During our stay at the NICU we got to learn quite a few things about our son, and about ourselves. The newborn hearing test was performed there. We also found that he had difficulty feeding (that is all good now), that there are still good people in this world ready to help, that not all doctors are jerks among many other things. Here we got introduced to a wonderful program called Early Intervention.
The Early Intervention program is designed to provide children with special needs with therapy and support to help them move along and reach milestones. Right there we got assigned a coordinator and we were told of the types of therapies that would be available to him. The people that work on that program are wonderful, and we are still in touch with some of the therapists we met then. This program only runs until the child is three years old and then your support goes through your town's school district.
The time at the NICU was a difficult one. We slept in rooms that they have for parents, only left to come home and get some clothing and take a shower. The rooms there are tiny, just a twin bed and a rocking chair. Our conversation while on the car and at the house were tense as we felt the weight or the world on our shoulders. You need to talk about what is going on but you really do not want to, and you try to fake sanity as much as possible although it does not always works.
I have to make a little pause in here to showcase some of the stupid in the world that make parents in this situations go nuts. As I said before, we spent 10 days in the NICU with very limited contact with the outside world. Unbeknownst to us, someone from a government agency was calling home to make arrangements for us to have Seb's hearing tested, a test that was done at the hospital but not communicated to this person. They made calls almost everyday and left some messages on our answering machine. When we were discharged and got back home with our son we went on to check our answering machine. This person left a series of messages that culminated with on threatening us with Child Protective Service if we did not reply. My rage went from 0 to 1,000 in an instant. I called back and let him have it. I believe I gave him no time to reply or make any point before I hanged up the phone. We also contacted our new coordinator so she can get all this taken care of. People should remember that there are times when is impossible to return a call and even though we know that there are a lot of irresponsible parents out there, some are just going through hell.
Ok, back to the topic. On the last day of our stay at the NICU, the hospital sent a social worker to finish up the Early Intervention paperwork and give us more information. This was the first time I heard the phrase "Special children have special parents". I was shocked after she said that and my face showed it. She looked a little confused wondering how is it possible that such a wonder phrase would make someone so confused. After a brief pause she asked me why was I so shocked. I believe my reply surprised her. How is it that a brand new parent, with no previous experience, never held a child before, cared for one and has been surrounded by a team of professional guiding his hand be a "special parent"? She did not knew me, it was the first time we've ever talked. No one there knew who we were prior to our arrival, yet I'm special. I told her, in no specific terms, "What makes me special? I just had a child that is bound to a life of issues. Would a 'special' parent make that to a child? And the only reason I'm 'special' is because of my genetic inability to have a regular child?". Apparently no one has ever replied like that, and I do think that makes me special.
This phrase irate me, not only then but it will forever. All I want to be is a regular Joe. I'm fine being happy and minding my own business with my family. Before Sebs was born I prayed only for a healthy child. I had no delusions of grandeur or wanted an ultra handsome child, with an IQ of 150, a perfect student and athlete. All I wanted was health and no issues. I guess life has a perverted way of giving you what you want as Sebs is quite a healthy kid, he hardly ever gets sick, but that was not exactly what I wanted neither what he deserved.
A child with special needs is nothing more than a regular kid that needs extra attention and help. The parent of these children are your average parent that needs to do more to care for them. We have the same issues that every other parent has, but they are made more difficult. Our hearts are a bit broken and we are sadder, well only the ones that care do. There are plenty of them that cannot handle the situation and decide to walk away. Believe me, all think about walking away so they can never be found again. Are those that walk away "special" and caring parents as the saying suggest? I think not. If you were a jerk before, you will continue to be a jerk and possibly get worse. If you were not parent material before, you will not magically become parenting material then.
I hate the situation that I've been forced to be in. I hate that I'm powerless to correct what needs correcting and cannot snap my fingers and make it all better. I would gladly give half my being to help him. This is not what I hoped for when I decided with my wife to have a child, but this is where I am.
I am not special, I'm just a parent and as much as I hate the issues I love my role. Real parents have the balls to do what they need to do. Real parents face a situation and make the best of it. We strive to make the life of our children a happy one. I can say my boy is a happy kid. If you were going to be a crappy parent, you would be whether you had a child with special needs or not.
