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It is all in the eyes...


mom md
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Yesterday I took my three children to get pencil scetch drawings done of them for their dad for Christmas. This Russian artist was in Charlotte and is unbelievable. He draws your child in about 30 minutes (it was expensive but very good). He focuses on the eyes and then the rest of the drawing is a suggestion of the child. I was showing them to a friend this morning and they are great but there is something not right with my oldest's drawing. Then I realized it is because he is recovering from an exacerbation and I can see it in his eyes. They look sad and vacant. I even brought a picture immediately post-PEX so the artist could see this "life" in his eyes. I am not sure he understood me but said "don't worry about it".

I started to get sad that now there is a permanent reminder on my wall about this nightmare but then I paused...maybe I need a reminder that I walk past each day. Maybe I am supposed to remember all we have been through and that to try to move on and forget that this happened is not right. This has forced me to slow down and focus on my family. This has also made me realize each day is a blessing, especially the normal ones that are often forgotten. It has made me more thankful for what I have and protective of it. My son is doing great on the steroids now and is almost symptom free. Our plan is to go to IVIG next if needed. I am still struggling with the "why my child" question but I am sure one day I will figure that one out too. I do think the journey is often the most important part of the trip.

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I started to get sad that now there is a permanent reminder on my wall about this nightmare but then I paused...maybe I need a reminder that I walk past each day. Maybe I am supposed to remember all we have been through and that to try to move on and forget that this happened is not right. This has forced me to slow down and focus on my family. This has also made me realize each day is a blessing, especially the normal ones that are often forgotten. It has made me more thankful for what I have and protective of it. My son is doing great on the steroids now and is almost symptom free. Our plan is to go to IVIG next if needed. I am still struggling with the "why my child" question but I am sure one day I will figure that one out too. I do think the journey is often the most important part of the trip.

 

When our daughter was really ill, we used to take pictures of her eyes, trying to get a picture of what was happening. We have a electronic frame in our kitchen & I can tell you if she was ill or not at a glance. Even when smiling, her eyes are wrong. It makes me sad to see them - but I agree, they are there for a reason. I can't forget what we have gone through for many reasons, not the least of which is to stay prepared for the future. Everyday, I know I bore my husband by raving about common place things that just feel like miracles to me. Saturday, Megan helped me sort and organize her books. Sunday, she organized her clothing drawers when I asked her to, without help. I have never been able to have her clean any part of her room before without a lot of supervision and upset. Then we shopped for clothes with no drama. I find her reading in her room sometimes. In so many ways, I just find her to be a different person now. My husband said to me last night "I am so glad you are getting to just be a normal mom for once". It made me cry. I do find such joy in small things. Maybe having reminders of that time will help me keep that simple joy in our lives.

 

I wonder what each of us will now contribute to the understanding of this disease, in small and large ways. There is an odd sense of "calling" in the recovery mode, that I hope we can hold onto.

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Yesterday I took my three children to get pencil scetch drawings done of them for their dad for Christmas. This Russian artist was in Charlotte and is unbelievable. He draws your child in about 30 minutes (it was expensive but very good). He focuses on the eyes and then the rest of the drawing is a suggestion of the child. I was showing them to a friend this morning and they are great but there is something not right with my oldest's drawing. Then I realized it is because he is recovering from an exacerbation and I can see it in his eyes. They look sad and vacant. I even brought a picture immediately post-PEX so the artist could see this "life" in his eyes. I am not sure he understood me but said "don't worry about it".

I started to get sad that now there is a permanent reminder on my wall about this nightmare but then I paused...maybe I need a reminder that I walk past each day. Maybe I am supposed to remember all we have been through and that to try to move on and forget that this happened is not right. This has forced me to slow down and focus on my family. This has also made me realize each day is a blessing, especially the normal ones that are often forgotten. It has made me more thankful for what I have and protective of it. My son is doing great on the steroids now and is almost symptom free. Our plan is to go to IVIG next if needed. I am still struggling with the "why my child" question but I am sure one day I will figure that one out too. I do think the journey is often the most important part of the trip.

 

I think remembering is important and I sincerely hope that this reminder will help you through any hard times (non PANDAS related) in the future. You can get through this, you can get through anything. I think it's great to see the positives of how we have changed and how we are different parents because of it.

 

That artist sounds great if he captured the eyes so accurately!

 

HUGS!

 

Susan

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MomMD- It is in the eyes.

 

Julia is also coming out of an exacerbation post pex, and on steroids. I can't tell you how many times I have said to my dh " but look at her eyes.."

 

It is heartbreaking

 

 

they are scary... dark.... stormy... full of hate and woe.

I can't tell you how upset I get.

:(

 

Michael

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"MomMD- It is in the eyes. "

 

Absolutely. All I need to know how my dd is doing PANDAS-wise is to look in her eyes. Her therapist has noticed this, too, and calls it "the look". When they are clear and sparkling, I am at peace. When they get that dark, lost, far away look - well, you all know.

 

Peggy

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My son had his 5 year picture taken in the beginning of an exacerbation. Iwas never able to put up that photo or share it with family. It hurt too much. But he is well at the moment and I've found myself looking at that same 5 year picture now and then. Maybe as a reminder of what is was like and to ensure myself during questionable moments that it is not happening again and to remind myself what we have ovecome and to enjoy him as much as I can right now.

 

I agree with the "calling". For me it is because I really don't know what our future may hold. I can not leave it up to others to map out our path. I don't know what it may be for our grandchildren who may also be afflicted with this disorder. I also cannot expect others to come to my need if I am not willing to be there for them. I know what it is like to go through this all alone. I didn't find you guys until the third storm began to settle. I feel such a sense of community when I stumble on another mom who has been living with this for years and is so happy to connect with someone who "gets it". Finally, I want to be able to proudly stand and prove to those who questioned us that PANDAS does exist, my son has this, my son did overcome. That part may be just spite, but that's part of me too:)

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I agree with the "calling". For me it is because I really don't know what our future may hold. I can not leave it up to others to map out our path. I don't know what it may be for our grandchildren who may also be afflicted with this disorder. I also cannot expect others to come to my need if I am not willing to be there for them. I know what it is like to go through this all alone.

That's it exactly - this sense that we got "lucky" to find answers, but that so many other children are suffering in the privacy of their homes. That without the internet, we would never have known. This sense of obligation to ensure that others have the opportunity to help their children, regardless of socio-economic barriers - or resistent doctors.

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I also have struggled with the 'why my child?' thought. Now when I think about it I think of how I maybe able to offer help - to another parent in the future. However, what really excites me is thinking how my children might help others in the future. I daydream at times that my PANDA's son will have a passion for research or for healing ....to help others based on his battles.... or my daughter may have the same passion.... after seeing how her brother has suffered. No matter what their path, I feel our family is also learning to to have more compassion along the way.

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