In the last few weeks, my favorite on-line message boards have lost three dearly loved people. Gabby, a sweet 4-month-old with Down syndrome passed away after complications from heart surgery. We at Baby Center's Ds board grieve with her mother and mourn her loss.
On the Sonlight forums (homeschool support group), we were shocked to find out that Char, a sweet and thoughtful member, died suddenly as a result of an apparent heart condition that she was unaware of. We are devestated for her husband and two daughters. Just this week, another member lost her 7yo niece in an accidental drowning.
These deaths were on my mind as I was trying to articulate what exactly it is that I'm grateful for. I am thankful for my health and the health of my family. I am thankful that I was chosen to parent each child in our bountiful brood. I am thankful for their individual, and often hilarious, personalities. I am thankful for my amazing and witty husband. I am thankful for our home, and all our other stuff. I am consistantly thankful for hot showers.
But, I realize, now more than ever, that all of the above are circumstantial and temporal. It could all change at any time. We are all just a heartbeat away from a drastically different life than what we know.
So I am grateful for something more.
I'm reminded of when I discussed Eon's increased odds of Ds with my midwife. I had just been to the perinatologist's office and met with a genetic counselor. I was relaying that my odds had increased to 5% or 1:20. She cut me off, waved her hand and said, "Oh. It's fine. He's going to be fine." I agreed with her words and parroted the "fine" comment but added, "but even if it's not 'fine', it's going to be ok." She refused to hear me and kept insisting, instead, that there was nothing "wrong" with the baby.
We were saying the same words, but meaning totally different things. She could not believe that our son had Down syndrome. I was trying to tell her that it was ok if he did.
I realize that the same sentiment is what I'm experiencing now...even if it's not fine, it's going to be ok.
Even if my world changes tomorrow and the unthinkable should happen, it's going to be ok. Nothing surprises God. His grace is sufficient for me. He has promised to meet all my needs and He is here, with me. That's what Immanuel means, you know...God with us.
There will be struggles, grief, and wrestling with God when future trials hit, and they will come. Of that, I'm certain. But I will not be alone, of that I'm certain, too.
I was sharing this with my sister and trying to wrap my brain around my full heart and she said something profound. She asked, "You know what that is, don't you?" I did not. "Peace on earth," she said.
And she is right.
Friday, November 27, 2009
Tuesday, November 17, 2009
WARNING: This post has nothing to do with Down syndrome. If you read this blog only for it's Ds content, you may skip this post entirely.
If you have a large family, you may relate to the story I'm about to share. If you don't, you may think a call to CPS is in order. When we set out to have a large family, I had visions of the families that grace the cover of the homeschooling magazines, with all the children in matching outfits, gazing adoringly at their calm and sweet-spirited parents, ala the Duggars. My reality is um, a tad different.
We have been dealing with coughing and sickness in our home for weeks. The only time my kids will share without coercing from me is if it's a virus or bacteria. They share those really well. A few of the kids coughs seemed to be worsening, so I finally called the doc. Eon was only a little congested, but his bradycardia alarm on the apnea monitor had been going off every night for a week, so I took him in for good measure, too.
Unfortunately, one of the sick kids just happened to be my oldest, who also happens to be my babysitter when I need to run to a doctor's appointment with one or more of them. Which means, I wasn't just taking three of them to the doctor, I was taking all six of them. Ben, 4, had speech class right before the appointment, so we raced home from there to pick up the rest of the crew.
I didn't think to actually look at any of them, I just ushered them into the bus, er, van and away we went. Our appointment time was 2:30, or as we like to call it, naptime. All three boys still take naps, which is fantastic...unless we have an appointment at that time. We waited in the waiting room for a half hour which gave me ample time to realize that Tali, 5, had oatmeal from breakfast stuck to her shirt and ketchup from lunch smeared all over her pants. I also noted that she had apparently taken scissors to the knees of her jeans. Her hair remained unbrushed. I didn't bother to look at her teeth.
