I am very proud of my twin son. Even though his brother more than often gives him a hard time about everything, he still has the compassion to look out for his brother.
Yesterday, we had a bathroom incident at home, where my eldest had a terrible accident and didn't come let us know. Much to my saddened heart, my father-in-law was in the same room, and didn't catch on to the situation, or chose to ignore it, I don't care to ever know.
It was my 4 year old son who came to find me, sitting with my Wonderful Husband and my mother-in-law in the next room, who said that his brother didn't flush the toilet and didn't wipe his bottom.
Well, when I went to examine and resolve the problem, I saw the poor kid had a really upset stomach, which caused his pants to suffer too. How my father-in-law could have thought this was 'someone has stinky breath and needs to brush their teeth bad' as he loudly called out to all the kids, letting us overhear just a few minutes before, still boggles my mind and saddens my heart. My mother-in-law looked at us with the same surprise in her eyes as we both had, and said 'he must be joking with them.'
I helped my eldest get all cleaned up, while the whole time he was yelling at me that I was disrupting his play time...internally I was celebrating that he was being vocal with me about why he was frustrated. My inlaws scooted out the door, and I can't figure out if they caught on to what the real situation was...for as much as I know, they could have thought I was being rude and started the kids' baths without announcement...trying to hint for them to leave, which wasn't the situation at all.
Anyway, when I was tucking in my youngest son, I told him how proud I was of him for looking out for his brother. I assured him that we know it's not always fair that the eldest gives him a hard time, but that he is the best brother in the world for always helping him.
As a reward, I gave him 20 pennies for his reward jar...obviously helping your brother with a bathroom accident isn't on our 'list.' The highest 'paying' chore is only 5 coins. Boy, did he light up when I put 20 coins in his hand. Those coins were really well deserved.
I'm glad I can count on my son to help his brother...and not that we don't get help from my in-laws, because we do...but I'm still uncertain if they realize exactly what we are dealing with on a regular basis...I don't yet think they do, or they do and are just dealing with it differently...for my own sanity, I'm chosing to not care to know.
Thursday, May 31, 2012
Wednesday, May 30, 2012
Living with only what I need
This weekend I kicked off the summer holiday with a camping trip with my wonderful cousins and their friends. It's amazing I like camping - I hate bugs, and until last year I would have never fathomed that I would slightly like being outside for a few days. But I loved this weekend, and I think love doesn't even say how much I really truly enjoyed it.
Camping makes me feel like I'm justified in proving to myself that I can live a semi-simple life, that I'm not a priss. I'm not sure why I want to live a simple life, because I do like the 'finer' things in life...but I don't want to be tied to things, or stressed from things. I have enough stresses in my life that I don't think material objects deserve to give me any kind of stress...I have complete control over them and I'm taking control.
A short while back, in one of my magazines, I read about this woman who likes to live with only what she needs. I dig that, she seemed so cool and together. I try not to be envious of people, but I want to be like her. I think this simplicity goes along with a lot of things I gravitate to...organization, streamlining, purging. It's all about getting rid of the clutter, the things you don't use. The things are in your kitchen drawers, in your closet, in your garage. Those things you have 'just in case' you need them. Most of the time, you don't need them...so they are just taking up space in your life. Wonderful Husband wanted to buy a watermelon slicer (like an apple slicer/corer)...I said no, we have a Chef's knife (and a nice one at that).
I'm going to try to live with only what I need and use. I'm going to get rid of those clothes that don't fit and opt to live like the Europeans...get a few good quality pieces of clothes and a few trendy pieces...then wear them often. I have probably 10 items in my kitchen cooking drawer, you know, those spoons, spatulas, ladles...it feels good.
I'm going to continue to go with it.
Camping makes me feel like I'm justified in proving to myself that I can live a semi-simple life, that I'm not a priss. I'm not sure why I want to live a simple life, because I do like the 'finer' things in life...but I don't want to be tied to things, or stressed from things. I have enough stresses in my life that I don't think material objects deserve to give me any kind of stress...I have complete control over them and I'm taking control.
A short while back, in one of my magazines, I read about this woman who likes to live with only what she needs. I dig that, she seemed so cool and together. I try not to be envious of people, but I want to be like her. I think this simplicity goes along with a lot of things I gravitate to...organization, streamlining, purging. It's all about getting rid of the clutter, the things you don't use. The things are in your kitchen drawers, in your closet, in your garage. Those things you have 'just in case' you need them. Most of the time, you don't need them...so they are just taking up space in your life. Wonderful Husband wanted to buy a watermelon slicer (like an apple slicer/corer)...I said no, we have a Chef's knife (and a nice one at that).
I'm going to try to live with only what I need and use. I'm going to get rid of those clothes that don't fit and opt to live like the Europeans...get a few good quality pieces of clothes and a few trendy pieces...then wear them often. I have probably 10 items in my kitchen cooking drawer, you know, those spoons, spatulas, ladles...it feels good.
I'm going to continue to go with it.
Thursday, May 24, 2012
I am still really behind
It's been about a week, and I can tell you, that I'm still way behind. Maybe even further behind and it's a terrible feeling. I'm in this war with myself with doing things that are fun and good, and getting myself organized for that calm feeling every type-a personality person requires to function regularly.
The boys socks are still not put away, laundry is still in piles (clean & dirty), toys are picked up thanks to Wonderful Husband, bills are unpaid, groceries were not bought this weekend, packing for camping this weekend is not done...work...oh yea...work.
I was going to get on top of things this weekend, but jumped ship and went to the White Sox versus Cubs game with my sister after she called with a last minute opportunity to join her. How could I pass it? I couldn't! So, I enjoyed the day with her, went out for dinner, and Wonderful Husband picked up all the toys, bathed the kids and put them to bed.