I can finish this post with another corny phrase to emphasize my point. Something like "When life gives you lemons, make lemonade" but I like one better that I stole from a Facebook friend. In Spanish is "Si la vida te da la espalda, agarrale el culo" that in English would be "If life turns its back on you, grab its ass", and you better believe that my hands are full.
Wednesday, July 30, 2014
Friday, July 25, 2014
Let the adventure (disaster) begin
The kid was born! The initial shock of birth has gone.
After we were done at the recovery area we were moved to one of the maternity floor rooms. I remember walking over and pushing the crib very exited. All the nurses on the floor stopped over to look at the new guest. Being true to myself, I was joking all the way over. As I've said before, he was not at all pretty. Every time a nurse would walk over to look at the crib I would say "Say hello to my beautiful ugly child". Some would laugh, others smile, and some looked at the kid really sorry for him because he has an ass of a father. My wife told me several times to stop it, but we all know I did not.
That first night was a little rough, my wife was in some pain, Sebastian was not comfortable and I was beat. The nurses would come in to help with the feeding and diapers and so on. My wife had to wake up every so often to feed him as we wanted to do breast feeding from day one. Only the OR staff and the hospital Pediatrician saw him at birth. Our chosen doctor was on vacation and the practice did not sent anyone to check on him on birth day. They told us that the next morning the doctor that was covering would do the check up during his rounds.
Morning arrived and the doctor showed up. We were asleep and were awaken by one the nurses. He stayed on the room while they brought the patient from the nursery where he spent some of the night so we could rest. I've never seen this doctor before. There were about 6 doctors on the pediatric group and we got to see our chosen one and maybe one or to others. He did the minimal of introductions and proceed to check on Sebastian once he arrived, then our world just turned to shit.
As the doctor was looking at Sebastian, he was asking some questions about the pregnancy and birth. He then proceeded to point things that were out of the ordinary. There are ways to say things, and there are ways to say things. This particular doc chose all the wrong ones. I've never met such a horrible doctor, with worst bedside manners than this one. After all of this, we found out that no one at the hospital liked him and he was like that all the time. To see the disgusted face of the staff when we mentioned his name made us feel better. While examining the child he look at me and asked, "How didn't you noticed this or that or this other thing..." as he continued to list his findings. I was dumbfounded and confused. I've never seen a newborn, never held one before my son, and really had no idea how a child looks like at birth. To me, he was just like any other premature baby. His rudeness and lack of compassion destroyed any joy we had. We look back at this events are ache as there was no real joy, but anger and frustration.
When the doctor finished with the checkup, he said that our beautiful ugly child was to be moved to the NICU. He left the room and my wife and I were left alone with our child, not knowing how mild or severe whatever he had was. We were left there wondering, with no direction, no knowledge. My wife and I are people that need information. She is a microbiologist and I'm a software developer, we live with facts and information and having none was devastating. This is where the events start to merge and I lost track of time.
Some time after the doctor had left our room a team from the NICU showed up to take the kid there. When they got to the door I started to talk to the hospitals Neo-Natal doctor. I tried to be as far from my wife as possible while I talked to him. I wish I know his name as he is one of the best doctors I've ever met. He was a complete opposite to the pediatrician and a welcome relief for us. I bombarded the guy with question and he had no answers as he had not even had time to examine Sebastian. I asked about every possible syndrome and condition I could think of, and very politely he told me to calm down and wait, he did not even knew if Sebastian had anything at all.
The NICU team left with our precious little child and my wife and I were left on the room. Then, we decided that we had to let our families and bosses know of these new developments. She called her mom and I called my mother or sister, I don't remember. After that, I called my boss Carol and I remember leaving a message that I would need time off. I was crying while leaving said message. For the next few days, there was a lot of crying happening and had nothing to do with joy. I distinctly remember taking a shower that day, it had been way more that 24 hours since the last one, oh boy did I needed one, and crying in the shower like a school girl so my wife would not see me.
