Summing up all conflicting feelings for this day.
"Someday everything will all make perfect sense, so for now, laugh at the confusion, smile through the tears, and keep reminding yourself that everything happens for a reason. I am STRONG because I know weakness, I am COMPASSIONATE because I have experienced suffering, I am ALIVE because I am a fighter, I am WISE because I've been foolish, I can LAUGH because I have known sadness. I can LOVE because I've known loss."
Every day that passes by all reason is tested in different ways. Maybe someday I will write a book about it... but for now, this will have to do.
In the middle of being tired and doing it all for my dear girl, a mean comment can brew a wild storm. And so it happened that yesterday the nurse of the afternoon arrived and after seeing Dee comes out of the room and tells us: "She needs something for the mucus, she is so congested. She should have mucomyst. Ask her doctor for it". Me and my hubby exchanged looks, and I answered: "The doctor is aware of how she is, and she is taking her antibiotics and tylenol as scheduled". The blunt answer was "I would change doctor. She shouldn't be suffering as she is right now". With that, she turned and walked away. Me and my husband became stunned... because such a sentence imply so many things. Assumptions and appearances are much deceiving, and it seems that just because she saw us eating in front of the laptop she assumed we have done nothing for our girl! We became quite upset with the comment. Half an hour later she came out to apologize, and my husband accepted the apology. I was too angry to say I did.
We had to go take my best friend to the airport, so my hubby asked our day nurse to come over. She knew all that has been going on and we knew that at least she would try to do all she has done before as she has seen Dee in distress (unlike the afternoon nurse). We went, came back, and thank God nothing happened while we were out.
Later in the shift, Dee went down. The nurse called for my husband, and I went into the room. I reached for the ambu but she took it while calling my husband. She started but was having no effect as she was not ambuing correctly. I took the hard pillow to place it under Dee's neck and my husband came into the room taking the ambu from her. She offered to call 911. We said not yet, she has a plug. I grabbed the suction machine and between his ambuing and my suctioning we took out the mucus plug, stabilizing Dee after coughing her. Numbers went up, not going down. We nebulized her, and fr the rest of the night there were no issues.
This is not an uncommon sight, usually it is me and my hubby teaming up to solve the issue. And then the aftermath is a nurse who won't come back because she is afraid to loose her license... ??!!
We follow a strict code. If Dee doesn't do better after getting out a plug, numbers go down and oxigen while calling 911 is mandatory. We know the difference. Nurses assume that Dee is an easy case because most of the time she is stable. We keep her stable. We use common sense and do aggressive physical therapy in order to accomplish that. The balance of what works and what doesn't is thin, and very specific to her care. When we talk about Dee and her medical care we are not joking.
Overconfidence is quite a flaw. It prevents anyone from listening and learning. That is the main wall that we have faced with all nurses coming our way. This time it all came from someone who boasted much experience with SMA kids... not taking into account that every kid is different. A SMA type 1 can be very different from another... All have unique needs. We know Dee must be 2-3 weeks with constant aggressive care to get out of a cold. That is why we try our best to be paranoid and take many preventive measures. She has been 3 years without touching a hospital because of it. She got sick, we manage. We call the right doctors and we do what we have been taught by so many long hospital stays. We are not crazy or make decisions that will endanger Dee, quite the opposite. It is frustrating that we just keep getting the wrong kind of support (or lack of)... Tiresome, and very dissappointing.
People should learn that if everything is boring, it is actually good. Excitement can be fatal in our specific case... And for Dee's sake, us parents are the ultimate caregivers as we've been through it all and we know what must be done in all given scenarios.
Wednesday, August 31, 2011
Saturday, August 13, 2011
Bitter-sweet
It is AMAZING, we survived the run of 6 weeks filled with crazy drama, broken car, long-faced nurse, lack of nurse, technical malfunction and many other disturbances of the force. All sums up to an experience that Deedee will never forget. And we won't either...
