I have just been watching a video on You-tube about a little girl (Gabby) who recently died after open heart surgery. Her mother is on one of the Down Syndrome forums I frequent. The song in the background is You're Amazing (or something like that!)
I have been in tears a lot lately. I am so scared about what is going on with Samara's lung, and with the bronchoscopy she has to have on Wednesday. The bronch isn't in itself a major surgery. It's about as minor as they come. But the only history of anaesthetic that Samara has isn't the best. She desatted into the 20's and caused a pretty big stir in the ICN. Also, there is the possiblility of them finding something that means further surgery on her lung. And that is a terrifying thought.
Young Gabby was such an adorable little girl. And watching the video and pictures of her, I couldn't help thinking that they had no idea at the time that these images would be all they would have left of their little baby. And, I am scared that we could find ourselves just like them. I am terrified of letting go. Of trusting God. No matter what.
I just want to pick her up out of her bed, and hug her so tight. I never want to let her go. She may have only been with us a short time so far, but I cannot ever imagine life without her. The last 16 months since she was born (and the months of anxiety before she was born) have been a massive rollercoaster. There have been high highs, and low lows. And I would go through them all again to have her in our lives. We have been so blessed, that I am scared we are running out of blessings!
Totally illogical. And there have certainly been some hard times associated with her diagnosis.
But I want the whole world to know, that Samara is one incredibly special little girl. She is 'So Amazing', and I love her so much that my heart is overflowing. Sometimes, we have to be faced with what the world would term as 'not so perfect', to realise what true perfection is. She has been fearfully and WONDERFULLY made. And that extra chromosome doesn't take away from that. If anything, it adds to it.
Monday, January 25, 2010
Thursday, December 31, 2009
The Sheer Wonder and Joy of having a child with DS
Ok, I have been asked about this. And the truth is, I have been pretty harsh on this blog. Not because it is primarily about the bad, but because I come here to vent/cry and let it all out. Then, I move on.
So, today is a new day, and I am going to put in a bit more effort with the positives. This may seem a bit jilted, because I am going to try and answer the question about the wonders and joys, rather than just spilling my guts so to speak, so please bear with me.
Having had 7 children, I have been through all sorts of ups and downs with them. And, now that 5 of those children have been/are going through the teenage years, I am getting to the point where I am starting to reap both the rewards and the punishments of my parenting skills (or lack there of!)
While it is true that my older girls will have more choices ahead of them in life, it is also true that some of the choices they make could cost them dearly. I hope and pray that they do not get involved in some of the truly scary things out there like the classic sex/drugs/alcohol scenes. I see them struggle with making adult decisions that could affect them for the rest of their lives. I see them worry about what their friends think/say/do, and where they fit in.
As they get older, they become more aware of who their true friends are. Yet they continue to make wrong choices due to peer pressure. Their faith gets tested in ways I never imagined. They start to question everything. It is all part of growing up. But it is a loss of innocence. A loss of the wonder of being a child.
BUT, and here's where one of the biggest joys comes in, Samara won't loose that innocence and wonder. She is extremely unlikely to go down the drug route. Sure, she will go through some of the teenage stuff, and go through rejection issues, but, from what I have learned, she won't be likely to let that rule her life. She is likely to always keep the innate ability to come to Christ as a 'little child'. Something the rest of us loose along the way.
During the night, Veritee woke up (something Samara never does unless she is sick). It was so hard to comfort her. She was pretty good and all. But with Samara, I can just hug her, and her whole body just relaxes into mine. She absolutely LOVES hugs. Admittedly, sometimes she goes a bit overboard with her vampire kisses, and hair pulling - her way of getting you closer - but her enthusiasm for cuddles is awesome! But Veritee just doesn't do that. My other kids were like that too. A short cuddle was fine, but then there was other stuff to do and they wouldn't stick around for long:)
Samara has this amazing ability to touch the hearts of everyone she meets. She is so sociable. People just gravitate towards her. She is always so aware of people, and will sit there for ages 'talking' to them, watching them, etc. In fact, at playgroup, she is totally smitten with her teacher aide, and would much sooner talk to her than do stuff!
In our society we put way too much emphasis on IQ, when something that the world is lacking in is EQ. Well, our kids certainly bring a huge amount of Emotional Intelligence into our world. I don't know exactly what it is, but they have the most incredible people skills. And they love unconditionally. A pure, sweet love that is so much more than the superficial love that we see so much of today.
