Isabelle's superhero
Sunday, September 25, 2011
Superhero Eli
Saturday, September 24, 2011
A Blog I Read
I follow a few different blogs written by mom's who have kids with special needs. I don't actually know any of them personally but I feel like I know them. I understand the things that they write, situations that they go through, feelings that they have. Even though their children's situations are totally different from mine, there still is an understanding and a lot of common feelings.
One of the blogs that I follow, my friend actually knew the writer and went to church with her in New York and told me that I should start reading her blog. Her daughter has limb reduction complex and is absolutly adorable. Miggy, the writer, has started a Special Needs Spotlight on Fridays and is introducing different families with all sorts of different situations and they are answering different questions. Today was the first spotlight and while the mom was in a totally different situation that we are in, so much of what she wrote is exactly how I feel, so I wanted to share parts of it. If you want to read the full interview, click here (sorry about all the weird highlights and different fonts. I copied and pasted this over and it is all weird for some reason. Tried to fix it, but I'm no computer guru, so it didn't work!).
One of the blogs that I follow, my friend actually knew the writer and went to church with her in New York and told me that I should start reading her blog. Her daughter has limb reduction complex and is absolutly adorable. Miggy, the writer, has started a Special Needs Spotlight on Fridays and is introducing different families with all sorts of different situations and they are answering different questions. Today was the first spotlight and while the mom was in a totally different situation that we are in, so much of what she wrote is exactly how I feel, so I wanted to share parts of it. If you want to read the full interview, click here (sorry about all the weird highlights and different fonts. I copied and pasted this over and it is all weird for some reason. Tried to fix it, but I'm no computer guru, so it didn't work!).
Could you explain how your children’s specific special need
affects your day to day life?
I’m
exhausted a lot of the time. Probably from the pace of doing life
with a preschooler and a baby and then adding to that mix time coordinating
doctors, time spent in therapies, time doing stretches and therapy at home,
time spent with doctors that always goes much longer than I expected, time
travelling to specialists, time spent dealing with our insurance company and so
on… and also my sweet baby is getting her molars – that may have
something to do with the tiredness.
I
suppose that is the biggest effect I feel – just the toll that extra time spent
on dealing with the extras takes. It could become consuming so I
have to make an effort sometimes to step away – to stop researching online, to
set aside one day to deal with insurance and call doctors or therapists and to
take time to just play with my kids or to watch a movie with my husband without
multitasking. I have to make the conscious effort to not allow the
extra, time consuming tasks to consume our life.
This
year I’ve been learning to say no. When our son was born, we
committed to give him as normal a life as possible. I still think
that is important and it is why we make playdates a priority or vacations or
joining a soccer team. But, I don’t have to be a part of everything
because the truth is, our life does have some additional commitments in it and
that’s okay. It’s okay for me to not have as much margin in my life
and to say no sometimes to some things.
What are the biggest worries you face for your kids?
I
worry about bullies. I worry about not being there to protect them
or to intervene. I worry about them someday sharing with me
something another kid or adult has done and being past the age when mommy can
call the teacher or the parent and settle it but instead I have to stand back
& let them work through it…
I worry about their self esteem and whether they will fall
prey to the world’s lies or cling to the truths we are trying to instill in
their hearts. I worry I am too inadequate to be the kind of mommy they
need.
I struggle a lot with worrying about how much I should be
doing. Am I doing enough therapies? Am I making sure they
have time to just be kids? Should I see this doctor or pursue that
surgery? Mommy guilt can be a terrible thing.
I have learned and have to daily work towards not thinking
too far in the future when it comes to my kids. I don’t know what
their struggles will be like someday and worrying about that does us no good
now. I really want to live in the present with them and enjoy today
so I fight to resist those worries about things that I can’t control & pray
for wisdom to figure out how to handle issues as they may arise.
How
can people best approach or respond to your kids? Is there something you
wish other people knew so as to avoid awkward or hurtful situations?
My
biggest goal for others to know is not to pity those of us blessed with a child
with differences. My kids are different. They have a
great life. We are happy. We love our family just the way
it is.
