A green-purple hole
In recent conversations with various folks I noticed something strange: Many talk to me as if Liam was never here, as if I didn't lose my daughter. I find this interesting for several reasons:
Thanksgiving Memories
In past years, when Liam was around, we always made an effort to be at the beach over Thanksgiving. Liam loved the beach (and so did the rest of us). There's an emphasis on the word 'effort'. For e typical family, one that does not have a special need child, it's a pretty easy deal - especially in this internet age: You find a house/apartment/condo in the area you want, with the size of your desire, at the price you can afford, etc. You book it, you go. Done. But for a family with a special need member, it's could be almost a nightmare.
Let's start with the search: That's a process I started many months in advance. Many [most?] property owners or agents don't really know what 'wheelchair accessible' really means and truth to be told, it's not always that easy. For example, the landlord, upon hearing the word wheelchair, may think it's an elderly or a sick/injured person, one who can [usually] get up from his/her chair to climb one stair or get in/out of a car. Very few of them understand what 'it's a 300 pound power chair....it can't climb stairs...it needs room to turn...'. "Oh", many would say, "the house has only 2-3 stairs.....is that a problem?" Yes, that is indeed a problem. A big one too. Most landlords are not trying neither to make life more difficult nor do they try to sell the property (well, sure they do, but not to the point of misleading you). For a matter of fact, I believe that they're truly trying to help. Unfortunately, most people are ignorant regarding the needs of a family with a special needs child. It was just difficult, next to impossible, to find a house which:
All this, remember, and we're still only during the search phase. We're yet to leave home. If, in the best case scenario, we found a house somewhere, we continued to live in doubt until arrival: would all those many things we asked the landlord about really be as he assured us?
Loading the van was an adventure on its own, if I can call it that. We always traveled with tons of equipment: In addition to Liam's everyday wheelchair, in which she traveled in, we took a beach wheelchair (on top of the van), Liam's trike, my bike, often Meitav's bike too; oxygen machine + a reserve tank; boxes with medical and special hygiene supplies; extra sheets and towels and cloths - since we never knew what kind of 'accidents' to expect; etc., etc., etc. (And, did I mention that being a short Ashkenazi Jew is not really helpful when you need to put big, heavy stuff on top of the van? And unload it at the beach, and load it for day trips, and unload....yes, we traveled with a step ladder too.) But as packed as the minivan was, it had to be loaded in a thoughtful manner. We couldn't just shove everything in. Most importantly, we needed to enable a fast out-in for Liam and her wheelchair in case on emergencies. Even without such emergencies, we still needed to stop several times on the long drive to the beach to eat and allow her to stretch (and change diapers etc.) I know that this description probably sounds too "dry", too abstract. One has to live through it in order to feel it. It's quite impossible to relay to others all this work, this effort, but mostly the uncertainty of how the next few days would be.
Travel with Liam was a-ok when she was younger, but the older she got, the more difficult it got. First of all, she was uncomfortable sitting in her wheelchair for such a long ride - especially after the many medical procedures she's went through. Unlike other kids who may read or play games during such rides, Liam could do nothing. She just sat there, stuck in her wheelchair, staring into the road. We would feed her (and feed her, and feed her, and feed her) and read her some stories, but she lost patience early and often. Back when she was younger we traveled with two child car seats - plus the wheelchair. We would "ask" Meitav to sit all the way in the back among the bags and boxes, which was unfair and unpleasant for her, but we had no choice. So the ride itself was a hassle.
The first thing to do when we got to the beach house was to attend to Liam, change her, let her stretch. Meanwhile, one of us would scan the property: Are there any unexpected stairs? How accommodating is the bath? Can the wheelchair maneuver in the house? Is there a wheelchair access to the beach? If not, how far is one? Again, there were many more such questions and checks. If any of the conditions turned out to be bad, we had to think what to do about it. This part of the blog is too short to list all the things we were promised which never materialized. These range from an unexpected step-up somewhere to too narrow passages to too small baths traces of rats. If it's dirty stuff, maybe you can get the landlord to address the issue. But, what do you do if the problem is structural? In the 15 years of Liam's life, we never found a property we could return to. Never.
Who doesn't like to get to the beach, kick the shoes off, and run to the water before anything else? Unfortunately, for a family with a special need child that's not possible. First we had to unload half the van, assemble her beach wheelchair, support her with towels/blankets so she wouldn't fall/slide away (after we attended to her inside), put up a tent to protect her from the sun, put her in the tent, haul her out into the wheelchair, back to the tent, back to the wheelchair....you already see where this is going. Pushing the beach wheelchair in the loose sand is far from a 'walk on the beach'. It's a true workout. Back inside it's the usual attending to Liam - bathing her, changing diapers, getting her dressed, medications, etc., etc., etc - except all of that was done away from home, with no lift system and a small bath and small space, all of which makes everything so much more difficult. And such were our "vacations". It was more work than pleasure.