When each of my other girls met their milestones, I was proud and happy. But when Samara reaches hers.....well the joy is indescribable. It brings tears to my eyes every time. I just absolutely burst with pride and joy! I have seen the struggle that goes with learning a new skill. I have felt frustrated when she has been frustrated. But, oh, the joy of reaching each mountain top! It is an emotion that goes beyond all others I have experienced as a mother.
I have also found the whole experience really fascinating. Our other kids all grew and changed so fast, I bearly had time to register each new thing as it happened. But with Samara I get to sit back, watch, and enjoy the ride. I have learned so much about all the steps that go into acquiring a new skill. Who would have known just how important all those seemingly pointless things a baby does? It really is amazing to see it all unfold in slow motion, and with the guidance of her therapists. We really do miss so much in the development of our 'regular' kids.
When I had my other girls, I was pretty much 'on my own'. I had to muddle through learning all the skills I would need to bring them up. But with Samara, the help and support is incredible. She has a lovely Physio, and Speech therapist who are constantly there cheering us on. Her teacher and teacher aide at the Woody Point Special School are both incredibly lovely ladies. Every health issue she has, I have a miriad of professionals I can discuss them with - a lot harder with the other kids - they seem more willing to listen to Samara's problems than with the others.
I have inherited a whole new family. Because, that extra chromosome links us in a mysterious way to so many people around the globe, who have experienced that extra dimension in our lives. We come from all walks of life, and yet we share a bond that goes beyond anything else I have found. There is something amazing about finding others who just 'get it'. I can't explain it really, but those of you who have experienced this will know what I mean.
I have learned so much about myself. Not all of it good, but all of it worthy. As in, I have been changing, for the better. The value I put on life, on others is increasing. I have always been a caring person, but somehow, in the last year something deeper has been happening in my heart. My capacity for love is growing.
My bond with Samara has been strong out of necessity. Whenever I didn't feel like being up to the parenting task with the others, I would opt out emotionally. But with Samara, I have to be there. I have to put the effort into doing her therapy, playing with her, singing to her, whether I feel like it at the time or not. And that is a good thing. It stops me from withdrawing and sinking into further depression (something I have battled with all my adult life). And it strengthens the bond between the two of us.
Whenever Samara sees either Michael or I, her whole face lights up. She is so excited to be with us. She hasn't reached that 'ho-hum,I'd rather be doing other things' stage that most kids her age have reached. I love that she loves us so much!
I really do hate the health issues she has. But even these have a bright side. They make me appreciate every minute of her life. Because I worry about all the things that could happen, and because I have 'met' people who have lost their little ones, I really value the time I have with her. We have been really blessed, in that she has no heart issues, and I do worry excessively about her breathing issues, and the upcoming operation (more on that in a separate post), but I do like the way that these worries help to underscore and accentuate my love for her.
She has the most gorgeous eyes. How often do you get to see a child who has stars in their eyes? Well, my little girl has them. They are adorable!!
My life is more 'real' since Samara became a part of it. The things that really matter seem so much clearer. Sure, I still have plenty of unworthy hangups, but my ability to get past them is improving. And my ability to stand up and fight has improved. Sometimes I have to face issues that I would have let slide with the others. But no more. Now I have to get past my own insecurities and push for medical help, therapies etc. I am becoming a stronger person.
Another, unexpected advantage has been that I have gotten to see Michael in a new light. I tend to get really fed up with his attitudes and anger issues. He tends to be a bit of a 'grumpy old man'. But with Samara, I see his countenance changing. He relaxes. He laughs. He plays. He loves. He is the father to her that I wish he was with the others. Maybe, his heart will change toward them too, as he learns to have a fathers love for his baby daughter. He never had a decent role model. But, somehow, in one of those unexplainable ways, this little girl is showing him the way.
I could go on and on. I guess I already have. And like I thought it would be, this post has ended up a disjointed mish-mash! But I keep on rambling because I just can't find the words to describe the stirring in my heart. I keep hoping I will hit on it. That I will be able to put in writing the love I have for my little girl. But it is beyond anything that can be expressed in words. I wish that I could lay out those feelings for you. And that is why I wish everyone could have a T21 baby. Because there is no other way, than to experience it for yourself.
So, today is a new day, and I am going to put in a bit more effort with the positives. This may seem a bit jilted, because I am going to try and answer the question about the wonders and joys, rather than just spilling my guts so to speak, so please bear with me.
