After my last post about Jude's hitting problem at school, the principal returned from a week away visiting a sick family member, and she was more than a little upset. She said to the special education teacher that Jude is a "threat to public safety" and suggested that he only return to the general education classroom if he was away from all the other students (isolated) with both hands being held (restrained).
Well.
While Steve and I can certainly appreciate her concern for the student who was hit, this seemed rather an extreme reaction. And the school has not done everything in its power to get to the root cause of Jude's unwanted behaviors. Jude is certainly a handful, even at home, but we don't have anywhere near the behavior problems with him at home or at church or anywhere as he displays at school. Behavior is communication, so we are left with the task of finding out what in the world it is he is trying to tell us.
We sent a strongly worded (but super nice!) letter to the principal stating that we would not agree to her Isolate and Restrain idea under any imaginable circumstances and that we would be needing a new Functional Behavior Assessment by an independent agency not affiliated with the school to get a fresh look at the situation and get some fresh ideas. I asked that this be done over 3 or 4 days and across all environments to get the best picture of the total situation.
We also requested that Jude have a full time one-to-one aide. At this time, he rotates between several aides, all wonderful, but each with their own styles and reactions and judgment. He needs one person for consistency and who ideally will be able to modify his assignments on the spot so that Jude spends the most amount of time in the classroom with work that is appropriately challenging for him. We asked for more speech therapy and social skills training. While we hate for him to be out of the classroom and away from his peers, our SLP at the school is extraordinary and we feel time with her is well spent.
Our letter stated that the more Jude feels included, is better able to communicate with his peers and is appropriately learning at his level and pace, we believe and research bears out (not to mention common sense) that unwanted behaviors will decrease...unless there is some underlying medical cause for them, which we are in the process of ruling out. But none of us believes that is the case.
I got a nice reply back from the principal stating that she is willing to work with us and will forward our requests on to the powers that be. I am hopeful that we will be able to get this all figured out and get Jude back on the right track. This year has been very difficult. I think we will look back at 2nd grade as a year of very little academic or social progress. He has become at school more or less a collection of negative behaviors to manage. Third grade has got to be better.
Wednesday, May 22, 2013
Mohs Nose Woes Part 3
So, it's the next day. I am experiencing a little bit of regret that I didn't just go ahead and just "fix it" by doing the reconstruction yesterday. I was already there, numbed up, in the chair and ready to go. But geez. It was going to be a lot of cutting and stitching and the truth is, I think I just was tired of being cut and burned for 4 straight hours and when given the option to just stick a bandage on it and go home? I couldn't get out of there fast enough.
I changed the bandage just now. I really don't think it's so bad. Given the location, if it fills in even reasonably well, I think it won't be that noticeable. If it is discolored at all, there's always makeup for that.
I think I made the right decision, especially given the fact that I can always change my mind within a year if I don't like how it heals.
Here's me with what they sent me home with:
Here's the hole, in all its majestic glory. Picture doesn't really show depth. It's on the deep-ish side. We are using something called Sorbsan to help it fill in so there isn't so much of a divot.
And me with a mere bandaid, which I will proudly wear for 3 weeks.
It's true, my pageant days are over:) As I told my friend this morning, good thing I developed a personality a long time ago to compensate for things like this!
I'll post some more pictures in the coming weeks and months so you can see how it heals up. I know there will be those out there who have googled this (as I did--obsessively) and landed here, trying to brace for their own Mohs surgeries. Hopefully I can offer you the comfort that the pain was absolutely minimal. I was way more worked up about it than I needed to be. My blood pressure was sky high when I arrived at the office. I had to be numbed up repeatedly, but it was no more than a prick each time and I felt zero pain during the procedures or the cauterization. There was a strange sensation of pulling, but no pain whatsoever.
