As parents our lives do not belong to just us. You now have to factor in your child. I see a lot of blogs and articles that usually say one of two things. 1) You should not let a child change your life because you have a child. 2) Your life is about your child.
To me it should be a balance. Honestly when your child an infant I feel your life should revolve around it. Your baby is dependent on you for its very survival. They need you to feed them, be it breast or bottle. They need you to keep them warm. To change their diapers. To just hold them because their world has been turned upside down, they are now in ours. I love the fourth trimester as its called because it's so true a baby is slowly gaining it footing in our world.
In an ideal world as your child grows and develops you can let go a little. You can relax and find fun things to do with them. You can drop them off to play with friends and family. They will go to school and come home with stories about thier day. You can go out with piece of mind that everything will be okay.
When you have a special needs child it's not so simple. Each special needs child is so different, so unique that no families journey is the same. Once in awhile the path may be the same or close but the whole of it is different. Your life revolves around doctors appointments, specialists appointments, never ending therapy appointments and the dreaded blood work. Our journey is still fairly new so I'm sure a better balance will be found.
Till than my life revolves around my kids and it may be slightly hectic definitely tiring. In the end I have them so it is so worth it.
Saturday, December 6, 2014
Thursday, July 3, 2014
Living For The Moment
Living for the moment is something we should all do. Moments make up who we are. They are our memories, our experiences, our highs and lows. Living for the moment doesn't have to be the huge ones. It can be the small ones. A hug from a loved one, your childs laugh, their smile anything that shows they are alive.
I'm not trying to sound depressed far from it. I can't deny I have a sadness in me that will be with me that doesn't have to do with Natalia. It's for Aaliyah, not what she might not do but for the time she might not have. Please, please don't tell me to think positive because I do. I'm hoping she is one of the lucky ones. One of those who makes it to her mid thirties. Yes mid thirties those are the "lucky" ones. I'm hoping for at least that so she can experience as much as possible. I don't expect miracles. As I've said to my friends God isn't here to make my life perfect but to help me get through those hard times.
It's why we won't wait to do things. Why will try to let her experience as much as possible. Why we won't till she understands. Why even if she cries and makes a scene we may try to ride it out so we can stay. Don't hold us to the standards of a typical family because we never will be.
You often hear a parent shouldn't outlive their child. We have outlived one and stand a good chance of outliving another. We try to put it out of our heads but truth is it's always in the corner of our minds. We will more than likely face the same grief again. Till than we shall love our daughters and live for the moment.
I'm not trying to sound depressed far from it. I can't deny I have a sadness in me that will be with me that doesn't have to do with Natalia. It's for Aaliyah, not what she might not do but for the time she might not have. Please, please don't tell me to think positive because I do. I'm hoping she is one of the lucky ones. One of those who makes it to her mid thirties. Yes mid thirties those are the "lucky" ones. I'm hoping for at least that so she can experience as much as possible. I don't expect miracles. As I've said to my friends God isn't here to make my life perfect but to help me get through those hard times.
It's why we won't wait to do things. Why will try to let her experience as much as possible. Why we won't till she understands. Why even if she cries and makes a scene we may try to ride it out so we can stay. Don't hold us to the standards of a typical family because we never will be.
You often hear a parent shouldn't outlive their child. We have outlived one and stand a good chance of outliving another. We try to put it out of our heads but truth is it's always in the corner of our minds. We will more than likely face the same grief again. Till than we shall love our daughters and live for the moment.
Saturday, June 21, 2014
Where do I begin?
I am sitting here trying to figure out where to start this blog post today. It's crazy how much can happen in such a short time.
It's now June 20th, on June 4th it was two years to the day that we found out we lost Natalia. It was a bittersweet day, because it also happened to be the day Melody turned two months old. Two years since I lost Natalia and two months since I delivered Melody. A whirlwind of emotions. This year to celebrate we had people write, draw, etc Natalia's name. Some very creative pictures made it to us. I will share those at some point in the near future.
I can't explain what it feels like to lose your daughter. It's something that changes you deep inside. You lose a part of your soul, your heart, pretty much everything that makes you who you are. You are forever changed. Natalia is a very important part of who I am. She is forever my baby. Not a day goes by that I don't think about her. That I don't wonder what she would be like. What she would like to play. While some wonder what their child would look like. I know she'd have big brown eyes with beautiful eye lashes. Light brown hair with streaks of blond just starting to curl. She'd have long legs and lanky arms. Just like her identical twin, her other half my big baby girl Aaliyah.