The feelings that one has while going through something like that are weird and strange. Unless you go through this, you would not understand, and as I write about it you may think I'm crazy and that I'm a horrible person. Our thoughts are dark, complex, confusing and some times plain evil. Takes a lot from a person to not go mad or let these feelings drive you to do something that you will most certainly regret. I bet that if you ask any parent that has gone though this, they will tell you something very similar. We prayed for our child, the realization of our love, to pass away rather than having a life of misery and pain. This was something that we did not tell each other at that time but years later while talking about those days. How can a parent love a child so much, that would much rather see them die than suffer? Not everyone is equipped to go through this, yet there are no classes or real support groups that will help you. Unless there is someone on your family going through this, you would not know. With all do respect to social workers, psychologists, clergy and the likes, you really have no idea how to really help during that initial shock.
That day, later on the afternoon, the same pediatrician from the morning came back. I had left the hospital to get some items at home as our stay would be longer than anticipated. All in all, it lasted 11 days. Our friends, that we think of them as family, had come over and one of them drove me home while the other stayed with my wife. This was the best thing that could had ever happened and everyone is better that I was not in the room.
Back to the doctor. He arrived to the room with a book in hand and a diagnose, or what he made up his mind about. My wife, alone with our friend, talked to him. He had a page marked on that book. The title of the book was "Child malformation and abnormalities" or something like that and he made sure she knew it belong to another doctor and we must keep the book safe. He expected that back. The page marked read "Smith-Lemli-Opitz" and he said "Based on my check up, you son has this. Here is some information, read about it so you learn what it is. By the way, how Hispanics treat children with disabilities? I've heard that they just locked them up, I need you to remember this is America and we do not do that". To say that I do not like this doctor is an understatement. For the next 10 days, every staff member at the hospital apologized to us. I left specific instructions with everyone that I did not wanted that doctor to be within 100 feet of my child or my wife. You do not, under any circumstances, tell that stuff to a woman that just gave birth, to a family of any race, and to any other human being. When we made our first visit to the office after we left the hospital I talked to every nurse and doctor and told them that if that doctor touched my child there would be trouble. I much rather had the office janitor give him a checkup or a shot that this jackass.
Our friends helped us stay sane, and they do to this day. No one should go through this alone. If not for them, it would had been so much more difficult.
The next few days are a blur of information, events, paperwork that have no time association in my mind. Although it was a horrible time, we got some valuable information and services that Sebastian needed. There are several things that stuck with us. Remember that NICU Neo-Natal doctor I mentioned before? He said that our son had only 2 advocates and those were us. We did not had to agree 100% with any doctor or health professional. If we did not like it, we had to look for more, if we were not satisfied with a service we had to be vocal and change it. He told us we had the power to make things happen and we better get to work. We've taken that advice to heart.
No one will care for your child more than you do, no one knows what he needs better that you do. We are the parents, we are the caretakers, we keep him well, alive and as happy as possible. If we do not do it, no one will, and as much as we hate having to do all of that, we do it because we love him.
After we were done at the recovery area we were moved to one of the maternity floor rooms. I remember walking over and pushing the crib very exited. All the nurses on the floor stopped over to look at the new guest. Being true to myself, I was joking all the way over. As I've said before, he was not at all pretty. Every time a nurse would walk over to look at the crib I would say "Say hello to my beautiful ugly child". Some would laugh, others smile, and some looked at the kid really sorry for him because he has an ass of a father. My wife told me several times to stop it, but we all know I did not.
That first night was a little rough, my wife was in some pain, Sebastian was not comfortable and I was beat. The nurses would come in to help with the feeding and diapers and so on. My wife had to wake up every so often to feed him as we wanted to do breast feeding from day one. Only the OR staff and the hospital Pediatrician saw him at birth. Our chosen doctor was on vacation and the practice did not sent anyone to check on him on birth day. They told us that the next morning the doctor that was covering would do the check up during his rounds.
Morning arrived and the doctor showed up. We were asleep and were awaken by one the nurses. He stayed on the room while they brought the patient from the nursery where he spent some of the night so we could rest. I've never seen this doctor before. There were about 6 doctors on the pediatric group and we got to see our chosen one and maybe one or to others. He did the minimal of introductions and proceed to check on Sebastian once he arrived, then our world just turned to shit.
