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This entry will probably one of the most personal yet confusing ones to ever write. There have been many times I've thought over and over in my head whether to write this entry now but I believe it has come to the point that I have to now. I would be continuing to act like things are okay and that I will make it through but in reality I feel like I'm lying constantly to myself.
A lot of people say they understand but honestly you don't. I don't know if I even do. I'm always the one that says I do not live in regret because I know there is nothing I could do about what has happened but I do, every day of my life. I've always wondered how my life would be if I did this or that or what it would be like if this didn't happen or if it was even worth it ever happening.
I love my son with everything inside. From the times that the thoughts of being pregnant ran through my head, even to the day I officially found out I knew my life would change forever but what I didn't count on was the realization that my worst fears to come true; the fear of a pregnancy gone wrong. To this day I've continued to think to myself what I have done wrong to have had this happen and yet continue to watch others go on with theirs. Many tell me that it's God's will that chooses Mothers to raise Special children, to have those that will need special caring. Well all in all that is a load of crap. You want to believe in a God that chooses "Special people" to go through with the endless pain, the fear and constant worry if their child would make it through their first night, that isn't a chosen of God's will; it's pathetic for anyone to think that. No one wishes this for their child at all and there is no chosen of "Special People" to endure this endless battle of a normal life for themselves and their child.
I sit and see every day of every moment of my Son's development delay more and more. And everyday more and more fear goes to mind that he will never once be normal, I will never once have a normal family. The dreams that I hoped for will never happen. Not his fault at all but in a sense is mine. I know there is nothing I can do to help him from delaying more and more and I know I play a big part in it.
You see I've always felt he could learn little by little on his own. Some he has, some that I know I need to help with. But I never erase the feelings that I feel deep down inside me, which I have for a very long time.
Let's see if I can help some people get the idea of what I really am going through. Imagine the day of your pregnancy being truly confirmed your thoughts of a run around Toddler, a mischievous 2 yr, a know-it-all 3 yr, etc being in your life, the hardships of the constant waking up in the middle of the night after a endless cry of needing a bottle feed or diaper change, but in the end, it all changes. Something happens and those once made dreams, fade there's a problem and you need the hospital. You are told that you can placenta previa and you need to remain in bed. You beg your Doctor to get up some. The days go by, you feel better by the second day but then that night, later that night, you have contractions and the next morning the bleeding returns, you are being wheeled away to an emergency C-section. Suddenly you find yourself waking from a deep anesthetic sleep, never hearing a baby cry in the room with you, waking up with a Nurse beside you telling you what happened and where your child really is. But at that point, at least you are told he is alive, and yet your body just wants to sleep. After waking up and truly finding out what has happened, you realize what has happened and thought run through your mind of how this could have been prevented. You want to see your child but you cannot, only family members can, you can only see by picture. Next thing you know someone is coming in to tell you about a place that you hoped never to venture anytime soon.
Your first night passes, all you can do is call to see how your child is doing. Now it’s time to get up and move, after all you've had surgery to remove your child, not your choice given delivery and hearing your child cry. Nerves set in, you wonder what is going on, who is with your child, is he sleeping - awake - doing anything at all? Is the Nurse handling him with care, does he hurt, will he remember everything from this day forth? Finally the next day, you can see him. You are a bit stronger and can move in a wheelchair.
You are now downstairs, a Nurse explains that hands are to be washed and gowns to be worn. You are wheeled closer and closer to your baby's little home - a plastic stimulation of a place that he could not live in - your womb. He is fragile, weak and so helpless that you continue to blame yourself for not providing that stable care he so desperately needed and yet others a providing that. There is nothing you can do but sit and look at him.