I took only Advil and Tylenol for pain afterwards when the numbness wore off, did not wake up during the night, experienced minimal swelling, and was given restrictions for only 48 hours to minimize chance of bleeding. Had I done the reconstruction, by the way, I would have not been able to lift or bend for a full week. So there's that. This way, I'm back at the gym by Friday.
All in all, I'd say no big deal.
Edited to add: I should clarify that the reason I was there for 4 hours was because of the waiting on pathology in between. I wasn't really being cut and burned for four hours! I will give the entire experience a 5 on a scale of 1-10, with 1 being " I loved this! It was so much fun and I would eagerly anticipate the chance to do it again!" and 10 being "This was the single worst experience of my life! I would choose to have sharp, hot sticks poked in my eyes before doing this again!" And anyway, what choice do we have when we have cancer growing on our faces? It must be removed or it will continue to grow and do more damage. Mohs has a 99% cure rate and removes the least amount of healthy tissue, so for that reason, I give it a thumbs up.
I changed the bandage just now. I really don't think it's so bad. Given the location, if it fills in even reasonably well, I think it won't be that noticeable. If it is discolored at all, there's always makeup for that.
I think I made the right decision, especially given the fact that I can always change my mind within a year if I don't like how it heals.
Here's me with what they sent me home with:
Here's the hole, in all its majestic glory. Picture doesn't really show depth. It's on the deep-ish side. We are using something called Sorbsan to help it fill in so there isn't so much of a divot.
And me with a mere bandaid, which I will proudly wear for 3 weeks.
It's true, my pageant days are over:) As I told my friend this morning, good thing I developed a personality a long time ago to compensate for things like this!
I'll post some more pictures in the coming weeks and months so you can see how it heals up. I know there will be those out there who have googled this (as I did--obsessively) and landed here, trying to brace for their own Mohs surgeries. Hopefully I can offer you the comfort that the pain was absolutely minimal. I was way more worked up about it than I needed to be. My blood pressure was sky high when I arrived at the office. I had to be numbed up repeatedly, but it was no more than a prick each time and I felt zero pain during the procedures or the cauterization. There was a strange sensation of pulling, but no pain whatsoever.
I took only Advil and Tylenol for pain afterwards when the numbness wore off, did not wake up during the night, experienced minimal swelling, and was given restrictions for only 48 hours to minimize chance of bleeding. Had I done the reconstruction, by the way, I would have not been able to lift or bend for a full week. So there's that. This way, I'm back at the gym by Friday.
All in all, I'd say no big deal.
Edited to add: I should clarify that the reason I was there for 4 hours was because of the waiting on pathology in between. I wasn't really being cut and burned for four hours! I will give the entire experience a 5 on a scale of 1-10, with 1 being " I loved this! It was so much fun and I would eagerly anticipate the chance to do it again!" and 10 being "This was the single worst experience of my life! I would choose to have sharp, hot sticks poked in my eyes before doing this again!" And anyway, what choice do we have when we have cancer growing on our faces? It must be removed or it will continue to grow and do more damage. Mohs has a 99% cure rate and removes the least amount of healthy tissue, so for that reason, I give it a thumbs up.
Tuesday, May 21, 2013
Mohs Woes Part 2
Well, it's over. I'm home. It was unpleasant, but then again not worse than I imagined at all.
It took two passes at it to get all of the abnormal cells, so the wound is sizable. Bigger than a pea, smaller than a grape. A blueberry, I'd say.
After some discussion with the doctor and the nurses, I made the decision to forego the flap reconstruction afterall and let the wound heal on its own. There will be a scar either way, and this way I have less trauma. The doctor thought because of my age (I'm YOUNG for this, people. I was at least 30 years younger than everyone in that waiting room) and general health, I had as good a chance as anyone at healing. My safety net is that if the scar doesn't heal well or I decide that I just can't live with it, I have a year to go back and do the reconstruction that we would have done today and insurance will still cover it. So how can I lose? Might as well give it a chance.
So I have a gaping hole in my face, basically. But no cancer. I guess my career as a nose model is ruined now. Darn, I was really counting on that, too. I guess it's time to find a new dream.
