My mom, the girls and I attended the 5p- Society Conference this past weekend in Indianapolis. It was lovely. There were over 80 families in attendance. It was amazing to see all the kids/adults affected by 5p- syndrome. The seminars/talks were great.
I think the best part (for me; we’ll get to the best part for the girls in another post) was the keynote speaker. James is 43 years old. He was diagnosed with 5p- syndrome when he was eleven years old. I know!! We thought Olivia was diagnosed late at 2 years and three months old. James has us beat big time.
James lives on his own, he works, he volunteers with Special Olympics. He runs marathons, he has his driver’s license. He inspires parents like me to keep pushing my child, to keep my dreams for her and her dreams alive as we both learn and grow through all this.
We attended a talk called Cri du Chat 101, which gave us the basics of the syndrome, talked genetics and debunked a few myths. Perhaps the best thing the speaker said was that our kids continue to develop skills even into adulthood. The speaker’s daughter is 23 years old. He said she has better verbal skills now than she did two years ago. She’s still learning, just as we all continue to learn.
I’ll be honest…I think if I’d attended this conference when Olivia was first diagnosed I would have cried…a lot. I would have been worried sick about the worst-case scenarios and maybe lost focus on what is possible when confronted with the fact that for a lot of individuals with this syndrome, life can be hard. Walking isn’t always going to happen, talking isn’t always going to happen, potty training doesn’t always happen.
But you know what does seem to happen at least most of the time? These kids, these adults are happy. They’re loved beyond measure and with therapies and medicines improving even as our kids improve, the prognosis gets better all the time.
Attending this year for the first time when Olivia is eight years old, I was able to look at my walking, talking, potty trained girl and know that life for her is only going to continue to get better. At least if I have anything to say about it.
I am honored to be a part of the 5p- family. I’m honored to be Olivia’s mother, one of many parents out there who will do absolutely anything to help her child reach her fullest potential and to love that child every step of the way.
A mom, a dad and two daughters. We're living ordinary lives with a twist of 5p- (Cri du Chat) for spice. But we're about so much more than our younger daughter's genetic diagnosis.
Monday, August 3, 2015
Wednesday, July 29, 2015
Whew!
So, I saw a cardiologist today. Back in May my chest started hurting. Mostly at night when I was lying in bed, before the pull of slumber dragged me down.
I’d lay there and think about the pain, worry about what it meant, pray that I didn’t leave my twelve year old and eight year old daughters without a mother in the near future. I worried myself sick over the thought of dying in my sleep. How would either A or O every get over that?
I know kids are resilient, I know they’d have Tom and my mom and so many others to love them through my death but I still worried incessantly about it.
Finally, in June, I went to see my family doctor. He didn’t take my symptoms lightly. He immediately referred me to a cardiologist. However, I felt a sense of relief when the first they could get me in was in late July (today.) I figured if my family doctor was truly worried, he’d have found a way to get me in to the cardiologist sooner than over five weeks after my appointment with him.
So I went about my life. I had pain here and there and I was grateful every single morning when I woke to Olivia’s sweet voice or the tapping of her small hand on my face. I was grateful that I woke up and greeted her when the alternative felt almost around the corner.
Yes, I was feeling little morbid in the past few weeks.
I imagined Alyssa meeting the other girls she shared a dorm with during her freshman year and her having to say something along the lines of, “I lost my mom when I was twelve.”
I worried about how that would alter her, scar her, change her.
I worried about Olivia. Who would coddle her? Who would wake up at 2am when she called from her bed, just wanting a middle of the night kiss?
The cardiologist announced about three questions into our conversation that he could say with 99% certainty that my symptoms had nothing do with my heart.
We continued our conversation a bit longer before he told me that what I probably suffer from is GERD. Basically heartburn. He wants me to take an antacid such as Previcid daily for six weeks and then go see him to confirm that my symptoms have disappeared.
Can I tell you how relieved I am? Can you, dear reader, imagine my sigh as I exhaled the last few months’ worth of stress? I’d hoped this was the case but honestly, I was willing to pay the deductible to have someone with an advanced degree in medicine to confirm it.
I was told that the labs I’d had done a month ago to check my cholesterol and glucose. He went on to say that my cholesterol is excellent. My glucose is just this side of being high (113 when normal is supposed to be below 109) so we’re going to watch that and the remedy to that is to lose weight. Yeah, duh, right?