Today I felt like absolute crap - I forgot the eldest's lunch. We have money on his hot lunch account, but he prefers to have a sack lunch every day. Also, when you get a hot lunch, it has to be 'ordered' in the morning so they have enough for all the students.
I was behind again this morning (no surprise), when my mom picked up the eldest, I sent him without a lunch. "I'll be at his school this morning to volunteer, I'll bring it then." were my closing words.
Well, time got away from me. Suddenly it was 9:35 & I needed to shower and get to school by 9:45. Yes, even shower. I got out the door at 9:44, to school at 9:48. I played these reading games with 5 groups of the special ed kids, which ends when the lunch bell rings. BRRRR says the bell. OH MY GOSH! I FORGOT HIS LUNCH!
My child, who is so sensitive, has one teacher's aide run down to the cafeteria to see if they can add a hot lunch. The teacher hands me a pop-tart (her arsenal of back ups for those students who don't have a lunch), and I see my son look in his backpack with utter confusion as to where his lunch box is. I was proud of him, he didn't cry, get upset or anything. We got it all worked out.
It's only 11:30 on Thursday and I feel like I've already had a full day and there is a lot more on my dance card. This makes me feel sorry for myself, I will admit. I know it's my choice to keep up my career and have a family, but experiencing consecutive days, even weeks, like this has me seriously contemplating if it's really worth it in the long run.
The jury is still out. Let's see what happens over summer break where there hopefully a bit less to balance. It was just about this time last year that I hit my rock bottom, so maybe it's just the 'season.' Let's hope this week is rock bottom, because once you are there...the only place there is to go is up.
The boys socks are still not put away, laundry is still in piles (clean & dirty), toys are picked up thanks to Wonderful Husband, bills are unpaid, groceries were not bought this weekend, packing for camping this weekend is not done...work...oh yea...work.
I was going to get on top of things this weekend, but jumped ship and went to the White Sox versus Cubs game with my sister after she called with a last minute opportunity to join her. How could I pass it? I couldn't! So, I enjoyed the day with her, went out for dinner, and Wonderful Husband picked up all the toys, bathed the kids and put them to bed.
Today I felt like absolute crap - I forgot the eldest's lunch. We have money on his hot lunch account, but he prefers to have a sack lunch every day. Also, when you get a hot lunch, it has to be 'ordered' in the morning so they have enough for all the students.
I was behind again this morning (no surprise), when my mom picked up the eldest, I sent him without a lunch. "I'll be at his school this morning to volunteer, I'll bring it then." were my closing words.
Well, time got away from me. Suddenly it was 9:35 & I needed to shower and get to school by 9:45. Yes, even shower. I got out the door at 9:44, to school at 9:48. I played these reading games with 5 groups of the special ed kids, which ends when the lunch bell rings. BRRRR says the bell. OH MY GOSH! I FORGOT HIS LUNCH!
My child, who is so sensitive, has one teacher's aide run down to the cafeteria to see if they can add a hot lunch. The teacher hands me a pop-tart (her arsenal of back ups for those students who don't have a lunch), and I see my son look in his backpack with utter confusion as to where his lunch box is. I was proud of him, he didn't cry, get upset or anything. We got it all worked out.
It's only 11:30 on Thursday and I feel like I've already had a full day and there is a lot more on my dance card. This makes me feel sorry for myself, I will admit. I know it's my choice to keep up my career and have a family, but experiencing consecutive days, even weeks, like this has me seriously contemplating if it's really worth it in the long run.
The jury is still out. Let's see what happens over summer break where there hopefully a bit less to balance. It was just about this time last year that I hit my rock bottom, so maybe it's just the 'season.' Let's hope this week is rock bottom, because once you are there...the only place there is to go is up.
Friday, May 18, 2012
Woah...am I behind
Balancing life has been pretty hard lately. I have been holding up to some of my new year's resolutions: doing only fun things, exercising daily, not biting my nails. But lately trying to fulfil the normal duties of life have been dropping off my balance pole in a very bad way. It's not necessarily terrible that I'm neglecting chores...instead of cleaning the house we went out for dinner as a family last night and still managed to give the kids baths, so I'm not neglecting all chores (at least I'm prioritizing).
But here is an example of things I'm slacking with: There are no socks in either of my son's sock drawers. Paperwork is scattered all over my kitchen. In my bedroom sits 7 overflowing laundry baskets filled with clean clothes that need to be put away. Last night I managed to get to the local nursery, but now 2 flats of flowers are sitting unpotted in my flower bed calling my name. Wrinkled clothes are sitting on an ironing board for about a month waiting to be pressed and hung. The IEP docs are hanging over my head to be properly filed and recorded. Toys all over. Appointments need to be made with a family psychologist to help us deal with parenting someone with special needs. Toys all over. My checkbook needs balancing. Toys...did I mention how they are all over? Oh...yea, let's not forget that there is work. Right...my career!
Instead of dealing with the sockless drawers, I am holding true to doing only fun things...I mean, that is what life is all about, right? I can always fish out a clean pair from one of the laundry baskets when needed. So tonight I'm going to watch my son's tee ball game, then take the twins to see their cousin's 8th grade school play. If I died tomorrow, I'd be happy with doing those things instead of having paperwork filed right and socks in their place.
But my, oh my...do I feel behind.
But here is an example of things I'm slacking with: There are no socks in either of my son's sock drawers. Paperwork is scattered all over my kitchen. In my bedroom sits 7 overflowing laundry baskets filled with clean clothes that need to be put away. Last night I managed to get to the local nursery, but now 2 flats of flowers are sitting unpotted in my flower bed calling my name. Wrinkled clothes are sitting on an ironing board for about a month waiting to be pressed and hung. The IEP docs are hanging over my head to be properly filed and recorded. Toys all over. Appointments need to be made with a family psychologist to help us deal with parenting someone with special needs. Toys all over. My checkbook needs balancing. Toys...did I mention how they are all over? Oh...yea, let's not forget that there is work. Right...my career!