For those sickos out there wanting to see pictures, lemme know in the comments section and we'll discuss.
It took two passes at it to get all of the abnormal cells, so the wound is sizable. Bigger than a pea, smaller than a grape. A blueberry, I'd say.
After some discussion with the doctor and the nurses, I made the decision to forego the flap reconstruction afterall and let the wound heal on its own. There will be a scar either way, and this way I have less trauma. The doctor thought because of my age (I'm YOUNG for this, people. I was at least 30 years younger than everyone in that waiting room) and general health, I had as good a chance as anyone at healing. My safety net is that if the scar doesn't heal well or I decide that I just can't live with it, I have a year to go back and do the reconstruction that we would have done today and insurance will still cover it. So how can I lose? Might as well give it a chance.
So I have a gaping hole in my face, basically. But no cancer. I guess my career as a nose model is ruined now. Darn, I was really counting on that, too. I guess it's time to find a new dream.
For those sickos out there wanting to see pictures, lemme know in the comments section and we'll discuss.
Monday, May 20, 2013
Mohs Nose Woes
Tomorrow's the big day! I thought it would be neato for everyone if I drag you along with me on this experience. So, here's a picture of the offending spot. Can you see it? It's a wee little red area just above the crease.
Tomorrow I'll post a picture of what it looks like after the procedure, and then I'll post some at 36 hours, a week, 2 weeks, 1 month, 3 months, 6 months and a year. Weeeee! C'mon, it'll be fun!
Tomorrow I'll post a picture of what it looks like after the procedure, and then I'll post some at 36 hours, a week, 2 weeks, 1 month, 3 months, 6 months and a year. Weeeee! C'mon, it'll be fun!Friday, May 17, 2013
Oh, hi blog!
Why is it I only think to update my blog these days when things seem a little out of control in my life? There is so much on my mind, it's all spilling over the edges and onto this blog.
Everyone is healthy. There are no disasters brewing that I am aware of, but I am worried about a coupla things. One is my own personal no-big-deal-but-I'm-having-trouble-being-a-big-girl-about-it problem and the other is the continuing behavior issues with Jude.
To be fair, mostly his problems occur at school. The big four: hitting, kicking, throwing, and running. His goal each day is to have five or less of these unwanted behaviors. If he achieves this modest goal, he is rewarded with circling a smiley face on his parent communication form, which he is much more excited about than one might imagine. He loves showing us when he has a smiley face. When he has six more more unwanted behaviors, he circles a crying frowny face which says underneath, "Ooops! Tomorrow is another day!" Most days Jude does not achieve his goal. We see plenty of Ooops days. Sometimes it's 6 or 7 or 8 behaviors. One day it was 26. Often they come in clusters with him racking up more than half a dozen strikes against him in mere minutes when he is involved in an activity he doesn't like; he might be prone to throw the activity off the desktop time after time to get the message across that he doesn't like it. This type of behavior, while stubborn and definitely undesirable, is not what really has us riled at the moment. Even the running has subsided.
The real issue du jour is the hitting/kicking. His aggressive behavior has become more frequent, delivered with less predictability and more intensity. Yesterday at school on his way out of the 2nd grade classroom, out of absolutely nowhere he attacked a classmate and began hitting her with his fists and pulling her hair. It took the aide a beat to get to them because she was on the other side of the desk. The girl was not seriously hurt, but scared and surprised and very emotional. In fact, several of the members of Jude's class began to cry and the teacher herself was quite surprised and upset by Jude's sudden inexplicable turn.