Don’t
teach your children to ignore us or to not look. Teach them to talk
to us. Teach them that it is okay to say hi and that our kids are
kids too – they are people first – not diagnoses.
Ask
questions. Please, I’d love the opportunity to answer your questions
and brag about my cute kiddos & all they are accomplishing.
Monday, September 19, 2011
What a long, awful week, that has lead into long, stressful days and nights and a whole new slew of worries (because life was worry-free before, right?). This may not be the most optimistic post, I am pretty discouraged, tired and stressed right now and while I do try to keep a sense of humor and be as positive as I can about our situation over the last year and a half, I am just too frustrated to do that right now. Hopefully my next post will be much more cheerful, but right now, this is all I've got.
We headed up to Phoenix last week for appointments and eye and tear duct surgery on Thursday. The day began lousy - while the nurse had told me during the pre-op appointment to not feed her 8 hours beforehand, and she told me she could have liquids up to 2 hours before the surgery. We left at 6AM for 6:30 check in time at PCH. I fed Isabelle a bottle at 4:30 - only to find out that the information should have really been only clear liquids up to 2 hours beforehand. So, no surgery. We were sent home and told to come back at 12 and they would see if they could try and squeeze Isabelle in between all the other patients that day. Oh, and no food or drink until then. I returned home with a hungry, thirsty baby who I needed to entertain for the next 5 hours and try to keep happy, despite the fact that she's hungry and can't be fed. And keep Eli entertained as well. Then my car battery dies, so my mother-in-law and I scramble to figure out how to fix this so we can leave at 11 to get to the hosp by 12 to see if the doctor can fit her in.
About 10:45 my phone rings and it's a number I didn't recognize. Back in the day I never answered numbers I didn't recognize, but now my life revolves around doctor appointments and insurance drama and I always answer my phone, especially if it is a number I don't recognize, because it is a lot harder to get ahold of doctors and insurance when you are calling back. This time it was the paramedics. Isaac was driving up for the surgery and was in a car accident. They said he had been knocked unconscious and was convulsing when they ripped off the door to get him out of the truck. Isaac doesn't remember much, other than thinking "I'm going to die" as the truck spun out of control off the Freeway and rolled until it was stopped by a tree. The paramedics were taking him to the hosp in Tucson, while Isabelle was going into surgery at Phoenix Children's and after that initial phone call, we couldn't get any more information on him. The hosp said that they would only give out information in person. Tucson is about 2 hours from Phoenix and I couldn't leave Isabelle, so my father-in-law drove down to Tucson.
Isabelle's surgery went well, but she was miserable and uncomfortable the rest of the night and was only content to be held by me. Isaac had lots of tests run and thankfully seems to be ok, just is really bruised, scraped and in lots of pain. He got to Mesa about 9:30 that night and still isn't feeling great. To top off an awful day, my mom called to let me know my Aunt Pearly had passed away. We're not as close with the Frazier side of my family as we are with my mom's side, but Pearly lived in Hood River and I always seemed to run into her at the grocery store or in town whenever I was home to visit. She was always so sweet to me, wanting to know what I was up to, how everything was going. It just made me so sad and was such an awful end to an awful day.