Because he’s thorough, the doctor went through the rest of his questions and after I’d answered them all, he finished with, “So, basically, you’re a healthy, happy woman.”
Yes, please, I’m so very happy with that diagnosis.
I’d lay there and think about the pain, worry about what it meant, pray that I didn’t leave my twelve year old and eight year old daughters without a mother in the near future. I worried myself sick over the thought of dying in my sleep. How would either A or O every get over that?
I know kids are resilient, I know they’d have Tom and my mom and so many others to love them through my death but I still worried incessantly about it.
Finally, in June, I went to see my family doctor. He didn’t take my symptoms lightly. He immediately referred me to a cardiologist. However, I felt a sense of relief when the first they could get me in was in late July (today.) I figured if my family doctor was truly worried, he’d have found a way to get me in to the cardiologist sooner than over five weeks after my appointment with him.
So I went about my life. I had pain here and there and I was grateful every single morning when I woke to Olivia’s sweet voice or the tapping of her small hand on my face. I was grateful that I woke up and greeted her when the alternative felt almost around the corner.
Yes, I was feeling little morbid in the past few weeks.
I imagined Alyssa meeting the other girls she shared a dorm with during her freshman year and her having to say something along the lines of, “I lost my mom when I was twelve.”
I worried about how that would alter her, scar her, change her.
I worried about Olivia. Who would coddle her? Who would wake up at 2am when she called from her bed, just wanting a middle of the night kiss?
The cardiologist announced about three questions into our conversation that he could say with 99% certainty that my symptoms had nothing do with my heart.
We continued our conversation a bit longer before he told me that what I probably suffer from is GERD. Basically heartburn. He wants me to take an antacid such as Previcid daily for six weeks and then go see him to confirm that my symptoms have disappeared.
Can I tell you how relieved I am? Can you, dear reader, imagine my sigh as I exhaled the last few months’ worth of stress? I’d hoped this was the case but honestly, I was willing to pay the deductible to have someone with an advanced degree in medicine to confirm it.
I was told that the labs I’d had done a month ago to check my cholesterol and glucose. He went on to say that my cholesterol is excellent. My glucose is just this side of being high (113 when normal is supposed to be below 109) so we’re going to watch that and the remedy to that is to lose weight. Yeah, duh, right?
Because he’s thorough, the doctor went through the rest of his questions and after I’d answered them all, he finished with, “So, basically, you’re a healthy, happy woman.”
Yes, please, I’m so very happy with that diagnosis.
Monday, July 27, 2015
Her Mini-Me
Alyssa hurt her foot last Friday before I got home from work. She twisted it as she was going down the stairs in our garage. It’s bruised and was swollen most of the weekend. She iced it and used a spare crutch we’ve had around the house for years, using bacon duct tape to attach a wash cloth to protect her armpit.
Yeah, so she’s limping and probably kind of milking it, because, who wouldn’t, right?
Olivia, on the other hand, is in excellent health and as such, is feeling a little neglected as Mom and Dad go about getting things for Alyssa, asking her how she’s feeling, helping her up, etc.
So Olivia started limping on Saturday. Of course, she first asked Alyssa which foot she’d hurt (the right) so that Olivia could ‘hurt’ the same one.
Of course this irritated Alyssa, as she asserted, “Make her stop that! I’m the one who is actually in pain.”
I tried not to laugh because, well, honestly how was it making Alyssa’s ‘actual’ pain more intense when her sister limped around the house?
What pained Alyssa the most was that she had to stay home with Tom on Saturday, the day we (this week, ‘we’ was Olivia and me) go to the library, lunch and the grocery store. Alyssa couldn’t be expected to limp/crutch her way through The Walmarts, so she was stationed on the recliner with the remote, her tablet and a book. Poor kid.
Honestly, though, her foot does look like it much hurt like a bitch. But each day the limp has lessened and the swelling has come down and soon the bruise will start to yellow and all will be well.
As Tom said, “At least it happened during the summer rather than while school was in session.”
Because, yeah, she’d be crutching it to school if she had to. I’ll give it to her, A’s not one to miss school if she can help it. She may have been switched at birth.
Yeah, so she’s limping and probably kind of milking it, because, who wouldn’t, right?
Olivia, on the other hand, is in excellent health and as such, is feeling a little neglected as Mom and Dad go about getting things for Alyssa, asking her how she’s feeling, helping her up, etc.