He was immediately taken to time out ( a new disciplinary tactic for Jude that our school takes very seriously; it is considered a severe punishment because it is a brief total isolation in a padded room reserved only for students who are a risk to themselves or others.) In the past, Jude's infractions were largely ignored by the school staff with the rationale that his behaviors were attention-seeking, so they would not reinforce him with attention even if it was negative attention. Well, that wasn't working. He doesn't even really seem to mind the time out. He sometimes just goes in the room for fun. What to do with this kid? He can be so cuddly and loving, and then there is this other side to him that no one understands. He's got a whole team of educated adults scratching their heads. Clearly, we are all just making this up as we go along.
The most disturbing part is...why? Usually there is some antecedent to the behavior or at least some fathomable reason why he might act out in the ways he does. This time? Nothing. Not a person involved could imagine any reason he would have attacked this sweet little girl who, by all accounts, is wonderful with Jude.
I read him the riot act when he got home, and he did have his tail between his legs from the moment he walked in the door. He knew exactly what he had done. If only he could tell us why.
I sent him to bed early, too. He only got out of bed once. I showed him the paper (with the Ooops face on it) and he turned right around and went back to bed without so much as a groan.
Is it impulse control? What is he trying to tell us? Oy vey. It's got me up at nights.
Here's my other lil' thing. Remember when I was telling you, dear blog, about the super fun Scrape and Biopsy Day I had with the dermatologist? Well, that spot on my nose did turn out to be basal cell carcinoma. I guess all that sun exposure through the years is finally catching up with me. Because of where it is on my face and the fact that it is an invasive cancer rather than one which might be successfully treated with non-surgical methods, the dr. referred me to another dermatologist who specializes in Mohs surgery where he acts as the surgeon, pathologist, and reconstruction expert all rolled into one. I go on Tuesday. It's local anesthesia and I understand pain is minimal, so I'm not all that worried about that aspect of it. It's just that since he's taking what could end up being a sizable chunk out of the side of my nose, he will have to reconstruct using a flap technique where he cuts two flaps up the side wall of my nose, almost up to my eye, that he will rotate and reattach--one to the area where he has excised the cancer, one to the area of the first flap, and then will suture the top part closed. I will have lots of external and internal sticthes and will look pretty much like a horror/freak show for a few weeks/months afterwards. Up to year to fully heal, I'm reading. Maybe dermabrasion afterward, also to minimize scarring. Cure rate is something like 98%
Let's be honest. I do not make my living as a model. I'm 44 years old. My nose is no prize to begin with. But I am nervous. Who wants to go through something like this? At the same time, it's not a life-threatening cancer by any means. I am told I have a 50% chance of more basal cell carcinomas since I've now had one, so I'll have to have a full body exam once a year from here on out for early detection. I hear those are fun:) Also, I will need to wear at least 30 SPF sunblock on all exposed areas any time I step out of the house. I have definitely not been in the habit of doing that. I've been good about applying sunblock for my kids, but not for me. I don't know what made me think I would be immune, why I would think that cancer is something that only happens to other people. I know I am so lucky that it isn't melanoma and that the course of treatment is as simple as it is. I'm just anxious to get it over and done with.
Everyone is healthy. There are no disasters brewing that I am aware of, but I am worried about a coupla things. One is my own personal no-big-deal-but-I'm-having-trouble-being-a-big-girl-about-it problem and the other is the continuing behavior issues with Jude.
To be fair, mostly his problems occur at school. The big four: hitting, kicking, throwing, and running. His goal each day is to have five or less of these unwanted behaviors. If he achieves this modest goal, he is rewarded with circling a smiley face on his parent communication form, which he is much more excited about than one might imagine. He loves showing us when he has a smiley face. When he has six more more unwanted behaviors, he circles a crying frowny face which says underneath, "Ooops! Tomorrow is another day!" Most days Jude does not achieve his goal. We see plenty of Ooops days. Sometimes it's 6 or 7 or 8 behaviors. One day it was 26. Often they come in clusters with him racking up more than half a dozen strikes against him in mere minutes when he is involved in an activity he doesn't like; he might be prone to throw the activity off the desktop time after time to get the message across that he doesn't like it. This type of behavior, while stubborn and definitely undesirable, is not what really has us riled at the moment. Even the running has subsided.