Instead of dealing with the sockless drawers, I am holding true to doing only fun things...I mean, that is what life is all about, right? I can always fish out a clean pair from one of the laundry baskets when needed. So tonight I'm going to watch my son's tee ball game, then take the twins to see their cousin's 8th grade school play. If I died tomorrow, I'd be happy with doing those things instead of having paperwork filed right and socks in their place.
But my, oh my...do I feel behind.
Thursday, May 17, 2012
My niece has arrived
She's here, she's cute & she's ready to come home today. The day she was born there was going to be a huge storm in Chicago and we heard the emergency broadcast on the TV suddenly in the early evening. Wonderful Husband and I both jotted into the room to check it out.
There was an alert of terrible thunderstorms with very high and dangerous winds, but all on the opposite side of the city than we are. Wonderful Husband was pretty funny...he commented that if we were ever going to have a tornado, today would be the day...remember what happened with the record blizzard at their eldest's birth?
Luckily there was no tornado, besides the little bundle of joy's newborn demands of her parents, and this time I go to do all the things that I couldn't before...send flowers, etc.
Now for all the fun time to spend with the newest addition to our family. Funny how the youngest kid is only 14.5 months old...I feel like we haven't had a 'baby' for a while now.
There was an alert of terrible thunderstorms with very high and dangerous winds, but all on the opposite side of the city than we are. Wonderful Husband was pretty funny...he commented that if we were ever going to have a tornado, today would be the day...remember what happened with the record blizzard at their eldest's birth?
Luckily there was no tornado, besides the little bundle of joy's newborn demands of her parents, and this time I go to do all the things that I couldn't before...send flowers, etc.
Now for all the fun time to spend with the newest addition to our family. Funny how the youngest kid is only 14.5 months old...I feel like we haven't had a 'baby' for a while now.
Tuesday, May 15, 2012
Anxiously awaiting the arrival of my new niece
Today my sister is being induced to delivery her second baby. She's at the hospital right now as I'm typing.
The funny thing about my middle sister is she is very confident and drives things how she wants and needs. So yesterday, I called her twice to tell her good luck and texted her once this morning to say we loved her. Not surprisingly, she didn't respond to any of them. I know she didn't want to be bothered. And I'm sure it doesn't help when your older sister keeps asking if you are nervous...ugh, sometimes I just can't help myself.
I used to get offended when she never called me back, but now I have come to realize and trust this is just her personality. I have to believe that she liked the calls, the texts, and the support. I know she knows I'm thinking about her, praying for her and the baby's health, and am super excited that she will be a mom for the second time.
She's a really good mom, it seems to come very natural to her. I have yet to see her 'sweat' with anything with my one year old niece. I hope this time balancing two kids comes just as easy to her (or from an outside perspective, seems like she finds it all easy).
Oh the wait! If only I could get an update on what is happening. It's a fun anxiousness where I am so excited to hear when she is born, how my sister is doing, and what my new niece is named!
I hope I remember today just as much as I recall all the other baby's births in my life. It's so fun to have the phone tree going, the tight-chested anticipation all day, and the eagerness to get the phone call it's all done!
Today I'm wearing my green 'Celebrating O'Donnell' tee shirt, sitting at my kitchen table on a gorgeous sunny day, next to a vase of peonies from my garden that smell glorious, which are tucked inside a nice bouquet of flowers I got from this same sister on Mother's Day, all displayed in a beautiful Tiffany vase we received for our wedding from my uncle. I'm working against a deadline at work, trying to get things done, waiting for a phone call from the specialist dentist for the 'next steps'. I wonder what I'll remember next year as her one year birthday arrives...I'm sure I'll remember how I was excited, waiting all day, that it was a gorgeous sunny day, & probably got all choked up and teary eyed as I always do when I get that call that she's here.
The funny thing about my middle sister is she is very confident and drives things how she wants and needs. So yesterday, I called her twice to tell her good luck and texted her once this morning to say we loved her. Not surprisingly, she didn't respond to any of them. I know she didn't want to be bothered. And I'm sure it doesn't help when your older sister keeps asking if you are nervous...ugh, sometimes I just can't help myself.
I used to get offended when she never called me back, but now I have come to realize and trust this is just her personality. I have to believe that she liked the calls, the texts, and the support. I know she knows I'm thinking about her, praying for her and the baby's health, and am super excited that she will be a mom for the second time.
She's a really good mom, it seems to come very natural to her. I have yet to see her 'sweat' with anything with my one year old niece. I hope this time balancing two kids comes just as easy to her (or from an outside perspective, seems like she finds it all easy).
Oh the wait! If only I could get an update on what is happening. It's a fun anxiousness where I am so excited to hear when she is born, how my sister is doing, and what my new niece is named!
I hope I remember today just as much as I recall all the other baby's births in my life. It's so fun to have the phone tree going, the tight-chested anticipation all day, and the eagerness to get the phone call it's all done!
Today I'm wearing my green 'Celebrating O'Donnell' tee shirt, sitting at my kitchen table on a gorgeous sunny day, next to a vase of peonies from my garden that smell glorious, which are tucked inside a nice bouquet of flowers I got from this same sister on Mother's Day, all displayed in a beautiful Tiffany vase we received for our wedding from my uncle. I'm working against a deadline at work, trying to get things done, waiting for a phone call from the specialist dentist for the 'next steps'. I wonder what I'll remember next year as her one year birthday arrives...I'm sure I'll remember how I was excited, waiting all day, that it was a gorgeous sunny day, & probably got all choked up and teary eyed as I always do when I get that call that she's here.
