Does it ever get any easier watching your baby go in for surgery? Does the fear ever go away? Do you ever stop wondering if you are doing enough? Or the right thing? Do you feel like everyone around you thinks you should be used to it all by now, and you need to get over it? Do special needs kids get visitors in hospital like regular kids do? Or do we all just do a little dance of excitement when we see another one of the special families we have met up there as well, because they are the only friends we have left these days?
Two and a half weeks ago, Samara had a BARD feeding button surgically implanted. I spent the weeks leading up to surgery second guessing myself. Did she really need it? Was I doing enough to keep her weight and fluid intake up, while not causing aspirations to happen? Not many kids with DS end up with buttons. And the ones that do are usually those with serious heart conditions or leukaemia. Samara has neither. So what was I doing wrong? She wasn't terribly underweight, but her weight has been fluctuating between 18 and 20 kg for almost 2 years now. She will have a healthy patch and gain, then get sick and lose it again. She often ended up in HDU (High Dependency Unit) just for hydration because her aspiration causes fear, which in turn leads to refusal to drink. So a simple cold can lead to an admission for fluids. Because she is on CPAP the regular wards won't take her, although I am told the new hospital will be different in that respect.
But what if it was the wrong thing to do? Even after a year of contemplating this option, and trying to avoid it, I still have been second guessing myself.
Things went well with the procedure. She needed a night in PICU and some oxygen overnight, but that's part of her being high risk (and why every GA causes me to panic!). Then on Saturday she developed a cough. By evening she had a fever and was breathing rapidly. Thinking this was another pneumonia starting, we went off to hospital. She was admitted and put on oxygen. Her chest X-Ray was clear, so no-one knew why she had such low O2 levels, and all the other symptoms she had.
Sunday morning we set up her feed. But it was pouring out as fast as it was pumping in. She also was screaming in pain. She wouldn't let anyone near her button. It was decided to stop her feeds and just offer oral food and fluid through her drip.
Every time she ate anything with texture (all she would tolerate was custard) she would start screaming and throw it across the room after two spoons of it.
Monday morning the Respiratory team came in and discharged her. But we were still there to see the Gastro team. They came in, and said she needed to see the Surgical team because the BARD was surgically implanted, and was still a fresh wound. The Surgical team told us to go home and make an appointment with the surgeon who did the surgery, because we had it done privately and we were in a public hospital under a public dr. I refused and said that was ludicrous. She was in pain, and wasn't eating or drinking. If anything she would be back within hours due to dehydration! Also, I didn't care whether she had it done privately or public ally. I just wanted it fixed! So they rang the surgeon who ordered a contrast dye and X-ray. This showed that the interior part of the BARD had migrated. It was no longer in the stomach. Because we had only given one feed since it had happened, it was still in the tract formed by the Stoma. If we had given further feeds like they had originally suggested, we likely would have caused further damage and fed her into the cavity around her stomach, which can be fatal.
The surgeon who originally inserted the BARD was working publicly at the hospital yesterday so it was organised to operate on Tuesday. It turns out that the Ehlers Danlos she is not yet diagnosed with (but her sister has been, and I likely will be tomorrow when I see the rheumatologist) means the connective tissues in her stomach were simply not strong enough and fast enough at healing, to hold it in place. They replaced the BARD with a Mic-Key button instead, which can be replaced without a GA if it should happen again.
After the anaesthetic, she woke up in a laryngospasm which caused her oxygen levels to drop dramatically. She then panicked, which made it worse. Was pretty scary for a while there. Thankfully, after some oxygen, steroids and a few hundred rounds of "I can sing a rainbow" things settled back to normal.
We are back home today, and her feeds are going well so far. But the whole experience was horrible. And it has me second guessing myself yet again.
It really is hard work mentally being a special needs parent sometimes! The one thing I wish, was that all my friends from "before" would understand the pressure. The fear. The guilt. That goes along with this journey. I love Samara so much it hurts. Literally. It hurts to see her suffer. It hurts to see her get left out. It hurts to think of the future.
But I am conflicted. Because through it all, I can honestly say she has been the most amazing thing that has ever happened to me. Thing is the wrong word. But it covers every other experience I have ever had. I wouldn't change her for the world. But I would give my life to have her not go through the bad stuff. It just isn't fair!
Wednesday, November 5, 2014
Thursday, June 26, 2014
Wow. That's all I can say. Wow. I am speechless.
I just received this email from our church:
Hi there Carolyn
Hi there Carolyn
How are you all! I understand you have had a busy month or so with moving and travel etc. I hope you have all been keeping well with the number of viruses doing the rounds also.