The real issue du jour is the hitting/kicking. His aggressive behavior has become more frequent, delivered with less predictability and more intensity. Yesterday at school on his way out of the 2nd grade classroom, out of absolutely nowhere he attacked a classmate and began hitting her with his fists and pulling her hair. It took the aide a beat to get to them because she was on the other side of the desk. The girl was not seriously hurt, but scared and surprised and very emotional. In fact, several of the members of Jude's class began to cry and the teacher herself was quite surprised and upset by Jude's sudden inexplicable turn.
He was immediately taken to time out ( a new disciplinary tactic for Jude that our school takes very seriously; it is considered a severe punishment because it is a brief total isolation in a padded room reserved only for students who are a risk to themselves or others.) In the past, Jude's infractions were largely ignored by the school staff with the rationale that his behaviors were attention-seeking, so they would not reinforce him with attention even if it was negative attention. Well, that wasn't working. He doesn't even really seem to mind the time out. He sometimes just goes in the room for fun. What to do with this kid? He can be so cuddly and loving, and then there is this other side to him that no one understands. He's got a whole team of educated adults scratching their heads. Clearly, we are all just making this up as we go along.
The most disturbing part is...why? Usually there is some antecedent to the behavior or at least some fathomable reason why he might act out in the ways he does. This time? Nothing. Not a person involved could imagine any reason he would have attacked this sweet little girl who, by all accounts, is wonderful with Jude.
I read him the riot act when he got home, and he did have his tail between his legs from the moment he walked in the door. He knew exactly what he had done. If only he could tell us why.
I sent him to bed early, too. He only got out of bed once. I showed him the paper (with the Ooops face on it) and he turned right around and went back to bed without so much as a groan.
Is it impulse control? What is he trying to tell us? Oy vey. It's got me up at nights.
Here's my other lil' thing. Remember when I was telling you, dear blog, about the super fun Scrape and Biopsy Day I had with the dermatologist? Well, that spot on my nose did turn out to be basal cell carcinoma. I guess all that sun exposure through the years is finally catching up with me. Because of where it is on my face and the fact that it is an invasive cancer rather than one which might be successfully treated with non-surgical methods, the dr. referred me to another dermatologist who specializes in Mohs surgery where he acts as the surgeon, pathologist, and reconstruction expert all rolled into one. I go on Tuesday. It's local anesthesia and I understand pain is minimal, so I'm not all that worried about that aspect of it. It's just that since he's taking what could end up being a sizable chunk out of the side of my nose, he will have to reconstruct using a flap technique where he cuts two flaps up the side wall of my nose, almost up to my eye, that he will rotate and reattach--one to the area where he has excised the cancer, one to the area of the first flap, and then will suture the top part closed. I will have lots of external and internal sticthes and will look pretty much like a horror/freak show for a few weeks/months afterwards. Up to year to fully heal, I'm reading. Maybe dermabrasion afterward, also to minimize scarring. Cure rate is something like 98%
Let's be honest. I do not make my living as a model. I'm 44 years old. My nose is no prize to begin with. But I am nervous. Who wants to go through something like this? At the same time, it's not a life-threatening cancer by any means. I am told I have a 50% chance of more basal cell carcinomas since I've now had one, so I'll have to have a full body exam once a year from here on out for early detection. I hear those are fun:) Also, I will need to wear at least 30 SPF sunblock on all exposed areas any time I step out of the house. I have definitely not been in the habit of doing that. I've been good about applying sunblock for my kids, but not for me. I don't know what made me think I would be immune, why I would think that cancer is something that only happens to other people. I know I am so lucky that it isn't melanoma and that the course of treatment is as simple as it is. I'm just anxious to get it over and done with.
Wednesday, April 24, 2013
Things People Say
This morning I heard this lyric in a song, "Nothing lasts forever," in reference to suffering. It's another way of saying, "This too shall pass." People love to say that. It's encouraging, and mostly it's true.