On to my sweet little Melody. What can I say shes my mellow Melody. Such a calm easy going little girl. Breast feeding to me is new. With Aaliyah I pumped, while I knew it was best for her there wasn't that awe that others speak of. I'd defend anyone's right to feed in public however they wanted but didn't think I'd do it. Now look at me! I've breast fed in our car, in breast feeding lounges, fitting rooms, the drive-in, the aquarium, and the zoo. I understand that feeling of my baby is hungry and I don't care if it makes someone uncomfortable. My baby is healthy and growing beautifully. She's smiling, and grabbing things. She's chattering away. Holding up her head, she's laughing and wrapping us around her finger.
Now Aaliyah has a whole lot going on let's start with her teeth. Being a late teether she's having a very hard time with them coming all at once. We have to get her into the dentist. She has an eye exam in July. Neuro in July. GI in August.
Now on the sucky side of things. Aaliyah was really not herself on Monday night, when it continued into Tuesday we took her into the pediatrician. They weighed her and that alone bothered me. She had lost two ounces in thirteen days which with teething and a slight upper respitory cold is considered normal. For Aaliyah that is not a good thing, she does not have weight to lose. So we started discussing her tube placement, switching to a different type of tube, and if her stomach was growing. I mentioned how we were trying to increase the feeds but every time we do she throws up, so the doctor said we may have to consider a hospital stay. I thought it would be worth going ahead and doing it. I'm struggling trying to increase her feeds and than feeling guilty because she throws up. I brought up if we could try and get some test she needs out of the way and she said that we should be able to. So now I will call Monday and see if we have an update. So even though we have plans for this summer we may have to change things but for her we will do whatever we have to do.
That's it for now. I have so much more to say but I think this is a good stopping point.
Edit to Add: her stroller was denied so fighting that. :/
It's now June 20th, on June 4th it was two years to the day that we found out we lost Natalia. It was a bittersweet day, because it also happened to be the day Melody turned two months old. Two years since I lost Natalia and two months since I delivered Melody. A whirlwind of emotions. This year to celebrate we had people write, draw, etc Natalia's name. Some very creative pictures made it to us. I will share those at some point in the near future.
I can't explain what it feels like to lose your daughter. It's something that changes you deep inside. You lose a part of your soul, your heart, pretty much everything that makes you who you are. You are forever changed. Natalia is a very important part of who I am. She is forever my baby. Not a day goes by that I don't think about her. That I don't wonder what she would be like. What she would like to play. While some wonder what their child would look like. I know she'd have big brown eyes with beautiful eye lashes. Light brown hair with streaks of blond just starting to curl. She'd have long legs and lanky arms. Just like her identical twin, her other half my big baby girl Aaliyah.
On to my sweet little Melody. What can I say shes my mellow Melody. Such a calm easy going little girl. Breast feeding to me is new. With Aaliyah I pumped, while I knew it was best for her there wasn't that awe that others speak of. I'd defend anyone's right to feed in public however they wanted but didn't think I'd do it. Now look at me! I've breast fed in our car, in breast feeding lounges, fitting rooms, the drive-in, the aquarium, and the zoo. I understand that feeling of my baby is hungry and I don't care if it makes someone uncomfortable. My baby is healthy and growing beautifully. She's smiling, and grabbing things. She's chattering away. Holding up her head, she's laughing and wrapping us around her finger.
Now Aaliyah has a whole lot going on let's start with her teeth. Being a late teether she's having a very hard time with them coming all at once. We have to get her into the dentist. She has an eye exam in July. Neuro in July. GI in August.
Now on the sucky side of things. Aaliyah was really not herself on Monday night, when it continued into Tuesday we took her into the pediatrician. They weighed her and that alone bothered me. She had lost two ounces in thirteen days which with teething and a slight upper respitory cold is considered normal. For Aaliyah that is not a good thing, she does not have weight to lose. So we started discussing her tube placement, switching to a different type of tube, and if her stomach was growing. I mentioned how we were trying to increase the feeds but every time we do she throws up, so the doctor said we may have to consider a hospital stay. I thought it would be worth going ahead and doing it. I'm struggling trying to increase her feeds and than feeling guilty because she throws up. I brought up if we could try and get some test she needs out of the way and she said that we should be able to. So now I will call Monday and see if we have an update. So even though we have plans for this summer we may have to change things but for her we will do whatever we have to do.
That's it for now. I have so much more to say but I think this is a good stopping point.
Edit to Add: her stroller was denied so fighting that. :/
Tuesday, May 27, 2014
This Moment
This past weekend I know of three children who lost their life. A four month old, three year old and a thirteen year old. I am sure there are many more who died as well. In eight days not counting today it will be two years to the day I found out my sweet innocent Natalia had died, she didn't even get to take a breath outside of my womb.
