Well, I'm exhausted. AJ's exhausted. And we have one more day until we can both collapse...although I'm sure he needs it more than I do at this point.
AJ has been participating in the Partners for Progress Intensive Therapy Program all this week. Partners for Progress was started by Rona Alexander, PhD, CCC-SLP, C/NDT and Linda Kliebhan, PT C/NDT. I've had a lot of questions about what exactly this intensive therapy week means/entails, etc. I made sure suggest a website for the program, which I was thrilled to hear was already in the works! For now, here is a tidbit taken from the brochure-I've added my own take on things in italics:
Partners for Progress (PFP):Is a non-profit organization dedicated to assisting children with special needs and their families in improving functional abilities for maximum independence, quality of life, and participation in home, school, and community.
PFP provides short-term intensive therapy programs which are designed to supplement community based or school based therapy programs by targeting specific functional activity, or by working through obstacles that may have caused a plateau or regression in function.
Short-term intensives are individualized programs specifically designed to meet the needs of the child and his/her family in moving forward. They include a combination of physical therapy, occupational therapy, and/or speech therapy and usually involve 4 hours or more of therapy per day over a 5 or 10 day period (we are doing 5 days).
Parents/caregivers and other family members participate as partners in short-term intensives, providing support, learning and developing carryover strategies and working through obstacles that impede progress.
Theraputic Philosophy:
PFP utilizes a combined therapeutic approach maximizing the backgrounds of the experienced staff. Neuro-Developmental Treatment (NDT), Sensory Intergration, Manual Therapy, and other theraputic modalities are combined, incorporating state of the art theory in areas of motor learning and motor control. Regardless of the functional outcome desired, programming focuses on buildng on the strengths of the child while minimizing problems/impairments that may interfere with progress. Short-term intensives may include emphasis on evaluating the effects of adaptive equipment for seating, mobility, or exercise, and other therapeutic modalities such as taping, compression garments, electrical stimulation, augmentative communciation devices, and splints/orthotics, including their role in programming and carryover at the completion of the intensive.
Staff: Rona and Linda ROCK. They've both treated AJ in the past. Oops, that was an adlib from me. Whoopies.
PFP was developed by Linda Kliebhan and Rona Alexander, experienced pediatric therapists who for over 25 years have provided direct treatment for children with special needs including short-term intensives throughout the United States. Both Linda and Rona are an intergral part of the planning, development, and implementation of the short-term intensive progreams at PFP. They are joined by other experienced therapists from Wisconsin and other areas of the country....
Documentation and Communication with Other Professionals:A videotape, (pictures), (Powerpoint presentation), and a written summary will be provided to the family at the completion of the intensive, highlighting the areas of progress and strategies for continued carryover. PFP staff will also be willing to speak directly with other professionals involved in regular programming for the child, when requested by the family.
======
While I won't get into specifics today, I will say that AJ is making huge progress. INTENSE progress. This week has most definitely been intense. For AJ, for me, and for his awesome therapists. There are a few kids participating that are out of state, and quite a few therapists that are out of state that have gathered for this week of therapy.
This experience has been life-changing for me as a Special Needs Mom. I am so proud of our little man. AJ has benefited from this program, and then some. I can't even explain it. When we started saving for the program, which is NOT covered by insurance, I was leary. Of course I knew it would be good, c'mon. It's Linda and Rona. But I wasn't sure how AJ would fit and how it would help him specifically.
I am SO glad we saved our pennies and were able to have AJ participate in this program. SO GLAD.
Thursday, October 28, 2010
Saturday, October 23, 2010
Comfort
There seems to be a huge misconception that Jeremy and I are comfortable with everything that has happened in our lives in the last few years.
Let me clarify. NOOOOOOOOOOOO.
I've been thinking about writing a "What to say to someone when their life doesn't fit the mold, and then some" script. Seriously. I have come up with a few pointers, but not an actual script. Because another special needs parent may not want to hear what I want to hear, if that makes sense. But what I have gathered, in this "new-age" idea of embracing our children and pushing them not to their limits, but to their POTENTIAL, is that we don't want to be ignored.
I was raised to tell the truth, and while I fell short of doing so when I was younger (don't we all), I am quickly making up for that stint in my journey as a mom. AJ is complex. His story is not simple. It took me a good year to share his story in just one sentence. Add in that I am naturally a very detailed storyteller, you've got a motor-mouth on your hands. Most recently I've found myself refraining (I know, exciting right?!) from sharing things when people have made casual comments....
And it kills me.
I feel like I am portraying AJ as an incomplete person. This may sound wildly strange to everyone reading this, but its true. And then I thought about how I think part of my sharing AJ's story, with details, is my way of trying to help people understand. Knowledge is power, right? I dug further into my own noggin and realized that sharing AJ's truth helps me heal the wound that was created when no one told me what was going on with him.
Didn't I say I was going to talk about all of you? Gee Whiz.
It is no secret that sharing AJ's story, or anything, like "Hey, my kid had a seizure in the car last week and I called 911 on the side of the road," makes other people uncomfortable. But honestly, I encourage you to stop and sit in whatever words are spoken to you. Don't run, because you feel uncomfortable. Yes, I know it is shocking that I, the person sharing this devastating news, would realize that you are going to be uncomfortable.
But let's all think about this for a second. How long does your lack of comfort last? A few seconds? A few minutes? We may loom back into your brain every now and again, but do we dwell there? No. Be uncomfortable in that moment so that we, the people experiencing whatever was just said, can feel less isolated and less like a freak of the normal world.