I was thinking about how that's true of things like allergy season and pulled muscles and dealing with those rebellious, mouthy teenage years with your kids, and sleepless nights with babies, and really of most things that's pretty true. Difficult seasons in life tend to come and go. You can power through because you can see an end in sight. You know that some day it will be better.
It's not true of all things. And that's all I have to say about that.
Actually, maybe I do have a little more to say about that. I guess my point is that when I heard that song, I thought to myself that some things really do last forever. You just have to learn to adjust to them and try as hard as humanly possible to find the silver lining. Otherwise you are just no fun at all and people start avoiding you. Take, for example, this woman whose leg got partly blown off at the Boston Marathon. She is a dancer and is already talking about how she will learn to dance again. She could hunker down and roll around in her own self-pity (I would say she's entitled to do some of that and probably has and will privately and should) but instead she's loving the fact that she's alive and determined to find ways to continue doing all the things she loves. She is refusing to be defeated by this act of terror. So...will her leg grow back? Nope. Gone forever. This too shall definitely NOT pass. But what is there to do but go on and find ways to eek every last bit of joy out of the life we have left?
I was thinking about how that's true of things like allergy season and pulled muscles and dealing with those rebellious, mouthy teenage years with your kids, and sleepless nights with babies, and really of most things that's pretty true. Difficult seasons in life tend to come and go. You can power through because you can see an end in sight. You know that some day it will be better.
It's not true of all things. And that's all I have to say about that.
Actually, maybe I do have a little more to say about that. I guess my point is that when I heard that song, I thought to myself that some things really do last forever. You just have to learn to adjust to them and try as hard as humanly possible to find the silver lining. Otherwise you are just no fun at all and people start avoiding you. Take, for example, this woman whose leg got partly blown off at the Boston Marathon. She is a dancer and is already talking about how she will learn to dance again. She could hunker down and roll around in her own self-pity (I would say she's entitled to do some of that and probably has and will privately and should) but instead she's loving the fact that she's alive and determined to find ways to continue doing all the things she loves. She is refusing to be defeated by this act of terror. So...will her leg grow back? Nope. Gone forever. This too shall definitely NOT pass. But what is there to do but go on and find ways to eek every last bit of joy out of the life we have left?
Sunday, April 21, 2013
Why I Love Our Church
We haven't been attending for long, and it certainly is not a convenient distance from our house. But we finally found a church that leaves us feeling refreshed and encouraged to go out into the world and love others and do our best to act according to our convictions. This church is not all about condemnation and fear of hell but is about showing love to others through inter-faith care for our city's homeless population and about care for our earth and about prayers for peace and women in leadership and cultural and ethnic diversity and young and old sitting together in the same service and being open and affirming and saying "Whoever you are and wherever you are in life's journey, you are welcome here." It is a breath of fresh air. It is a place where I can believe in God, except on days when I don't, and even then I know I am welcome.
Tuesday, April 09, 2013
Peeking into the Future
About a month ago, we received a letter from our local government agency stating that Jude had been targeted for a family services (Medicaid) waiver. We would need to complete some forms and call to make an appointment to get the ball rolling. Jude is eight, and he's been on the waiting list since he was about two months old. I was told about getting on this waiting list by the social workers at the hospital before Jude was even a week old. I remember thinking that it was important to get him on this waiting list as soon as possible because the wait was seven or more years. I didn't know or understand what these services really would do for him or us, but understood that it was just something we would need to do.
Our service coordinator met with us today and explained a little more about what having the family services waiver will mean, and it's assistance with all good things; speech therapy, intensive behavioral therapy, occupational therapy, music therapy, recreational therapy, even respite care. I have long said I couldn't imagine a time when our family would want to take advantage of respite care services as I assume that we will always want to find a way to include Jude in any and all family activities. However, as he gets older and his behavioral issues become more evident and varied, I can now at least imagine that there may be times when those services would be helpful and there is an excellent agency close to our house that comes highly recommended by people we trust.