So Olivia started limping on Saturday. Of course, she first asked Alyssa which foot she’d hurt (the right) so that Olivia could ‘hurt’ the same one.
Of course this irritated Alyssa, as she asserted, “Make her stop that! I’m the one who is actually in pain.”
I tried not to laugh because, well, honestly how was it making Alyssa’s ‘actual’ pain more intense when her sister limped around the house?
What pained Alyssa the most was that she had to stay home with Tom on Saturday, the day we (this week, ‘we’ was Olivia and me) go to the library, lunch and the grocery store. Alyssa couldn’t be expected to limp/crutch her way through The Walmarts, so she was stationed on the recliner with the remote, her tablet and a book. Poor kid.
Honestly, though, her foot does look like it much hurt like a bitch. But each day the limp has lessened and the swelling has come down and soon the bruise will start to yellow and all will be well.
As Tom said, “At least it happened during the summer rather than while school was in session.”
Because, yeah, she’d be crutching it to school if she had to. I’ll give it to her, A’s not one to miss school if she can help it. She may have been switched at birth.
Friday, July 24, 2015
Scissors
This is a public service announcement to all those kindergarteners out there who are wondering why the hell they need to master using scissors. (Because there are so many kindergarteners out there reading mommy blogs, right?) I mean, why scissors? Why do little tiny hands have to figure out how to use scissors and cut a straight line?
When will we ever use this skill in real life?
Well, I’m here to testify that in real life, at a place called WORK, where they pay you to show up and do stuff, you just might have to cut with scissors. How do I know this? Because this week, all freaking week long, I’ve had to cut strips of paper. The paper cutter wouldn’t get close enough or straight enough for me to use it consistently so scissors it was.
I cut and cut and cut some more, using those fine motor skills I mastered way back in kindergarten.
So keep up the practice, kids. It just might be necessary for your job. Even if you do have a college degree, which, as it happens, I do have. And yet I’ve spend almost 40 hours this past week cutting…with scissors.
Now, algebra? I’m not so sure where that is ever going to be needed in real life.
When will we ever use this skill in real life?
Well, I’m here to testify that in real life, at a place called WORK, where they pay you to show up and do stuff, you just might have to cut with scissors. How do I know this? Because this week, all freaking week long, I’ve had to cut strips of paper. The paper cutter wouldn’t get close enough or straight enough for me to use it consistently so scissors it was.
I cut and cut and cut some more, using those fine motor skills I mastered way back in kindergarten.
So keep up the practice, kids. It just might be necessary for your job. Even if you do have a college degree, which, as it happens, I do have. And yet I’ve spend almost 40 hours this past week cutting…with scissors.
Now, algebra? I’m not so sure where that is ever going to be needed in real life.
Thursday, July 23, 2015
Sap
“Did you always cry this?” Alyssa asked me last night.
We were watching a new show on Fox called Home Free. It’s a group of couples competing to win a house. Each week, the group renovates a house for a deserving family. What the couples don’t know is that the houses they’re renovating are actually going to be theirs. Each week, the couple that is sent home is taken inside the newly renovated house and told that this house is theirs.
It’s sweet.
One of the couples is actually a pair of sisters who are competing for a house to give to their parents.
When this was announced, I teared up and said, “That’s so sweet.”
Then there was the commercial last week where a little boy who missed his dad who was deployed overseas kept writing him letters, folding them into paper airplanes and throwing them over the fence.
The older gentleman next door gathered all the paper airplane letters, boxed them up and sent them to the little boy’s dad. The boy’s dad in turn sent a bunch of letters back to the neighbor, who folded them into airplanes and threw them over the fence to the boy. Oh, the tears that flow during that one, even during subsequent viewings.
My answer to Alyssa was that no, I haven’t always been this big of a sap. Commercials haven’t always been able to reduce me to a sobbing mess. I haven’t always sat in movie theaters fighting tears while an imaginary friend calls out, “Take her to the moon for me.” Ohhh, Bing Bong.
“When did you get this way?” she wanted to know.
I thought about it. I realized that having kids has brought my sappiness to the surface. I feel more strongly now, the sadness kids might feel when they miss a parent. I feel the ache of growing old and perhaps becoming obsolete.
I tear up in joy when something is just sweeter than I can take, something so selfless as two twenty-something girls working so hard to give their parents a home.
