February marks CHD Awareness Month. This month means more to me then it ever has. So many people look at Gavin and never even know that there is something wrong with him. And let me tell you, I am thankful for that. I feel like it makes him more normal to look normal. But everyday is a battle for me and for Adam. Living with a child with a heart defect is an emotional challenge. I got this post from some of our heart support group, it says it all...
What does it mean to be the parent of a child with a heart defect?
What does it mean to be the parent of a child with a heart defect?
It means going into your baby's room a dozen times a night just to check to see if he's still breathing. It means standing over the crib to watch the chest rise and fall and when you don't see it move, you begin to panic and put your head down close to your baby's face to try and hear him breathe. It means that when you don't see the chest move and you don't hear him breathing (because your own heart's beating is drowning out any other sound in the room), you put your finger under the baby's nose to feel the air on your finger until you wake the baby and it stirs and you're thankful, so thankful that he's still with you.
What does it mean to be the parent of a child with a heart defect?
It means feeling a huge sense of relief when he hears you and opens his eyes and smiles. It means saying a prayer of thanks for another day.
What does it mean to be the parent of a child with a heart defect? It means measuring out his medication and panicking if he spits some of it out. How much did he spit out? One cc? Two or three? Then wondering if you should guesstimate how much more he should have and if you'd overmedicate him.
What does it mean to be the parent of a child with a heart defect? It means checking his nail beds against your own to determine how blue he is today. It means asking your husband, your mother, or your sister, "Do his lips look blue to you?" It means snuggling him in an extra blanket for fear he won't be warm enough.
What does it mean to be the parent of a child with a heart defect? It means worrying that even a sniffle could cause an infection that could harm his heart. It means taking your baby to the doctor and worrying that he will catch something in the waiting room, so you walk back and forth in the corridor until the nurse calls her name and takes you straight back to the examination room.
What does it mean to be the parent of a child with a heart defect? It means knowing that everyday is a blessing and a gift. It means knowing that you are the luckiest person in the world, just to be a parent. It means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no apparent reason.
What does it mean to be the parent of a child with a heart defect?
It means praying for a miracle to save your baby's life. It means praying your marriage is strong enough to endure the hospitalizations, separations, and grief. It means praying for the will to live, even if your baby doesn't.
What does it mean to be the parent of a child with a heart defect? It means your own heart knows a pain, no parent should know. It means feeling weak, helpless, angry, and depressed because your child's fate is out of your hands. It means feeling strong, determined, and brave because you know you have to be.
What does it mean to be the parent of a child with a heart defect? It means your love knows new unlimited boundaries. It means your pride in your child's accomplishments is unparalleled. It means your pain has taught you a deeper sense of compassion than you ever imagined.
So What Does All Of This Mean?
It means we are all united by the same feelings. It means that we all know the mixed up emotions of dealing with death, but more importantly of living with life. It means that even though we are strangers, we are more to each other than friends could ever be.
author-- unknown....
**If you can try to get out and donate blood this month, so many heart patients need blood transfusions and it's a great way to give to those in need**
What does it mean to be the parent of a child with a heart defect?
What does it mean to be the parent of a child with a heart defect?
It means going into your baby's room a dozen times a night just to check to see if he's still breathing. It means standing over the crib to watch the chest rise and fall and when you don't see it move, you begin to panic and put your head down close to your baby's face to try and hear him breathe. It means that when you don't see the chest move and you don't hear him breathing (because your own heart's beating is drowning out any other sound in the room), you put your finger under the baby's nose to feel the air on your finger until you wake the baby and it stirs and you're thankful, so thankful that he's still with you.
What does it mean to be the parent of a child with a heart defect?
It means feeling a huge sense of relief when he hears you and opens his eyes and smiles. It means saying a prayer of thanks for another day.
What does it mean to be the parent of a child with a heart defect? It means measuring out his medication and panicking if he spits some of it out. How much did he spit out? One cc? Two or three? Then wondering if you should guesstimate how much more he should have and if you'd overmedicate him.
What does it mean to be the parent of a child with a heart defect? It means checking his nail beds against your own to determine how blue he is today. It means asking your husband, your mother, or your sister, "Do his lips look blue to you?" It means snuggling him in an extra blanket for fear he won't be warm enough.
What does it mean to be the parent of a child with a heart defect? It means worrying that even a sniffle could cause an infection that could harm his heart. It means taking your baby to the doctor and worrying that he will catch something in the waiting room, so you walk back and forth in the corridor until the nurse calls her name and takes you straight back to the examination room.
What does it mean to be the parent of a child with a heart defect? It means knowing that everyday is a blessing and a gift. It means knowing that you are the luckiest person in the world, just to be a parent. It means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no apparent reason.
What does it mean to be the parent of a child with a heart defect?
It means praying for a miracle to save your baby's life. It means praying your marriage is strong enough to endure the hospitalizations, separations, and grief. It means praying for the will to live, even if your baby doesn't.
What does it mean to be the parent of a child with a heart defect? It means your own heart knows a pain, no parent should know. It means feeling weak, helpless, angry, and depressed because your child's fate is out of your hands. It means feeling strong, determined, and brave because you know you have to be.
What does it mean to be the parent of a child with a heart defect? It means your love knows new unlimited boundaries. It means your pride in your child's accomplishments is unparalleled. It means your pain has taught you a deeper sense of compassion than you ever imagined.
So What Does All Of This Mean?
It means we are all united by the same feelings. It means that we all know the mixed up emotions of dealing with death, but more importantly of living with life. It means that even though we are strangers, we are more to each other than friends could ever be.
author-- unknown....
**If you can try to get out and donate blood this month, so many heart patients need blood transfusions and it's a great way to give to those in need**
4 comments:
Hello,
I too am a "Heart Mommy" and found your blog through another blog (Abby's)that I still am not sure how I stumbled onto. Anyway, my son Ethan also has HLHS and has had his first 2 surgeries. He is 9months old today and is currently doing very well. I just wanted to introduce myself and let you know that I was following your story. I could definitely relate to the feelings and thoughts in your post. Obviously, if I could make Ethan's heart whole today, I would. However, regardless of the challenges and uncertainties that we all face, I still feel so lucky and very blessed to have Ethan in our home, regardless of how long that may be. I hope you and your family continue to do well.
---Allison (ethanjamescurtis.blogspot.com, if you're interested)
You and your sweet boy are in my prayers daily. I cheer for you everyday that you made it one more day. God has big plans- HE is awesome that way. Love and prayers- Sarah
What a great post!!! I know I haven't walked in your shoes, but I'm assuming this post pretty much hits the nail on the head describing what you and Adam have been through and continue to go through each day. You guys are so strong and amazing!
You have such concern and love for others who are walking a similar path. God is working through your life.
God Bless you guys!
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