People tell me, "We don't know what to say." Well, you can't fix it. So start from there. Don't try to fix it. But say something. At least something. "I don't even know what to say" is an EXCELLENT thing to say, if you don't know what to say. Why? Because you are aknowledging my world. Aknowledging my pain, my act of reaching out to you. Staring, or ignoring, crushes the heart. Ok, at least it crushes mine. Is it so much to ask you to be uncomfortable for a few seconds so I can feel some relief in numbers? I don't think so.
Being a special needs parent has given me a completely different outlook on life. It really makes me sad that I see so much selfishness...everywhere. It saddens me that AJ's "stuff" freaks people out. He's still AJ.
While I've posted before on how it is sometimes irritating to hear that this was "God's Plan" or His Purpose, or he won't give you more than you can handle...there is a reason that can be bothersome. I, as the person living this story that made you so uncomfortable for a few seconds, definitely feels like I've got more than I can handle. Those words don't act like magic fairy dust or ruby red slippers and make it all disappear. They don't make me feel better. Well, Heidi, you certainly have a crappy outlook on life, don't you? No, I don't. The Big Man Upstairs and I have been dukin' it out for a long time, and continue to do so. And no I'm not sharing that story.
Oh Heidi, you've never been on the other side. Well, yeah I have. I was recently in an uncomfortable situation myself. I was with an acquintance who clearly just needed to blurt it out and have someone there for her. I was uncomfortable. Really uncomfortable actually. I paused and then said "something"...and she started to cry. I recognized the type of tears that were flowing and stayed put as long as she needed me. We didn't say anything else to each other, we were just together.
That my friends, is comfort.
Let me clarify. NOOOOOOOOOOOO.
I've been thinking about writing a "What to say to someone when their life doesn't fit the mold, and then some" script. Seriously. I have come up with a few pointers, but not an actual script. Because another special needs parent may not want to hear what I want to hear, if that makes sense. But what I have gathered, in this "new-age" idea of embracing our children and pushing them not to their limits, but to their POTENTIAL, is that we don't want to be ignored.
I was raised to tell the truth, and while I fell short of doing so when I was younger (don't we all), I am quickly making up for that stint in my journey as a mom. AJ is complex. His story is not simple. It took me a good year to share his story in just one sentence. Add in that I am naturally a very detailed storyteller, you've got a motor-mouth on your hands. Most recently I've found myself refraining (I know, exciting right?!) from sharing things when people have made casual comments....
And it kills me.
I feel like I am portraying AJ as an incomplete person. This may sound wildly strange to everyone reading this, but its true. And then I thought about how I think part of my sharing AJ's story, with details, is my way of trying to help people understand. Knowledge is power, right? I dug further into my own noggin and realized that sharing AJ's truth helps me heal the wound that was created when no one told me what was going on with him.
Didn't I say I was going to talk about all of you? Gee Whiz.
It is no secret that sharing AJ's story, or anything, like "Hey, my kid had a seizure in the car last week and I called 911 on the side of the road," makes other people uncomfortable. But honestly, I encourage you to stop and sit in whatever words are spoken to you. Don't run, because you feel uncomfortable. Yes, I know it is shocking that I, the person sharing this devastating news, would realize that you are going to be uncomfortable.
But let's all think about this for a second. How long does your lack of comfort last? A few seconds? A few minutes? We may loom back into your brain every now and again, but do we dwell there? No. Be uncomfortable in that moment so that we, the people experiencing whatever was just said, can feel less isolated and less like a freak of the normal world.
People tell me, "We don't know what to say." Well, you can't fix it. So start from there. Don't try to fix it. But say something. At least something. "I don't even know what to say" is an EXCELLENT thing to say, if you don't know what to say. Why? Because you are aknowledging my world. Aknowledging my pain, my act of reaching out to you. Staring, or ignoring, crushes the heart. Ok, at least it crushes mine. Is it so much to ask you to be uncomfortable for a few seconds so I can feel some relief in numbers? I don't think so.
Being a special needs parent has given me a completely different outlook on life. It really makes me sad that I see so much selfishness...everywhere. It saddens me that AJ's "stuff" freaks people out. He's still AJ.
While I've posted before on how it is sometimes irritating to hear that this was "God's Plan" or His Purpose, or he won't give you more than you can handle...there is a reason that can be bothersome. I, as the person living this story that made you so uncomfortable for a few seconds, definitely feels like I've got more than I can handle. Those words don't act like magic fairy dust or ruby red slippers and make it all disappear. They don't make me feel better. Well, Heidi, you certainly have a crappy outlook on life, don't you? No, I don't. The Big Man Upstairs and I have been dukin' it out for a long time, and continue to do so. And no I'm not sharing that story.
Oh Heidi, you've never been on the other side. Well, yeah I have. I was recently in an uncomfortable situation myself. I was with an acquintance who clearly just needed to blurt it out and have someone there for her. I was uncomfortable. Really uncomfortable actually. I paused and then said "something"...and she started to cry. I recognized the type of tears that were flowing and stayed put as long as she needed me. We didn't say anything else to each other, we were just together.
That my friends, is comfort.
Wednesday, October 20, 2010
NOW
Well...
I considered an array of possibilities for the title of this post. And then I read a post on another blog, and stole the powerful three-letter word: NOW.
But for right now (pun intended) lets backtrack to yesterday...
I woke AJ up at 5am. He was up having a private VIP:M (Very Important Person: Myself) Party in his room for a few hours. Giggling and laughing like it was 2pm not 2am.
I had to keep him awake until 10am, which was when he has his EEG. His neurologists office just happened to have an EEG opening and time for his neurologist to see him...instead of two weeks from now. They cannot sedate, put under, do anything to kids to make them comatose during this test. Which would be so lovely. Medications will give false results on the EEG. So they sleep deprive children instead. Not so lovely.