Having had 7 children, I have been through all sorts of ups and downs with them. And, now that 5 of those children have been/are going through the teenage years, I am getting to the point where I am starting to reap both the rewards and the punishments of my parenting skills (or lack there of!)
While it is true that my older girls will have more choices ahead of them in life, it is also true that some of the choices they make could cost them dearly. I hope and pray that they do not get involved in some of the truly scary things out there like the classic sex/drugs/alcohol scenes. I see them struggle with making adult decisions that could affect them for the rest of their lives. I see them worry about what their friends think/say/do, and where they fit in.
As they get older, they become more aware of who their true friends are. Yet they continue to make wrong choices due to peer pressure. Their faith gets tested in ways I never imagined. They start to question everything. It is all part of growing up. But it is a loss of innocence. A loss of the wonder of being a child.
BUT, and here's where one of the biggest joys comes in, Samara won't loose that innocence and wonder. She is extremely unlikely to go down the drug route. Sure, she will go through some of the teenage stuff, and go through rejection issues, but, from what I have learned, she won't be likely to let that rule her life. She is likely to always keep the innate ability to come to Christ as a 'little child'. Something the rest of us loose along the way.
During the night, Veritee woke up (something Samara never does unless she is sick). It was so hard to comfort her. She was pretty good and all. But with Samara, I can just hug her, and her whole body just relaxes into mine. She absolutely LOVES hugs. Admittedly, sometimes she goes a bit overboard with her vampire kisses, and hair pulling - her way of getting you closer - but her enthusiasm for cuddles is awesome! But Veritee just doesn't do that. My other kids were like that too. A short cuddle was fine, but then there was other stuff to do and they wouldn't stick around for long:)
Samara has this amazing ability to touch the hearts of everyone she meets. She is so sociable. People just gravitate towards her. She is always so aware of people, and will sit there for ages 'talking' to them, watching them, etc. In fact, at playgroup, she is totally smitten with her teacher aide, and would much sooner talk to her than do stuff!
In our society we put way too much emphasis on IQ, when something that the world is lacking in is EQ. Well, our kids certainly bring a huge amount of Emotional Intelligence into our world. I don't know exactly what it is, but they have the most incredible people skills. And they love unconditionally. A pure, sweet love that is so much more than the superficial love that we see so much of today.
When each of my other girls met their milestones, I was proud and happy. But when Samara reaches hers.....well the joy is indescribable. It brings tears to my eyes every time. I just absolutely burst with pride and joy! I have seen the struggle that goes with learning a new skill. I have felt frustrated when she has been frustrated. But, oh, the joy of reaching each mountain top! It is an emotion that goes beyond all others I have experienced as a mother.
I have also found the whole experience really fascinating. Our other kids all grew and changed so fast, I bearly had time to register each new thing as it happened. But with Samara I get to sit back, watch, and enjoy the ride. I have learned so much about all the steps that go into acquiring a new skill. Who would have known just how important all those seemingly pointless things a baby does? It really is amazing to see it all unfold in slow motion, and with the guidance of her therapists. We really do miss so much in the development of our 'regular' kids.
When I had my other girls, I was pretty much 'on my own'. I had to muddle through learning all the skills I would need to bring them up. But with Samara, the help and support is incredible. She has a lovely Physio, and Speech therapist who are constantly there cheering us on. Her teacher and teacher aide at the Woody Point Special School are both incredibly lovely ladies. Every health issue she has, I have a miriad of professionals I can discuss them with - a lot harder with the other kids - they seem more willing to listen to Samara's problems than with the others.
I have inherited a whole new family. Because, that extra chromosome links us in a mysterious way to so many people around the globe, who have experienced that extra dimension in our lives. We come from all walks of life, and yet we share a bond that goes beyond anything else I have found. There is something amazing about finding others who just 'get it'. I can't explain it really, but those of you who have experienced this will know what I mean.
I have learned so much about myself. Not all of it good, but all of it worthy. As in, I have been changing, for the better. The value I put on life, on others is increasing. I have always been a caring person, but somehow, in the last year something deeper has been happening in my heart. My capacity for love is growing.
My bond with Samara has been strong out of necessity. Whenever I didn't feel like being up to the parenting task with the others, I would opt out emotionally. But with Samara, I have to be there. I have to put the effort into doing her therapy, playing with her, singing to her, whether I feel like it at the time or not. And that is a good thing. It stops me from withdrawing and sinking into further depression (something I have battled with all my adult life). And it strengthens the bond between the two of us.