The third day comes, your emotions are building but you refuse to let them go for your own sake and the sake that you can be strong for your baby. Visitors come by, each want to see him. The day goes good, your baby is still critical but stable until one moment in time, it all changes. A Doctor comes up stairs to share some news that take you farther down, like you cannot climb up. Your baby had a seizure they tell you, not sure if he will survive. All you can do is hope and pray that he will. By this point you've released all the emotions you have held in for 3 days, afraid you cannot stop, afraid that it will be all you can do. But remember you aren't alone, family members are aside you and most of all, your baby's father, aiding comfort more than your own Mother or sister can provide at this point. Later that night, he's stable, holding on. There has been some damage of course and through the entire time you hear negativity of your child's future, no one has supported any positive thoughts at this point.
The next day, he remains stable but the result of the seizure continues to build up slowly. More visitors come by and another downfall occurs. Your baby's lungs are collapsing, he needs a medical help to keep it from getting worse. In some mix of this you kind of feel you sense his pain. Finally the day comes that you have to leave the hospital, leave your baby behind.
Throughout the next 9 months, your baby will remain in the hospitals enduring everything from countless number of surgeries, to medical opinions, meetings, 1 step forward, and 2 steps back. Your parental instincts are limited.
Finally after all that, you are finally able to bring your child home but he is still needs medical help of a Home Health Nurse, monitors, machines, and a G-tube, therapists, etc.
Slowly, you lose the monitors and the O2, he's getting better than he was at the hospital but developmentally, he is still behind. Soon more and more problems creep up. Medical bills that should have been taken care of with your medical provider, a Ped Doc that you feel is not content to caring for a former preemie, and endless Doctor trips for your child, you feel it would never end.
The year passes; your child is now 2. He survived through the Flu, Pink Eye, Diaherria, Sniffles, and Fevers. Yet with all this there have not been any major hospitalizations through it all.
Now today, you sit in a quiet room re-thinking and praying endlessly that your child will be alright. He'll start school soon, but he still is delayed. Now your friends and other family members are having babies, they are all having no problems but yet you are alone. Your friends are not around, for the past yr you are struggling with your relationship with your baby's father, you cannot work, you own nothing to your name anymore, you fear for your future. What will you do?
It is a lot but I hope it will give some people an idea of what I am going through. Although this isn't all that I am going through, there is more but I am getting tired of typing.
A lot of people say they understand but honestly you don't. I don't know if I even do. I'm always the one that says I do not live in regret because I know there is nothing I could do about what has happened but I do, every day of my life. I've always wondered how my life would be if I did this or that or what it would be like if this didn't happen or if it was even worth it ever happening.
I love my son with everything inside. From the times that the thoughts of being pregnant ran through my head, even to the day I officially found out I knew my life would change forever but what I didn't count on was the realization that my worst fears to come true; the fear of a pregnancy gone wrong. To this day I've continued to think to myself what I have done wrong to have had this happen and yet continue to watch others go on with theirs. Many tell me that it's God's will that chooses Mothers to raise Special children, to have those that will need special caring. Well all in all that is a load of crap. You want to believe in a God that chooses "Special people" to go through with the endless pain, the fear and constant worry if their child would make it through their first night, that isn't a chosen of God's will; it's pathetic for anyone to think that. No one wishes this for their child at all and there is no chosen of "Special People" to endure this endless battle of a normal life for themselves and their child.
I sit and see every day of every moment of my Son's development delay more and more. And everyday more and more fear goes to mind that he will never once be normal, I will never once have a normal family. The dreams that I hoped for will never happen. Not his fault at all but in a sense is mine. I know there is nothing I can do to help him from delaying more and more and I know I play a big part in it.
You see I've always felt he could learn little by little on his own. Some he has, some that I know I need to help with. But I never erase the feelings that I feel deep down inside me, which I have for a very long time.