I had thought to have him fall asleep in the car just as we pulled in (instead I was singing, pulling on his leg and trying like the dickens to keep him awake). Thank goodness I did not have him fall asleep. Our EEG experience began with a beyond wonderful EEG technician. She measure AJ's head with a fabric tape measure and make red marks on his head with a fun red pencil. Twenty minutes later, after she had colored on his head, placed the electrodes and wrapped his head with gauze, the EEG began. In this wonderful technician's many years of experience, she had never seen a child fight as much as AJ did. Most kids give in after the electrodes are on and fall asleep just in time for the EEG. Nooooot AJ.
He screamed bloody murder for over an hour and a half. Which complete unnerved me. I'm used to his crying. Believe me. But this blood curdling screaming gets to a person, especially as you are trying to keep his arms down and he's kicking you in the chest/neck, and eyeballs. AJ's tone makes him extremely strong when he's upset and the whole "hold me down while this lady does weird things to my head" sent him into a total sensory overload. I cried a bit while I struggled to hold him down-very unsuccessfully might I add. He was not able to have his implants on during the test, so we were in silent land, which also bothered me. I had no way, other than blowing softly on his face and limbs, to comfort him. Not only that, but the fact that he doesn't understand "this lady isn't hurting you, she's just putting stickers on your head, now go to sleep" is upsetting.
He did give us about 2 minutes of drowsy-laying and doing nothing toward the end, where she was able to get some good reading. The end of test featured a strobe light, which AJ was thrilled with. If she would have had the light going the whole time, he would have been perfect.
When we left, AJ had a huge grin on his face. He crashed in the car, just as I pulled in a drive-thru to get him some lunch. We returned to the clinic to see his neurologist and review his EEG results. AJ slept through the entire appointment, the whole car ride home, and finished his nap in his own bed. I wish I could have slept through the appointment....
AJ was diagnosed with Partial Epilepsy.
Partial because his EEG showed abnormalities on the right side of his brain, not both. Apparently, the abnormalities began almost immediately after the EEG test started. Great.
As his neurologist spoke, AJ's weight (he was sleeping on me) seemed to get heavier and heavier. It was harder to breath. And the tears began. I quickly wiped them, hoping his neuro wouldn't look up. And he did. He has such a kind spirit, his kindness made my tear ducts smile and produce more tears.
While he was typing away, he asked how AJ's language was coming along. More tears. I had asked him via a phone message exactly where AJ's brain injury (CP) was according to the MRI he had done just two months after we brought him home. I asked him for more details as to exactly where everything happened, to which he pulled out this awesome 3-D chart and showed me how my kids brain is messed up.
I was thrilled. To know where the input, output, understand of language and all of that just amazed me. It further led to the never-ending puzzle as to why AJ is not talking. But let save that that for another post and stick to the epilepsy stuff.
AJ's seizure last week (yes, NOW it is regarded as an actual seizure) was the first that we noticed. His neurologist's thought is that per the massive abnormal activity on AJ's EEG, he's had other seizures that have been "clinically silent". His seizures may have been and will mostly be staring off into space, licking his lips, weird tongue movements (I'm thinking lizard like-ewwwwww).
Which made me pause and begin thinking about every single weird thing AJ has done since I've known him.
And then I stopped. Because his neurologist started telling me important things that I needed to pay attention to. Like we are starting him on the anti-seizure medication Keppra and will have Diastat to use in an emergency situation...like if he ever has a seizure that lasts more than 5 minutes.
I left the appointment full of information, exhausted, and started blubbering as I was carrying my newly epileptic baby out of the clinic. I put AJ in the car and bawled all the way home. By the time I got home I was able to make phone calls without crying, which is my usual pattern, by the way. Freak out, cry, cry, cry some more, snap out of it and move on to the fact, talk about other things, collapse in exhaustion. I spoke to a new friend, who is very familiar with seizures, etc. Our conversation calmed me and turned my attention to other things other than the fact my kid was just diagnosed with yet another "thing". My Mom brought dinner over for Jer and I and stayed with me until it was time for me to crawl in bed. Thanks Mom!
AJ's school staff was absolutely wonderful this morning. When I walked in this greeted me with a "Mommy Hug" and we chatted about anything specific I wanted them to do. My directions: proceed as usual. Of course I talked to the school nurse, filled out required paperwork, gave her AJ's new emergency medication and spent most of the morning on the phone, but that all comes with the territory and I was not afraid of it. I had already spent too many seconds in the neuro's office trying to analyze every weird thing AJ has ever done. Was it a seizure? I don't know. And I can't care. I just can't. Because I can't change it.
I was (somehow) smart enough to figure out that AJ was not acting normal in the car last week. That led to us finding out he's a kid that has seizures. Let's treat the seizures with anti-seizure meds and keep an extra eye on him. Not a panicky eye. Just an extra one. Wouldn't that be nice if Mom's came with multiple eyes (in addition to the ones in the back of our heads)??
Today was our first real "regular" day. A normal day in what I've deemed our "crazy normal". I looked forward to getting up, taking AJ to school, having time to myself (which I filled with Starbucks and a bit of retail therapy), picking AJ up, coming home, eating lunch, jetting off to a PT/OT co-treatment, stopping at the store, and coming home. It did my soul some good.
I hope this post does not come across as me stating I am honkey-doorey with my kid having seizures. Because I am not. It is NOT COOL. We don't need any more excitement over here. Trust me. But, what else am I supposed to do? What are we supposed to do?