Whenever Samara sees either Michael or I, her whole face lights up. She is so excited to be with us. She hasn't reached that 'ho-hum,I'd rather be doing other things' stage that most kids her age have reached. I love that she loves us so much!
I really do hate the health issues she has. But even these have a bright side. They make me appreciate every minute of her life. Because I worry about all the things that could happen, and because I have 'met' people who have lost their little ones, I really value the time I have with her. We have been really blessed, in that she has no heart issues, and I do worry excessively about her breathing issues, and the upcoming operation (more on that in a separate post), but I do like the way that these worries help to underscore and accentuate my love for her.
She has the most gorgeous eyes. How often do you get to see a child who has stars in their eyes? Well, my little girl has them. They are adorable!!
My life is more 'real' since Samara became a part of it. The things that really matter seem so much clearer. Sure, I still have plenty of unworthy hangups, but my ability to get past them is improving. And my ability to stand up and fight has improved. Sometimes I have to face issues that I would have let slide with the others. But no more. Now I have to get past my own insecurities and push for medical help, therapies etc. I am becoming a stronger person.
Another, unexpected advantage has been that I have gotten to see Michael in a new light. I tend to get really fed up with his attitudes and anger issues. He tends to be a bit of a 'grumpy old man'. But with Samara, I see his countenance changing. He relaxes. He laughs. He plays. He loves. He is the father to her that I wish he was with the others. Maybe, his heart will change toward them too, as he learns to have a fathers love for his baby daughter. He never had a decent role model. But, somehow, in one of those unexplainable ways, this little girl is showing him the way.
I could go on and on. I guess I already have. And like I thought it would be, this post has ended up a disjointed mish-mash! But I keep on rambling because I just can't find the words to describe the stirring in my heart. I keep hoping I will hit on it. That I will be able to put in writing the love I have for my little girl. But it is beyond anything that can be expressed in words. I wish that I could lay out those feelings for you. And that is why I wish everyone could have a T21 baby. Because there is no other way, than to experience it for yourself.
The Truth Hits Hard
Veritee is staying here at the moment. Her mum, Kerrigh is in the hospital with complications in her pregnancy.
For those of you who don't know, Veritee is the youngest of Kerrigh's 6 girls (well, almost the second youngest of 7!) She was born at 30 weeks gestation, one week before Samara. They were due a day apart.
So, we met at the Royal Women's while our children were in the Intensive Care and then Special Care Nurseries, and we were at Ronald McDonald House.
Kerrigh was one of the first to bear the full brunt of my grief when Samara was diagnosed at 4 weeks of age.
Back in April, we went to stay with them. The girls' were 5 months corrected. I was petrified that I would find it hard seeing how much more Veritee was doing. But the truth is, Samara was holding her own pretty well, and Veritee was experiencing some delays. Now, don't get me wrong, I did worry about Veritee because, over the months Samara seemed to actually pass her in a lot of things. But, at the same time, it did make it easier to deal with when Samara wasn't doing too bad in comparison.
Well, as it turns out, Kerrigh was suffering from an anxiety disorder, and Veritee simply wasn't getting the stimulation she needed. Which, is actually good news as far as Veritee goes, because she has been getting a lot more of that stimulation lately.
But, today, while being overjoyed for Veritee, I was hit with a fresh wave of grief for Samara. Watching Veritee crawl, pull herself to stand, say quite a few words etc has been a harsh reminder that no matter how much Early Intervention we do, no matter how many dollars we spend on alternative therapies, no matter how much we pray, the truth is, Samara will always be left behind.
And it hurts. It really really hurts. I hate to see my baby girl sit there watching Veritee scooting around everywhere, with a real look of longing in her eyes. She wants to follow - to join the exploration. But she is stuck. She can move a little bit, but it takes her so much effort. I just want to cry out IT ISN'T FAIR!! Why does everything have to be so hard for my sweetie?
I know I have to get past this. If I have an attitude about it, she will end up with an attitude about it. For her sake, she needs to accept the way she has been designed. Because she was designed. She is not a mistake. We all have our crosses to bear. But for some reason, I wish I could take hers from her.
And yet, I do know how blessed we are to have her. A part of me wishes everyone could experience the sheer joy and wonder of having a baby with Down Syndrome. I find myself wishing all my pregnant friends would have a baby with T21. Is that bad? (of course, I would wish for them to have none of the medical issues that go with it!)
Anyway, I've said it now. I have had my cry. Time to move on. Thanks for listening.
