Today a mom is acting as nurse and doctor to try and keep her child out of the hospital.
Today a mom is sitting at her child's bedside in the hospital longing to take her home.
Today a mom is burying her 5 year old daughter.
These scenarios are common on any given day when you are living "this life". My news feed on Facebook provides stories like these far too often reminding us all that we are never too far from the edge ourselves.
There was news this week of yet another one of our special little friends passing on. I can easily count at least six children since this summer. Tomorrow isn't guaranteed for anyone, but when you have a medically fragile child you are always aware of how things can go downhill in the blink of an eye.
How do you cope? Everyone is different, but here are some of the ways I know of:
Some take medication - you know, "better living through chemistry"? I'm not ashamed to admit that I NEED it to get by, although I wish I didn't.
Some have vices like alcohol, food or cigarettes. It's not anything anyone wants to admit, but these are often the easiest things to access that might relieve some of the stress instantly. Most of us are not very good at taking good care of ourselves. By the time we make sure our children have what they need, there is nothing left most days.
Some rely heavily on their faith, though some wrestle with it. There is nothing worse than seeing your own child struggle so it's no wonder that even those with very strong faith sometimes question why such things can happen to their children.
Mostly, we spend a lot of time venting to and leaning on each other in the virtual world. Chances are if you have a MF child you don't have many friends in real life in the same situation. I believe that the internet has saved many of us from ourselves by allowing us to connect with each other so easily and honestly. I'm really not sure how moms like us made it before things like listservs, discussion boards and Facebook came along.
Thankfully we have each other to lean on when our children are sick or leave us, and to pull each other back when we get too close to going over the edge ourselves.
Sunday, October 16, 2011
Thursday, June 16, 2011
A Fine Line
One of the things we struggle with a lot is how to balance doing typical things with being cautious of Ella's medical issues. There seems to be a very fine line between being *normal* and being irresponsible when you have a medically fragile child.
Take going to the pool, for instance. I don't normally take Ella to the pool with me because, frankly, it's difficult to take Ella anywhere! But with pool season in full swing I found myself a little jealous of the other families playing together in the water and selfishly wanted to have Ella there too.
We do all of the usual things to get ready for the pool: put on her swimsuit, apply sunblock, get her a sun hat and glasses. But trach's don't mix well with water. Precautions are taken every day to simply bathe Ella, so putting her in a large body of water is risky since the trach tube leads directly to her lungs.
Aside from the fact that we need to be cautious of keeping the water below a certain level (and not dropping her of course!), we have to factor in the conditions we cannot control - like other people splashing and making waves. One little slip by anyone and we could have an emergency on our hands. So you have to ask yourself, is it really worth it?
I think it's like the saying that you've got to "live while you're alive". If you don't have any experiences at all, is that really living? So I'm trying to make a point to do more typical activities with Ella now that we have surrendered to the trach (meaning we've accepted that it's not going anywhere for a while), but it is definitely a struggle.
In a few months Ella will be going to school. Because of her medical conditions, we were given the option of receiving school services at home which was my original plan. But I know Ella will love school; she loves people, and it will be great for her development. Of course I'm worried sick about something happening while she is there or her picking up an illness, but I want her to live as normal a life as she can and experience things that a typical child would. Just don't expect to see me putting her on the school bus and waving goodbye!
Take going to the pool, for instance. I don't normally take Ella to the pool with me because, frankly, it's difficult to take Ella anywhere! But with pool season in full swing I found myself a little jealous of the other families playing together in the water and selfishly wanted to have Ella there too.
We do all of the usual things to get ready for the pool: put on her swimsuit, apply sunblock, get her a sun hat and glasses. But trach's don't mix well with water. Precautions are taken every day to simply bathe Ella, so putting her in a large body of water is risky since the trach tube leads directly to her lungs.
Aside from the fact that we need to be cautious of keeping the water below a certain level (and not dropping her of course!), we have to factor in the conditions we cannot control - like other people splashing and making waves. One little slip by anyone and we could have an emergency on our hands. So you have to ask yourself, is it really worth it?
