The name is Hooli.
I just feel like I should write something here since something hasn't been written in a while.
First off I want to let you all know that I am a parent of one special needs kid. My child is a medical miracle whom I know came from God. When my child was born they had a blue spell. Which led us to bad news, to worse news. Just after 8hrs of giving birth to my first child (first so far) we realized they had a serious heart problem. The hosptial didn't have enough or any of the proper equipment so we had to transfer to another bigger hosptial. Once I was released to go home we headed to the other hospital. There we found out our child had a whole in it's heart and a missing valve. This would require close monitoring and surgery (and surgery throughout her life). Imagine being 8 days old and having open surgery? We were transfered to the last hospital to have surgery. I remember crying and praying and repeating that pattern for hours. Finally when the time had come my family and my ex walked down the hallway and met the doctors halfway. God spoke to me "You've done all you can, let me take it from here." Kinda like I met him half way and he was going to carry the rest. I almost thought I saw two glows or brightened color around the doctors as they took her back. Even as I'm writing this I'm getting chills and crying. I have never seen God so clearly.
During her first operation the machine failed and they had to slow her heart rate down to 10 beats per minute! I know that though the machine failed, God didn't. She has DiGeorge syndrome. 1 in 2000 live births will get it. A 10% chance it is genetic and 90% it was an accident. For her and her children this will become a 50/50 shot.
I'm happy to say that today she is a toddler and yes we go through strife and we are and never will be out of the woods.
I know what it's like to sacerfice your body, your life for your children. Children to me are extra special and one day she will understand that she is special. I will tell her that being special is better than being average. I don't know what the purpose is of having children born with dieases are but they have I believe a very special purpose. I sometimes like to think this is my earthly angel God sent me. I never thought I could handle having a special needs child. I think now because of my child I'm more stronger than I could ever be. I think in a lot of ways God sent her to me and saved me.
I know what it's like to wake up and feel defeated. To feel like you are failing your precious child. I know how much crying in the bathroom or bedroom or quiet moments you have. Maybe you haven't experienced this before.
So why am I writing this you may ask? To testify? You betcha. Why not?
More than that I want to thank all of the special parents out there, mom or dad. Because let's be honest being a parent is a thankless job. I never realized it until I became a parent and being a special needs parent I believe takes an extra 110% to be.
So thank you for all of the hard work. The appointments you run them to. The boo boos you kiss. The cook, maid, the everything in between. Thank you.
Hooli
I just feel like I should write something here since something hasn't been written in a while.
First off I want to let you all know that I am a parent of one special needs kid. My child is a medical miracle whom I know came from God. When my child was born they had a blue spell. Which led us to bad news, to worse news. Just after 8hrs of giving birth to my first child (first so far) we realized they had a serious heart problem. The hosptial didn't have enough or any of the proper equipment so we had to transfer to another bigger hosptial. Once I was released to go home we headed to the other hospital. There we found out our child had a whole in it's heart and a missing valve. This would require close monitoring and surgery (and surgery throughout her life). Imagine being 8 days old and having open surgery? We were transfered to the last hospital to have surgery. I remember crying and praying and repeating that pattern for hours. Finally when the time had come my family and my ex walked down the hallway and met the doctors halfway. God spoke to me "You've done all you can, let me take it from here." Kinda like I met him half way and he was going to carry the rest. I almost thought I saw two glows or brightened color around the doctors as they took her back. Even as I'm writing this I'm getting chills and crying. I have never seen God so clearly.
During her first operation the machine failed and they had to slow her heart rate down to 10 beats per minute! I know that though the machine failed, God didn't. She has DiGeorge syndrome. 1 in 2000 live births will get it. A 10% chance it is genetic and 90% it was an accident. For her and her children this will become a 50/50 shot.
I'm happy to say that today she is a toddler and yes we go through strife and we are and never will be out of the woods.
I know what it's like to sacerfice your body, your life for your children. Children to me are extra special and one day she will understand that she is special. I will tell her that being special is better than being average. I don't know what the purpose is of having children born with dieases are but they have I believe a very special purpose. I sometimes like to think this is my earthly angel God sent me. I never thought I could handle having a special needs child. I think now because of my child I'm more stronger than I could ever be. I think in a lot of ways God sent her to me and saved me.
I know what it's like to wake up and feel defeated. To feel like you are failing your precious child. I know how much crying in the bathroom or bedroom or quiet moments you have. Maybe you haven't experienced this before.
So why am I writing this you may ask? To testify? You betcha. Why not?
More than that I want to thank all of the special parents out there, mom or dad. Because let's be honest being a parent is a thankless job. I never realized it until I became a parent and being a special needs parent I believe takes an extra 110% to be.
So thank you for all of the hard work. The appointments you run them to. The boo boos you kiss. The cook, maid, the everything in between. Thank you.
Hooli