Bubbles
Written Apr 8, 2012 1:54pm by Amber Gannon Medina
I remember the first time I met another mother whose baby had the same kind of condition Mira does. She had been at the hospital for a very long time and her son had just had a heart transplant. She was so warm and open and most of all very positive. I walked away from our conversation wanting to keep as much distance from her as possible. When I saw her, I went the other way. I just wasn't ready.
Support groups leave me with conflicted feelings. Sometimes the only way to get through a difficult time is playing pretend. In the beginning of Mira's journey, I was ok with hearing all the success stories where the kid makes a miraculous recovery and does better than anyone ever thought they would. I needed to hear those stories, and I still do. However, very recently I've started to find comfort and strength in knowing all I can about what we may encounter in the future. I also realized Mira has gone through a lot of the very things I was afraid of hearing about-extended hospital stays, complications from her surgeries too numerous to count (strike that! Operations themselves too numerous to count!), feeding issues, developmental delays....granted, there are still so many more difficulties we may encounter along the way-heart failure, transplant, surgeries, etc, but I am no longer afraid of them like I was before.
And I wish I had gotten to this place of limited acceptance earlier than this. I am starting to see there is a whole world outside of Mira's room. I am noticing other parents seem to know each other and keep up to date on each others stories. Even more surprising to me, they want to tell me about their kids struggles and triumphs. There is no pity or surprise when I mention we have been here 6 whole months or that Mira has another surgery ahead of her in a few years. Instead of swapping stories about what kind if solids we have introduced, other mothers give me tips on what kind of food pump I should buy or what kind of g-tube their kids have.
Hearing other stories also make me realize Mira is just one of many amazing kids who face a unique struggle. There is the little boy who wears his super hero cape while he is walking around with a machine that keeps his heart beating. Another little boy has learned how to use the nurses voice pagers to prank call doctors and there is another baby whose mother gave us a handmade knit cap for valentines day. There are do many families who face amazing hardships and still find the time and wherewithal to give.
I've been so wrapped up in trying to keep Mira alive and learning about her condition, I've been missing out on opportunities to accept other peoples' knowledge, warmth and support. I've also found (in my insane flurry of research) that once Mira gets older she may find comfort in being around other kids who have been through what she has, other little people who have gnarly chest scars. Its time to start opening up our little bubble here at the hospital.
While I will always be an introvert who loves solitude and alone time, I see that Mira's journey requires more from me. It has widened my circle of family and friends and taught me I can't do this alone. I am starting to see we are not the only parents who go through heartache and sorrow while we watch our babies suffer. There is still so much I will learn from this experience and so many people I will learn from. I need to open up.
Happy easter everyone!!
Support groups leave me with conflicted feelings. Sometimes the only way to get through a difficult time is playing pretend. In the beginning of Mira's journey, I was ok with hearing all the success stories where the kid makes a miraculous recovery and does better than anyone ever thought they would. I needed to hear those stories, and I still do. However, very recently I've started to find comfort and strength in knowing all I can about what we may encounter in the future. I also realized Mira has gone through a lot of the very things I was afraid of hearing about-extended hospital stays, complications from her surgeries too numerous to count (strike that! Operations themselves too numerous to count!), feeding issues, developmental delays....granted, there are still so many more difficulties we may encounter along the way-heart failure, transplant, surgeries, etc, but I am no longer afraid of them like I was before.
And I wish I had gotten to this place of limited acceptance earlier than this. I am starting to see there is a whole world outside of Mira's room. I am noticing other parents seem to know each other and keep up to date on each others stories. Even more surprising to me, they want to tell me about their kids struggles and triumphs. There is no pity or surprise when I mention we have been here 6 whole months or that Mira has another surgery ahead of her in a few years. Instead of swapping stories about what kind if solids we have introduced, other mothers give me tips on what kind of food pump I should buy or what kind of g-tube their kids have.
Hearing other stories also make me realize Mira is just one of many amazing kids who face a unique struggle. There is the little boy who wears his super hero cape while he is walking around with a machine that keeps his heart beating. Another little boy has learned how to use the nurses voice pagers to prank call doctors and there is another baby whose mother gave us a handmade knit cap for valentines day. There are do many families who face amazing hardships and still find the time and wherewithal to give.
I've been so wrapped up in trying to keep Mira alive and learning about her condition, I've been missing out on opportunities to accept other peoples' knowledge, warmth and support. I've also found (in my insane flurry of research) that once Mira gets older she may find comfort in being around other kids who have been through what she has, other little people who have gnarly chest scars. Its time to start opening up our little bubble here at the hospital.
While I will always be an introvert who loves solitude and alone time, I see that Mira's journey requires more from me. It has widened my circle of family and friends and taught me I can't do this alone. I am starting to see we are not the only parents who go through heartache and sorrow while we watch our babies suffer. There is still so much I will learn from this experience and so many people I will learn from. I need to open up.
Happy easter everyone!!
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