As the camp staff and kids did a birthday celebration, I definitively felt touched... I hope we will be back next year if we are still in Newark... But most of all, I hope that Deedee is such an outlier that she will make it one more year, period. So far she's been quite a warrior and there is so much she wants to do... But the reality of it all slaps one in the face while all one can do is swallow hard, hold back the tears and enjoy the precious moments. And precious, oh yes, they are very precious!
I feel so sad that the camp teacher actually heard everything that our day nurse have been saying about her... All in all, she did her job and she is sweet. She was creative and pulled through at the end of the week... plus no one knows what was going on in her personal life. It really saddens me and pisses me off that our nurse simply is a loud mouth and doesn't behave as she should in such a place... I am a strong believer that you can say anything, but it is HOW you say it that makes it an effective comment. Instead of being assertive and happy, our day nurse prefers being aggressive and angry... which doesn't help her case.
All in all, things ran smooth. The only bad thing that happened just once was actually something that could be prevented (you think something is broke, look for the spare part and then inspect... do not pull before having that part... common sense...). The more you put together the small mistakes and the tolerance we have about them, the more it is certain that we need to get new help. I am sorry, but Mondays is an "always late" day... Lately it is almost everyday, as a matter of fact. And the absenses without calling us and the company... Ugh! And then answering phone calls that she shouldn't... And hurrying up when she should take her time. Spills happen because of that, emergencies as well. Not a happy disposition anymore, not a happy face... Then comes the responsibility factor, and the insubordination attitude towards any of her bosses: company and us. It is what it is. We have made the mistake of trying to help someone un-helpable... again.
Anyway... the nurse issues are all ridiculous, and soon will be taken care of. What is important is Deedee went out, met other kids, got to know what other kids do, did what others kid do, and felt the love in the way. She also could see how they were always asking about her, about why she was in a wheelchair, about how they could help her. It is bitter-sweet, but very meaningful.
We hope that one year becomes a reality, that she keeps on being away from the hospital, and that things run smoother s we can actually focus more on her rehab issues and on expanding her cognitive gain. I pray for enlightment, courage and health to do all of the above.
As the camp staff and kids did a birthday celebration, I definitively felt touched... I hope we will be back next year if we are still in Newark... But most of all, I hope that Deedee is such an outlier that she will make it one more year, period. So far she's been quite a warrior and there is so much she wants to do... But the reality of it all slaps one in the face while all one can do is swallow hard, hold back the tears and enjoy the precious moments. And precious, oh yes, they are very precious!
I feel so sad that the camp teacher actually heard everything that our day nurse have been saying about her... All in all, she did her job and she is sweet. She was creative and pulled through at the end of the week... plus no one knows what was going on in her personal life. It really saddens me and pisses me off that our nurse simply is a loud mouth and doesn't behave as she should in such a place... I am a strong believer that you can say anything, but it is HOW you say it that makes it an effective comment. Instead of being assertive and happy, our day nurse prefers being aggressive and angry... which doesn't help her case.
All in all, things ran smooth. The only bad thing that happened just once was actually something that could be prevented (you think something is broke, look for the spare part and then inspect... do not pull before having that part... common sense...). The more you put together the small mistakes and the tolerance we have about them, the more it is certain that we need to get new help. I am sorry, but Mondays is an "always late" day... Lately it is almost everyday, as a matter of fact. And the absenses without calling us and the company... Ugh! And then answering phone calls that she shouldn't... And hurrying up when she should take her time. Spills happen because of that, emergencies as well. Not a happy disposition anymore, not a happy face... Then comes the responsibility factor, and the insubordination attitude towards any of her bosses: company and us. It is what it is. We have made the mistake of trying to help someone un-helpable... again.
Anyway... the nurse issues are all ridiculous, and soon will be taken care of. What is important is Deedee went out, met other kids, got to know what other kids do, did what others kid do, and felt the love in the way. She also could see how they were always asking about her, about why she was in a wheelchair, about how they could help her. It is bitter-sweet, but very meaningful.