I think it's like the saying that you've got to "live while you're alive". If you don't have any experiences at all, is that really living? So I'm trying to make a point to do more typical activities with Ella now that we have surrendered to the trach (meaning we've accepted that it's not going anywhere for a while), but it is definitely a struggle.
In a few months Ella will be going to school. Because of her medical conditions, we were given the option of receiving school services at home which was my original plan. But I know Ella will love school; she loves people, and it will be great for her development. Of course I'm worried sick about something happening while she is there or her picking up an illness, but I want her to live as normal a life as she can and experience things that a typical child would. Just don't expect to see me putting her on the school bus and waving goodbye!
Monday, April 11, 2011
Any Given Day
One thing about this life is that any given day the odds of something "going wrong" are not in your favor. Like today. Ella recently had a port placed for easy IV access and we were due to flush it for the first time, which has to occur monthly when it's not in use.
Our attempt at home was unsuccessful so off to the ER we went. For me, this made for quite a frustrating day. My tired and frazzled self loaded up Ella and all her gear and headed for the hospital. While we were sitting there waiting I was watching Ella as she looked around and grinned from ear to ear. She looked very pleased about the "change of scenery" unlike her mom.
As the parent of a developmentally delayed child, one of the things I am most adament about is that I do not want anyone to feel sorry for Ella because of her disabilities. (I discussed this in a previous post about empathy versus pity.)
I actually think we can learn a lot from special people like Ella. One of the reasons I believe she shouldn't be pitied is because she is so happy! Ella doesn't understand all that she has been through. She doesn't care that she has to spend her afternoon in the ER. She's just happy to go somewhere whether it's to the hospital or a party.
Wouldn't life be so much more enjoyable if we all had the ability to not let the stress and complications of everyday life get to us? In my opinion, that is a blessing. And who could feel sorry about that?
Ella in the ER waiting today.
Our attempt at home was unsuccessful so off to the ER we went. For me, this made for quite a frustrating day. My tired and frazzled self loaded up Ella and all her gear and headed for the hospital. While we were sitting there waiting I was watching Ella as she looked around and grinned from ear to ear. She looked very pleased about the "change of scenery" unlike her mom.
As the parent of a developmentally delayed child, one of the things I am most adament about is that I do not want anyone to feel sorry for Ella because of her disabilities. (I discussed this in a previous post about empathy versus pity.)
I actually think we can learn a lot from special people like Ella. One of the reasons I believe she shouldn't be pitied is because she is so happy! Ella doesn't understand all that she has been through. She doesn't care that she has to spend her afternoon in the ER. She's just happy to go somewhere whether it's to the hospital or a party.
Wouldn't life be so much more enjoyable if we all had the ability to not let the stress and complications of everyday life get to us? In my opinion, that is a blessing. And who could feel sorry about that?
Monday, April 4, 2011
Space Invaders
Having a medically fragile child takes over your house. When we first brought Ella home from the hospital after receiving her trach and the medical supply company started bringing in all of her equipment and supplies I said, "This is an awful joke someone has played on a person who hates clutter!" Thankfully we had recently moved from a two bedroom townhome to a larger three bedroom house or I probably would have run away. Our space had been invaded.
I'm sure most parents feel somewhat invaded by the amount of "stuff" you end up having around after you have a child. In addition to all of the normal things children have, we also have Ella's medical-related stuff piled on top of it. Our living room resembles a mix of romper room and a hospital room with toys and such strewn about alongside a feeding pump, suction machine, nebulizer, pulse ox monitor and CPT vest machine. In the kitchen there is a regular pharmacy with tons of medicines and syringes and feeding supplies. Upstairs in Ella's room there is another suction machine and her ventilator and heater for when she sleeps. Our laundry room houses the monstrous air compressor for when she needs oxygen, and both the closet under the stairs and the one in Ella's room look like medical supply warehouses.
