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At the risk that you may all think me a zealot.....


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Someone Pm'd me today regarding my reply to t.anna's post. I was asked how why I think something good could possible come from our struggles. Because I feel so strongly about these feelings, I wanted to share a bit of my personal story with all of you. Here was my pm reply.

 

Well, first, just today, when I was sitting in my car waiting for my kids to get out of school, I watched some younger kids frolicking in the snow with carefree smiles....acting just like the 5 year olds that they were. Yes, I always become contemplative and a bit envious when I look at their parents and I think, "you have no idea how lucky you have it...". I think that is natural to feel that way.

 

However, staying in that moment offers nothing to me. It just breeds resentment, so I try to move past it.

 

Second. I truly do believe that something great can become of this. I remember when I was 20 yrs. old and I was overcome by a paralyzing depression that lasted for 10 years. I don't remember one day of relief in those 10 years. I used to pray for God to just take me. I also remember watching my parents have to watch their daughter suffer, and I remember that this caused a level of suffering for them that I now know only a parent can feel.

 

After 10 years, I found a way out of my depression. It stole 10 years of my life. I could have been bitter, I could have chosen to morn what I had lost. Friends, laughter, spontaneity, etc....

 

But as I healed, I realized that my depression had served me quite well. In losing, I learned to truly appreciate what had been taken from me. That was 20,years ago. Till this day, there is not a day that I don't wake up and I am thrilled that I can feel joy. Depression gave me a perspective on life that I truly feel that I would not otherwise have. It takes ALOT to get me truly down, and very little to make me happy. It in fact taught me what is most important in life, and I feel that I am a happier, more grounded person because of it. Beating depression has left me with an inner strength that nothing can take from me. Had I not suffered so much, and grown from it, I am not sure if I would be the person I am today who can wake up every morning and have faith that everything is going to be okay.

 

So what on earth could Pandas have to offer me and my children that could be good is what you ask? For one, it will leave you and your child very well equipped to deal with every day life struggles that to them and yourself...will feel like a cakewalk. Just think, when all of you are finally past this, everyday, when you can wake up without worrying about Pandas...a simple thing like a quiet house will put a smile on your face and warm your heart. In the future, when all is well, and sit back and listen to your child laugh on the phone, make plans with friends, graduate from college....these things, that so many parents can just expect to happen, will feel miraculous to you. These people, who appear to be so lucky right now, will they ever feel the joy that one day you will feel? Will they ever appreciate life and the simple things it has to offer the way the parents in this forum will one day appreciate and hold so sacred?

 

Yes, I do believe much positive can come from negative. I see my ds having struggled so much.. He has been hurt in so many ways by this. I have to believe that while so many days/moments have been so difficult for him that what we don't see that for every day the battle is fought, an inner strength is building, resilliance is forming. I see so many entitled adult/kids who are week because life was so easy. Imagine your child, and what he will take with him into the rest of his life when he/she has conquered this. Empathy, compassion, inner strength, fortitude, self confidence. Many children/adults lack these qualities. Our greatest leaders and Teachers most often come from difficult circumstances.

 

So yes, in a backward's way, I do feel that Panda's, Pans, etc...is a gift. Maybe it does not feel like one right now, but perhaps we will one day be able to contemplate and be thankful for what it did teach us.

 

 

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Q, very wisely and eloquently said!!! Its true, that that doesn't kill us makes us stronger. I think if the amazing and inspirational people I have met on this journey. I have learned not to take life's little moments for granted, and I have had to relearn the virtue of patience again and again...and again. I think we will be a much stronger and closer family for all that we are going through. Would I have ever asked for PANDAS? No way! we don't get to choose what happens in life, but we do get to choose how we handle it. If our children see us wallowing in misery asking why us? Hiw do we expect them to learn perseverance, faith and strength? There are plenty times I get depressed and frustrated and angry. But eventually I realize that I love my children for who they are and know that this disorder does not define them. And then I think to myself of all the children who have in curable cancers and diseases that will take their lives. We Re actually very lucky!!

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My abusive ex-husband was a gift that I would not trade. I was very young and it was 30 years ago, but it has reminded me every day for the 27ish years thatI I have been with my current husband, how blessed I am to have him. So instead of choosing to feel bitter, I have chosen to feel blessed. I would have missed noticing and appreciating the wonderful qualities in my current husband. So he is lucky as well because he is not taken for granted. So, we always tell our boys that we are sure that PANDAS is shaping them into some incredible future adults.

Edited by 3boysmom
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On quannie's point -- I'm up reading my Facebook feed full of parents absolutely apoplectic over the fact that they have to deal with TWO SNOW DAYS in a ROW!!! How can them cope and manage? My PANS son has been on medical leave from school since Oct 15 -- hasn't been to school in two months. It sucks, but we've gotten through it.

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qannie - well said! In the worst days, my son would have a pity party for himself and I'd remind him of the girl in his school who's been in a wheelchair her whole life and I asked him if he thought she'd trade places with him. No matter what our personal burdens are, there are always people with heavier ones. Millions of people around the world would roll their eyes at the things we struggle with. Missed school? Had to miss work? Savings depleted on medical care? At least we live in a country with great (if flawed) and free education, at least we have jobs, at least we had savings to begin with...It's so easy to focus on what we've lost yet so easy to dismiss what we had and still have. My heat's warming my house in a snow storm as I write. There are plenty of people in a 25 miles radius of me who can't say that.