We hope that one year becomes a reality, that she keeps on being away from the hospital, and that things run smoother s we can actually focus more on her rehab issues and on expanding her cognitive gain. I pray for enlightment, courage and health to do all of the above.
Tuesday, August 09, 2011
On the 360 mirror
I don't understand some people. I keep saying I won't even try going there, but honestly I really REALLY don't understand some people. In a world where truth is hard to find, you give truth and then get bashed for it. One thing that got me thinking is that a friend said I have changed since Deedee... that nothing is so important since her having SMA, and how thick is my skin thanks to that. What?! That blew my mind. The only thing that has changed since Deedee's diagnosis is that I thought there was no good left in the world, and I was proven wrong. Me, being myself... that is old news.
Inflexible, lawful good, the paladin, the warrioress, the wise lady, the counselor, the healer, the dreamer... the taker of lost causes, the believer in endless hope, the forever friend, the stone upon which you can build... wrath and compassion, justice and punishment, kindness and bluntness... A portrait of me.
People have always looked upon me as the outcast, the misfit, the crazy one, the artist, the weirdo. And I don't really care about the branding because I like who I am. I have always been the dark presence that invites trust and irradiates wisdom. As a child I had too many friends... imaginary friends... At school I was the one who was writing and drawing in the corner at all times, the one to call if you needed to decorate a play or an activity. At college I was the artsy one in a business world, and managed to be part of the sci-fi and the english clubs. At work, besides my duties I was the one to volunteer for uplifting employees... peer-training, tolerance, amity in the office. People came to me for advise... for solving issues. I always gave out an aura of trust, comfort, truth... And I honestly tried to comply all of those.
Right now, 2011, I am so sad that anyone would say I am this way because of Dee. I was this way before, I will always be. I am true to myself, and true to those who know me. I am beyond drama, as life has taught me that gossip is worthless, and that the people who don't stick with you were never your true friends. I have one face, one mind, one heart. I do not lie, and I would not hurt anyone on purpose. I believe in divine justice, and in following the simple commands that God made so humans would start being civil... and I strongly believe in the Golden Rule, and above all love. Looking back to my roots, to my growing up and growing old, I see I have been faithful to all the above. I use to be more vindictive, yes... but do not think I am any less vindictive just because I try to see all sides before jumping into action right now... Wisdom comes with age. I guess all that has changed is that now I pause and look with my soul... and then act. I still get enraged real fast, I still feel as passionate as I was before. I still think highly of myself... and expect high things of myself and of those around me. And I am constantly let down by the people I love and trust most...
My heart is always aching. There is never a halt on the flow of the bleeding, as there is always a reason for the constant flow. The biggest hurt is absence, and then those who claim to be so close and are really so far. Only two constant wheels keeps life turning and understands that my life cannot manage common drama anymore because it is a simple waste. I put my faith in my friends, and although that is a strength it is also a constant disappointment that when accrued can be a killer. Granted, for anyone else it is very difficult to understand what I go through on a daily basis...
I face death, live with it, play with it, laugh at it. It is all a heartbreaking business. If I were a normal girl perhaps I could not manage anything... I feel the tearing. I feel the strong desire to cry endless tears, to scream on top of my lungs... Each time I get assaulted with questions about Dee, simple questions that kids do... My heart gets shattered. Searching for a simple answer becomes a daunting task. Explaining it all and watching their reactions would move anyone to tears... of hope, of compassion, of awe, of sadness, of happiness... It is always so many mixed emotions... Yet I smile through it all, and just swallow hard and go on explaining with a voice that shows no one how devastated I really feel. And this changed me? No. I did the same at a different level before... I have always kept to myself my feelings, and I have always tried my best to show neutrality when it comes to issues. I put myself in others shoes and try my best to understand even when stupidity is the main culprit of actions... The difference right now is that what was only a measure to be fair now is a measure that digs deep thorns in my soul. Different outcomes, but same appearance...