Monday, May 14, 2012
I love Mother's Day
I had a great day yesterday and have for the past few years. Wonderful Husband does such a fantastic job letting Mother's Day be 'my day.' I also did not feel guilty in the least when I defer any demand from my trio to him, which he addresses without complaint, such as: "I'm reading the paper, go ask your dad if you can have a snack and juice."
I spent the day with my family, which I truly enjoy. My mother hosted brunch with all my siblings and my niece and nephew. We all brought food, relaxed, played with the kids, and shared our stories about my paternal grandmother, who we were explicitly honoring that day. I know my mom loved the day but this year I know my dad especially loved it too, talking and reminiscing about his mom.
After pigging out for the second time that day, we then commuted to my in laws, where we spent the next few hours eating well (again), having nice conversations, and celebrating the women in our lives.
My husband also managed to get me the most wonderful gifts:
> An Orchid
> A hula-hoop
> A invitation to go shopping up north to Lori's Shoes
I don't know how he manages to get gifts that fit perfect. I wish I had that same ability.
An Orchid...I like plants, but like I mentioned in my reflection about farming, I don't have the patience to care for them. I like to plant something in the ground, then make it fend for itself. Household container plants? They don't stand a chance...even the cute Mother's Day seedlings the kids all brought home, sad to say. But this orchid, a pretty yellow which will go great in my living room, only requires 3 ice cubes once a week. I can do that, right? Only time will tell.
A hula-hoop...twice a year I have a reunion with 2 college sorority sisters. My godson showed us in this last trip how he can hula-hoop so good. The six adults then spent the weekend awkwardly trying to hula hoop, surprising ourselves how hard it was. I was amazed at how sore my trunk was after that weekend...so I've wanted a hula hoop since. Last night, collectively, I think I hula-hooped for close to an hour. The boy twin was picking it up too, he managed to get it around his waist in at least two self-propelled circles. By the end of this week, he is amazing at everything he does (much like his father) and will probably be able to hula hoop.
An invitation to go shopping at Lori's Shoes...when we took our eldest to that special dentist on the north side of the city, we treated ourselves to brunch at a fantastic tapas restaurant. This neighborhood in Chicago is so nice, it's like an outdoor mall, but old-time with lots of great and some unique store fronts. We parked in front of a shoe store, where every women walking down the street was stopping in. The next night on some 'Chicago' show we were watching on TV, sure enough, that same store was profiled. So, he gave me the free for all to go there with an 'imaginary gift certificate.'
It was a great day & I'm feeling a bit hung over from it. Time to get my hula-hoop and my energy up...especially since all my indulgent eating!
I spent the day with my family, which I truly enjoy. My mother hosted brunch with all my siblings and my niece and nephew. We all brought food, relaxed, played with the kids, and shared our stories about my paternal grandmother, who we were explicitly honoring that day. I know my mom loved the day but this year I know my dad especially loved it too, talking and reminiscing about his mom.
After pigging out for the second time that day, we then commuted to my in laws, where we spent the next few hours eating well (again), having nice conversations, and celebrating the women in our lives.
My husband also managed to get me the most wonderful gifts:
> An Orchid
> A hula-hoop
> A invitation to go shopping up north to Lori's Shoes
I don't know how he manages to get gifts that fit perfect. I wish I had that same ability.
An Orchid...I like plants, but like I mentioned in my reflection about farming, I don't have the patience to care for them. I like to plant something in the ground, then make it fend for itself. Household container plants? They don't stand a chance...even the cute Mother's Day seedlings the kids all brought home, sad to say. But this orchid, a pretty yellow which will go great in my living room, only requires 3 ice cubes once a week. I can do that, right? Only time will tell.
A hula-hoop...twice a year I have a reunion with 2 college sorority sisters. My godson showed us in this last trip how he can hula-hoop so good. The six adults then spent the weekend awkwardly trying to hula hoop, surprising ourselves how hard it was. I was amazed at how sore my trunk was after that weekend...so I've wanted a hula hoop since. Last night, collectively, I think I hula-hooped for close to an hour. The boy twin was picking it up too, he managed to get it around his waist in at least two self-propelled circles. By the end of this week, he is amazing at everything he does (much like his father) and will probably be able to hula hoop.
An invitation to go shopping at Lori's Shoes...when we took our eldest to that special dentist on the north side of the city, we treated ourselves to brunch at a fantastic tapas restaurant. This neighborhood in Chicago is so nice, it's like an outdoor mall, but old-time with lots of great and some unique store fronts. We parked in front of a shoe store, where every women walking down the street was stopping in. The next night on some 'Chicago' show we were watching on TV, sure enough, that same store was profiled. So, he gave me the free for all to go there with an 'imaginary gift certificate.'
It was a great day & I'm feeling a bit hung over from it. Time to get my hula-hoop and my energy up...especially since all my indulgent eating!
Thursday, May 10, 2012
If only I could figure out the difference
Everyone woke up happy today. Gosh - I wish I could figure out what makes someone wake up on the right side of the bed versus the wrong side, even for myself.
There was nothing out of the ordinary yesterday...all the children even fell asleep pretty late.
Whatever it was, everyone woke up with a smile, was cooperative, and no one fought. One may ask...fought? They are only around each other for about 1 hour in the morning, but there is typically a scream, a fist thrown, a foot stepped on, or someone who went first brushing their teeth to someone else's protest.
If only I could have every day start out with three smiles and giggles throughout the house...man, would life be easy.
I suppose if I didn't have days that weren't so ideal, I wouldn't appreciate mornings like these, as I am today.
There was nothing out of the ordinary yesterday...all the children even fell asleep pretty late.
Whatever it was, everyone woke up with a smile, was cooperative, and no one fought. One may ask...fought? They are only around each other for about 1 hour in the morning, but there is typically a scream, a fist thrown, a foot stepped on, or someone who went first brushing their teeth to someone else's protest.