Zak, 2, sat kind of glazed during that time, but just started to get his second wind when the nurse called our names. As we all ushered into the tiny exam room, four of the kids noticed the small bench with ample seating...for two. They immediately started jockeying for position with lots of elbowing, yelling, and a little pinching while I was trying to give the nurse the histories. When she took Zak to get his weight, he started screaming and refused to climb on the scale. Big sister, Michaela, 13, bravely showed him how it's done and he reluctantly participated.
Back in the room, Zak, Tali, and Ben discovered the stairs to climb on the exam table. They had a great time climbing up and jumping off....over and over again, complete with war whoops with each jump. Ellie, 9, took it upon herself to corral them, until one of them bit her! Of course, she erupted into tears just as the doctor came in the room.
He asked me to repeat the histories all over again (why do they do that? Why must I share it the first time? Why did she write it all down?). I am hissing at the children to "sit down! Be quiet! Get off the floor! LEAVE THE LIGHTS ON, BENAIAH!" in between answering questions about coughs and fevers.
Finally, he examines them. Eon's up first and I'm told that the child I brought in as an after-thought is "really sick" and needs a breathing treatment right there. Zak's up next and is really ticked when I have to hold him down to be examined, so he kicks me and calls me, "stupid". Nice. His left ear looks great, but the doc needs to clear the wax from his right. He proceeds to do that, and pulls out...a fruit snack, at least a partial one. Sigh. That kid has a complete fascination for all the openings in his head. Thankfully, I learned a long time ago the secret to removing foreign objects from a nostril without a trip to the ER. Otherwise, we would be on a first name basis with the triage nurse.
Michaela complains of a plugged ear during her turn, so the doctor jokes that maybe Zak stuffed something in it when she was sleeping. Oh, he's hilarious.
The chaos continued as the nurse hooked up the nebulizer machine for a breathing treatment for Eon and informed me it should only take about 15-20 minutes...in the little-bitty room...with six children, three of whom still hadn't had a nap! Eon wailed during his treatment which just added to the fun. Before he stepped out, the doc mentioned that he was sending us to the hospital for chest x-rays.
I panicked and tried to call my husband for reinforcement. No way was I about to have a repeat performance at the hospital! My blessed husband informs me that he can't really hear me above the machine, Eon's cries, and the fighting of the others, but he'll call me in a few hours when he's at a stopping place on this job. Ack!
Breathing treatment ends, finally, and the doc returns with the scrips for the x-rays. He has the nurse take another reading of Eon's O2 sats, and finds they are only 91%. She keeps trying and he's talking about sending us to Riley Children's Hospital and I'm thinking, "No. stinking. way." Eon is happily shredding the paper chuck he's sitting on while the machine drops to 88%. I mention that perhaps it's the machine. Thankfully, the nurse is smart enough to move the monitor to his hand and it magically increases to 96%, where I immediately take it off of him before it has a chance to drop again.
Finally, they let us leave and I find that it's now 4:30. We have been there for TWO HOURS! The boys fall asleep as soon as their car seats are buckled. My dear husband calls to tell me he wrapped up his project early when he heard the distress in my voice. I'm able to drop off my problem children into his capable hands.
I call my sister, share the whole sordid tale, and admit, "The only thing that seperates us from white trash is that they all have the same father...and I'm married to him."
If you have a large family, you may relate to the story I'm about to share. If you don't, you may think a call to CPS is in order. When we set out to have a large family, I had visions of the families that grace the cover of the homeschooling magazines, with all the children in matching outfits, gazing adoringly at their calm and sweet-spirited parents, ala the Duggars. My reality is um, a tad different.
We have been dealing with coughing and sickness in our home for weeks. The only time my kids will share without coercing from me is if it's a virus or bacteria. They share those really well. A few of the kids coughs seemed to be worsening, so I finally called the doc. Eon was only a little congested, but his bradycardia alarm on the apnea monitor had been going off every night for a week, so I took him in for good measure, too.
Unfortunately, one of the sick kids just happened to be my oldest, who also happens to be my babysitter when I need to run to a doctor's appointment with one or more of them. Which means, I wasn't just taking three of them to the doctor, I was taking all six of them. Ben, 4, had speech class right before the appointment, so we raced home from there to pick up the rest of the crew.