My friends are just ghosts that come in and out and keep going with their lives. They don't really grasp anything. Their dawn to dusk run is simple, oh so simple! And going out of their own ways to cross my path is actually... unreasonable. They live elsewhere, where things get easily fixed by money or connections. The worst they have to face... fear of loosing a job, not getting a raise, or mistrust or cheating on their significant other or dealing with the kids or the pets... It all seems to be good drama for soap operas... That's how most people live. I live fearing being on the streets simply because I could handle it but my girl could not survive. I live fearing there will be medical bills that we will not be able to pay, that in case of emergency we have no money, no job comes and we depend on a system that is broken, we live in a place were you know no one and where no one wants to help you... We live in the ghetto, where killing is like eating peanuts and being latina in a 98% black area can be quite an intimidating ordeal. I fear anything can come against us anytime and no one else would stand for us. Then to this add the stress of what goes on with your terminal kid... How can you improve palliative care with no help? How can you help her grow and be safe? And then come the stress of the little one who is not fragile: How can she grow in this hard/aggressive/racist environment? How can she learn values when all around reinforce the opposite of what we teach? How can we trust she will be safe if she gets to go to school in this same place? No, the things I deal with here far away from the little island are much more serious and life-threatening for all of us... But that is not the reality back home... And people don't get that their little dramas are nothing, that they actually live in paradise.
I get so upset with the statement of me using Deirdre to thicken my skin about people... No. There are simply more important things to mind in life. If I were to try pleasing everybody I would not have made it as far as I have. I made myself. I am a hard worker. I studied, never cheated in my tests. I have helped others, going up and above for them simply because that is what I thought anyone would do... I may be naive for some things, but my naivete is not because of lack of information but because of my greatest flaw of giving chances and trusting that people act as consequence of good reasons... which can obviously be not true. Some argue that I put myself in position to be hurt... I just say that is what makes life worth living.
All my life I've been alone fighting for myself and for those I love. I don't see anything so different right now. There is still so much I want to do... peanuts compared to the amazing things other people that I have met have done. Time is going so fast and slipping through my fingers... I just hope I have enough strength to carry on, to keep fighting for what's right, to stand in the end and scream:"Victory"!
Inflexible, lawful good, the paladin, the warrioress, the wise lady, the counselor, the healer, the dreamer... the taker of lost causes, the believer in endless hope, the forever friend, the stone upon which you can build... wrath and compassion, justice and punishment, kindness and bluntness... A portrait of me.
People have always looked upon me as the outcast, the misfit, the crazy one, the artist, the weirdo. And I don't really care about the branding because I like who I am. I have always been the dark presence that invites trust and irradiates wisdom. As a child I had too many friends... imaginary friends... At school I was the one who was writing and drawing in the corner at all times, the one to call if you needed to decorate a play or an activity. At college I was the artsy one in a business world, and managed to be part of the sci-fi and the english clubs. At work, besides my duties I was the one to volunteer for uplifting employees... peer-training, tolerance, amity in the office. People came to me for advise... for solving issues. I always gave out an aura of trust, comfort, truth... And I honestly tried to comply all of those.
Right now, 2011, I am so sad that anyone would say I am this way because of Dee. I was this way before, I will always be. I am true to myself, and true to those who know me. I am beyond drama, as life has taught me that gossip is worthless, and that the people who don't stick with you were never your true friends. I have one face, one mind, one heart. I do not lie, and I would not hurt anyone on purpose. I believe in divine justice, and in following the simple commands that God made so humans would start being civil... and I strongly believe in the Golden Rule, and above all love. Looking back to my roots, to my growing up and growing old, I see I have been faithful to all the above. I use to be more vindictive, yes... but do not think I am any less vindictive just because I try to see all sides before jumping into action right now... Wisdom comes with age. I guess all that has changed is that now I pause and look with my soul... and then act. I still get enraged real fast, I still feel as passionate as I was before. I still think highly of myself... and expect high things of myself and of those around me. And I am constantly let down by the people I love and trust most...