How does one handle their child being deaf, having cerebral palsy, developmental delays, and now epilepsy, and muddling through her husband being diagnosed with MS? I don't know. How do I begin to digest whats happening with Jeremy while I need to support him and at the same time I need his support with whats going on with AJ? How do I feel about losing my sitter because she accepted an awesome nursing position? Devastated and ecstatic at the same time. How do I feel about trying to sell our house in this market with everything else going on? Freaked out, but I know it must be done. How am I dealing with all this? I have no idea. But I'm about to find out.
While on the phone last night, I realized that while I have tried to cut a lot of time-wasters from my life, all of the issues in our life have become time-wasters. I'm afraid of so many things I've lost count. Afraid and full of fear that more things will keep happening. And while I've been struggling with this, yesterday happened. More bad things. But bad things don't mean I stop living. Bad things put you into a survival mode. I think I've been in survival mode way too long. I need to live, not just survive. We as a family need to live, not just survive. I haven't figured out how, but its on my list of things I'm determined to do.
I'm so worried about what might happen I'm not living in the NOW. AJ's here now, and I'm so blessed to be his mother. This morning his smiles and giggles all the way to school gave me such joy. Despite all of his challenges in his short life so far, he continues to be my smiling, giggling, handsome litle man. I'm wasting time. Everything seemed to be clearer and more vibrant today (it reminded me of the Twilight book Breaking Dawn when Bella wakes up as a vampire and describes how everything is so clear and crisp). I noticed things I hadn't before and appreciated those in my life so much more. It felt a little weird, but I welcomed the fresh outlook. While I was in a craft store, they played the song "Cherish" by Kool & The Gang. While I would normally call the song cheesy and giggle that it was on, the lyrics spoke to me.
And then I read the most recent post on No Peas which ended with this quote:
There is no time other than now. We are not, contrary to what we think, "going" anywhere. It will never be more rich in some other moment than in this one. Although we may imagine that some future moment will be more pleasant, or less, than this one, we can't really know. But whatever the future brings, it will not be what you expect, or what you think, and when it comes, it will be NOW too. It too will be a moment that can be very easily missed, just as easily missed as this one.
Right now, I'm going to bed.
I considered an array of possibilities for the title of this post. And then I read a post on another blog, and stole the powerful three-letter word: NOW.
But for right now (pun intended) lets backtrack to yesterday...
I woke AJ up at 5am. He was up having a private VIP:M (Very Important Person: Myself) Party in his room for a few hours. Giggling and laughing like it was 2pm not 2am.
I had to keep him awake until 10am, which was when he has his EEG. His neurologists office just happened to have an EEG opening and time for his neurologist to see him...instead of two weeks from now. They cannot sedate, put under, do anything to kids to make them comatose during this test. Which would be so lovely. Medications will give false results on the EEG. So they sleep deprive children instead. Not so lovely.
I had thought to have him fall asleep in the car just as we pulled in (instead I was singing, pulling on his leg and trying like the dickens to keep him awake). Thank goodness I did not have him fall asleep. Our EEG experience began with a beyond wonderful EEG technician. She measure AJ's head with a fabric tape measure and make red marks on his head with a fun red pencil. Twenty minutes later, after she had colored on his head, placed the electrodes and wrapped his head with gauze, the EEG began. In this wonderful technician's many years of experience, she had never seen a child fight as much as AJ did. Most kids give in after the electrodes are on and fall asleep just in time for the EEG. Nooooot AJ.
He screamed bloody murder for over an hour and a half. Which complete unnerved me. I'm used to his crying. Believe me. But this blood curdling screaming gets to a person, especially as you are trying to keep his arms down and he's kicking you in the chest/neck, and eyeballs. AJ's tone makes him extremely strong when he's upset and the whole "hold me down while this lady does weird things to my head" sent him into a total sensory overload. I cried a bit while I struggled to hold him down-very unsuccessfully might I add. He was not able to have his implants on during the test, so we were in silent land, which also bothered me. I had no way, other than blowing softly on his face and limbs, to comfort him. Not only that, but the fact that he doesn't understand "this lady isn't hurting you, she's just putting stickers on your head, now go to sleep" is upsetting.
He did give us about 2 minutes of drowsy-laying and doing nothing toward the end, where she was able to get some good reading. The end of test featured a strobe light, which AJ was thrilled with. If she would have had the light going the whole time, he would have been perfect.
When we left, AJ had a huge grin on his face. He crashed in the car, just as I pulled in a drive-thru to get him some lunch. We returned to the clinic to see his neurologist and review his EEG results. AJ slept through the entire appointment, the whole car ride home, and finished his nap in his own bed. I wish I could have slept through the appointment....
AJ was diagnosed with Partial Epilepsy.
Partial because his EEG showed abnormalities on the right side of his brain, not both. Apparently, the abnormalities began almost immediately after the EEG test started. Great.
As his neurologist spoke, AJ's weight (he was sleeping on me) seemed to get heavier and heavier. It was harder to breath. And the tears began. I quickly wiped them, hoping his neuro wouldn't look up. And he did. He has such a kind spirit, his kindness made my tear ducts smile and produce more tears.
While he was typing away, he asked how AJ's language was coming along. More tears. I had asked him via a phone message exactly where AJ's brain injury (CP) was according to the MRI he had done just two months after we brought him home. I asked him for more details as to exactly where everything happened, to which he pulled out this awesome 3-D chart and showed me how my kids brain is messed up.
I was thrilled. To know where the input, output, understand of language and all of that just amazed me. It further led to the never-ending puzzle as to why AJ is not talking. But let save that that for another post and stick to the epilepsy stuff.