For those of you who don't know, Veritee is the youngest of Kerrigh's 6 girls (well, almost the second youngest of 7!) She was born at 30 weeks gestation, one week before Samara. They were due a day apart.
So, we met at the Royal Women's while our children were in the Intensive Care and then Special Care Nurseries, and we were at Ronald McDonald House.
Kerrigh was one of the first to bear the full brunt of my grief when Samara was diagnosed at 4 weeks of age.
Back in April, we went to stay with them. The girls' were 5 months corrected. I was petrified that I would find it hard seeing how much more Veritee was doing. But the truth is, Samara was holding her own pretty well, and Veritee was experiencing some delays. Now, don't get me wrong, I did worry about Veritee because, over the months Samara seemed to actually pass her in a lot of things. But, at the same time, it did make it easier to deal with when Samara wasn't doing too bad in comparison.
Well, as it turns out, Kerrigh was suffering from an anxiety disorder, and Veritee simply wasn't getting the stimulation she needed. Which, is actually good news as far as Veritee goes, because she has been getting a lot more of that stimulation lately.
But, today, while being overjoyed for Veritee, I was hit with a fresh wave of grief for Samara. Watching Veritee crawl, pull herself to stand, say quite a few words etc has been a harsh reminder that no matter how much Early Intervention we do, no matter how many dollars we spend on alternative therapies, no matter how much we pray, the truth is, Samara will always be left behind.
And it hurts. It really really hurts. I hate to see my baby girl sit there watching Veritee scooting around everywhere, with a real look of longing in her eyes. She wants to follow - to join the exploration. But she is stuck. She can move a little bit, but it takes her so much effort. I just want to cry out IT ISN'T FAIR!! Why does everything have to be so hard for my sweetie?
I know I have to get past this. If I have an attitude about it, she will end up with an attitude about it. For her sake, she needs to accept the way she has been designed. Because she was designed. She is not a mistake. We all have our crosses to bear. But for some reason, I wish I could take hers from her.
And yet, I do know how blessed we are to have her. A part of me wishes everyone could experience the sheer joy and wonder of having a baby with Down Syndrome. I find myself wishing all my pregnant friends would have a baby with T21. Is that bad? (of course, I would wish for them to have none of the medical issues that go with it!)
Anyway, I've said it now. I have had my cry. Time to move on. Thanks for listening.
Tuesday, December 15, 2009
Loneliness
Have you ever felt totally left out. Like when you wonder if you have some form of leprosy or something. Like people just don't seem to like you.
It reminds me of school. When friends were hard to make. When you just can't seem to fit in, no matter how hard you try. Somehow, whatever social skills are needed just seem to elude you.
I guess it's the Aspergers traits I can see in myself. I find it hard to make friends, but I don't really understand what I am doing that turns people away. I genuinely care about others. And I do have some great friends and neighbours. But I still feel so much like an outsider. Like everyone is sniggering behind my back or something.
As dumb as it is, here I am at 3.30 in the morning, unable to sleep, because I am feeling rejected.
Did you ever belong to a group of people, who all seemed to click, but you were sitting on the outside desperately trying to be a part of them? A group where everyone gets invited to a special event except you? Where, for all intents and purposes, you should be as much a part of the group as anyone else. But something separates you?
What do you do, when everyone else is talking excitedly about their plans? Plans that you have been left out of.
Am I really that horrible to be around?
It reminds me of school. When friends were hard to make. When you just can't seem to fit in, no matter how hard you try. Somehow, whatever social skills are needed just seem to elude you.
I guess it's the Aspergers traits I can see in myself. I find it hard to make friends, but I don't really understand what I am doing that turns people away. I genuinely care about others. And I do have some great friends and neighbours. But I still feel so much like an outsider. Like everyone is sniggering behind my back or something.
As dumb as it is, here I am at 3.30 in the morning, unable to sleep, because I am feeling rejected.
Did you ever belong to a group of people, who all seemed to click, but you were sitting on the outside desperately trying to be a part of them? A group where everyone gets invited to a special event except you? Where, for all intents and purposes, you should be as much a part of the group as anyone else. But something separates you?
What do you do, when everyone else is talking excitedly about their plans? Plans that you have been left out of.
Am I really that horrible to be around?
Thursday, November 12, 2009
The Specials
This is just a quick post to let you know about a great reality show on the Web called The Specials. It is about 5 adults with intellectual disabilities living together in a house. It is great value and well worth a look.
To view the show, including past episodes, click on the link in the side bar.