As the doctor was looking at Sebastian, he was asking some questions about the pregnancy and birth. He then proceeded to point things that were out of the ordinary. There are ways to say things, and there are ways to say things. This particular doc chose all the wrong ones. I've never met such a horrible doctor, with worst bedside manners than this one. After all of this, we found out that no one at the hospital liked him and he was like that all the time. To see the disgusted face of the staff when we mentioned his name made us feel better. While examining the child he look at me and asked, "How didn't you noticed this or that or this other thing..." as he continued to list his findings. I was dumbfounded and confused. I've never seen a newborn, never held one before my son, and really had no idea how a child looks like at birth. To me, he was just like any other premature baby. His rudeness and lack of compassion destroyed any joy we had. We look back at this events are ache as there was no real joy, but anger and frustration.
When the doctor finished with the checkup, he said that our beautiful ugly child was to be moved to the NICU. He left the room and my wife and I were left alone with our child, not knowing how mild or severe whatever he had was. We were left there wondering, with no direction, no knowledge. My wife and I are people that need information. She is a microbiologist and I'm a software developer, we live with facts and information and having none was devastating. This is where the events start to merge and I lost track of time.
Some time after the doctor had left our room a team from the NICU showed up to take the kid there. When they got to the door I started to talk to the hospitals Neo-Natal doctor. I tried to be as far from my wife as possible while I talked to him. I wish I know his name as he is one of the best doctors I've ever met. He was a complete opposite to the pediatrician and a welcome relief for us. I bombarded the guy with question and he had no answers as he had not even had time to examine Sebastian. I asked about every possible syndrome and condition I could think of, and very politely he told me to calm down and wait, he did not even knew if Sebastian had anything at all.
The NICU team left with our precious little child and my wife and I were left on the room. Then, we decided that we had to let our families and bosses know of these new developments. She called her mom and I called my mother or sister, I don't remember. After that, I called my boss Carol and I remember leaving a message that I would need time off. I was crying while leaving said message. For the next few days, there was a lot of crying happening and had nothing to do with joy. I distinctly remember taking a shower that day, it had been way more that 24 hours since the last one, oh boy did I needed one, and crying in the shower like a school girl so my wife would not see me.
The feelings that one has while going through something like that are weird and strange. Unless you go through this, you would not understand, and as I write about it you may think I'm crazy and that I'm a horrible person. Our thoughts are dark, complex, confusing and some times plain evil. Takes a lot from a person to not go mad or let these feelings drive you to do something that you will most certainly regret. I bet that if you ask any parent that has gone though this, they will tell you something very similar. We prayed for our child, the realization of our love, to pass away rather than having a life of misery and pain. This was something that we did not tell each other at that time but years later while talking about those days. How can a parent love a child so much, that would much rather see them die than suffer? Not everyone is equipped to go through this, yet there are no classes or real support groups that will help you. Unless there is someone on your family going through this, you would not know. With all do respect to social workers, psychologists, clergy and the likes, you really have no idea how to really help during that initial shock.
That day, later on the afternoon, the same pediatrician from the morning came back. I had left the hospital to get some items at home as our stay would be longer than anticipated. All in all, it lasted 11 days. Our friends, that we think of them as family, had come over and one of them drove me home while the other stayed with my wife. This was the best thing that could had ever happened and everyone is better that I was not in the room.
Back to the doctor. He arrived to the room with a book in hand and a diagnose, or what he made up his mind about. My wife, alone with our friend, talked to him. He had a page marked on that book. The title of the book was "Child malformation and abnormalities" or something like that and he made sure she knew it belong to another doctor and we must keep the book safe. He expected that back. The page marked read "Smith-Lemli-Opitz" and he said "Based on my check up, you son has this. Here is some information, read about it so you learn what it is. By the way, how Hispanics treat children with disabilities? I've heard that they just locked them up, I need you to remember this is America and we do not do that". To say that I do not like this doctor is an understatement. For the next 10 days, every staff member at the hospital apologized to us. I left specific instructions with everyone that I did not wanted that doctor to be within 100 feet of my child or my wife. You do not, under any circumstances, tell that stuff to a woman that just gave birth, to a family of any race, and to any other human being. When we made our first visit to the office after we left the hospital I talked to every nurse and doctor and told them that if that doctor touched my child there would be trouble. I much rather had the office janitor give him a checkup or a shot that this jackass.