AJ's seizure last week (yes, NOW it is regarded as an actual seizure) was the first that we noticed. His neurologist's thought is that per the massive abnormal activity on AJ's EEG, he's had other seizures that have been "clinically silent". His seizures may have been and will mostly be staring off into space, licking his lips, weird tongue movements (I'm thinking lizard like-ewwwwww).
Which made me pause and begin thinking about every single weird thing AJ has done since I've known him.
And then I stopped. Because his neurologist started telling me important things that I needed to pay attention to. Like we are starting him on the anti-seizure medication Keppra and will have Diastat to use in an emergency situation...like if he ever has a seizure that lasts more than 5 minutes.
I left the appointment full of information, exhausted, and started blubbering as I was carrying my newly epileptic baby out of the clinic. I put AJ in the car and bawled all the way home. By the time I got home I was able to make phone calls without crying, which is my usual pattern, by the way. Freak out, cry, cry, cry some more, snap out of it and move on to the fact, talk about other things, collapse in exhaustion. I spoke to a new friend, who is very familiar with seizures, etc. Our conversation calmed me and turned my attention to other things other than the fact my kid was just diagnosed with yet another "thing". My Mom brought dinner over for Jer and I and stayed with me until it was time for me to crawl in bed. Thanks Mom!
AJ's school staff was absolutely wonderful this morning. When I walked in this greeted me with a "Mommy Hug" and we chatted about anything specific I wanted them to do. My directions: proceed as usual. Of course I talked to the school nurse, filled out required paperwork, gave her AJ's new emergency medication and spent most of the morning on the phone, but that all comes with the territory and I was not afraid of it. I had already spent too many seconds in the neuro's office trying to analyze every weird thing AJ has ever done. Was it a seizure? I don't know. And I can't care. I just can't. Because I can't change it.
I was (somehow) smart enough to figure out that AJ was not acting normal in the car last week. That led to us finding out he's a kid that has seizures. Let's treat the seizures with anti-seizure meds and keep an extra eye on him. Not a panicky eye. Just an extra one. Wouldn't that be nice if Mom's came with multiple eyes (in addition to the ones in the back of our heads)??
Today was our first real "regular" day. A normal day in what I've deemed our "crazy normal". I looked forward to getting up, taking AJ to school, having time to myself (which I filled with Starbucks and a bit of retail therapy), picking AJ up, coming home, eating lunch, jetting off to a PT/OT co-treatment, stopping at the store, and coming home. It did my soul some good.
I hope this post does not come across as me stating I am honkey-doorey with my kid having seizures. Because I am not. It is NOT COOL. We don't need any more excitement over here. Trust me. But, what else am I supposed to do? What are we supposed to do?
How does one handle their child being deaf, having cerebral palsy, developmental delays, and now epilepsy, and muddling through her husband being diagnosed with MS? I don't know. How do I begin to digest whats happening with Jeremy while I need to support him and at the same time I need his support with whats going on with AJ? How do I feel about losing my sitter because she accepted an awesome nursing position? Devastated and ecstatic at the same time. How do I feel about trying to sell our house in this market with everything else going on? Freaked out, but I know it must be done. How am I dealing with all this? I have no idea. But I'm about to find out.
While on the phone last night, I realized that while I have tried to cut a lot of time-wasters from my life, all of the issues in our life have become time-wasters. I'm afraid of so many things I've lost count. Afraid and full of fear that more things will keep happening. And while I've been struggling with this, yesterday happened. More bad things. But bad things don't mean I stop living. Bad things put you into a survival mode. I think I've been in survival mode way too long. I need to live, not just survive. We as a family need to live, not just survive. I haven't figured out how, but its on my list of things I'm determined to do.
I'm so worried about what might happen I'm not living in the NOW. AJ's here now, and I'm so blessed to be his mother. This morning his smiles and giggles all the way to school gave me such joy. Despite all of his challenges in his short life so far, he continues to be my smiling, giggling, handsome litle man. I'm wasting time. Everything seemed to be clearer and more vibrant today (it reminded me of the Twilight book Breaking Dawn when Bella wakes up as a vampire and describes how everything is so clear and crisp). I noticed things I hadn't before and appreciated those in my life so much more. It felt a little weird, but I welcomed the fresh outlook. While I was in a craft store, they played the song "Cherish" by Kool & The Gang. While I would normally call the song cheesy and giggle that it was on, the lyrics spoke to me.
And then I read the most recent post on No Peas which ended with this quote:
There is no time other than now. We are not, contrary to what we think, "going" anywhere. It will never be more rich in some other moment than in this one. Although we may imagine that some future moment will be more pleasant, or less, than this one, we can't really know. But whatever the future brings, it will not be what you expect, or what you think, and when it comes, it will be NOW too. It too will be a moment that can be very easily missed, just as easily missed as this one.
Right now, I'm going to bed.
Saturday, October 16, 2010
Bring On The Tears...
This morning, my husband turn on ESPN, which already had coverage of the Badger game today. Mind you, the game is tonight.
Anyhow, that "story" voice came on and immediately caught my attention. I bawled for the next five minutes while the story of this little boy was broadcast straight into my heart. Props to ESPN for making me cry. This story, and the friendship born between a child and an athlete was truly amazing.
You can watch Jaxson's story, The Meaning of Friendship here:
http://www.youtube.com/watch?v=SzEpt2O1eQY
{ESPN does not allow embedding}
I also wanted to share the story of Team Hoyt. A father and son team that defy all odds. This father's love, I've never seen anything like it. I first heard about this duo when Ellen, from To the Max, wrote this post back in September. Please click on the link, read and watch the awe inspiring video. And Ellen, NO. You we're the last person on the planet to hear about these two...I think I was.