I didn't think to actually look at any of them, I just ushered them into the bus, er, van and away we went. Our appointment time was 2:30, or as we like to call it, naptime. All three boys still take naps, which is fantastic...unless we have an appointment at that time. We waited in the waiting room for a half hour which gave me ample time to realize that Tali, 5, had oatmeal from breakfast stuck to her shirt and ketchup from lunch smeared all over her pants. I also noted that she had apparently taken scissors to the knees of her jeans. Her hair remained unbrushed. I didn't bother to look at her teeth.
Zak, 2, sat kind of glazed during that time, but just started to get his second wind when the nurse called our names. As we all ushered into the tiny exam room, four of the kids noticed the small bench with ample seating...for two. They immediately started jockeying for position with lots of elbowing, yelling, and a little pinching while I was trying to give the nurse the histories. When she took Zak to get his weight, he started screaming and refused to climb on the scale. Big sister, Michaela, 13, bravely showed him how it's done and he reluctantly participated.
Back in the room, Zak, Tali, and Ben discovered the stairs to climb on the exam table. They had a great time climbing up and jumping off....over and over again, complete with war whoops with each jump. Ellie, 9, took it upon herself to corral them, until one of them bit her! Of course, she erupted into tears just as the doctor came in the room.
He asked me to repeat the histories all over again (why do they do that? Why must I share it the first time? Why did she write it all down?). I am hissing at the children to "sit down! Be quiet! Get off the floor! LEAVE THE LIGHTS ON, BENAIAH!" in between answering questions about coughs and fevers.
Finally, he examines them. Eon's up first and I'm told that the child I brought in as an after-thought is "really sick" and needs a breathing treatment right there. Zak's up next and is really ticked when I have to hold him down to be examined, so he kicks me and calls me, "stupid". Nice. His left ear looks great, but the doc needs to clear the wax from his right. He proceeds to do that, and pulls out...a fruit snack, at least a partial one. Sigh. That kid has a complete fascination for all the openings in his head. Thankfully, I learned a long time ago the secret to removing foreign objects from a nostril without a trip to the ER. Otherwise, we would be on a first name basis with the triage nurse.
Michaela complains of a plugged ear during her turn, so the doctor jokes that maybe Zak stuffed something in it when she was sleeping. Oh, he's hilarious.
The chaos continued as the nurse hooked up the nebulizer machine for a breathing treatment for Eon and informed me it should only take about 15-20 minutes...in the little-bitty room...with six children, three of whom still hadn't had a nap! Eon wailed during his treatment which just added to the fun. Before he stepped out, the doc mentioned that he was sending us to the hospital for chest x-rays.
I panicked and tried to call my husband for reinforcement. No way was I about to have a repeat performance at the hospital! My blessed husband informs me that he can't really hear me above the machine, Eon's cries, and the fighting of the others, but he'll call me in a few hours when he's at a stopping place on this job. Ack!
Breathing treatment ends, finally, and the doc returns with the scrips for the x-rays. He has the nurse take another reading of Eon's O2 sats, and finds they are only 91%. She keeps trying and he's talking about sending us to Riley Children's Hospital and I'm thinking, "No. stinking. way." Eon is happily shredding the paper chuck he's sitting on while the machine drops to 88%. I mention that perhaps it's the machine. Thankfully, the nurse is smart enough to move the monitor to his hand and it magically increases to 96%, where I immediately take it off of him before it has a chance to drop again.
Finally, they let us leave and I find that it's now 4:30. We have been there for TWO HOURS! The boys fall asleep as soon as their car seats are buckled. My dear husband calls to tell me he wrapped up his project early when he heard the distress in my voice. I'm able to drop off my problem children into his capable hands.
I call my sister, share the whole sordid tale, and admit, "The only thing that seperates us from white trash is that they all have the same father...and I'm married to him."
Tuesday, November 10, 2009
Feeding the taste-challenged child
Eon has some weird eating habits already. At first, I thought it was just texture that he deplored. He does fantastically well with stage 2 baby food...from a jar. When I grind up whatever the rest of us are having (usually just the veggies), he stops all mouth movement, looks at me accusingly, and gags. Every time. We introduced Cheetos Naturals for him to self feed. He did great...when the therapist was here. Then, he did the gagging thing a few times and now he just takes them and tosses them off the tray.