I imagine that you read all of the above as me bitching, as one big complaint. But the truth is that despite the hardship, we still loved to go to the beach and always looked forward to it. Just to see Liam at the beach was worth it. She loved the air (on most occasions....she didn't like cold wind), the sound of the waves, the sun on her face, the long walks. You could feel her spirit lifting, her skin looked better - everything. Well, maybe that was a slight exaggeration. We still had the usual many medical issues to address....it's not like the beach was a miraculous medicine that healed it all. But we all enjoyed it. For a matter of fact, during the last few months of her life, when we sensed the end might be inevitable, we discussed a last wish (with the Make A Wish Foundation). One of the first options discussed was going to the beach (with a nurse who would join us and oxygen and all the medical needs - the whole nine yards) to let Liam feel this air for the last time. It never materialized. Her condition did not allow for such trip.
So why I'm telling you all this?
First as a diary for myself. So that it'd be documented for when I'm old. Wait, I'm already old. Ok, so for when I'm really really old. Secondly, not so much to tell about our family, but to use it as an example to tell the world the challenges any family with a special need child goes through. And this is at a holiday, when it's supposed to be fun for everybody all the time. Just think of what other hardships they're going through at more challenging places - school, the Marta station, the Dr office (you'd be surprised how many of them are now accommodating for the disabled), etc.
Lastly, again, this all may sounds as bitching and complaining. It is not. We feel fortunate that we were able to go on those vacations and that Liam got to experience and enjoy the beach. There are too many families of special need kids who never get to go either because they can't afford it or maybe because their child's medical condition limits them.
In recent conversations with various folks I noticed something strange: Many talk to me as if Liam was never here, as if I didn't lose my daughter. I find this interesting for several reasons:
- Are people forgetting? Nah, can't be.
- So are they pretending?
- Or maybe people are intentionally refraining from mentioning her?
- But wait: It was ME who never wanted to be treated any differently just because of Liam. So maybe it's all in my own head?
Thanksgiving Memories
In past years, when Liam was around, we always made an effort to be at the beach over Thanksgiving. Liam loved the beach (and so did the rest of us). There's an emphasis on the word 'effort'. For e typical family, one that does not have a special need child, it's a pretty easy deal - especially in this internet age: You find a house/apartment/condo in the area you want, with the size of your desire, at the price you can afford, etc. You book it, you go. Done. But for a family with a special need member, it's could be almost a nightmare.
Let's start with the search: That's a process I started many months in advance. Many [most?] property owners or agents don't really know what 'wheelchair accessible' really means and truth to be told, it's not always that easy. For example, the landlord, upon hearing the word wheelchair, may think it's an elderly or a sick/injured person, one who can [usually] get up from his/her chair to climb one stair or get in/out of a car. Very few of them understand what 'it's a 300 pound power chair....it can't climb stairs...it needs room to turn...'. "Oh", many would say, "the house has only 2-3 stairs.....is that a problem?" Yes, that is indeed a problem. A big one too. Most landlords are not trying neither to make life more difficult nor do they try to sell the property (well, sure they do, but not to the point of misleading you). For a matter of fact, I believe that they're truly trying to help. Unfortunately, most people are ignorant regarding the needs of a family with a special needs child. It was just difficult, next to impossible, to find a house which:
- Was able to accommodate a power wheelchair (ground level/ramp/elevator; maneuvering inside the house).
- Was on the beach - because to schlep Liam to the beach every time, even if it was just 1/2 a mile, was just too difficult. What if she changed her mind the minute we got to the beach; or if it was too windy for her; or if she wouldn't feel good all of the sudden? Then all of us would have to pack up and leave. Not to mention packing/unpacking everything for the beach - including the huge beach wheelchair. If the house was on the beach, on the other hand, we could just wheel her in if we needed to.
- Had a bed for her at the right height.
- Had a nearby wheelchair access to the beach. This is another huge hurdle. Most properties have a deck/walkway to the beach, but in most cases this would have stairs somewhere.
- Was equipped with a large enough bath, because we couldn't give her showers away from home.
- Was at a beach or a beach town that is to our liking (for example, we found Myrtle Beach pretty accommodating, but we never liked that town).
- Was affordable enough.
- Etc., etc., etc. I only listed what came to mind quickly. There are too many other details in that calculation.
All this, remember, and we're still only during the search phase. We're yet to leave home. If, in the best case scenario, we found a house somewhere, we continued to live in doubt until arrival: would all those many things we asked the landlord about really be as he assured us?