Anyhow, that "story" voice came on and immediately caught my attention. I bawled for the next five minutes while the story of this little boy was broadcast straight into my heart. Props to ESPN for making me cry. This story, and the friendship born between a child and an athlete was truly amazing.
You can watch Jaxson's story, The Meaning of Friendship here:
http://www.youtube.com/watch?v=SzEpt2O1eQY
{ESPN does not allow embedding}
I also wanted to share the story of Team Hoyt. A father and son team that defy all odds. This father's love, I've never seen anything like it. I first heard about this duo when Ellen, from To the Max, wrote this post back in September. Please click on the link, read and watch the awe inspiring video. And Ellen, NO. You we're the last person on the planet to hear about these two...I think I was.
These stories are gentle reminders that we all need each other.
Friday, October 15, 2010
"OoooooO OooooO"
Yesterday morning began like any other morning, with breakfast and the long ride to school. About half way there, I noticed AJ did not look right in the back seat. He looked dazed, like kids do when they first wake up in the morning. He was also blowing gigantic saliva bubbles and saliva was slowly dripping down the corner of his mouth.
I had to look back a few times to realize this was continuing...and rapidly pulled over. I jumped out of the car and opened his door, peeked at his eyes, which were pointed downward (again in that dazed eyes-half-open look). I ran back around the car and dialed the nurses station at our pediatricians office...yes I have it memorized.
The nurse, who know's me by name, recommended I called 911. Which is what I did after I hung up with her. By the time I hung up with the 911 dispatcher AJ was fine...beating on his favorite vibrating turtle toy and smiling/giggling. I think I was hyperventilating but I'm not exactly sure. A minute later, I heard the sirens and saw the police car come over the hill. I picked up a napkin to blow my nose and took 3 deep breaths. I was in no shape to talk or share vital information.
He opened AJ's door and took a peek at him, and then me, psycho crying mom. Of course, AJ looked fine. He instructed me to stay in the car until the ambulance arrived.
Suddenly I was outside, talking to one EMT while one other stood by for futher instruction and the other started her workup on AJ. He was not pleased a stethoscope was in his space. I shouted that the right coil of his implant was off and she promptly put it back on his head, as she had noticed them before I even said anything.
They took him, carseat and all, and strapped him onto the stretcher. I ran to the police car and told him I was leaving my car there...on the side of the road in the middle of nowhere. For some reason I had never noticed how far out we were are until that morning..... I hopped in the ambulance and buckled in. They decided to go "lights and sirens" since AJ has a history of CP. Seizure-CP-not good.
This was AJ's first ambulance ride...and it was also mine. Somehow I answered all the pertinent questions correctly, in between trying to stiffle my tears. What the heck was wrong with me? Why do I cry in front of strangers??? Weird.
They took AJ's blood sugar in the ambulance, which caused his finger to bleed the entire ride to the hospital. He was happy, except for the fact that the EMT was holding his finger to stop the bleeding. Thank goodness we took turtle with us....
I had conveniently parked about a mile before the freeway on ramp, so our ride into town was without complication. It was when we got off the freeway I felt what happens when cars/drivers DON'T move out of the way. This is my plea to all drivers: PLEASE PLEASE PLEASE pull-over for emergency vehicles. Ambulances learch in this crazy way that I can't even describe...especially when they are going "lights and sirens" and at a relatively high speed on city streets. I asked the EMT's if that was annoying, and they responded that it happens more than you think. And I quote, "People are in a hurry...their morning Starbucks absolutely cannot wait."
The look of frustration on his face saddened me. And definitely made me more aware and want to be more alert on the road. Then I was jolted back into the reality that I was in a freakin' ambulance, with my kid. I was so worried about how he would do in the ambulance without me. He couldn't even see me. I will say though, he probably would have gotten a kick out of riding behind the ambulance...he loves lights. The EMT's said they'd work on a transporter hook-up to the back...just for kids.
We arrived at Children's Hospital, where I learned one of the EMT's knew our house, knew Jeremy's grandparents, and was even familiar with Jer's Grandpa's horse collection. Small world. By the time we were at the hospital, my head was a bit clearer and felt a bit at home.
Long story short, we were there for two hours. They decided to run labs and see if he had an electrolyte imbalance. Ok....?? We sat around for two hours, which AJ was really good for, up until the last 1/2 hour. Thank goodness I brought his backpack with his lunch in it. We resorted to playing in the bathroom at the sink. He felt just fine, was playing all over the place and definitely wanted out of our little boxed in look-at-me-glass-doors room.
The labs came back normal and were discharged with "Possible Seizure", orders to follow-up with his neurologist for an EEG, and to give him plenty of fluids and rest.
Uh Oh. My car was 30+ miles away. Here I was with AJ, a carseat, turtle, a stuffed moose the EMTs gave AJ, his backpack, my purse, and our jackets. AJ's fan club (AKA the nurses station) waved goodbye as we were walking out. It was one of those days when I could not get a hold of anyone to come and get us. Luckily, a friend came and picked us up and drove us to my car. Taxi's do not drive out this far....
I was ready for a nap, but AJ was rarin' to go. I know he was mad when we got to the ER...because it wasn't school. Now that we were home, he was even more mad at me and had tons of pent up energy. Now how am I supposed to get him to rest?? He finally fell asleep about 8pm, after Dad came home to keep an eye on him. I took a hot bath and called it a night.
This morning, I thought I was going to have a heartattack the whole way to school. I'll be changing my route for the next few days at the very least. I must have turned around every five seconds to check on him. Wiggling his foot each time I saw him stare off. Panicky, tired, over-stressed Mom syndrome.
