I have sat down a million times to explain WHY we would specifically adopt a child with special needs & what special needs parenting means to me. But I just can't explain it without the back story. So here it is... the beginning of our journey in special needs parenting.
I remember vividly when I was pregnant with our baby girl and we were choosing names. My husband liked a lot of cutesy little girl names, and I kept saying that we need something strong. Something suitable for a strong, fierce woman who could someday be a doctor, lawyer, or President of the United States! She needed something that would look good on her PhD diploma. At the time I worked for a university, and one of my tasks was printing diplomas, and my argument was that you rarely see a "cutesy" name on a doctoral diploma. We settled on a "cutesy" name, with a long version. You know, for her PhD diploma some day. We settled on a name that to me, spoke of kindness, gentleness, but with strength. I made sure that her full name also spoke to the plans that I had for her life - to conquer the world. I could imagine only great things for her life - no limits, just success. But God had different plans.
L was born, and she was perfect. Everything was wonderful, and easy, and she melded our family together just perfectly. In one moment, our family changed, and we loved every second of it. Our princess had arrived. When she was about 6 months old, we took her to the doctor because she wasn't developing the way she should. She had gotten sick and started to regress. She had withdrawn into herself and wasn't responding to our stimuli, and she was sleeping like a newborn. Thus began the most terrifying experience of our lives. She was hospitalized, and testing began. The story is quite long, but I'll give you the short version. She had an ear infection, and it had made her very sick. There were a lot of other factors too - low muscle tone, pressure in ears causing hearing problems, developmental delay, etc. Long story short, testing began, but we left the hospital with no real answers.
The day we left the hospital we broke. We didn't know what was wrong with our baby, just that she was slipping into herself. We knew we could lose her. I remember vividly sitting on the bed, crying with my husband. That day I cried out to God - I would take ANYTHING that He gave us, as long as I did not lose my baby. Anything! As long as I didn't lose her. That moment was a turning point for me. My life shifted, my outlook changed, and my priorities were reset. It took a long time before we received the correct diagnosis for her, but over the next few months, we officially donned the title "special needs parents". Those months are a blur to me, because they were busy, scary, and overwhelming. We just put one foot in front of the other and continued on.
There were times that I felt the grief over the death of the dreams that I once had for L. There are times when I still feel the grief. She will most likely never live independently. She will probably never drive a car, marry, have children, have a career. She will miss out on the things that I once used to define my life. It took awhile for me to learn that life is not truly defined by those things. I began to let go of my expectations for her life, and I found an amazing thing: I was able to let go of my expectations for other people as well. Suddenly, it didn't seem so important if one of my sons didn't make As on his report card - he was healthy, happy, and loved God. THAT is what really mattered. This began to spread to other people and I learned to understand people how they are, not how I want them to be.
Then came the joy. It's funny, before we had L, I never knew that a little girl laughing for the 1st time could become one of the greatest moments of your life. I thought that big moments in life were things like weddings, graduations, and promotions. The truth is, big moments in life are first steps, first words, and first hugs. THOSE are the things that make a life.
I don't want to make it all rainbows and sunshine. Special needs parents are under extreme pressure every day. My husband and I have been planning for what will happen when we die since she was 2. Our home is set up to meet her needs (cool coffee table = death trap)! Our financial pressures are enormous - not only for her medical care, but travel to specialists, special equipment for her, and just the cost of replacing everything that she damages. She is non-verbal, and not very adaptive to change, so there are very few people that we can leave her with, and going places as a family is tough. There are a million complications to our lives, and the pressure is tough. But God has given us peace and joy.
God has spoken this truth to my heart - He is the creator of life! He knit her together, he knows the number of hairs on her head! And here is the biggie: If I believe those things, then I must believe that He counted the chromosomes that he put in her body! That extra chromosome is not a mistake, it is not an accident, it is part of God's plan for her. I don't know the reason that children are born differently. I don't know why there are unfair diseases in children that cause them pain and tear apart families. I wish that I did. All I know is this: God MADE my daughter. He did so with a purpose.
I used to dream that she would conquer the world. Now I see God's plans for her: to change the world. And she has already started.
Next time I'll share how parenting our sweet special needs princess led us down the path to special needs adoption.
