Tomorrow I have to make I phone call that I'm not looking forward to. I have to schedule an appointment at the dentist for Savannah. Even though Savannah is almost 4 years old, she has never been to the dentist. You see, there hasn't exactly been a lot of time for that with all of her medical issues and hospitalizations since birth. The dentist hasn't exactly been at the top of my priority list.
Although I know the visit itself will most likely not be fun, it's the phone call that I'm not looking forward to. I will have to tell them that she has "special needs." UGH. Oh, how I despise that phrase most days. They will then ask me what her diagnosis is. I will tell them CHARGE Syndrome. Inevitably, they will then ask, "what is CHARGE Syndrome?" I get that all the time, even at doctor's offices. There is no real definition. It is what it is. I can give them my standard answer, "it's the name for the pattern of birth defects that she has." But, that isn't really telling them what CHARGE is. That's really just the definition of syndrome - "a group of symptoms that collectively indicate a disease, a psychological disorder, or other abnormal condition."
I don't know that to say when people ask me what it is. Are they wanting me to list out all of her birth defects? If so, that could take a few minutes. I feel like most people are wanting a nice, succinct answer. You know, ten words or less. Not gonna happen. I wish I had the easy answer. When you see someone with Down's Syndrome, you usually recognize it. It has a distinct facial appearance. If you say your child has Down's Syndrome, people just nod like they understand. I've never heard anyone say, "what's that?" But, the thing is, unless you know someone with Down's or have taken the time to look it up, you don't really know what it is and all it entails.
I was really touched a few months ago when a new friend took the time to look up CHARGE on her own to learn more about it. It meant a lot to me that she would do that instead of putting me through the usual barrage of questions. Don't get me wrong - I don't mind answering questions usually. It's just when you go to the doctor's office and have to explain for what seems like the millionth time what your child's diagnosis is, it can get redundant. You feel like they should know. Of course, I realize they can't possibly know every syndrome that's out there. But, when it's your child that has it, it feels like the most important one. And, it is. At least to you.
I don't really know where all this came from. I don't even know if anyone will ever read it. I just felt like I needed to get it out. If you happen to know someone who has a child with CHARGE and they have found that magical succinct answer to "what is CHARGE?" let me know. I'd love to talk to them.
If you want to know what CHARGE Syndrome is all about, visit the CHARGE Syndrome Foundation website. They offer a wealth of information on the subject.
For now, I'm still looking for that easy answer.
6 comments:
thanks to your CHARGE SYNDROME post i found u in google alerts i am a charger my self if you click on me youll find loads of links to other chargers so come on get clicking and putting oru chargers and me on the side nice to meet you hugs ellen in aus
JoAnna,
Make sure you ask if you can go back with Savannah at the dentist. Many will not let you and they do not make exceptions for our kids. That is the point where I say thank you, hang up, and call another dentist. So ask that first before you try to explain what Savannah needs.
Joanna, I have googled it too so I would know you go through on a daily basis. I dreaded calling and making a dentist appt. for L this morning... can't imagine how such a simple task can be so hurtful for you. Savannah is an inspiration to those who know her and you are too... b/c you are her mom! Maybe a pedicure is just what the doctor ordered! ;) Know you're admired, supported, and loved.
When I began to get to know you this year I too googled CHARGE syndrome. I had no idea what it was and being a new friend I didn't feel right asking. I can't say that I know how you feel because I don't. But I can say that my knowledge only makes me admire you more. You are an awesome momma and I am so proud to call you a friend. Savannah is a blessing from God. She is fearfully and wonderfully made - Jesus says so. And everytime I hear my kids sing a certain VBS song "I am who the great I AM says I am " I think about you. God has a wonderful plan for her and I hope that I am able to have some small part in her precious life. Praying for you as you make this phone call.
Joanna, When you first mentioned what Savannah had in Bible study, I went home that night and looked it up. What a mystery! It gave me a better understanding of what your family goes through. Having gotten to know you a little in our Bible study I am certain that God placed Savannah with the perfect family for her. She is so precious...this I know from just observing and being with her the few minutes you left her with me in the GCM. I hope things work out at the dentist and if there is ever anything you need please let me know. When things get rough, look for the face of God! You are loved! Janet
Joanna- People do care about you and your family, although you may not know what others are doing! I looked up CHARGE syndrome when you first said that is what Savannah was diagnosed with a few years ago...I was amazed at the information on the internet about something I had never heard of before (thank you internet!) I read for hours on what it was....I am not sure you are going to find a "short definition", but I pray that God gives you the comfort and the right words when you are asked about it! love you, Kara
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