Our friends helped us stay sane, and they do to this day. No one should go through this alone. If not for them, it would had been so much more difficult.
The next few days are a blur of information, events, paperwork that have no time association in my mind. Although it was a horrible time, we got some valuable information and services that Sebastian needed. There are several things that stuck with us. Remember that NICU Neo-Natal doctor I mentioned before? He said that our son had only 2 advocates and those were us. We did not had to agree 100% with any doctor or health professional. If we did not like it, we had to look for more, if we were not satisfied with a service we had to be vocal and change it. He told us we had the power to make things happen and we better get to work. We've taken that advice to heart.
No one will care for your child more than you do, no one knows what he needs better that you do. We are the parents, we are the caretakers, we keep him well, alive and as happy as possible. If we do not do it, no one will, and as much as we hate having to do all of that, we do it because we love him.
Wednesday, July 16, 2014
I love beign a dad; I hate beign a dad
Fatherhood, what some people think is one of the greatest accomplishments a man can do. Knowing your stuff works, making life. You are responsible for a new life. As my father before me, and his father before him I wanted to do things right from the beginning.
This is a great responsibility, well, only if you care for your children and we know there are many that do not. Me, I take this role very seriously, that is why I love it and I hate it.
After looking for that great person to marry, getting a steady job and enjoying my marriage for a few years we decided to have a child.
It was accelerating to get everything ready and prepare for the arrival. We told our families and friends, picked names, got the room ready, register at the store, got a baby shower, snap some pregnancy photos, looked for day care and so on.
Like lost of people we had a miscarriage before we had our son. That was a difficult thing to go through but nothing like what awaited for us once he was here. The funny thing about miscarriage is that happens to lots of people but no one talks about it, like is a big shameful secret or something. Parents should tell their kids about it and explain that is not the end of the world. Almost every parent I know has gone through one or more.
My son was born prematurely. He was born at 8 months. That day stated like a regular day, we both got ready for work and had made arrangement to go to a follow up appointment at the OBGYN. Starting at seven months we've been going every week to the office as the amniotic fluid was low and he was frank breech. Great thinking by the doctor here to keep a very close eye on things. At the office we got an ultrasound and that was the beginning of the hardest journey that we as people had ever been on. It is funny how, before they are born, you already love them and really care for them. You've never seen their face, held them, wipe their butt, but love them more than you love yourself. Right after the ultrasound the doctor sent us to the hospital for an emergency C-Section. We had no arrangements for a delivery that day, that was not the "schedule" arrival date. Now I know that kids tend to set schedules for you, and he started with a bang.
We are Hispanics, Puerto Ricans to be precise. If you are not familiar with the culture after marriage the woman does not take the husbands last name, and that is how we've done it. As we were getting everything ready at the hospital, one of the nurses was filling up the paperwork that went on the crib and the file. She asked for the kid's last name. Me, as a proud new father, said "HERNANDEZ", unloading years of heritage and Hispanic pride. The nurse looked at me partially crossed eyed and told me that since my wife and I had different last name the mother's last name was to be on the crib. Not a bad thing, but proud Papa's last name must be there. This lovely nurse said something to me that has, from that point forward, eliminated my need to hold back when talking to medical professionals. I say what I think regardless of the title. She said "Well sir, the only thing we know here is that it is her baby". Oh Ms. Nurse, thank you for calling my wife, the mother of my child, a slot. In my humble opinion that is not a nice thing to say.
My little Sebastian was born on a Thursday, July 20th at 6:15 P.M weighting only 4lb 9 Oz.. I was in the delivery room, excited and tired after a long and difficult day. My poor wife was scared off her mind. When he was born, the delivery room team went to work immediately on him as the doctor was fixing up my wife.