Be part of our story, help us save a life:
You may also make a tax-deductible donation at:
I remember vividly when I was pregnant with our baby girl and we were choosing names. My husband liked a lot of cutesy little girl names, and I kept saying that we need something strong. Something suitable for a strong, fierce woman who could someday be a doctor, lawyer, or President of the United States! She needed something that would look good on her PhD diploma. At the time I worked for a university, and one of my tasks was printing diplomas, and my argument was that you rarely see a "cutesy" name on a doctoral diploma. We settled on a "cutesy" name, with a long version. You know, for her PhD diploma some day. We settled on a name that to me, spoke of kindness, gentleness, but with strength. I made sure that her full name also spoke to the plans that I had for her life - to conquer the world. I could imagine only great things for her life - no limits, just success. But God had different plans.
L was born, and she was perfect. Everything was wonderful, and easy, and she melded our family together just perfectly. In one moment, our family changed, and we loved every second of it. Our princess had arrived. When she was about 6 months old, we took her to the doctor because she wasn't developing the way she should. She had gotten sick and started to regress. She had withdrawn into herself and wasn't responding to our stimuli, and she was sleeping like a newborn. Thus began the most terrifying experience of our lives. She was hospitalized, and testing began. The story is quite long, but I'll give you the short version. She had an ear infection, and it had made her very sick. There were a lot of other factors too - low muscle tone, pressure in ears causing hearing problems, developmental delay, etc. Long story short, testing began, but we left the hospital with no real answers.
The day we left the hospital we broke. We didn't know what was wrong with our baby, just that she was slipping into herself. We knew we could lose her. I remember vividly sitting on the bed, crying with my husband. That day I cried out to God - I would take ANYTHING that He gave us, as long as I did not lose my baby. Anything! As long as I didn't lose her. That moment was a turning point for me. My life shifted, my outlook changed, and my priorities were reset. It took a long time before we received the correct diagnosis for her, but over the next few months, we officially donned the title "special needs parents". Those months are a blur to me, because they were busy, scary, and overwhelming. We just put one foot in front of the other and continued on.
There were times that I felt the grief over the death of the dreams that I once had for L. There are times when I still feel the grief. She will most likely never live independently. She will probably never drive a car, marry, have children, have a career. She will miss out on the things that I once used to define my life. It took awhile for me to learn that life is not truly defined by those things. I began to let go of my expectations for her life, and I found an amazing thing: I was able to let go of my expectations for other people as well. Suddenly, it didn't seem so important if one of my sons didn't make As on his report card - he was healthy, happy, and loved God. THAT is what really mattered. This began to spread to other people and I learned to understand people how they are, not how I want them to be.
Then came the joy. It's funny, before we had L, I never knew that a little girl laughing for the 1st time could become one of the greatest moments of your life. I thought that big moments in life were things like weddings, graduations, and promotions. The truth is, big moments in life are first steps, first words, and first hugs. THOSE are the things that make a life.
I don't want to make it all rainbows and sunshine. Special needs parents are under extreme pressure every day. My husband and I have been planning for what will happen when we die since she was 2. Our home is set up to meet her needs (cool coffee table = death trap)! Our financial pressures are enormous - not only for her medical care, but travel to specialists, special equipment for her, and just the cost of replacing everything that she damages. She is non-verbal, and not very adaptive to change, so there are very few people that we can leave her with, and going places as a family is tough. There are a million complications to our lives, and the pressure is tough. But God has given us peace and joy.
God has spoken this truth to my heart - He is the creator of life! He knit her together, he knows the number of hairs on her head! And here is the biggie: If I believe those things, then I must believe that He counted the chromosomes that he put in her body! That extra chromosome is not a mistake, it is not an accident, it is part of God's plan for her. I don't know the reason that children are born differently. I don't know why there are unfair diseases in children that cause them pain and tear apart families. I wish that I did. All I know is this: God MADE my daughter. He did so with a purpose.
I used to dream that she would conquer the world. Now I see God's plans for her: to change the world. And she has already started.
Next time I'll share how parenting our sweet special needs princess led us down the path to special needs adoption.
Be part of our story, help us save a life:
You may also make a tax-deductible donation at:
Even $5 can help us rescue this child.
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