I just wanted to update you briefly on some changes in Nexus Kids should you be planning to come back to visit Nexus again soon.
In response to our increased general attendance on a Sunday in Kids Church, and therefore needing to respond to the ministry growth with more leaders and team, we have had to review our policy for the children with additional needs who attend on a Sunday. We have a number of families already who this applies to. I wanted to let you know of our change in policy as it does effect Samara's attendance in Nexus Kids.
Under these new arrangements the family of the child (with additional needs) will be required to provide a 1 on 1 carer / assistant to be present (for the entire service) with the child attending Nexus Kids. A child deemed to fall into this category is one who:
- Has additional needs (behavioural, physical, social, health, developmental etc) that require 1 on 1 supervision for their entire time in our program;
- Has needs (behavioural, physical, social, health, developmental etc) that require special care, management skills, training, knowledge and capability outside of those skills and capability that our volunteer team are equipped with.
The carer to be supplied by the family has to be either a:
- Parent of the child
- Full time carer of the child
- Blue Carded adult (supplied by the family)
The carer would attend to their child only, and work with the Nexus Kids Team to ensure their child is included in the larger groups teaching and activities.
We want to ensure every child that attends Nexus Kids has a fun and safe experience and we recognise that a supervision strategy and additional needs policy needs to be in place to ensure that can happen.
I am very happy to chat about it if you would like.
Kind regards
RM
I can't even begin to respond to this. I guess God only wants volunteers to be there for those who have an easy life.
Thursday, May 22, 2014
What should the church be doing to reach the disabled?
Ok, it has been so long that I had to reset my password cos frankly I didn't have a clue what it was. But I am once again feeling frustrated, and this is my venting spot. It isn't really all I ever care about. But I am too lazy to write when I have nothing worth saying. And this is something that matters. And matters a lot.
We now live back in the city. Things are a lot different from what they were in a town of 7000. It is easy to get lost in a city of two million people. Easy to be forgotten. Not noticed. Anonymous. Sometimes that's a good thing. Other times, not so much.
But my disillusionment with churchianity has kept me away for a long time. I decided to try a new approach. A big church. A church with a heart for the community. And a place that might have more to offer a struggling teenage daughter. And overall, I must say, I am happy there. They have done what they can to help us in our current situation of having to move house, by firstly paying a packer, and then some meals. They have been very welcoming of Samara, trying to do what the can to make the Sunday school a place she can safely be a part of. They are even talking about making up communication cards for her. Great! So why am I here to vent, if we feel so welcome there?
I will tell you why. Because something is missing. In a church with Sunday school classes of up to 30 children per year level, there are only 2, yes, that's right, 2 children with obvious disabilities. And when I say that, I mean I was told that there was one other child with a disability in an older class. They have been so welcoming of Samara. So what's the problem? Statistically, there should be more people in that church with special needs. Why aren't they there? Where are they? If Christians are the major group fighting for the rights of unborn children, then one should be able to safely assume that their children aren't among the 98% of prenatally diagnosed children with DS who are slaughtered for their "sin" of being just who God made them to be. And one would assume that applies to the other conditions that can be diagnosed before birth too. So really, there should be more people with disabilities in our churches. But there isn't. And that bugs me. A lot. Because there is only one reason that makes any sense. And that is, that the church is not reaching out to them in the communities. And, there must also be an element of people leaving a church because they no longer feel that they fit in.
I have been doing a short course at church on Random Acts of Kindness. Now, this is run during the daytime, so there are a limited number of people who can attend. There are 8 groups being run, each in a different subject. I can't remember the topics off the top of my head, but they are topics such as the gift of prophecy, the lesser known women of the Bible, finding who you are, and your worth in Christ is the major gist of it. And there is a time for that. We need that grounding. BUT with each group having a maximum of (I think) 10 people, do you know how many chose random acts of Kindness? ONE. Me. That's it. Everyone else chose subjects that would in one way or another end up centering on their own value in Christ. Not through works, but by grace through the gifts He has given.
But Jesus always started by doing good things, not just preaching. He praised the humble simple works of others. He lived that life Himself. He hung around the lost, the "least of these". Not the Pharisees and the hoity toity of Jewish society. He very rarely preached. He simply lived. And his life was what gathered the people in. It was His actions that caused them to listen. And listen, they did. From that one Man (granted, he was God, but He lived as a man) the world was completely changed. And yet, for a Man on a mission, he didn't say an awful lot. But he did do a lot.