My heart is always aching. There is never a halt on the flow of the bleeding, as there is always a reason for the constant flow. The biggest hurt is absence, and then those who claim to be so close and are really so far. Only two constant wheels keeps life turning and understands that my life cannot manage common drama anymore because it is a simple waste. I put my faith in my friends, and although that is a strength it is also a constant disappointment that when accrued can be a killer. Granted, for anyone else it is very difficult to understand what I go through on a daily basis...
I face death, live with it, play with it, laugh at it. It is all a heartbreaking business. If I were a normal girl perhaps I could not manage anything... I feel the tearing. I feel the strong desire to cry endless tears, to scream on top of my lungs... Each time I get assaulted with questions about Dee, simple questions that kids do... My heart gets shattered. Searching for a simple answer becomes a daunting task. Explaining it all and watching their reactions would move anyone to tears... of hope, of compassion, of awe, of sadness, of happiness... It is always so many mixed emotions... Yet I smile through it all, and just swallow hard and go on explaining with a voice that shows no one how devastated I really feel. And this changed me? No. I did the same at a different level before... I have always kept to myself my feelings, and I have always tried my best to show neutrality when it comes to issues. I put myself in others shoes and try my best to understand even when stupidity is the main culprit of actions... The difference right now is that what was only a measure to be fair now is a measure that digs deep thorns in my soul. Different outcomes, but same appearance...
My friends are just ghosts that come in and out and keep going with their lives. They don't really grasp anything. Their dawn to dusk run is simple, oh so simple! And going out of their own ways to cross my path is actually... unreasonable. They live elsewhere, where things get easily fixed by money or connections. The worst they have to face... fear of loosing a job, not getting a raise, or mistrust or cheating on their significant other or dealing with the kids or the pets... It all seems to be good drama for soap operas... That's how most people live. I live fearing being on the streets simply because I could handle it but my girl could not survive. I live fearing there will be medical bills that we will not be able to pay, that in case of emergency we have no money, no job comes and we depend on a system that is broken, we live in a place were you know no one and where no one wants to help you... We live in the ghetto, where killing is like eating peanuts and being latina in a 98% black area can be quite an intimidating ordeal. I fear anything can come against us anytime and no one else would stand for us. Then to this add the stress of what goes on with your terminal kid... How can you improve palliative care with no help? How can you help her grow and be safe? And then come the stress of the little one who is not fragile: How can she grow in this hard/aggressive/racist environment? How can she learn values when all around reinforce the opposite of what we teach? How can we trust she will be safe if she gets to go to school in this same place? No, the things I deal with here far away from the little island are much more serious and life-threatening for all of us... But that is not the reality back home... And people don't get that their little dramas are nothing, that they actually live in paradise.
I get so upset with the statement of me using Deirdre to thicken my skin about people... No. There are simply more important things to mind in life. If I were to try pleasing everybody I would not have made it as far as I have. I made myself. I am a hard worker. I studied, never cheated in my tests. I have helped others, going up and above for them simply because that is what I thought anyone would do... I may be naive for some things, but my naivete is not because of lack of information but because of my greatest flaw of giving chances and trusting that people act as consequence of good reasons... which can obviously be not true. Some argue that I put myself in position to be hurt... I just say that is what makes life worth living.
All my life I've been alone fighting for myself and for those I love. I don't see anything so different right now. There is still so much I want to do... peanuts compared to the amazing things other people that I have met have done. Time is going so fast and slipping through my fingers... I just hope I have enough strength to carry on, to keep fighting for what's right, to stand in the end and scream:"Victory"!
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