He was fine, but it literally took me five minutes to pull away from the front of school after I dropped him off. Driving was not my favorite activity today. I stayed in town near his school, because the idea of driving back and forth again did NOT appeal to me. I did a grocery shop, talked with a friend, and went back to school to pick him up. He had a good day, much to my relief. I took a different route home, which alleviated some of the "driving past the spot where we got into an ambulance yesterday" stress, but I was still on eggshells checking on him in route.
He had his 4-year check up this afternoon...which of course, was clear across town.
AJ weighed in at 25lbs 5 oz (which is a big gain) and 35 3/4 in tall (which is an entire inch taller!). All in all a good visit. Although I couldn't help but realize that we seem to have a pattern when visiting our peds office. The first time she ever saw AJ, we were in urgent care the day before....which was the day we brought him home.
One of her questions was if anything had changed in our family situation...which meant I had to share Jeremy's diagnosis. Which brought the diagnosis to the forefront of my mind for the rest of the day.
Oh, what am I talking about? Jeremy's has MS (multiple sclerosis). There will be more info on this to come. But not tonight.
And this is where I fold my cards. Where I completely fold. No more hands please. I may be a super mom, or whatever, I may be strong, I may be stronger than the average Jane, but seriously...Even I have limits. AJ seems to be just fine, Jeremy is doing well, but I am burned out. You wanna talk about pressure? Look into my eyes. And I'm owning it, the very best that I can. I have taken the last few days second by second. Because honestly, that's all I can do right now.
I had to look back a few times to realize this was continuing...and rapidly pulled over. I jumped out of the car and opened his door, peeked at his eyes, which were pointed downward (again in that dazed eyes-half-open look). I ran back around the car and dialed the nurses station at our pediatricians office...yes I have it memorized.
The nurse, who know's me by name, recommended I called 911. Which is what I did after I hung up with her. By the time I hung up with the 911 dispatcher AJ was fine...beating on his favorite vibrating turtle toy and smiling/giggling. I think I was hyperventilating but I'm not exactly sure. A minute later, I heard the sirens and saw the police car come over the hill. I picked up a napkin to blow my nose and took 3 deep breaths. I was in no shape to talk or share vital information.
He opened AJ's door and took a peek at him, and then me, psycho crying mom. Of course, AJ looked fine. He instructed me to stay in the car until the ambulance arrived.
Suddenly I was outside, talking to one EMT while one other stood by for futher instruction and the other started her workup on AJ. He was not pleased a stethoscope was in his space. I shouted that the right coil of his implant was off and she promptly put it back on his head, as she had noticed them before I even said anything.
They took him, carseat and all, and strapped him onto the stretcher. I ran to the police car and told him I was leaving my car there...on the side of the road in the middle of nowhere. For some reason I had never noticed how far out we were are until that morning..... I hopped in the ambulance and buckled in. They decided to go "lights and sirens" since AJ has a history of CP. Seizure-CP-not good.
This was AJ's first ambulance ride...and it was also mine. Somehow I answered all the pertinent questions correctly, in between trying to stiffle my tears. What the heck was wrong with me? Why do I cry in front of strangers??? Weird.
They took AJ's blood sugar in the ambulance, which caused his finger to bleed the entire ride to the hospital. He was happy, except for the fact that the EMT was holding his finger to stop the bleeding. Thank goodness we took turtle with us....
I had conveniently parked about a mile before the freeway on ramp, so our ride into town was without complication. It was when we got off the freeway I felt what happens when cars/drivers DON'T move out of the way. This is my plea to all drivers: PLEASE PLEASE PLEASE pull-over for emergency vehicles. Ambulances learch in this crazy way that I can't even describe...especially when they are going "lights and sirens" and at a relatively high speed on city streets. I asked the EMT's if that was annoying, and they responded that it happens more than you think. And I quote, "People are in a hurry...their morning Starbucks absolutely cannot wait."
The look of frustration on his face saddened me. And definitely made me more aware and want to be more alert on the road. Then I was jolted back into the reality that I was in a freakin' ambulance, with my kid. I was so worried about how he would do in the ambulance without me. He couldn't even see me. I will say though, he probably would have gotten a kick out of riding behind the ambulance...he loves lights. The EMT's said they'd work on a transporter hook-up to the back...just for kids.
We arrived at Children's Hospital, where I learned one of the EMT's knew our house, knew Jeremy's grandparents, and was even familiar with Jer's Grandpa's horse collection. Small world. By the time we were at the hospital, my head was a bit clearer and felt a bit at home.
Long story short, we were there for two hours. They decided to run labs and see if he had an electrolyte imbalance. Ok....?? We sat around for two hours, which AJ was really good for, up until the last 1/2 hour. Thank goodness I brought his backpack with his lunch in it. We resorted to playing in the bathroom at the sink. He felt just fine, was playing all over the place and definitely wanted out of our little boxed in look-at-me-glass-doors room.
The labs came back normal and were discharged with "Possible Seizure", orders to follow-up with his neurologist for an EEG, and to give him plenty of fluids and rest.
Uh Oh. My car was 30+ miles away. Here I was with AJ, a carseat, turtle, a stuffed moose the EMTs gave AJ, his backpack, my purse, and our jackets. AJ's fan club (AKA the nurses station) waved goodbye as we were walking out. It was one of those days when I could not get a hold of anyone to come and get us. Luckily, a friend came and picked us up and drove us to my car. Taxi's do not drive out this far....
I was ready for a nap, but AJ was rarin' to go. I know he was mad when we got to the ER...because it wasn't school. Now that we were home, he was even more mad at me and had tons of pent up energy. Now how am I supposed to get him to rest?? He finally fell asleep about 8pm, after Dad came home to keep an eye on him. I took a hot bath and called it a night.