Beyond the stuff, there are people who routinely invade our space including Ella's nurses and therapists. I don't mean this in a negative way, but it's not often that there isn't someone other than just the three of us in our home. People often want to know exactly "how it works" with the nurses so I'll tell you. In the beginning Ella received nursing care 24/7 so there was literally a nurse here every hour of every day. It did take some getting used to and sometimes still does. It's kind of a catch 22 because you WANT them here for the help but you also get really tired of having outsiders in your home all the time. Not that we would want to walk around in our underwear or anything (well, I can't speak for John), but you do have to be mindful that you have "company" and maybe watch the things you say, wear and do.
We now receive 77 hours a week of nursing and can plan whatever shifts we want depending on our schedules. For the most part, we have someone here with Ella for about 8 hours a day on weekdays so that we can work and run errands. On the weekends we try and have overnight shifts so that we can go out as a couple and sleep in which is nice. When the nurses are here their job is to take care of Ella so they sit with her, play with her, suction her, feed her, change her, bathe her, perform trach care, and give her medicines, nebulizer and vest treatments. I have to admit I am a little spoiled since I hardly ever have to give my child a bath. (Bathing a child with a trach isn't the most fun thing to do in the world!)
Some of our nurses even go as far to do Ella's laundry. And they are also good about helping me keep track of her medicines and supplies. But you can become too dependent on the help which is when problems sometimes arise; that is something I have had to learn. There is also a fine line between invading their space and letting them do their job and wanting to take care of or spend time with Ella myself when they are here.
The rare times when it is just me, John and Ella can feel strange. And then of course John and I have to figure out how to divvy up the responsibilities ourselves, but we make it work. Speaking of, it's 9 o'clock and I'm pretty sure it's HIS turn to draw the medicines...
I'm sure most parents feel somewhat invaded by the amount of "stuff" you end up having around after you have a child. In addition to all of the normal things children have, we also have Ella's medical-related stuff piled on top of it. Our living room resembles a mix of romper room and a hospital room with toys and such strewn about alongside a feeding pump, suction machine, nebulizer, pulse ox monitor and CPT vest machine. In the kitchen there is a regular pharmacy with tons of medicines and syringes and feeding supplies. Upstairs in Ella's room there is another suction machine and her ventilator and heater for when she sleeps. Our laundry room houses the monstrous air compressor for when she needs oxygen, and both the closet under the stairs and the one in Ella's room look like medical supply warehouses.
Beyond the stuff, there are people who routinely invade our space including Ella's nurses and therapists. I don't mean this in a negative way, but it's not often that there isn't someone other than just the three of us in our home. People often want to know exactly "how it works" with the nurses so I'll tell you. In the beginning Ella received nursing care 24/7 so there was literally a nurse here every hour of every day. It did take some getting used to and sometimes still does. It's kind of a catch 22 because you WANT them here for the help but you also get really tired of having outsiders in your home all the time. Not that we would want to walk around in our underwear or anything (well, I can't speak for John), but you do have to be mindful that you have "company" and maybe watch the things you say, wear and do.
We now receive 77 hours a week of nursing and can plan whatever shifts we want depending on our schedules. For the most part, we have someone here with Ella for about 8 hours a day on weekdays so that we can work and run errands. On the weekends we try and have overnight shifts so that we can go out as a couple and sleep in which is nice. When the nurses are here their job is to take care of Ella so they sit with her, play with her, suction her, feed her, change her, bathe her, perform trach care, and give her medicines, nebulizer and vest treatments. I have to admit I am a little spoiled since I hardly ever have to give my child a bath. (Bathing a child with a trach isn't the most fun thing to do in the world!)
Some of our nurses even go as far to do Ella's laundry. And they are also good about helping me keep track of her medicines and supplies. But you can become too dependent on the help which is when problems sometimes arise; that is something I have had to learn. There is also a fine line between invading their space and letting them do their job and wanting to take care of or spend time with Ella myself when they are here.
The rare times when it is just me, John and Ella can feel strange. And then of course John and I have to figure out how to divvy up the responsibilities ourselves, but we make it work. Speaking of, it's 9 o'clock and I'm pretty sure it's HIS turn to draw the medicines...
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