Now that we are home and everyone is on the mend, I'm really starting to stress about the logistics of it all. We are out a car - an old car, yes, but one that was in really great shape despite being 12 years old and was definitely worth more to us running that whatever we will get from the insurance (especially after our 1000 dollar deductible). Then there is the fact that Isaac's job is a temp-to-hire and the first 6 months he is considered a temporary employee. As such, he has no time off without losing pay and has the worst insurance plan known to man. The kind of insurance plan that takes tons out of your paycheck and (we are now realizing) doesn't pay for anything. Out of the ambulance ride and many tests run at the ER, the insurance will only cover the first 1000, leaving the rest of the expenses to us. Based on lots of letters from Isabelle's insurance carriers over the last 20 months, I have a good idea on basic costs and figure that with the ambulance and tests, we're probably looking at about 10,000-15,000. Which makes me want to crawl in my bed and not come out anytime soon. We already have debt that we've been trying so hard to keep down and pay off and adding to it just makes me want to bawl. I have this friend who isn't the best money manager and has lots of debt because she tends to over shop, take fun trips, eat out alot, get mani's and pedi's, etc. And while I know that any kind of debt sucks, I can't help but feel jealous. We're both in tons of debt, but at least she has a killer wardrobe to show for it, fun trips to Disneyland, great nails, fun things like that. What do I have? Orthodox socks that cost so much my kids won't be able to go to college. An ambulance ride so expensive I should own the ambulance! And my clothes are so old they literally have holes in them (yes - someone stopped me at Walmart this week to ask me if I knew there were multiple holes in the butt of my pants. I knew, but hoped they were too small to notice. Apparently, I was wrong). Seriously, if I'm going to have debt, could it not be for IV's and MRI's? Could it be for a trip to Hawaii or something awesome like that? Or could I least just win a trip to Hawaii? Aren't we due for something awesome like that to happen to us? Am I nuts to just feel like enough is enough? We've had 20 months of bad news after bad news and every time someone says to us the stupid words "Well, it could be worse," something worse happens! Seriously, I've never been superstitious before, but I'm going to punch the next person who says that to me, because worse just keeps happening. Maybe if people start saying "Well, it could be better," better things will start to happen. Who knows, all I know is I am so tired of living in a state of constant stress and worry about medical issues and medical bills and nothing in our life ever seeming to work out for the good. I want a vacation! I want a long massage and to go somewhere where for 1 full week I don't have to worry and stress and drive hours to doctor appointments and come home to more medical bills in the mail. I want to have a paycheck that doesn't have to pay for leg braces and medicine, but for a new outfit and a fun trip. And I know that probably sounds so shallow, but I guess what I really miss is the days when I worried about much smaller, less important and stressful things and was in the position to take care of those things, rather than to always have to gloss them aside because there is always much bigger, more stressful problems in the way.
I know that is a lot of ranting and raving, and yes, whining. Sorry, I just needed to get this pity party out and let it go. Tomorrow its Tucson again for therapy and hopefully a better attitude on my part.
We headed up to Phoenix last week for appointments and eye and tear duct surgery on Thursday. The day began lousy - while the nurse had told me during the pre-op appointment to not feed her 8 hours beforehand, and she told me she could have liquids up to 2 hours before the surgery. We left at 6AM for 6:30 check in time at PCH. I fed Isabelle a bottle at 4:30 - only to find out that the information should have really been only clear liquids up to 2 hours beforehand. So, no surgery. We were sent home and told to come back at 12 and they would see if they could try and squeeze Isabelle in between all the other patients that day. Oh, and no food or drink until then. I returned home with a hungry, thirsty baby who I needed to entertain for the next 5 hours and try to keep happy, despite the fact that she's hungry and can't be fed. And keep Eli entertained as well. Then my car battery dies, so my mother-in-law and I scramble to figure out how to fix this so we can leave at 11 to get to the hosp by 12 to see if the doctor can fit her in.
About 10:45 my phone rings and it's a number I didn't recognize. Back in the day I never answered numbers I didn't recognize, but now my life revolves around doctor appointments and insurance drama and I always answer my phone, especially if it is a number I don't recognize, because it is a lot harder to get ahold of doctors and insurance when you are calling back. This time it was the paramedics. Isaac was driving up for the surgery and was in a car accident. They said he had been knocked unconscious and was convulsing when they ripped off the door to get him out of the truck. Isaac doesn't remember much, other than thinking "I'm going to die" as the truck spun out of control off the Freeway and rolled until it was stopped by a tree. The paramedics were taking him to the hosp in Tucson, while Isabelle was going into surgery at Phoenix Children's and after that initial phone call, we couldn't get any more information on him. The hosp said that they would only give out information in person. Tucson is about 2 hours from Phoenix and I couldn't leave Isabelle, so my father-in-law drove down to Tucson.