If only I could have every day start out with three smiles and giggles throughout the house...man, would life be easy.
I suppose if I didn't have days that weren't so ideal, I wouldn't appreciate mornings like these, as I am today.
Monday, May 7, 2012
Happy 1 year Anniversary
It has been one year since I started this blog and it has been fun for me to write in it. It started as an output for me, in trying to navigate just my daily obligations which were getting overwhelming. It was also an outlet I could use during the week, being able to see blogspot from work and also voice my opinions without my former manager nit-picking my every life decision (think...bringing a lunch versus buying it...or even from shopping at Aldi to what shoes I was wearing).
Reflecting on this year, I've moved from figuring out how to get to the train, go shopping, pack a lunch to bigger tasks seemingly to only focusing on my eldest and his special needs. I think I hardly mention my other two children. By no means do the twins not take any part of me (in good ways), like the fact that my daughter said she wanted to play 'Higengo Seek' this weekend, which still makes me laugh as I type it.
Right now my heart is very heavy, but at the same time it's light and hopeful. How can it even be both? My awesome cousin said to me today 'Every Shadow is made by a Light'...so I think this feeling has to be like that.
For the past six years we have been trying to 'figure out' what is making my eldest special. Every person we put him in front of thinks that 'there is something there.' The thing about genetics is that you'd think with science you can figure out everything...but it's really only a small portion of cases that are figured out, like Down Syndrome. The majority of genetic specialist patients are in the same limbo state like we are. Not that diagnosing anything will help with the approach of care, especially if it's something unique or rare since any kind of documentation probably wouldn't exist, but it's hard to be stuck in the unknown.
It was my mom who said that she wished she could know the future, but it was best she didn't. I agree with her. Being in the unknown makes you wish you knew what lies ahead, but if I knew what was ahead...I don't think I'd be brave enough to face it, or I'd be too scared that I wouldn't be able to handle it. Amazingly enough, for someone who doesn't like to have things unplanned...I do prefer this 'deal with it when it arrives' approach.
With all that reflecton, I'll share with you an update from the specialized dentist this weekend. First...he was WONDERFUL! He has credentials like none I've ever seen. He is so smart and truly good at what he does, in being a pediatric dentist and a thought leader. But, you can realize you are a rare and special case when you get face time with a person with such high accolades in only 4 business days. He even personally met us in the lobby (no nurse first), he took about 15 pictures of the eldest's teeth (actual pictures...not xrays), he is going to work with our doctors to get the proper work-ups done (he's calling them all). He's also going to send the pictures to his colleagues across the country for collaboration. Hmm...rare and special for sure...I'm going to see if in time I can recognize the eldest's smile in medical journals. He did state that this isn't the first time he's seen this, but our case is different. There are syndromes that cause the teeth to fall out, but not all of the characteristics fit us. He said most likely we'll often find ourselves in a grey area...he's right - how long has he known us?
What is happening though? He's driving! Holy cow, for once, I feel like this man actually wants to help us drive to resolution. I'm not the one having to do it all, but I'm not taking my eyes off the road for one second. He told us his job to help us figure out what is making our son's teeth fall out and what to do about it. He is also getting everyone together and making them do it. He actually told me he'd be treating the eldest like his own son. I've heard that before, but this time I really believe it. He gave us a timeframe and told me to call and yell at him if he's not adhering to it. He even mentioned that in time we'd probably be in front of the head of the children's hospital genetics. Okay - I'll take it. Give us only the best, but of course...rare and special cases get extra attention. I know we are special, but why do we have to be rare and special?
This is the light, this new wonderful doctor listening, paying attention, and working on our case. The shadow is that my son's teeth are all falling out. Yes, they are all falling out prematurely. Something in his body is making them fall out. Now, it is that doctor's job to figure out why and what do to about it. I'm happy he has entered our lives.
On a side-bar, I'm regretting sharing one medical report with the school. My son is small in stature, he has always been. The report I mentioned to them and they asked to copy for their records, notes he has a small pituitary gland. I'm confident their intentions are pure, but for some reason his teacher and the school nurse are honing in on this as if it's the core problem of all his problems. The thing is, it may be small, but it may not be small for him.
Just 2 school days ago, his teacher was trying to correlate his small pituitary gland as the cause of his loose tooth thinking it was calcium retention. Why she is trying to research this stuff boggles me and it's not helping me, or her, or my son. If I'm letting the research of the cause fall off my balance bar, I'd wish they would too...I don't want to own the responsibility of figuring out the cause of his problems. I only want to own the responsibility of getting him in front of the right professionals who can do it. And it seems like we are getting there.
I'm 6 years into this quest...and I'm pretty far. I've accomplished a lot in these 6 years, and even in this 1 year since the start of my blog.
I wonder how far we will be in 1 year from now, or 6 years from now...if only I had a crystal ball. Thank goodness I don't...time to focus on only today and getting to the end of today's tightrope feat.
Reflecting on this year, I've moved from figuring out how to get to the train, go shopping, pack a lunch to bigger tasks seemingly to only focusing on my eldest and his special needs. I think I hardly mention my other two children. By no means do the twins not take any part of me (in good ways), like the fact that my daughter said she wanted to play 'Higengo Seek' this weekend, which still makes me laugh as I type it.
Right now my heart is very heavy, but at the same time it's light and hopeful. How can it even be both? My awesome cousin said to me today 'Every Shadow is made by a Light'...so I think this feeling has to be like that.
For the past six years we have been trying to 'figure out' what is making my eldest special. Every person we put him in front of thinks that 'there is something there.' The thing about genetics is that you'd think with science you can figure out everything...but it's really only a small portion of cases that are figured out, like Down Syndrome. The majority of genetic specialist patients are in the same limbo state like we are. Not that diagnosing anything will help with the approach of care, especially if it's something unique or rare since any kind of documentation probably wouldn't exist, but it's hard to be stuck in the unknown.