Over the weekend, we went to Pokagon State Park to celebrate "Thanksmas" with my side of the family (don't ask), and he got to try apple spice cake. I was expecting the gagging/vomit routine, and he did gag once, but then he got excited and ate almost a whole piece, one tiny bite at a time. The next morning, he did the same with coffee cake.
I'm starting to see a theme. Cake = good....mom's cooking = very bad. So maybe it's not texture; maybe it's taste. Who knows?
Over the weekend, we went to Pokagon State Park to celebrate "Thanksmas" with my side of the family (don't ask), and he got to try apple spice cake. I was expecting the gagging/vomit routine, and he did gag once, but then he got excited and ate almost a whole piece, one tiny bite at a time. The next morning, he did the same with coffee cake.
I'm starting to see a theme. Cake = good....mom's cooking = very bad. So maybe it's not texture; maybe it's taste. Who knows?
Tuesday, November 3, 2009
Apparently, I'm a Pollyanna
Last week in the UK, news broke that women were experiencing more Down syndrome pregnancies, but fewer births. The increase in pregnancies were related to more women delaying childbearing. The decrease in births were related to "better" screening procedures with more terminations. In reading the articles related to these findings, I found myself reading the comments sections...again (when will I get a clue?).
Comments always seem to follow a pattern...someone comments that they had a distant relative with Ds and that person was a drain on the family, and then the siblings got stuck taking care of him. Someone else comments that it's irresponsible to condemn a child to a life of "suffering" and termination is a good alternative. Then, a parent of a child with Ds will chime in and correct some misinformation which has been spouted and communicate what a joy their daughter is and how children with Ds are more "normal" than not, etc.
There will be a lot of comments following in the above vein, until someone comes on to accuse all the parents who are being positive of lying. That anyone who claims that raising a child with Ds isn't a horrible experience is delusional and a pollyanna. (I've read the original story of Pollyanna. Since when did finding the silver-lining become a bad thing?)
I recently heard something similar from a woman who is considering terminating her pregnancy because of T21. She said that the advocacy groups only post the positive and she could practically see "the cute little bunnies hopping across the page". She was asking those who have already terminated what it was really like to have a baby with Down syndrome. Um, seriously? I don't think they know...they aborted.
Why can't the critics believe the people who have been there, done that? Maybe having a child with Down syndrome is a positive thing. Why is it so hard to believe that we really love our children, that we are proud of them, that we have learned from them, and that our lives with them are normal? Why is the burden of proof on us, for crying out loud. And, why on earth would they think we have reason to lie about it?
Leaves a bad taste in my mouth. I have got to learn to stay away from the comments section!
Comments always seem to follow a pattern...someone comments that they had a distant relative with Ds and that person was a drain on the family, and then the siblings got stuck taking care of him. Someone else comments that it's irresponsible to condemn a child to a life of "suffering" and termination is a good alternative. Then, a parent of a child with Ds will chime in and correct some misinformation which has been spouted and communicate what a joy their daughter is and how children with Ds are more "normal" than not, etc.
There will be a lot of comments following in the above vein, until someone comes on to accuse all the parents who are being positive of lying. That anyone who claims that raising a child with Ds isn't a horrible experience is delusional and a pollyanna. (I've read the original story of Pollyanna. Since when did finding the silver-lining become a bad thing?)
I recently heard something similar from a woman who is considering terminating her pregnancy because of T21. She said that the advocacy groups only post the positive and she could practically see "the cute little bunnies hopping across the page". She was asking those who have already terminated what it was really like to have a baby with Down syndrome. Um, seriously? I don't think they know...they aborted.
Why can't the critics believe the people who have been there, done that? Maybe having a child with Down syndrome is a positive thing. Why is it so hard to believe that we really love our children, that we are proud of them, that we have learned from them, and that our lives with them are normal? Why is the burden of proof on us, for crying out loud. And, why on earth would they think we have reason to lie about it?
Leaves a bad taste in my mouth. I have got to learn to stay away from the comments section!
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