These were questions asked by another special needs blogger, but I thought that they were really good ones worth answering as well! Plus, I accidentally answered these first, instead of the questions I was supposed to answer. Oops...
1. Think of the day your child received his or her diagnosis. What is the first word that comes to mind? devastation
2. Who is your favorite doctor, specialist, or therapist for your child and why?
Currently: Abby's Infants and Toddlers therapists (PT and speech) are both wonderful. They have endured SO many questions, lots of worrying, and even a few tears! They are both fabulous at their job and aren't afraid to go with the flow if Abby isn't feeling the whole therapy thing that day. They are Abby's biggest cheerleaders and have been a huge support to me as well. We also adore her pediatrician, who has been there for us from the very beginning and who has never ever doubted Abby's ability to prove the doctors wrong! He has calmed many fears and is always thinking in Abby's best interest. We know he is always just a phone call away.
Past: We have several nurses we love (Megan, Jessica, and Gila!) from Abby's NICU/MWPH days. They are all so sweet and we are blessed to still be in contact with all three of them. Megan was such a support during those terrifying early days; Jessica taught us most of what we know about trach care and was celebrating with us the day we brought Abby home; Gila helped me to see that I can use my experience to encourage others.
3. What symptom of your child's disability breaks your heart the most? This is a tough question, because I'm trying to focus on what IS right now. Obviously, the idea of losing her is always terrifying. I also hurt at the thought of the surgeries she may have to endure in the future. It's only going to get harder as she gets older. But I guess the "symptom" would be that she can't just sit and enjoy a snack with her brother or take a bite of an apple if she wants it...because she just doesn't want it!!
4. What symptom of your child's disability is actually somewhat endearing? I love every little babble that comes out of her mouth, because we were told that she would never be able to communicate!
5. What is something your child is REALLY good at? Abby loves to sing and dance! She learns the words to songs really quickly and will sing along. She also makes up her own songs and often sings them--loudly--when she's supposed to be asleep!
6. In three words, describe how you have changed after becoming a special-needs parent. Compassionate. Empathetic. Aware.
7. How has having a special-needs child impacted your spiritual life? I have realized more fully that God is faithful and that He will never leave me. I have also become much more aware of how I can do NOTHING without God!
8. Would you take away your child's disability if you could? Why or why not? This is a tough question too, because I know that she was fearfully and wonderfully made. Abby is perfect just the way she is. But...I would most definitely make that tiny jaw a more typical size so that her airway opened up and didn't cause me so much angst!
9. What is the most disrespectful thing anyone has ever said to you or your child? When Abby was still on a ventilator 24/7, we were on our local boardwalk trying to embrace a little normalcy. It was very early on, and I was very nervous about what I might encounter. One woman walked right up to us with this absolutely disgusted look and asked, "What in the world is the matter with her?" I was mostly upset because my son was there hearing it as well. We were all so new at this that it just really upset me.
10. "One thing I wish more people realized about my child is ... Abby's speech, feeding, and gross motor issues do not equal cognitive delays. Sometimes people see that we are still feeding her purees, or that she walks with her feet turned out, or that they have trouble understanding her, and they automatically assume she has cognitive delays as well. She doesn't.
11. If you were to articulate all the wishes you have for your child, what would they be? I wish her a long, happy life filled with love. I wish that she fulfills the purpose God has for her life and that she is able to see what a special miracle she is. I wish that she continues to live a life without limitations and that we are able to support her in all of her dreams.
1. Think of the day your child received his or her diagnosis. What is the first word that comes to mind? devastation
2. Who is your favorite doctor, specialist, or therapist for your child and why?
Currently: Abby's Infants and Toddlers therapists (PT and speech) are both wonderful. They have endured SO many questions, lots of worrying, and even a few tears! They are both fabulous at their job and aren't afraid to go with the flow if Abby isn't feeling the whole therapy thing that day. They are Abby's biggest cheerleaders and have been a huge support to me as well. We also adore her pediatrician, who has been there for us from the very beginning and who has never ever doubted Abby's ability to prove the doctors wrong! He has calmed many fears and is always thinking in Abby's best interest. We know he is always just a phone call away.
Past: We have several nurses we love (Megan, Jessica, and Gila!) from Abby's NICU/MWPH days. They are all so sweet and we are blessed to still be in contact with all three of them. Megan was such a support during those terrifying early days; Jessica taught us most of what we know about trach care and was celebrating with us the day we brought Abby home; Gila helped me to see that I can use my experience to encourage others.
3. What symptom of your child's disability breaks your heart the most? This is a tough question, because I'm trying to focus on what IS right now. Obviously, the idea of losing her is always terrifying. I also hurt at the thought of the surgeries she may have to endure in the future. It's only going to get harder as she gets older. But I guess the "symptom" would be that she can't just sit and enjoy a snack with her brother or take a bite of an apple if she wants it...because she just doesn't want it!!
4. What symptom of your child's disability is actually somewhat endearing? I love every little babble that comes out of her mouth, because we were told that she would never be able to communicate!
5. What is something your child is REALLY good at? Abby loves to sing and dance! She learns the words to songs really quickly and will sing along. She also makes up her own songs and often sings them--loudly--when she's supposed to be asleep!
6. In three words, describe how you have changed after becoming a special-needs parent. Compassionate. Empathetic. Aware.
7. How has having a special-needs child impacted your spiritual life? I have realized more fully that God is faithful and that He will never leave me. I have also become much more aware of how I can do NOTHING without God!
8. Would you take away your child's disability if you could? Why or why not? This is a tough question too, because I know that she was fearfully and wonderfully made. Abby is perfect just the way she is. But...I would most definitely make that tiny jaw a more typical size so that her airway opened up and didn't cause me so much angst!
9. What is the most disrespectful thing anyone has ever said to you or your child? When Abby was still on a ventilator 24/7, we were on our local boardwalk trying to embrace a little normalcy. It was very early on, and I was very nervous about what I might encounter. One woman walked right up to us with this absolutely disgusted look and asked, "What in the world is the matter with her?" I was mostly upset because my son was there hearing it as well. We were all so new at this that it just really upset me.
10. "One thing I wish more people realized about my child is ... Abby's speech, feeding, and gross motor issues do not equal cognitive delays. Sometimes people see that we are still feeding her purees, or that she walks with her feet turned out, or that they have trouble understanding her, and they automatically assume she has cognitive delays as well. She doesn't.
11. If you were to articulate all the wishes you have for your child, what would they be? I wish her a long, happy life filled with love. I wish that she fulfills the purpose God has for her life and that she is able to see what a special miracle she is. I wish that she continues to live a life without limitations and that we are able to support her in all of her dreams.
Comments
I feel lead to send you the lyrics to this song. Here goes:
"Song for Those with Disabilities"
Written by Bob Kauflin
Within the womb I formed you
I fashioned and made each part
I thought of your fingers, your hands and your feet
Your mouth, your lungs, your heart
Though you might think that you’re different
I made you the way that you are
So you could discover the God who made you
And find out all I am
And though you might think you have limitations
There are no limits with Me
When you turn your eyes to My salvation
Finally you will see
In Me, you have all that you need
In Me, you have all that you need
In Me, you have all that you’ll ever need.
And I’ve heard each prayer that you’ve called out
“Why did You make me this way?”
You may not completely understand now
But there will be a day
When I make everything known to you
And what you don’t now understand
You will see that I'm Wise and I’m Mighty and Good
Just like all My plans
And if you trust in the work of My Son
One day you will see
That I’ve made you the way you are
To draw your heart to Me
To draw your heart to Me.
--Raelyn