It was my mom who said that she wished she could know the future, but it was best she didn't. I agree with her. Being in the unknown makes you wish you knew what lies ahead, but if I knew what was ahead...I don't think I'd be brave enough to face it, or I'd be too scared that I wouldn't be able to handle it. Amazingly enough, for someone who doesn't like to have things unplanned...I do prefer this 'deal with it when it arrives' approach.
With all that reflecton, I'll share with you an update from the specialized dentist this weekend. First...he was WONDERFUL! He has credentials like none I've ever seen. He is so smart and truly good at what he does, in being a pediatric dentist and a thought leader. But, you can realize you are a rare and special case when you get face time with a person with such high accolades in only 4 business days. He even personally met us in the lobby (no nurse first), he took about 15 pictures of the eldest's teeth (actual pictures...not xrays), he is going to work with our doctors to get the proper work-ups done (he's calling them all). He's also going to send the pictures to his colleagues across the country for collaboration. Hmm...rare and special for sure...I'm going to see if in time I can recognize the eldest's smile in medical journals. He did state that this isn't the first time he's seen this, but our case is different. There are syndromes that cause the teeth to fall out, but not all of the characteristics fit us. He said most likely we'll often find ourselves in a grey area...he's right - how long has he known us?
What is happening though? He's driving! Holy cow, for once, I feel like this man actually wants to help us drive to resolution. I'm not the one having to do it all, but I'm not taking my eyes off the road for one second. He told us his job to help us figure out what is making our son's teeth fall out and what to do about it. He is also getting everyone together and making them do it. He actually told me he'd be treating the eldest like his own son. I've heard that before, but this time I really believe it. He gave us a timeframe and told me to call and yell at him if he's not adhering to it. He even mentioned that in time we'd probably be in front of the head of the children's hospital genetics. Okay - I'll take it. Give us only the best, but of course...rare and special cases get extra attention. I know we are special, but why do we have to be rare and special?
This is the light, this new wonderful doctor listening, paying attention, and working on our case. The shadow is that my son's teeth are all falling out. Yes, they are all falling out prematurely. Something in his body is making them fall out. Now, it is that doctor's job to figure out why and what do to about it. I'm happy he has entered our lives.
On a side-bar, I'm regretting sharing one medical report with the school. My son is small in stature, he has always been. The report I mentioned to them and they asked to copy for their records, notes he has a small pituitary gland. I'm confident their intentions are pure, but for some reason his teacher and the school nurse are honing in on this as if it's the core problem of all his problems. The thing is, it may be small, but it may not be small for him.
Just 2 school days ago, his teacher was trying to correlate his small pituitary gland as the cause of his loose tooth thinking it was calcium retention. Why she is trying to research this stuff boggles me and it's not helping me, or her, or my son. If I'm letting the research of the cause fall off my balance bar, I'd wish they would too...I don't want to own the responsibility of figuring out the cause of his problems. I only want to own the responsibility of getting him in front of the right professionals who can do it. And it seems like we are getting there.
I'm 6 years into this quest...and I'm pretty far. I've accomplished a lot in these 6 years, and even in this 1 year since the start of my blog.
I wonder how far we will be in 1 year from now, or 6 years from now...if only I had a crystal ball. Thank goodness I don't...time to focus on only today and getting to the end of today's tightrope feat.
Friday, May 4, 2012
I want to live on a farm
The idea of a farmer's wife sounds great to me. Living off the land, no real time commitments, a slow life...I can see myself doing it, but at the same time I can't.
I think the appeal is the slow life, not having to rush anywhere, race to get out of the house, etc. With that said I don't think I'm patient enough to be a farmer.
I don't like to be tied down either...which is why we don't have another dog (and that isn't that much of a commitment). I met a woman downstate whose family owned a farm. Listening to her story about how they can never take a vacation since they have to find workers to tend to the farm made me just plain sad for them. Okay - that alone is enough for me to not want to live on a 'working' farm.
But what about just living on farm land? Not necessarily with animals, but kind of taking my life now and transplanting it on a few acres? Considering it I don't believe I'm patient enough to work with crops. No matter how much I try to garden in my suburban yard, I just don't like the amount of work to wait and see if the crop, flowers, or even just green plants took correctly. Writing this down makes me find that stupid common theme...failure. Shoot...art class, can you come any sooner to help me get over this fear?
Wonderful Husband and I think that we would like to live on a farm together. We talk about it often on our evening hang-out-on-the-front-porch dates. Lots of my coworkers live in Ohio on farms and still work in the tech industry. We could do that...but we'd be far from our family whose help we couldn't survive without. We also joke about how we would like to live in Hawaii. I think the joke isn't a joke...we both want to move to Hawaii but are too afraid to make the leap. I think my sister may be on board after her recent honeymoon too...maybe it's something for us to work on getting my whole family to move there together!
I think the ultimate goal is living the slower life...and with each other. Do you think we could make this happen in Chicago? I have to think about this and see what I come up with.
I think the appeal is the slow life, not having to rush anywhere, race to get out of the house, etc. With that said I don't think I'm patient enough to be a farmer.
I don't like to be tied down either...which is why we don't have another dog (and that isn't that much of a commitment). I met a woman downstate whose family owned a farm. Listening to her story about how they can never take a vacation since they have to find workers to tend to the farm made me just plain sad for them. Okay - that alone is enough for me to not want to live on a 'working' farm.
But what about just living on farm land? Not necessarily with animals, but kind of taking my life now and transplanting it on a few acres? Considering it I don't believe I'm patient enough to work with crops. No matter how much I try to garden in my suburban yard, I just don't like the amount of work to wait and see if the crop, flowers, or even just green plants took correctly. Writing this down makes me find that stupid common theme...failure. Shoot...art class, can you come any sooner to help me get over this fear?