Let's see if I can help some people get the idea of what I really am going through. Imagine the day of your pregnancy being truly confirmed your thoughts of a run around Toddler, a mischievous 2 yr, a know-it-all 3 yr, etc being in your life, the hardships of the constant waking up in the middle of the night after a endless cry of needing a bottle feed or diaper change, but in the end, it all changes. Something happens and those once made dreams, fade there's a problem and you need the hospital. You are told that you can placenta previa and you need to remain in bed. You beg your Doctor to get up some. The days go by, you feel better by the second day but then that night, later that night, you have contractions and the next morning the bleeding returns, you are being wheeled away to an emergency C-section. Suddenly you find yourself waking from a deep anesthetic sleep, never hearing a baby cry in the room with you, waking up with a Nurse beside you telling you what happened and where your child really is. But at that point, at least you are told he is alive, and yet your body just wants to sleep. After waking up and truly finding out what has happened, you realize what has happened and thought run through your mind of how this could have been prevented. You want to see your child but you cannot, only family members can, you can only see by picture. Next thing you know someone is coming in to tell you about a place that you hoped never to venture anytime soon.
Your first night passes, all you can do is call to see how your child is doing. Now it’s time to get up and move, after all you've had surgery to remove your child, not your choice given delivery and hearing your child cry. Nerves set in, you wonder what is going on, who is with your child, is he sleeping - awake - doing anything at all? Is the Nurse handling him with care, does he hurt, will he remember everything from this day forth? Finally the next day, you can see him. You are a bit stronger and can move in a wheelchair.
You are now downstairs, a Nurse explains that hands are to be washed and gowns to be worn. You are wheeled closer and closer to your baby's little home - a plastic stimulation of a place that he could not live in - your womb. He is fragile, weak and so helpless that you continue to blame yourself for not providing that stable care he so desperately needed and yet others a providing that. There is nothing you can do but sit and look at him.
The third day comes, your emotions are building but you refuse to let them go for your own sake and the sake that you can be strong for your baby. Visitors come by, each want to see him. The day goes good, your baby is still critical but stable until one moment in time, it all changes. A Doctor comes up stairs to share some news that take you farther down, like you cannot climb up. Your baby had a seizure they tell you, not sure if he will survive. All you can do is hope and pray that he will. By this point you've released all the emotions you have held in for 3 days, afraid you cannot stop, afraid that it will be all you can do. But remember you aren't alone, family members are aside you and most of all, your baby's father, aiding comfort more than your own Mother or sister can provide at this point. Later that night, he's stable, holding on. There has been some damage of course and through the entire time you hear negativity of your child's future, no one has supported any positive thoughts at this point.
The next day, he remains stable but the result of the seizure continues to build up slowly. More visitors come by and another downfall occurs. Your baby's lungs are collapsing, he needs a medical help to keep it from getting worse. In some mix of this you kind of feel you sense his pain. Finally the day comes that you have to leave the hospital, leave your baby behind.
Throughout the next 9 months, your baby will remain in the hospitals enduring everything from countless number of surgeries, to medical opinions, meetings, 1 step forward, and 2 steps back. Your parental instincts are limited.
Finally after all that, you are finally able to bring your child home but he is still needs medical help of a Home Health Nurse, monitors, machines, and a G-tube, therapists, etc.
Slowly, you lose the monitors and the O2, he's getting better than he was at the hospital but developmentally, he is still behind. Soon more and more problems creep up. Medical bills that should have been taken care of with your medical provider, a Ped Doc that you feel is not content to caring for a former preemie, and endless Doctor trips for your child, you feel it would never end.
The year passes; your child is now 2. He survived through the Flu, Pink Eye, Diaherria, Sniffles, and Fevers. Yet with all this there have not been any major hospitalizations through it all.
Now today, you sit in a quiet room re-thinking and praying endlessly that your child will be alright. He'll start school soon, but he still is delayed. Now your friends and other family members are having babies, they are all having no problems but yet you are alone. Your friends are not around, for the past yr you are struggling with your relationship with your baby's father, you cannot work, you own nothing to your name anymore, you fear for your future. What will you do?
It is a lot but I hope it will give some people an idea of what I am going through. Although this isn't all that I am going through, there is more but I am getting tired of typing.
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