Each episode lasts approximately 10 minutes.
Here is the first episode as a preview....
To view the show, including past episodes, click on the link in the side bar.
Each episode lasts approximately 10 minutes.
Here is the first episode as a preview....
Wednesday, October 21, 2009
Anniversary
I have just copied and pasted this from DSDU. It was written late Monday night so the dates don't fully match up, but those of you in America won't notice that anyway LOL.....
This time last year, we were enjoying our tiny new addition. She was 4 weeks old, and had progressed well from the Intensive Care Nursery, to Special Care. She was now 35 weeks gestational age. All was going well with her. We were just fattening her up ready to come home.We were blissfully unaware that our lives were about to change dramatically.On October 20 2008, we were delivered the blow that is Down Syndrome. We had absolutely no inkling that it was coming. We hadn't had time to duck, or even to flinch. We were hit full-on in the face with the news that our child would never be who we thought she was. At the time, it felt like a death. I felt like they had taken our baby and replaced her with someone else. Looking back, I still see the 'before' pictures as if they were before she had it. Dumb I know. But that is the effect that this late diagnosis left me with.The year since then has brought with it many ups and (no pun) downs. We have met some great people. We have had some good times. We have learnt some valuable lessons. And above all we have had the opportunity to get to know the most amazing baby.But there has been more than her share of sickness. More time spent in hospital than I care to remember. And many tears for the opportunities she may never have. I can't say I have a lot of love for that extra chromosome. I don't like the way it makes her so sickly. I don't like to see my baby struggle. And I don't like how every new thing she learns comes at such great effort and cost. But there is something special about that extra chromosome too. My appreciation for my children, for life, for others has grown beyond what I thought possible. And as she has grown over the last 13 months, I have seen a beautiful personality emerge. One who I would never have known, had it not been for that something extra.So it is a bittersweet memory. That day last year was the hardest of my entire life. But all is not lost. I still have my precious baby girl. Something that cannot be said for so many parents of children who are born with an extra 18 or 13. We were lucky. The 21st chromosome is the one to have if you are going to have an extra.But, I am sure I will cry. I will cry for the sickness she suffers. I will cry for the difficulties she faces. I will cry for the hurdles still to come. But then I will move on. I will remember to be thankful for one of the greatest blessings I have ever received.
This time last year, we were enjoying our tiny new addition. She was 4 weeks old, and had progressed well from the Intensive Care Nursery, to Special Care. She was now 35 weeks gestational age. All was going well with her. We were just fattening her up ready to come home.We were blissfully unaware that our lives were about to change dramatically.On October 20 2008, we were delivered the blow that is Down Syndrome. We had absolutely no inkling that it was coming. We hadn't had time to duck, or even to flinch. We were hit full-on in the face with the news that our child would never be who we thought she was. At the time, it felt like a death. I felt like they had taken our baby and replaced her with someone else. Looking back, I still see the 'before' pictures as if they were before she had it. Dumb I know. But that is the effect that this late diagnosis left me with.The year since then has brought with it many ups and (no pun) downs. We have met some great people. We have had some good times. We have learnt some valuable lessons. And above all we have had the opportunity to get to know the most amazing baby.But there has been more than her share of sickness. More time spent in hospital than I care to remember. And many tears for the opportunities she may never have. I can't say I have a lot of love for that extra chromosome. I don't like the way it makes her so sickly. I don't like to see my baby struggle. And I don't like how every new thing she learns comes at such great effort and cost. But there is something special about that extra chromosome too. My appreciation for my children, for life, for others has grown beyond what I thought possible. And as she has grown over the last 13 months, I have seen a beautiful personality emerge. One who I would never have known, had it not been for that something extra.So it is a bittersweet memory. That day last year was the hardest of my entire life. But all is not lost. I still have my precious baby girl. Something that cannot be said for so many parents of children who are born with an extra 18 or 13. We were lucky. The 21st chromosome is the one to have if you are going to have an extra.But, I am sure I will cry. I will cry for the sickness she suffers. I will cry for the difficulties she faces. I will cry for the hurdles still to come. But then I will move on. I will remember to be thankful for one of the greatest blessings I have ever received.
Wednesday, October 7, 2009
Sometimes I really hate that Samara has DS
Today, Samara starts her 4th day in the hospital. All she has is a regular cold. It's a nasty one - it has knocked the rest of us down a bit. But for Samara, a cold is not just a cold.