 

My son has come out on the other side and is indeed far more resilient and wiser than his peers. He has a friend whose dad isnt' in the picture and whose bff was killed by a drunk driver. My dd's bff found her dad's body after he'd committed suicide a few months after her 7th birthday. Sure OCD and tics suck. But my kids are far from the only ones in our little town who've known loss and hardship. We tend to forget - but by sharing on this forum, we have a way forward, a way to get our kids well and to teach them valuable lessons along the way. We as parents are forever changed, and if we chose, it makes us better people.

 

Thanks for the "zealous" reminder, especially as the holidays approach and we all get a little more reflective.

 

Today, I'm thankful for: the coping tools ERP has given my kids to face life's challenges, for my awesome LLMD, for my supportive DH, for Sheila for creating this forum, which quite literally helped me heal my kids, and most of all - for my quirky, challenging, amazing kids, who make me realize every day that every day with them - even the hard ones - are a gift.

 

Hey, I suddenly feel rich!

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Yes. Just yesterday I took my 8 year old twins sledding. For their b'day I bought them 2 new sleds that took the form of snowmobiles. (awesome). They are quite sturdy and probable weigh 8 lbs. Watching them I was reminded again of their greatness...and how much they had emotionally grown.

 

My B (non-pandas), suffered years of internal anguish at the thought of putting a shirt on his hyper-sensitive body. Taking a shower and having to let water run down his face and body was almost too much to bear. His fingernails drove him crazy because he could feel the whites make contact with everything so he often ripped them off down to the quick, which inevitably caused him more pain. Loud sounds, learning to read in a very busy classroom? UGH.

 

My B has conquered and is well past most of his sensory issues. Yesterday I saw how those troubled days have served him so well. While other kids were crying and moaning about the difficulty of dragging a sled up the hill or a wipe out. B was not crying or moaning. He was thriving. I watched him drag a sled that was probably to heavy for him up the hill over and over again. I saw him fall, get up, and fall again without missing a beat. He was exhibiting emotional regulation, perseverance, and embracing the moment with such joy! I truly feel that B already has begun to have a working understanding of prioritizing life's challenges, and delegating what kind of emotional energy he is willing to invest. When one has had to deal with the fact that the appearance of a shirt can cripple one's self....what's the big deal about a little uphill grunt work and a couple of bumps on a cold snowy hill....

 

Both my kids are "can do" kids. They are tough as nails and have the ability to shine in ways that their peers their own age have not yet experienced. I see these traits emerging more and more in small, but big ways. While they both still have bumps in their days/roads, it has been said to me more then once by teachers, adults, etc....."Your children are going to make wonderful adults, you are not going to have to worry about them".

 

I personally feel it is there early life struggle's that they will have that to thank for.

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AMEN! Its the Yin and the Yang! How can one truly know the highs of Joy without having known the depths of depair. It gives perspective and creates a sense of gratitude. Gratitude builds character and empathy. I 100% agree with you and am choosing to see our struggle with PANDAS in this very same light. I am choosing to pay it forward. I have learned so much from reading on this forum and in the past week I have helped potentially three families seek the guidance of PANDAS friendly doctors for suspected cases.

 

Please know that when my son had (what we now know to be) his 1st flair, I lost 15lbs, started smoking cigarettes and got myself on zoloft. I was depressed, anxiety ridden and had fleeting thoughts of suicide. I know that seems very dramatic but when you have a normal healthy son one minute and the next he is taken from you, its similar to a kidnapping. I was distraught and knew I had to get my act together or none of us would survive this.

 

I stopped the cigarettes and am weaning off the zoloft. I started juicing and running again. I know my journey with PANDAS has just begun but I feel a little sense of control. Maybe I am just kidding myself but if I can help my son, then I can help so many others like him.

 

I plan to collaborate on on a book with a Mom of a son with TS. She has healed him naturally and I think the 2 perspectives will fit together nicely in a book about Tics and other neuropsyciatric symptoms (i.e. ADHD and OCD). For us two, the tics were the biggest symptom.

 

Bit circling back, this post is great and frankly with out seeing the positive side to this whole mess, how can anyone expect to survive?

Edited by cara615
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Not one for words but your words speak the truth. When I was at the hospital a year ago with my DD in the Neurology ward. That's when first hand I realized that I can deal with PANDAS. What I saw tore me apart. I know that it has been a blessing moving forward for me. So many people don't have a chance at a cure to helping their predicament. PANDAS will have a cure just have to find the right path.........................................

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My 18 year old son flaired when he was 6. He is now picking out colleges and has his pick due to his good grades and excellent ACT score. I haven't had to do one thing for him. He is complety independent and motivated. He wants to get his Masters in Molecular Biology so he can do medical research some day. I am so completely proud of this young man who at the age of 6 could not go outside, eat off of plates, or stop washing his hands because of his extreme fear of contamination (among other things). There are no outward signs of OCD, tics, or anxiety now. He is a wonderful, smart, sweet young man. Now, I'm working on his two younger siblings. I know I will get there with them too. The Lord is good.

 

Dedee

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