So if you are expecting, enjoy it. Yes it's hard but trust me it could be worse. If you have a child hold them tight. While you expect to outlive your child the truth is every day is a gift. For you and for them. They can be taken at any moment from you and you can be taken from them.
Learn to live life to its fullest. Don't put off what you can do today for tomorrow. Unless it's cleaning. Cleaning can wait if it means taking the time to chase your kids. I won't lie I don't clean as much as I'd like and while it drives me crazy I am lucky it means extra time with Aaliyah and Melody. Yes I do need to get things more organized but as I type this Melody is laying next to me in the rock and play sleeping. Aaliyah is sitting between my legs. Would I change it only if it meant Natalia would be here with us.
This moment only comes once in your life so love it, live it and enjoy it to its fullest. Turn those moments into memories that last a lifetime.
Wednesday, April 30, 2014
The Dreaded D word... Depression
Yes there is more than one dreaded D word but this one to me is the big one. Its something I have struggled with my whole life. Something that many I know struggle with day in and day out.
I have a lot to be happy for but in the same breath so much to be sad about. I have Aaliyah and Melody but I don't have Natalia. Aaliyah is doing so much more than expected but not what your normal 1 1/2 year old should be doing. I notice differences in the girls already and that will just grow. Yes every child is different but in our case it's BIG things.
My husband Robert also started a new job that keeps him out of the apartment all day, Monday through Friday. So I went from caring for Aaliyah 75% of the time to about 95% of the time. All appts, therapy and what not fell on me. That was on top of my appts that just seemed to build and build because of my own health issues. I was dependent on friends and family for rides to the doctors. Worst of all my best friend was/is gone a lot. As crazy as it seems to some, I really loved working together because it meant having so much time together.
One of the worse things that happened during this time was one of my aunts dying. She was young and really had so much more to live for. I also lost one of my grandfathers, as much as it sucks to know he is gone. He was older and his health had been declining for years.
Than as the time came to have Melody, I felt an overwhelming sadness because I should have two excited little girls getting ready to meet their baby sister. I would be delivering in the same hospital that I delivered Aaliyah and Natalia. This time my experience should be a lot different but what if it wasn't. I was so scared it would be another NICU stay. While I knew that everything was looking good it still worried me.
What I struggle with the most is the loss of my sweet Natalia. I feel like if she was here things would be so different. I don't feel I know. Would it be better or worse? Could both girls have problems? Yes but they would both be here and that would be what matters.
So here we are, Melody will be a month old this coming weekend and I am just getting worse. Things have happened that I won't discuss on here why because it has nothing to do with the girls. Mind you I am discussing how I am doing because that DOES effect the girls. I am going to talk to the doctor, I do feel I need something and soon. I am not afraid to say I need help. Why should I? It is something we should all be okay with. We are human, and that means no matter how much we wish it we are NOT perfect.
I have a lot to be happy for but in the same breath so much to be sad about. I have Aaliyah and Melody but I don't have Natalia. Aaliyah is doing so much more than expected but not what your normal 1 1/2 year old should be doing. I notice differences in the girls already and that will just grow. Yes every child is different but in our case it's BIG things.
My husband Robert also started a new job that keeps him out of the apartment all day, Monday through Friday. So I went from caring for Aaliyah 75% of the time to about 95% of the time. All appts, therapy and what not fell on me. That was on top of my appts that just seemed to build and build because of my own health issues. I was dependent on friends and family for rides to the doctors. Worst of all my best friend was/is gone a lot. As crazy as it seems to some, I really loved working together because it meant having so much time together.
One of the worse things that happened during this time was one of my aunts dying. She was young and really had so much more to live for. I also lost one of my grandfathers, as much as it sucks to know he is gone. He was older and his health had been declining for years.
Than as the time came to have Melody, I felt an overwhelming sadness because I should have two excited little girls getting ready to meet their baby sister. I would be delivering in the same hospital that I delivered Aaliyah and Natalia. This time my experience should be a lot different but what if it wasn't. I was so scared it would be another NICU stay. While I knew that everything was looking good it still worried me.
What I struggle with the most is the loss of my sweet Natalia. I feel like if she was here things would be so different. I don't feel I know. Would it be better or worse? Could both girls have problems? Yes but they would both be here and that would be what matters.
So here we are, Melody will be a month old this coming weekend and I am just getting worse. Things have happened that I won't discuss on here why because it has nothing to do with the girls. Mind you I am discussing how I am doing because that DOES effect the girls. I am going to talk to the doctor, I do feel I need something and soon. I am not afraid to say I need help. Why should I? It is something we should all be okay with. We are human, and that means no matter how much we wish it we are NOT perfect.
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