Initially, Michael took her to the hospital on Friday evening. When she was sleeping, her oxygen sats were dropping. Unfortunately, he made the mistake of waking her up. She could cope when she was awake, so her levels were at 96% when he got up there. So they sent her home.
Saturday evening she was getting worse. So at 2am Sunday morning, we took her back up to the hospital. Lack of sleep over the last few days has made everything blurr into one. But, they decided to admit her as her O2 levels were dropping, and they needed to suction her and give her a bit of oxygen.
Overnight Sunday night they just had her on 4 hourly obs. Which meant, once every 4 hours, they would come in, half wake her attatching the probe, and write down the highest number they got. Now, as I mentioned before, being awake or disturbed causes Samara's to take deeper breaths, and her oxygen levels rise. So really they are getting a false reading. Anyway, after her not 'needing' oxygen overnight, she was sent home Monday morning.
We left just in time to drive straight to the Royal Childrens for her opthomology appointment. The good news, is her eyes are great!
Anwyay, I digress. She got worse again Monday night, so once again, we headed off to the hospital at 2 in the morning. And once again, they put the probe on her foot, and got a reading of 97%. The triage nurse is one we have had a few times now. She is really lovely, and really listens to us. So when she went to record the 97%, I told her to just wait a minute. And sure enough, as Samara relaxed, her sats dropped to 82%!
Being the lovely lady that she is, this nurse then triaged her at a 1 (the highest priority) and took us straight through to resus. She told the dr 'this mum has 7 kids. She probably knows more about this than you do. Listen to her!' Well, that made all the difference. Samara was admitted with continuous O2 monitoring.
Since then, she has worsened. She is now on constant oxygen, as her levels were dropping even when she was awake. She is completely miserable. They are suctioning her nose before each feed, or she can't breathe enough to drink. Even then, it is a long slow process. She is starting to get dehydrated. She may go onto tube feeds today - we will have to wait and see. Her nose is bleeding due to the repeated suctioning.
Because of our family history of asthma, and because yesterday she developed quite a wheeze, she is now also on ventolin by nebuliser. Yet another contraption to hate having near her face. She fights it all the way. She also keeps pulling out the oxygen probes. And we won't even mention the difficulties when the nurses are trying to stick a suction tube up her nose!!
Michael is staying with her at the hospital. He can sleep through anything. Not me though. I tried to sleep there after she was admitted yesterday morning. But with all the alarms and things, I didn't do any more than drift off for a few minutes at a time. So last night I got my first real sleep since Friday. But my body isn't used to sleep any more. I woke up at 4.45, and here I am typing my blog when I should be catching up on some sleep.
But I can't sleep. I am worried about my little girl. What if she gets worse. Last night she was still going down hill. Is she still? Or is she about to turn the corner and get better? Does she need me there right now? Is she awake and crying for her mummy? Or is she sound asleep? Does Michael even know? Has he slept through her having a bad night? I feel guilty for needing to sleep. I feel guilty because my house looks like a cesspit. I can't believe we had it looking really good on Saturday for a rental inspection. Now, it is just filthy! The girls aren't doing their jobs. They won't even touch the dishes! I am tired. I can't cope with this. If I am up and about, then I need to be at the hospital for my baby, not trying to kick some kiddy butts into doing the basic jobs that need done. The girls are old enough to keep things running for a few days. But it's really a waste of breath trying. I think after this is over, Renata will be moving out to the bus. She just doesn't pull her weight. The others then follow her lead.
On the plus side, I have a good friend, Deb, who has taken Christiana and Mahalia for a few days. She has been onto the girls to do what they are told. And she has also been bringing food up to the hospital for Michael and I. I don't know what we would do without her. We are completely broke (as in, had to borrow all Sara's babysitting money just to buy Samara a tin of formula) this week, so we just would have starved without her help! We just had to fork out $900 for a container and then to ship it, to store our stuff in, that has been living up in Childers since we moved here. The people who's property it was on needed it moved. So really, we had no choice and had to just do it, despite it meaning we would be left with no money. But why now??!!
On Saturday, Sara, Samara and I are supposed to be going down to the Gold Coast for our DSDownunder get together. We are going for 5 nights. I really hope and pray that Samara is well by then! I am just going to cry if she isn't. On the plus side, at least we get some pay on Friday so we can afford the diesel to get there! LOL
Well, now that I have had a bit of a vent, I am really loosing it tiredness-wise. I am going to try and catch a couple more hours of sleep before I have to go back to the hospital.