Wonderful Husband and I think that we would like to live on a farm together. We talk about it often on our evening hang-out-on-the-front-porch dates. Lots of my coworkers live in Ohio on farms and still work in the tech industry. We could do that...but we'd be far from our family whose help we couldn't survive without. We also joke about how we would like to live in Hawaii. I think the joke isn't a joke...we both want to move to Hawaii but are too afraid to make the leap. I think my sister may be on board after her recent honeymoon too...maybe it's something for us to work on getting my whole family to move there together!
I think the ultimate goal is living the slower life...and with each other. Do you think we could make this happen in Chicago? I have to think about this and see what I come up with.
Tuesday, May 1, 2012
Sympathy, Encouragement, and a Hug
Yesterday I saw one of my favorite doctors, the eldest's ENT. She is a super smart doctor, seems like a fabulous mom (has twins...double bonus), and she really likes me (which I know is because I write things down & follow through on instructions). Okay, that may be bragging...or in a sense pretty bad with all things considered. Who on earth is a frequent flier at an Ear Nose & Throat doctor? You got it...THIS Lady. Sing it with me: Oh yeaaaahhh! I think I should have an elite card in my wallet...all together it is like having a fast-pass. I know the receptionist by name, I was able to book an appointment within 1 business day, and yesterday I was escorted to the exam room before someone who was in the lobby before me. Frequent flying has it's perks, indeed!
Well, at the ENT yesterday, we got all good news that the eldest's ears were fine. They both recovered well after an infection, where her A+ mom student actually did a bad job & didn't follow through with the full course of ear drops. Oh well...this time I may have gotten a D, but my overall GPA with her is still good. We lasted pretty long between appointments (4 months?). And the good news, I wasn't leaving the office with yet ANOTHER ear surgery planned for once!
BUT...
She took one look in his mouth at a tooth that is falling out and with a slightly shocked panic in her voice, said I have to take him to the dentist STAT. Okay - now I'm feeling pretty bad again...her normal A+ student, didn't follow the medication course and now also put off getting him to the dentist. I knew his tooth was falling out, I saw the gum line receding...but I thought, once the IEP is done, then once his ear infection is done...we'll work on the next thing: the tooth.
I think I should preface this second half by informing everyone that the eldest now has 6 teeth missing. In Kindergarten, most kids have lost 2 - 4 teeth...well, my guy has 6 all gone from trauma, specifically falling, starting when he was 22 months. I'll never forget when the first one happened because we were in Michigan on our annual family vacation. The downfall of all of this is that since the teeth have been gone for so long, there is not a fresh hole for the adult teeth to break through, so they will grow in later seeing he basically has to re-cut his teeth.
The falling out teeth, we assumed from trauma, wasn't going to be that big of an issue as long as the cuspids, or canine teeth, stay intact...essentially being the anchors for the molars. Well, I've told you I'm lucky...this time it's the cuspid that is falling out. Even though we think this comes from trauma, the progression of events is not immediately apparent. Say the tooth gets bumped and doesn't recover...the first thing that happens is a recessed gum line, then decay of the bone around the root, then the tooth will fall out or need extraction. We've been through it 6 times already...I was finally not the proactive advocate on this one...I knew there was nothing to do to prevent it...I purposely delayed. I think I'm getting just burnt out.
One reason I delayed is that we were considering about moving dentist practices because this one is costing us an arm and a leg being out of network. But, I figured I'm 3 blocks away, they already know him, he's a good dentist, and this is kind of an emergency. After the treatment and attention we received yesterday, I'm thinking we may even stay at his practice, even if he is out of network.
When I called, they got us in immediately...well, when the receptionist put me on hold and came back on, she asked where I was. My response was 'in your parking lot' It is hard to say no to someone who is sitting at your front door, so she had me come in.
I had to carry the eldest in like a baby in my arms (think sideways in my arms...not just carry). It pretty much sucks when you have to carry a 6 year old like a baby, especially in public...but the poor kid was crying hysterically when we pulled up, saw it was the dentist and not McDonalds, as he was asking to go. If I were him, I'd be upset at the change of plans too. This is what I meant when I say having a kid with special needs sure makes you have confidence...I am confident in myself enough to not care how others may judge me, if I'm doing 'works' for our situation at hand.
So, the eldest has to go back to the exam areas by himself...after flipping through many magazine pages, I was finally called back. The dentist was just sitting in front of the xray on the computer screen with his hand on his forehead. The way to know when you have a good doctor is this - he said he wants to refer us out. There is no reason that this tooth is falling out and he wanted to make sure that he wasn't missing something.
I shared a bit of our constant research and thanked him for being creative in his thinking. He has connections at Children's Memorial Hospital, with the former president who he was going to call and get me in front of as soon as possible. At this point, the eldest turned around in his chair and gave us both a big smile. Man, if I can say one thing...his smile, even as toothless as it is...lights up a room.
I thanked the dentist, went to shake his hand...and he said 'no, you get a hug.' It was sweet. He understood what we are going through and told me so. It's nice to have compassionate doctors who really want to help.
So, today he held up to his promise. Our dentist called me before 10 am, said how he talked with the former president of Children's Memorial last night and his secretary this morning, has sent them all our xrays electronically, and prepped them on our case. I then quickly got on the phone with the new guy's personal secretary, who is going to call me as soon as she talks with this new dentist, who is in Milwaukee speaking at a conference. I told her how much I appreciated the help and that we'd work with their schedule...all I need is about a 1 hour lead time to get there.