This morning, I thought I was going to have a heartattack the whole way to school. I'll be changing my route for the next few days at the very least. I must have turned around every five seconds to check on him. Wiggling his foot each time I saw him stare off. Panicky, tired, over-stressed Mom syndrome.
He was fine, but it literally took me five minutes to pull away from the front of school after I dropped him off. Driving was not my favorite activity today. I stayed in town near his school, because the idea of driving back and forth again did NOT appeal to me. I did a grocery shop, talked with a friend, and went back to school to pick him up. He had a good day, much to my relief. I took a different route home, which alleviated some of the "driving past the spot where we got into an ambulance yesterday" stress, but I was still on eggshells checking on him in route.
He had his 4-year check up this afternoon...which of course, was clear across town.
AJ weighed in at 25lbs 5 oz (which is a big gain) and 35 3/4 in tall (which is an entire inch taller!). All in all a good visit. Although I couldn't help but realize that we seem to have a pattern when visiting our peds office. The first time she ever saw AJ, we were in urgent care the day before....which was the day we brought him home.
One of her questions was if anything had changed in our family situation...which meant I had to share Jeremy's diagnosis. Which brought the diagnosis to the forefront of my mind for the rest of the day.
Oh, what am I talking about? Jeremy's has MS (multiple sclerosis). There will be more info on this to come. But not tonight.
And this is where I fold my cards. Where I completely fold. No more hands please. I may be a super mom, or whatever, I may be strong, I may be stronger than the average Jane, but seriously...Even I have limits. AJ seems to be just fine, Jeremy is doing well, but I am burned out. You wanna talk about pressure? Look into my eyes. And I'm owning it, the very best that I can. I have taken the last few days second by second. Because honestly, that's all I can do right now.
Wednesday, October 13, 2010
Modifications
I seem to have this knack for finding things and making a mastermind plan to make them bigger, better, or different all together...
Especially when I pass the 'oh so conveniently located' $1 bins at Target. Or go to the $1 Store. Or shop any craft store with a $1 section. See where I am going with this?
Over the summer I bought these two books from the $1 bins at Target. I really loved the layout of the pictures, the whole sha-bang.
Especially when I pass the 'oh so conveniently located' $1 bins at Target. Or go to the $1 Store. Or shop any craft store with a $1 section. See where I am going with this?
Over the summer I bought these two books from the $1 bins at Target. I really loved the layout of the pictures, the whole sha-bang.
I've been wanting to really work on the ABCs and Numbers with AJ, so these were just perfect.
Things that are paper, particularly flimsy paper don't last too long, so I wanted to make them a bit more durable. I knew we'd be using these A LOT.
I removed the staples...
I removed the staples...
Cut everything at the crease...
Laminated each page, used a hole puncher, and added binder rings.
VOILA!
VOILA!
I also found these at another store...
I punched the cards out of the frames...
Laminated them...
TA-DA!
Monday, October 4, 2010
In Which I Am About To Be Surprised...
I've always wanted to start a blog post with "In Which". I love reading Jess' posts on her blog...not just because she's an awesome writer, but because she draws me in by starting each and every post with "In Which..."
Jeremy planned a vacation for just the two of us this weekend. He gave me the dates in August and told me we were flying somewhere, in the States. He arranged for his Mom to come in and watch AJ...even my own Mom is in on the whole surprise. I must say, they have all done an outstanding job at keeping the location of our journey a secret. Bravo people. Its driving me nuts!
If you know me, you know I don't do so well with surprises. I'm Type A, gotta know. Ya know?
I haven't been on a plane since we flew home with AJ. That wasn't the greatest experience and caused me some trauma. Nevertheless, Jeremy thought it was important that we fly somewhere with a relatively short distance (as far as flights go) before we fly 8+ hours for our anniversary trip in February. Good thinkin' hon.
I'm beginning to get excited about this weekend's surprise trip. While we've been on a few mini-getaways since becoming parents, we have never gotten on a plane and actually gone on vacation. We need it. That's all I'm sayin'.
I'm looking forward to the lack of thinking I plan on doing. I'm looking forward to a break. I'm looking forward to whatever it is we'll be doing. I'm looking forward to spending time with my husband. We'll be together, just the two of us, for over 3 days. We might just get sick of each other! Do I really think we will? No.
Warm weather he tells me. Pack for warm weather. Guess what? Sandals were on clearance when I went shopping today. Woot Woot.
I'm excited.
Jeremy planned a vacation for just the two of us this weekend. He gave me the dates in August and told me we were flying somewhere, in the States. He arranged for his Mom to come in and watch AJ...even my own Mom is in on the whole surprise. I must say, they have all done an outstanding job at keeping the location of our journey a secret. Bravo people. Its driving me nuts!
If you know me, you know I don't do so well with surprises. I'm Type A, gotta know. Ya know?
I haven't been on a plane since we flew home with AJ. That wasn't the greatest experience and caused me some trauma. Nevertheless, Jeremy thought it was important that we fly somewhere with a relatively short distance (as far as flights go) before we fly 8+ hours for our anniversary trip in February. Good thinkin' hon.
I'm beginning to get excited about this weekend's surprise trip. While we've been on a few mini-getaways since becoming parents, we have never gotten on a plane and actually gone on vacation. We need it. That's all I'm sayin'.
I'm looking forward to the lack of thinking I plan on doing. I'm looking forward to a break. I'm looking forward to whatever it is we'll be doing. I'm looking forward to spending time with my husband. We'll be together, just the two of us, for over 3 days. We might just get sick of each other! Do I really think we will? No.
Warm weather he tells me. Pack for warm weather. Guess what? Sandals were on clearance when I went shopping today. Woot Woot.
I'm excited.
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