Initially, Michael took her to the hospital on Friday evening. When she was sleeping, her oxygen sats were dropping. Unfortunately, he made the mistake of waking her up. She could cope when she was awake, so her levels were at 96% when he got up there. So they sent her home.
Saturday evening she was getting worse. So at 2am Sunday morning, we took her back up to the hospital. Lack of sleep over the last few days has made everything blurr into one. But, they decided to admit her as her O2 levels were dropping, and they needed to suction her and give her a bit of oxygen.
Overnight Sunday night they just had her on 4 hourly obs. Which meant, once every 4 hours, they would come in, half wake her attatching the probe, and write down the highest number they got. Now, as I mentioned before, being awake or disturbed causes Samara's to take deeper breaths, and her oxygen levels rise. So really they are getting a false reading. Anyway, after her not 'needing' oxygen overnight, she was sent home Monday morning.
We left just in time to drive straight to the Royal Childrens for her opthomology appointment. The good news, is her eyes are great!
Anwyay, I digress. She got worse again Monday night, so once again, we headed off to the hospital at 2 in the morning. And once again, they put the probe on her foot, and got a reading of 97%. The triage nurse is one we have had a few times now. She is really lovely, and really listens to us. So when she went to record the 97%, I told her to just wait a minute. And sure enough, as Samara relaxed, her sats dropped to 82%!
Being the lovely lady that she is, this nurse then triaged her at a 1 (the highest priority) and took us straight through to resus. She told the dr 'this mum has 7 kids. She probably knows more about this than you do. Listen to her!' Well, that made all the difference. Samara was admitted with continuous O2 monitoring.
Since then, she has worsened. She is now on constant oxygen, as her levels were dropping even when she was awake. She is completely miserable. They are suctioning her nose before each feed, or she can't breathe enough to drink. Even then, it is a long slow process. She is starting to get dehydrated. She may go onto tube feeds today - we will have to wait and see. Her nose is bleeding due to the repeated suctioning.
Because of our family history of asthma, and because yesterday she developed quite a wheeze, she is now also on ventolin by nebuliser. Yet another contraption to hate having near her face. She fights it all the way. She also keeps pulling out the oxygen probes. And we won't even mention the difficulties when the nurses are trying to stick a suction tube up her nose!!
Michael is staying with her at the hospital. He can sleep through anything. Not me though. I tried to sleep there after she was admitted yesterday morning. But with all the alarms and things, I didn't do any more than drift off for a few minutes at a time. So last night I got my first real sleep since Friday. But my body isn't used to sleep any more. I woke up at 4.45, and here I am typing my blog when I should be catching up on some sleep.
But I can't sleep. I am worried about my little girl. What if she gets worse. Last night she was still going down hill. Is she still? Or is she about to turn the corner and get better? Does she need me there right now? Is she awake and crying for her mummy? Or is she sound asleep? Does Michael even know? Has he slept through her having a bad night? I feel guilty for needing to sleep. I feel guilty because my house looks like a cesspit. I can't believe we had it looking really good on Saturday for a rental inspection. Now, it is just filthy! The girls aren't doing their jobs. They won't even touch the dishes! I am tired. I can't cope with this. If I am up and about, then I need to be at the hospital for my baby, not trying to kick some kiddy butts into doing the basic jobs that need done. The girls are old enough to keep things running for a few days. But it's really a waste of breath trying. I think after this is over, Renata will be moving out to the bus. She just doesn't pull her weight. The others then follow her lead.
On the plus side, I have a good friend, Deb, who has taken Christiana and Mahalia for a few days. She has been onto the girls to do what they are told. And she has also been bringing food up to the hospital for Michael and I. I don't know what we would do without her. We are completely broke (as in, had to borrow all Sara's babysitting money just to buy Samara a tin of formula) this week, so we just would have starved without her help! We just had to fork out $900 for a container and then to ship it, to store our stuff in, that has been living up in Childers since we moved here. The people who's property it was on needed it moved. So really, we had no choice and had to just do it, despite it meaning we would be left with no money. But why now??!!
On Saturday, Sara, Samara and I are supposed to be going down to the Gold Coast for our DSDownunder get together. We are going for 5 nights. I really hope and pray that Samara is well by then! I am just going to cry if she isn't. On the plus side, at least we get some pay on Friday so we can afford the diesel to get there! LOL
Well, now that I have had a bit of a vent, I am really loosing it tiredness-wise. I am going to try and catch a couple more hours of sleep before I have to go back to the hospital.
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