So why are the "least of these" no longer flocking to our churches? Why are they happier not having any part of these followers of Christ? Anyway, this week I tried to share my post on the Open Letter to the Church. I say tried, because I was stopped. We had an extra three people in our group besides me and the lady running it. I was told she knew where I was going with this, and is obviously had a lot of pent up anger because I felt the church was not meeting my needs. Yes, I do have a lot of pent up anger. But not because my needs are being met. Because those Jesus specifically spoke of - THEIR needs are not being met! But I was crying by this point. And that just "proved" that was the problem. But I was crying, because once again this extremely important topic was brushed aside. These people and their situation was once again out in the too hard basket.
She even went to some of the leaders in the church and told them I was saying the church wasn't meeting our needs, which put them on the defensive because they have gone out of the way to try and accommodate her. But they just would not get what I was saying. They did hit a raw spot by saying I was taking on too much and needed to look after me, and they are right there. But the need doesn't go away if I stop. No, I can't change the face of disability throughout Australia. But you know what? The church could. Not just our church. Every church. Imagine the change! An act of kindness directed towards the disabled community being something that every Christian strived to do. Something that just makes them feel valued in some way. It might be volunteering, or financially helping out, a visit in hospital, or just a kind word. It doesn't have to be any bigger than all the other missions the church runs for single mums, for the homeless, for the elderly. All great causes to be sure. But why is the disabled community not being reached out to? If we are to treat "the least of these" (which in no way means they are the least, but simply that society treats them as the least) as if we are entertaining angels, then quite frankly, being an angel must be a pretty scummy job.
THE STARFISH STORY
One day, a man was walking along the beach, enjoying the morning sun and cool breeze from the ocean.Suddenly, far off in the distance, he saw what looked like someone dancing. But as he drew closer, the man noticed that it was a little girl picking up starfish from the shore and tossing them back into the ocean.As he approached the girl, he paused for a moment, kind of puzzled, then asked, “Young lady – why are you throwing starfish into the ocean?”And she replied…”Well, the sun is up, and the tide is going out. If I leave these starfish on the beach, the sun will dry them up and they will die.”And the man said “But there are thousands of starfish washed up all along this beach for miles! You can’t possibly make a difference!”The young girl thought for a moment, then slowly leaned over, and carefully picked up another starfish from the sand. And with the starfish in hand, she turned to the man and gently said “You may be right, but it’ll make a difference to this one!”And with that, she reached back and threw the starfish as far as she could back into the ocean.
With my charity www.facebook.com/ArohaAngels I am trying to do my part. That not most peoples calling. And that's ok. It isn't that God wants us all out there doing the same thing. Would kind of defeat the purpose. But each of us is capable of picking up even one starfish and saving it.
Every single child is precious is God’s sight!“For he will deliver the needy who cry out, the afflicted who have no one to help. He will take pity on the weak and the needy and save the needy from death. He will rescue them from oppression and violence, for precious is their blood in his sight.” Psalm 72: 12-1
There is no excuse. If we are to be as Christ to this world, we have a responsibility to do as He would do. Your part may seem so small as to be insignificant. But no act of kindness is insignificant. Not to the one upon whom the kindness is bestowed.
We now live back in the city. Things are a lot different from what they were in a town of 7000. It is easy to get lost in a city of two million people. Easy to be forgotten. Not noticed. Anonymous. Sometimes that's a good thing. Other times, not so much.
But my disillusionment with churchianity has kept me away for a long time. I decided to try a new approach. A big church. A church with a heart for the community. And a place that might have more to offer a struggling teenage daughter. And overall, I must say, I am happy there. They have done what they can to help us in our current situation of having to move house, by firstly paying a packer, and then some meals. They have been very welcoming of Samara, trying to do what the can to make the Sunday school a place she can safely be a part of. They are even talking about making up communication cards for her. Great! So why am I here to vent, if we feel so welcome there?
I will tell you why. Because something is missing. In a church with Sunday school classes of up to 30 children per year level, there are only 2, yes, that's right, 2 children with obvious disabilities. And when I say that, I mean I was told that there was one other child with a disability in an older class. They have been so welcoming of Samara. So what's the problem? Statistically, there should be more people in that church with special needs. Why aren't they there? Where are they? If Christians are the major group fighting for the rights of unborn children, then one should be able to safely assume that their children aren't among the 98% of prenatally diagnosed children with DS who are slaughtered for their "sin" of being just who God made them to be. And one would assume that applies to the other conditions that can be diagnosed before birth too. So really, there should be more people with disabilities in our churches. But there isn't. And that bugs me. A lot. Because there is only one reason that makes any sense. And that is, that the church is not reaching out to them in the communities. And, there must also be an element of people leaving a church because they no longer feel that they fit in.