My girls have shown me so much joy, provided me with so much to fear and have made me grateful for every single day that I get to wake up and be with them even one more time.
If that makes me big ol’ sap…so be it.
We were watching a new show on Fox called Home Free. It’s a group of couples competing to win a house. Each week, the group renovates a house for a deserving family. What the couples don’t know is that the houses they’re renovating are actually going to be theirs. Each week, the couple that is sent home is taken inside the newly renovated house and told that this house is theirs.
It’s sweet.
One of the couples is actually a pair of sisters who are competing for a house to give to their parents.
When this was announced, I teared up and said, “That’s so sweet.”
Then there was the commercial last week where a little boy who missed his dad who was deployed overseas kept writing him letters, folding them into paper airplanes and throwing them over the fence.
The older gentleman next door gathered all the paper airplane letters, boxed them up and sent them to the little boy’s dad. The boy’s dad in turn sent a bunch of letters back to the neighbor, who folded them into airplanes and threw them over the fence to the boy. Oh, the tears that flow during that one, even during subsequent viewings.
My answer to Alyssa was that no, I haven’t always been this big of a sap. Commercials haven’t always been able to reduce me to a sobbing mess. I haven’t always sat in movie theaters fighting tears while an imaginary friend calls out, “Take her to the moon for me.” Ohhh, Bing Bong.
“When did you get this way?” she wanted to know.
I thought about it. I realized that having kids has brought my sappiness to the surface. I feel more strongly now, the sadness kids might feel when they miss a parent. I feel the ache of growing old and perhaps becoming obsolete.
I tear up in joy when something is just sweeter than I can take, something so selfless as two twenty-something girls working so hard to give their parents a home.
My girls have shown me so much joy, provided me with so much to fear and have made me grateful for every single day that I get to wake up and be with them even one more time.
If that makes me big ol’ sap…so be it.
Wednesday, July 22, 2015
I Smell Like a Basset Hound
Alyssa spent the night with a friend on Monday night. She was invited Monday morning, Tom let her go to the friend’s house for the day with instructions to call home at 5:00 to see if I was willing to let her spend the night.
Duh. Unless she doesn’t want to spend the night with someone, I’m usually pretty okay with her staying over at her friends’ houses. I know most of her friends’ parents and we all seem to like each other. At least we like each other’s kids, which is nice.
So when I got home yesterday evening, she met me at the door.
“I haven’t seen in since Sunday night!” she exclaimed, engulfing me in a hug.
I love this girl so much. She’s seriously just so awesome.
I hugged her back and said with a smile, “Well, if you weren’t so popular with your friends you might be home more.”
“You left before we woke up yesterday,” she accused.
“I know,” I replied. “Livie cried buckets of tears over that one. But we made up last night while you were gone.”
She rolled her eyes and said, “I smell like a basset hound.”
I sniffed her, not really noting an hint of dog and told her, “Well, it has been since Thursday since you last showered. Unless you count swimming in the lake on Sunday.”
She groaned. “I’m gross.”
I laughed and hugged her again, ignoring her vague scent of lake and dog.
“I think I slept on do hair last night,” she told me as I started dinner. “S’s dog slept on my feet, so I had dog hair under me and a dog on me.”
“Dogs like you,” I suggested.
“Yeah, but I’m ready to not smell like them,” she declared. “I’m going to take a shower.”
It was really good to have her home.
Duh. Unless she doesn’t want to spend the night with someone, I’m usually pretty okay with her staying over at her friends’ houses. I know most of her friends’ parents and we all seem to like each other. At least we like each other’s kids, which is nice.
So when I got home yesterday evening, she met me at the door.
“I haven’t seen in since Sunday night!” she exclaimed, engulfing me in a hug.
I love this girl so much. She’s seriously just so awesome.
I hugged her back and said with a smile, “Well, if you weren’t so popular with your friends you might be home more.”
“You left before we woke up yesterday,” she accused.
“I know,” I replied. “Livie cried buckets of tears over that one. But we made up last night while you were gone.”
She rolled her eyes and said, “I smell like a basset hound.”
I sniffed her, not really noting an hint of dog and told her, “Well, it has been since Thursday since you last showered. Unless you count swimming in the lake on Sunday.”
She groaned. “I’m gross.”
I laughed and hugged her again, ignoring her vague scent of lake and dog.
“I think I slept on do hair last night,” she told me as I started dinner. “S’s dog slept on my feet, so I had dog hair under me and a dog on me.”