Isabelle's surgery went well, but she was miserable and uncomfortable the rest of the night and was only content to be held by me. Isaac had lots of tests run and thankfully seems to be ok, just is really bruised, scraped and in lots of pain. He got to Mesa about 9:30 that night and still isn't feeling great. To top off an awful day, my mom called to let me know my Aunt Pearly had passed away. We're not as close with the Frazier side of my family as we are with my mom's side, but Pearly lived in Hood River and I always seemed to run into her at the grocery store or in town whenever I was home to visit. She was always so sweet to me, wanting to know what I was up to, how everything was going. It just made me so sad and was such an awful end to an awful day.
Now that we are home and everyone is on the mend, I'm really starting to stress about the logistics of it all. We are out a car - an old car, yes, but one that was in really great shape despite being 12 years old and was definitely worth more to us running that whatever we will get from the insurance (especially after our 1000 dollar deductible). Then there is the fact that Isaac's job is a temp-to-hire and the first 6 months he is considered a temporary employee. As such, he has no time off without losing pay and has the worst insurance plan known to man. The kind of insurance plan that takes tons out of your paycheck and (we are now realizing) doesn't pay for anything. Out of the ambulance ride and many tests run at the ER, the insurance will only cover the first 1000, leaving the rest of the expenses to us. Based on lots of letters from Isabelle's insurance carriers over the last 20 months, I have a good idea on basic costs and figure that with the ambulance and tests, we're probably looking at about 10,000-15,000. Which makes me want to crawl in my bed and not come out anytime soon. We already have debt that we've been trying so hard to keep down and pay off and adding to it just makes me want to bawl. I have this friend who isn't the best money manager and has lots of debt because she tends to over shop, take fun trips, eat out alot, get mani's and pedi's, etc. And while I know that any kind of debt sucks, I can't help but feel jealous. We're both in tons of debt, but at least she has a killer wardrobe to show for it, fun trips to Disneyland, great nails, fun things like that. What do I have? Orthodox socks that cost so much my kids won't be able to go to college. An ambulance ride so expensive I should own the ambulance! And my clothes are so old they literally have holes in them (yes - someone stopped me at Walmart this week to ask me if I knew there were multiple holes in the butt of my pants. I knew, but hoped they were too small to notice. Apparently, I was wrong). Seriously, if I'm going to have debt, could it not be for IV's and MRI's? Could it be for a trip to Hawaii or something awesome like that? Or could I least just win a trip to Hawaii? Aren't we due for something awesome like that to happen to us? Am I nuts to just feel like enough is enough? We've had 20 months of bad news after bad news and every time someone says to us the stupid words "Well, it could be worse," something worse happens! Seriously, I've never been superstitious before, but I'm going to punch the next person who says that to me, because worse just keeps happening. Maybe if people start saying "Well, it could be better," better things will start to happen. Who knows, all I know is I am so tired of living in a state of constant stress and worry about medical issues and medical bills and nothing in our life ever seeming to work out for the good. I want a vacation! I want a long massage and to go somewhere where for 1 full week I don't have to worry and stress and drive hours to doctor appointments and come home to more medical bills in the mail. I want to have a paycheck that doesn't have to pay for leg braces and medicine, but for a new outfit and a fun trip. And I know that probably sounds so shallow, but I guess what I really miss is the days when I worried about much smaller, less important and stressful things and was in the position to take care of those things, rather than to always have to gloss them aside because there is always much bigger, more stressful problems in the way.
I know that is a lot of ranting and raving, and yes, whining. Sorry, I just needed to get this pity party out and let it go. Tomorrow its Tucson again for therapy and hopefully a better attitude on my part.
Saturday, September 10, 2011
What a Kid
Funny moments with Eli this week:
1. Isaac started working nights and isn't there to put Eli to bed, so Eli insisted on wearing his shirt all night and sleeping with it
2. After a kitchen fire, we had a long conversation with Eli about fire and the dangers of playing with fire, etc. Afterwords, I asked if he understood. His answer: "um, corn?" Pretty sure he didn't understand.
3. Trying to teach Izzy how to dance.
Friday, September 9, 2011
Just Some Pics
A Fireman, just like Grandpa
Enjoying the pears Grandma and Aunt Deedee sent us from the orchard. I walked into the playroom and found her eating away.
And we're working on walking. We're definitely cruising on furniture and just starting to try to walk with some support from Isaac or I.
We're off to Mesa this week for eye surgery.
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