I am in the middle of reading a book called Parenting an Adult with Disabilities or Special Needs that has been very enlightening. And overwhelming. I like to say that it's good for me to take each day as it comes and try not to get too far ahead of myself thinking about the future with Jude. It's just all too daunting. However, that practice really isn't entirely responsible. There are some things that need to be planned for well in advance of Jude's adulthood and there is a lot that goes into transitioning that can't be put off until later. For example, things like wills, special needs trusts, and written plans about doctors, dentists, likes and dislikes, routines, allergies, medications, triggers, and histories for your child need to be in place in case the unthinkable happens. All of this should be revisited frequently, maybe around the time of his birthday yearly so that updates can be included. If something were to happen to Steve and me tomorrow, say we both get hit by a bus or struck by lightning, we'd need to have things in place for Jude so that he is well cared for and protected.
It's given me a lot to think about. It had me a little anxious and tachycardic earlier today reading about all the things that I need to consider and all the hiring, training, checking on, and sometimes firing of support staff that lies ahead for me, but then I thought, well...like everything else along the journey thus far, we'll just dig deep and do it because we love him want the best for him and because that is what will be required to get the job done. We will rise to it because that is what he needs us to do. We'll do whatever it takes to try and ensure that Jude's life is happy, healthy, comfortable, stimulating, and fulfilling and that because of the work we put in to plan for all that, the burden will be lessened for those after us like his siblings or other friends and family who love him in the event that we are unable to oversee his care as time goes on. Like I said, it's a lot to think about. Right now, I think I'll go fire up the grill and make us some burgers. All this distant future stuff does have me a little confounded and hungry.
Our service coordinator met with us today and explained a little more about what having the family services waiver will mean, and it's assistance with all good things; speech therapy, intensive behavioral therapy, occupational therapy, music therapy, recreational therapy, even respite care. I have long said I couldn't imagine a time when our family would want to take advantage of respite care services as I assume that we will always want to find a way to include Jude in any and all family activities. However, as he gets older and his behavioral issues become more evident and varied, I can now at least imagine that there may be times when those services would be helpful and there is an excellent agency close to our house that comes highly recommended by people we trust.
I am in the middle of reading a book called Parenting an Adult with Disabilities or Special Needs that has been very enlightening. And overwhelming. I like to say that it's good for me to take each day as it comes and try not to get too far ahead of myself thinking about the future with Jude. It's just all too daunting. However, that practice really isn't entirely responsible. There are some things that need to be planned for well in advance of Jude's adulthood and there is a lot that goes into transitioning that can't be put off until later. For example, things like wills, special needs trusts, and written plans about doctors, dentists, likes and dislikes, routines, allergies, medications, triggers, and histories for your child need to be in place in case the unthinkable happens. All of this should be revisited frequently, maybe around the time of his birthday yearly so that updates can be included. If something were to happen to Steve and me tomorrow, say we both get hit by a bus or struck by lightning, we'd need to have things in place for Jude so that he is well cared for and protected. It's given me a lot to think about. It had me a little anxious and tachycardic earlier today reading about all the things that I need to consider and all the hiring, training, checking on, and sometimes firing of support staff that lies ahead for me, but then I thought, well...like everything else along the journey thus far, we'll just dig deep and do it because we love him want the best for him and because that is what will be required to get the job done. We will rise to it because that is what he needs us to do. We'll do whatever it takes to try and ensure that Jude's life is happy, healthy, comfortable, stimulating, and fulfilling and that because of the work we put in to plan for all that, the burden will be lessened for those after us like his siblings or other friends and family who love him in the event that we are unable to oversee his care as time goes on. Like I said, it's a lot to think about. Right now, I think I'll go fire up the grill and make us some burgers. All this distant future stuff does have me a little confounded and hungry.
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