot of needs, and been through a lot of scary medical stuff.

I was 32 when Ruby & Lydia were born. Is that late in life? Please. Some people really need to be educated.

Andrea said...

Great job Jennie but it is too bad you even had to "address a comment". :-( Glad to hear Micah has started signing! That is so exciting!!!! I taught both of my girls to sign and it has come in so handy with Laney since she is not speaking and will be getting therapy. I think with time Micah will be able to learn a lot of signs and his ability to communicate with you will make him feel so good! I miss his smiling face - I haven't seen you guys in awhile. Hope things are well....hope you are having a good summer so far!

Christine said...

Jennie- I saw your last post on the anesthesia study and found it very interesting and informative, especially since my daughter with DS has been through two major surgeries requiring anesthesia. I did not, however, read the comments to the post until I saw your recent post responding. I have a few comments.

First, to you, Jennie, please don’t let that anonymous poster, who must have some sort of emotional need to tear down others, discourage you from posting on your blog. I enjoy reading your blog. It is nice to read about someone who is going through an experience similar to my own.

Second, to Joscelyn, if that is even your real name, you are not very educated as to the risks of having a child with Down Syndrome. I was 33 when I learned my daughter was going to be born with Down Syndrome. 80% of all children with DS are born to women under 35. Although the risk of having a child with DS does go up with maternal age, the risk is still fairly low for women in their late thirties. The reason why 35 is often the key risk date referenced is because the risk of miscarriage from an amnio to diagnose DS equals the risk of having a child with DS at that age- roughly 1 in 250. Not very high. In any event, in my opinion, it is not your place to question the age at which others have children, especially since you don't know their personal circumstances.

Third, Jennie, Micah just might surprise you with his walking. He has a way to go before he reaches age 2. My daughter did not bear any weight on her legs until she was about 20 months old; she could not get into a sitting position on her own until she was nearly 15 months old. Yet, she walked around her second birthday. But, even if Micah doesn’t walk at 2, don’t be discouraged because he will walk eventually. Our kids with DS certainly do things at their own pace, but they are truly amazing with their determination- this is one stereotype that I am willing to accept.

paige said...

Jennie - i am another huge fan of your blog. The comment about 'later in life' totally gets me because if it was too late for a baby, a baby wouldn't come... That's how God made us.
Micah is *exactly* who God designed him to be - created in God's image & loved by his Father. i wish more mamas would keep having babies later in life because this trend towards having babies in your 20's & then being sterile for your 30's & 40's is so unnatural & not at all how we've been designed.
i also wanted to say that your husband's comments made me cry - what a beautiful thing to witness a loving family living out their faith.

Cate said...

Wow, I hadn't seen that comment but I went back and read through.

I do feel sorry for that woman. I think you're right, anyone who claims not to be bothered at all by their child's issues is probably not being honest.

I also think that blogs have been an absolute lifeline for me. It really does help to know what others are going through.

Anonymous said...

I love reading your blog updates - please keep them coming and don't let one commenter ruin it for you! Having a special needs child myself, it is nice to know we are not in this alone and that there are many others struggling with the same issues. Thanks for being open, honest and real!

Kristy (friend of Jodi Bauer's)

Emma Claire said...

Jennie,
I found your blog through my friend, Amy and have followed your journey with Micah from the beginning. Thank you being brave enough to share what others are afraid to. Thank you for showing real, raw emotion. Your words are so very real and powerful. That is a quality I wish more people had. I hope you know what a powerful testimony you have through your blog. I hope you will find comfort and peace knowing that people you don't know care and are praying for your family.
Thank you,
Caroline

Mommy to those Special Ks said...

Oh...my...word. Well, let me tell you what my friend Heather told me when I got my first "hater" (as we have now dubbed "them"). She said, "When you get your first hater, you know you've made it in the blogging world. Congratulations." So, congratulations Jennie! This means you're not allowed to quit blogging because too many people love you and your sweet family! Especially Micah! :) Keep on keeping on.

The Allberts said...