I'm pretty flattered that we are getting in front of this new dentist, with a fantastically impressive resume (I looked him up). Maybe he will be the one to help us figure out what is going on...at a minimum, he should be able to figure out what we should do next about the poor guy's teeth. But geesh...for us it seems that one thing always leads to another, it never just ends. At some point this week I'll be venturing downtown to yet another doctor's appointment, but not to worry...instead of stress, I kind of feel elite again getting face time with this guy...only the best doctors for the most 'curious and special' cases, right?
My dear friend always encourages me when I'm visiting yet ANOTHER doctor...she said I'M going to be the one to find out what is the cause of my eldest's special needs. I'm confident she is right & it helps fuel me spiritually. If we don't ever find out what the cause is, I'm okay with that, but I'll keep trying and I will be successful as long as I continue to get the sympathy, encouragement, and hugs from all the people in my life...family, friends, and even our doctors.
Well, at the ENT yesterday, we got all good news that the eldest's ears were fine. They both recovered well after an infection, where her A+ mom student actually did a bad job & didn't follow through with the full course of ear drops. Oh well...this time I may have gotten a D, but my overall GPA with her is still good. We lasted pretty long between appointments (4 months?). And the good news, I wasn't leaving the office with yet ANOTHER ear surgery planned for once!
BUT...
She took one look in his mouth at a tooth that is falling out and with a slightly shocked panic in her voice, said I have to take him to the dentist STAT. Okay - now I'm feeling pretty bad again...her normal A+ student, didn't follow the medication course and now also put off getting him to the dentist. I knew his tooth was falling out, I saw the gum line receding...but I thought, once the IEP is done, then once his ear infection is done...we'll work on the next thing: the tooth.
I think I should preface this second half by informing everyone that the eldest now has 6 teeth missing. In Kindergarten, most kids have lost 2 - 4 teeth...well, my guy has 6 all gone from trauma, specifically falling, starting when he was 22 months. I'll never forget when the first one happened because we were in Michigan on our annual family vacation. The downfall of all of this is that since the teeth have been gone for so long, there is not a fresh hole for the adult teeth to break through, so they will grow in later seeing he basically has to re-cut his teeth.
The falling out teeth, we assumed from trauma, wasn't going to be that big of an issue as long as the cuspids, or canine teeth, stay intact...essentially being the anchors for the molars. Well, I've told you I'm lucky...this time it's the cuspid that is falling out. Even though we think this comes from trauma, the progression of events is not immediately apparent. Say the tooth gets bumped and doesn't recover...the first thing that happens is a recessed gum line, then decay of the bone around the root, then the tooth will fall out or need extraction. We've been through it 6 times already...I was finally not the proactive advocate on this one...I knew there was nothing to do to prevent it...I purposely delayed. I think I'm getting just burnt out.
One reason I delayed is that we were considering about moving dentist practices because this one is costing us an arm and a leg being out of network. But, I figured I'm 3 blocks away, they already know him, he's a good dentist, and this is kind of an emergency. After the treatment and attention we received yesterday, I'm thinking we may even stay at his practice, even if he is out of network.
When I called, they got us in immediately...well, when the receptionist put me on hold and came back on, she asked where I was. My response was 'in your parking lot' It is hard to say no to someone who is sitting at your front door, so she had me come in.
I had to carry the eldest in like a baby in my arms (think sideways in my arms...not just carry). It pretty much sucks when you have to carry a 6 year old like a baby, especially in public...but the poor kid was crying hysterically when we pulled up, saw it was the dentist and not McDonalds, as he was asking to go. If I were him, I'd be upset at the change of plans too. This is what I meant when I say having a kid with special needs sure makes you have confidence...I am confident in myself enough to not care how others may judge me, if I'm doing 'works' for our situation at hand.
So, the eldest has to go back to the exam areas by himself...after flipping through many magazine pages, I was finally called back. The dentist was just sitting in front of the xray on the computer screen with his hand on his forehead. The way to know when you have a good doctor is this - he said he wants to refer us out. There is no reason that this tooth is falling out and he wanted to make sure that he wasn't missing something.
I shared a bit of our constant research and thanked him for being creative in his thinking. He has connections at Children's Memorial Hospital, with the former president who he was going to call and get me in front of as soon as possible. At this point, the eldest turned around in his chair and gave us both a big smile. Man, if I can say one thing...his smile, even as toothless as it is...lights up a room.
I thanked the dentist, went to shake his hand...and he said 'no, you get a hug.' It was sweet. He understood what we are going through and told me so. It's nice to have compassionate doctors who really want to help.
So, today he held up to his promise. Our dentist called me before 10 am, said how he talked with the former president of Children's Memorial last night and his secretary this morning, has sent them all our xrays electronically, and prepped them on our case. I then quickly got on the phone with the new guy's personal secretary, who is going to call me as soon as she talks with this new dentist, who is in Milwaukee speaking at a conference. I told her how much I appreciated the help and that we'd work with their schedule...all I need is about a 1 hour lead time to get there.
I'm pretty flattered that we are getting in front of this new dentist, with a fantastically impressive resume (I looked him up). Maybe he will be the one to help us figure out what is going on...at a minimum, he should be able to figure out what we should do next about the poor guy's teeth. But geesh...for us it seems that one thing always leads to another, it never just ends. At some point this week I'll be venturing downtown to yet another doctor's appointment, but not to worry...instead of stress, I kind of feel elite again getting face time with this guy...only the best doctors for the most 'curious and special' cases, right?
My dear friend always encourages me when I'm visiting yet ANOTHER doctor...she said I'M going to be the one to find out what is the cause of my eldest's special needs. I'm confident she is right & it helps fuel me spiritually. If we don't ever find out what the cause is, I'm okay with that, but I'll keep trying and I will be successful as long as I continue to get the sympathy, encouragement, and hugs from all the people in my life...family, friends, and even our doctors.
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