I have been doing a short course at church on Random Acts of Kindness. Now, this is run during the daytime, so there are a limited number of people who can attend. There are 8 groups being run, each in a different subject. I can't remember the topics off the top of my head, but they are topics such as the gift of prophecy, the lesser known women of the Bible, finding who you are, and your worth in Christ is the major gist of it. And there is a time for that. We need that grounding. BUT with each group having a maximum of (I think) 10 people, do you know how many chose random acts of Kindness? ONE. Me. That's it. Everyone else chose subjects that would in one way or another end up centering on their own value in Christ. Not through works, but by grace through the gifts He has given.
But Jesus always started by doing good things, not just preaching. He praised the humble simple works of others. He lived that life Himself. He hung around the lost, the "least of these". Not the Pharisees and the hoity toity of Jewish society. He very rarely preached. He simply lived. And his life was what gathered the people in. It was His actions that caused them to listen. And listen, they did. From that one Man (granted, he was God, but He lived as a man) the world was completely changed. And yet, for a Man on a mission, he didn't say an awful lot. But he did do a lot.
So why are the "least of these" no longer flocking to our churches? Why are they happier not having any part of these followers of Christ? Anyway, this week I tried to share my post on the Open Letter to the Church. I say tried, because I was stopped. We had an extra three people in our group besides me and the lady running it. I was told she knew where I was going with this, and is obviously had a lot of pent up anger because I felt the church was not meeting my needs. Yes, I do have a lot of pent up anger. But not because my needs are being met. Because those Jesus specifically spoke of - THEIR needs are not being met! But I was crying by this point. And that just "proved" that was the problem. But I was crying, because once again this extremely important topic was brushed aside. These people and their situation was once again out in the too hard basket.
She even went to some of the leaders in the church and told them I was saying the church wasn't meeting our needs, which put them on the defensive because they have gone out of the way to try and accommodate her. But they just would not get what I was saying. They did hit a raw spot by saying I was taking on too much and needed to look after me, and they are right there. But the need doesn't go away if I stop. No, I can't change the face of disability throughout Australia. But you know what? The church could. Not just our church. Every church. Imagine the change! An act of kindness directed towards the disabled community being something that every Christian strived to do. Something that just makes them feel valued in some way. It might be volunteering, or financially helping out, a visit in hospital, or just a kind word. It doesn't have to be any bigger than all the other missions the church runs for single mums, for the homeless, for the elderly. All great causes to be sure. But why is the disabled community not being reached out to? If we are to treat "the least of these" (which in no way means they are the least, but simply that society treats them as the least) as if we are entertaining angels, then quite frankly, being an angel must be a pretty scummy job.
THE STARFISH STORY
One day, a man was walking along the beach, enjoying the morning sun and cool breeze from the ocean.Suddenly, far off in the distance, he saw what looked like someone dancing. But as he drew closer, the man noticed that it was a little girl picking up starfish from the shore and tossing them back into the ocean.As he approached the girl, he paused for a moment, kind of puzzled, then asked, “Young lady – why are you throwing starfish into the ocean?”And she replied…”Well, the sun is up, and the tide is going out. If I leave these starfish on the beach, the sun will dry them up and they will die.”And the man said “But there are thousands of starfish washed up all along this beach for miles! You can’t possibly make a difference!”The young girl thought for a moment, then slowly leaned over, and carefully picked up another starfish from the sand. And with the starfish in hand, she turned to the man and gently said “You may be right, but it’ll make a difference to this one!”And with that, she reached back and threw the starfish as far as she could back into the ocean.
With my charity www.facebook.com/ArohaAngels I am trying to do my part. That not most peoples calling. And that's ok. It isn't that God wants us all out there doing the same thing. Would kind of defeat the purpose. But each of us is capable of picking up even one starfish and saving it.
Every single child is precious is God’s sight!“For he will deliver the needy who cry out, the afflicted who have no one to help. He will take pity on the weak and the needy and save the needy from death. He will rescue them from oppression and violence, for precious is their blood in his sight.” Psalm 72: 12-1
There is no excuse. If we are to be as Christ to this world, we have a responsibility to do as He would do. Your part may seem so small as to be insignificant. But no act of kindness is insignificant. Not to the one upon whom the kindness is bestowed.
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