My Son is now here, the miracle of life, the fulfillment of the cycle of life, our God given mandate. The little man was not crying and the teams was trying to make him cry. Oxygen levels were fine but no cry. I should have enjoyed that little no cry time, after that it was a constant for 3 months!
Mom and son were moved to the recovery area, daddy soon followed. As I walked in, he was wide awake looking around the room, quitely breathing on his own all bundle up. He looked really cute although I must say that he was quite ugly. There are no pretty newborns, they are cute but certainly not pretty. I called my folks and my mother in law right from that room all exited and crying. Men should not cry in public, just saying.
The birth of my kid, a crazy experience, a life changing event that was not planned to be as massive as it has been. The days that followed were very hard and are a blur of event on our minds. That, is another entry.
This is a great responsibility, well, only if you care for your children and we know there are many that do not. Me, I take this role very seriously, that is why I love it and I hate it.
After looking for that great person to marry, getting a steady job and enjoying my marriage for a few years we decided to have a child.
It was accelerating to get everything ready and prepare for the arrival. We told our families and friends, picked names, got the room ready, register at the store, got a baby shower, snap some pregnancy photos, looked for day care and so on.
Like lost of people we had a miscarriage before we had our son. That was a difficult thing to go through but nothing like what awaited for us once he was here. The funny thing about miscarriage is that happens to lots of people but no one talks about it, like is a big shameful secret or something. Parents should tell their kids about it and explain that is not the end of the world. Almost every parent I know has gone through one or more.
My son was born prematurely. He was born at 8 months. That day stated like a regular day, we both got ready for work and had made arrangement to go to a follow up appointment at the OBGYN. Starting at seven months we've been going every week to the office as the amniotic fluid was low and he was frank breech. Great thinking by the doctor here to keep a very close eye on things. At the office we got an ultrasound and that was the beginning of the hardest journey that we as people had ever been on. It is funny how, before they are born, you already love them and really care for them. You've never seen their face, held them, wipe their butt, but love them more than you love yourself. Right after the ultrasound the doctor sent us to the hospital for an emergency C-Section. We had no arrangements for a delivery that day, that was not the "schedule" arrival date. Now I know that kids tend to set schedules for you, and he started with a bang.
We are Hispanics, Puerto Ricans to be precise. If you are not familiar with the culture after marriage the woman does not take the husbands last name, and that is how we've done it. As we were getting everything ready at the hospital, one of the nurses was filling up the paperwork that went on the crib and the file. She asked for the kid's last name. Me, as a proud new father, said "HERNANDEZ", unloading years of heritage and Hispanic pride. The nurse looked at me partially crossed eyed and told me that since my wife and I had different last name the mother's last name was to be on the crib. Not a bad thing, but proud Papa's last name must be there. This lovely nurse said something to me that has, from that point forward, eliminated my need to hold back when talking to medical professionals. I say what I think regardless of the title. She said "Well sir, the only thing we know here is that it is her baby". Oh Ms. Nurse, thank you for calling my wife, the mother of my child, a slot. In my humble opinion that is not a nice thing to say.
My little Sebastian was born on a Thursday, July 20th at 6:15 P.M weighting only 4lb 9 Oz.. I was in the delivery room, excited and tired after a long and difficult day. My poor wife was scared off her mind. When he was born, the delivery room team went to work immediately on him as the doctor was fixing up my wife.
My Son is now here, the miracle of life, the fulfillment of the cycle of life, our God given mandate. The little man was not crying and the teams was trying to make him cry. Oxygen levels were fine but no cry. I should have enjoyed that little no cry time, after that it was a constant for 3 months!
Mom and son were moved to the recovery area, daddy soon followed. As I walked in, he was wide awake looking around the room, quitely breathing on his own all bundle up. He looked really cute although I must say that he was quite ugly. There are no pretty newborns, they are cute but certainly not pretty. I called my folks and my mother in law right from that room all exited and crying. Men should not cry in public, just saying.
The birth of my kid, a crazy experience, a life changing event that was not planned to be as massive as it has been. The days that followed were very hard and are a blur of event on our minds. That, is another entry.
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