Loading the van was an adventure on its own, if I can call it that. We always traveled with tons of equipment: In addition to Liam's everyday wheelchair, in which she traveled in, we took a beach wheelchair (on top of the van), Liam's trike, my bike, often Meitav's bike too; oxygen machine + a reserve tank; boxes with medical and special hygiene supplies; extra sheets and towels and cloths - since we never knew what kind of 'accidents' to expect; etc., etc., etc. (And, did I mention that being a short Ashkenazi Jew is not really helpful when you need to put big, heavy stuff on top of the van? And unload it at the beach, and load it for day trips, and unload....yes, we traveled with a step ladder too.) But as packed as the minivan was, it had to be loaded in a thoughtful manner. We couldn't just shove everything in. Most importantly, we needed to enable a fast out-in for Liam and her wheelchair in case on emergencies. Even without such emergencies, we still needed to stop several times on the long drive to the beach to eat and allow her to stretch (and change diapers etc.) I know that this description probably sounds too "dry", too abstract. One has to live through it in order to feel it. It's quite impossible to relay to others all this work, this effort, but mostly the uncertainty of how the next few days would be.
Travel with Liam was a-ok when she was younger, but the older she got, the more difficult it got. First of all, she was uncomfortable sitting in her wheelchair for such a long ride - especially after the many medical procedures she's went through. Unlike other kids who may read or play games during such rides, Liam could do nothing. She just sat there, stuck in her wheelchair, staring into the road. We would feed her (and feed her, and feed her, and feed her) and read her some stories, but she lost patience early and often. Back when she was younger we traveled with two child car seats - plus the wheelchair. We would "ask" Meitav to sit all the way in the back among the bags and boxes, which was unfair and unpleasant for her, but we had no choice. So the ride itself was a hassle.
The first thing to do when we got to the beach house was to attend to Liam, change her, let her stretch. Meanwhile, one of us would scan the property: Are there any unexpected stairs? How accommodating is the bath? Can the wheelchair maneuver in the house? Is there a wheelchair access to the beach? If not, how far is one? Again, there were many more such questions and checks. If any of the conditions turned out to be bad, we had to think what to do about it. This part of the blog is too short to list all the things we were promised which never materialized. These range from an unexpected step-up somewhere to too narrow passages to too small baths traces of rats. If it's dirty stuff, maybe you can get the landlord to address the issue. But, what do you do if the problem is structural? In the 15 years of Liam's life, we never found a property we could return to. Never.
Who doesn't like to get to the beach, kick the shoes off, and run to the water before anything else? Unfortunately, for a family with a special need child that's not possible. First we had to unload half the van, assemble her beach wheelchair, support her with towels/blankets so she wouldn't fall/slide away (after we attended to her inside), put up a tent to protect her from the sun, put her in the tent, haul her out into the wheelchair, back to the tent, back to the wheelchair....you already see where this is going. Pushing the beach wheelchair in the loose sand is far from a 'walk on the beach'. It's a true workout. Back inside it's the usual attending to Liam - bathing her, changing diapers, getting her dressed, medications, etc., etc., etc - except all of that was done away from home, with no lift system and a small bath and small space, all of which makes everything so much more difficult. And such were our "vacations". It was more work than pleasure.
I imagine that you read all of the above as me bitching, as one big complaint. But the truth is that despite the hardship, we still loved to go to the beach and always looked forward to it. Just to see Liam at the beach was worth it. She loved the air (on most occasions....she didn't like cold wind), the sound of the waves, the sun on her face, the long walks. You could feel her spirit lifting, her skin looked better - everything. Well, maybe that was a slight exaggeration. We still had the usual many medical issues to address....it's not like the beach was a miraculous medicine that healed it all. But we all enjoyed it. For a matter of fact, during the last few months of her life, when we sensed the end might be inevitable, we discussed a last wish (with the Make A Wish Foundation). One of the first options discussed was going to the beach (with a nurse who would join us and oxygen and all the medical needs - the whole nine yards) to let Liam feel this air for the last time. It never materialized. Her condition did not allow for such trip.
So why I'm telling you all this?
First as a diary for myself. So that it'd be documented for when I'm old. Wait, I'm already old. Ok, so for when I'm really really old. Secondly, not so much to tell about our family, but to use it as an example to tell the world the challenges any family with a special need child goes through. And this is at a holiday, when it's supposed to be fun for everybody all the time. Just think of what other hardships they're going through at more challenging places - school, the Marta station, the Dr office (you'd be surprised how many of them are now accommodating for the disabled), etc.
Lastly, again, this all may sounds as bitching and complaining. It is not. We feel fortunate that we were able to go on those vacations and that Liam got to experience and enjoy the beach. There are too many families of special need kids who never get to go either because they can't afford it or maybe because their child's medical condition limits them.
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