Jennie, I just spent some time reading through your last few posts. Thank you for being honest and transparent through your blog. I love that about you! And I know that is why so many people are drawn to follow your sweet family of 5. I was very disturbed by the negative comment and floored that someone would take to time to pass judgement on you. I think you addressed it beautifully though and it is a testimony to your faith.

That is WONDERFUL about Micah signing!! Get a video to post soon.

Love, Elizabeth

Laurie said...

Tell it like it is, sista! This is YOUR blog, those are YOUR feelings, and you are completely entitled to tie them both together.

One of the reasons I started blogging was because I needed an outlet to try and express thoughts swirling around in my head that I just couldn't verbalize. I wanted my blog to be an honest place where others who were on similar journeys could look to for unabashed truth. Putting your happy face on only works for a little while.

We all know that you love and adore each and every one of your boys, and that ups and downs of emotions are a part of living life.

Write on :)

Rachel Dominguez said...

I couldnt say it better myself! Very well expressed! Good for you for defending yourself to someone that would feel the need to comment negatively on YOUR blog.

Jessica said...

Jennie - Hi, this is Jessica from baby center. I have been away from the "blog-world" for a bit and was saddened to come across the ignorant and cruel words posted by "anonymous" in your previous post. I wish I could reach out and hug you! All of us who have made the decision to share our stories, whether it be to keep family and friends posted or to simply share our journey in the hopes that it will touch someone else in a positive way, have also chosen to make ourselves vulnerable. I am so sorry that someone chose to take advantage of that in an attempt to hurt you. It takes courage to do what you are doing and I for one applaud that courage. To share your story, the good times and the hard; to be honest about your feelings, fears, and frustrations is not easy. I personally feel that anyone whose child has been through medical nightmares and says they NEVER felt a moment of fear, anger, frustration, or even [gasp!] self pity, is either A) a saint or B) in serious denial. I would venture to guess that anonymous is most likely B. Please continue to share your story, it means so much to so many of us.

ps. I met my husband "later" in life too and I must say he was worth the wait. It's apparent to me yours was as well.

Jessica said...

Jennie - Hi, this is Jessica from baby center. I have been away from the "blog-world" for a bit and was saddened to come across the ignorant and cruel words posted by "anonymous" in your previous post. I wish I could reach out and hug you! All of us who have made the decision to share our stories, whether it be to keep family and friends posted or to simply share our journey in the hopes that it will touch someone else in a positive way, have also chosen to make ourselves vulnerable. I am so sorry that someone chose to take advantage of that in an attempt to hurt you. It takes courage to do what you are doing and I for one applaud that courage. To share your story, the good times and the hard; to be honest about your feelings, fears, and frustrations is not easy. I personally feel that anyone whose child has been through medical nightmares and says they NEVER felt a moment of fear, anger, frustration, or even [gasp!] self pity, is either A) a saint or B) in serious denial. I would venture to guess that anonymous is most likely B. Please continue to share your story, it means so much to so many of us.

ps. I met my husband "later" in life too and I must say he was worth the wait. It's apparent to me yours was as well.

Anonymous said...

Jennie, i just wanted to say you are a wonderful person and a even better mother(if its possible). i feel really lucky to know you and your family and your blogg is really teaching me a lot, for myself and for max, so thanks and keep bloggen! oh and way to go Micah!!-sara p

alexandrea said...

well said, i too am a older mom. I did not get married til I was almost 33. i took the chance, i had her 7 weeks early, it has been a rough road and I have not even blogged it all

I have never looked at any of your post as poor me, but looked at them as your daily vent .We all feel nuch better and desreve the chance to whine or whatever.
kepp us updated on your lo as we want o know how they are doing..

Peggy Saylor said...

Hi Jennie!
This entire post was extremely well thought out and well written.
You have, indeed, been nothing but transparent since starting your blog. You may be - and probably are - the inspiration to many families caring for a child that has Down Syndrome. Knowing someone else has been through the same/similar situation you're going through can be such valuable support.
Your blog is definitely a gift of yourself to others. Thank you for sharing so freely.
Great news on Micah's signing.
Hugs,
Peggy