“Dogs like you,” I suggested.
“Yeah, but I’m ready to not smell like them,” she declared. “I’m going to take a shower.”
It was really good to have her home.
Tuesday, July 21, 2015
Why I'm Not Actually a Terrible, Horrible, No-Good Aunt
Okay, so every single time Jaxon is at my mom’s house and we show up, the very first thing he asks me is if the girls can spend the night with him at Gram’s.
Now, I always answer in the negative because I know my mom doesn’t actually want them all there over overnight. She doesn’t have the sleeping space for them, they’re a lot of work and honestly, the girls would rather just go home with me anyway.
So I knew what was coming when we showed up last Monday evening. My mom was cleaning her car, Jaxon was there because he was going with us all the next day and there was still much packing to do in both my house and my mom’s house. The minute I stepped foot in her house, Jax was asking, “Hey, Tommie, can the girls spend the night?”
I told him we still had some packing to do and for him to enjoy the girls while we were there and that we’d all be together for the next three days.
He walked around the house muttering, “I wish they could spend the night.”
Then he started crying, “They never get to spend the night when I’m here.”
I managed to not laugh when I told him, “Buddy, they don’t spend the night when you’re NOT here.”
He didn’t appreciate my humor, not one little bit.
As the girls and I got ready to leave, the tears started flowing. He wandered out to my mom’s front yard, where a swing hands from an enormous maple tree. He sat forlornly on the swing as I buckled Olivia into the car.
I glanced over at him and said to Alyssa, “If he’d asked to come to our house, I’d have said yes.”
And it hit me. I was being a jerk. If I’d have said yes to him if he’d asked to come to our house, why wasn’t I just inviting the poor kid?
So I went out to the tree swing and asked, “Buddy, the girls can’t stay here but would you like to come to our house for the night?”
The tears stopped instantly and he leapt from the swing to run in and tell Gram that he was going with us.
My mom gathered the few things he’d need for the night and thanked me for taking him. I told her I kind of figured it would actually be easier for me to have him at my house where he and Liv would entertain each other than it would be for her to try and soothe his hurt feelings even as she packed for the coming trip.
So see…I was a nice aunt on Monday but by Thursday, I was tired and ready to be back down to just two kids. And that kid…he’s great but he can take a lot of mental energy, what with the talking and the talking and the talking and the demand for near constant interaction and did I mention the talking? Whew.
Now, I always answer in the negative because I know my mom doesn’t actually want them all there over overnight. She doesn’t have the sleeping space for them, they’re a lot of work and honestly, the girls would rather just go home with me anyway.
So I knew what was coming when we showed up last Monday evening. My mom was cleaning her car, Jaxon was there because he was going with us all the next day and there was still much packing to do in both my house and my mom’s house. The minute I stepped foot in her house, Jax was asking, “Hey, Tommie, can the girls spend the night?”
I told him we still had some packing to do and for him to enjoy the girls while we were there and that we’d all be together for the next three days.
He walked around the house muttering, “I wish they could spend the night.”
Then he started crying, “They never get to spend the night when I’m here.”
I managed to not laugh when I told him, “Buddy, they don’t spend the night when you’re NOT here.”
He didn’t appreciate my humor, not one little bit.
As the girls and I got ready to leave, the tears started flowing. He wandered out to my mom’s front yard, where a swing hands from an enormous maple tree. He sat forlornly on the swing as I buckled Olivia into the car.
I glanced over at him and said to Alyssa, “If he’d asked to come to our house, I’d have said yes.”
And it hit me. I was being a jerk. If I’d have said yes to him if he’d asked to come to our house, why wasn’t I just inviting the poor kid?
So I went out to the tree swing and asked, “Buddy, the girls can’t stay here but would you like to come to our house for the night?”
The tears stopped instantly and he leapt from the swing to run in and tell Gram that he was going with us.
My mom gathered the few things he’d need for the night and thanked me for taking him. I told her I kind of figured it would actually be easier for me to have him at my house where he and Liv would entertain each other than it would be for her to try and soothe his hurt feelings even as she packed for the coming trip.
So see…I was a nice aunt on Monday but by Thursday, I was tired and ready to be back down to just two kids. And that kid…he’s great but he can take a lot of mental energy, what with the talking and the talking and the talking and the demand for near constant interaction and did I mention the talking? Whew.
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