Chemar

[CSP]

Hi Chemar,

 

I was going tp PM you at some point, but thought others might benefit from your answers to my questions.

 

Do you have advice on when one gets to the piont of conceding with all this. When does one stop searching and acknowledge the facts, and stop grieving. I feel like this is a death, and I can't get over, "Where did my son go?"

 

I do see where time and prayer has made some things better, but am I looking at 2, 4, 6, more years of emotional suffering.

 

I thought maybe you could lead us through your journey of acceptance.

 

Does this come with watching your child overcome this, and you become a proud parent?

 

I'm afraid I will get to the piont of giving up, and not care as much because it is his life, and I can't change that fact.

 

If there is any valuable lesson you have learned I would love to hear your testimony.

 

Thanks, C.P.

[Chemar]

Hi CP

 

phew...that is a tough one to answer without much thought and trips along some painful memory lanes

 

I will give a short reply now and maybe post more on this in phases

 

basically I think the most important step for me came when it was clear my son had genetically inherited Tourette Syndrome. It wasnt an easy dx to accept but it did put things into a different perspective for me.

 

However, along the journey from meds through withdrawal from them...... and then all the testing for other stuff and the development of the treatments.......through it all it was then and still is now crystal clear that my son does MUCH MUCH better when he adheres to his healthy diet and supplements designed to address his deficiencies/needs, and when he is having his regular chiropracty and acupuncture.

 

so for us, even tho the acceptance came re his having TS that waxes and wanes in ways we cant always control, yet we have never just "given in" and it has been worth the continued effort to maintain his health at as optimal a level as we can.

 

I grieved most during the first year, as that was when the changes were most dramatic and also that is when the medications, NOT the TS, really did take my son away from me.

Once he was off the meds and we started seeing the glimmers of his old personality and humor and talents return...honestly, the tics didnt seem so important anymore. I had my son back, tics and all

 

 

and yes, watching how my son has overcome so many hurdles has made me so very proud of him

 

but if I am to be fully honest, my deepest acceptance came from another forum, when I would read of children with life threatening illnesses, or those seriously ill or severely deformed or impaired. It gave me a very different perspective on tics.

 

My son also deserves much credit for helping me. If he could accept it and rise above it and use it as a stepping stone, not a stumbling block............how could I keep holding him back with my continued fears and concerns!!

 

I think as caring parents we will always feel that sense of sorrow and concern for our kids when they have health challenges.

But if I can impart any advice. it would be to say please please please dont lose sight of your precious children while you are so focussed on "fixing" what is "wrong".

 

Does that mean I dont think one should strive for answers and treatments that can help...not at all! If anything I would emphasize the importance of that as we sure found just how much better it has made life for my son.

 

But I would just say remember they will be grown so fast and there is so much more to their lives than their tics. Dont lose one precious moment in appreciating them exactly as they are, and never lose a single opportunity to let them know just how much you value them. Dont let the tics cloud your vision. They are just tics............

 

I have posted before of the day I pulled to the side of the road and cried my heart out to God for my son. I firmly believe that day was a turning point for me. I stopped asking God "why me? why my son??" and rather just learned (slowly and painfully) to thank Him for the child He had blessed me with, trusting that He loved my son even more than I did.

 

 

 

I could write sooooooo much more but I think that is about enough from me for right now

 

((((((((((CP)))))))))))

Dont see it as years of emotional suffering lying ahead. It doesnt have to be. I know you have deep faith and so you will understand these words from one of my favorite songs

 

Blessed Be Your Name

In the land that is plentiful

Where Your streams of abundance flow

Blessed be Your name

 

Blessed Be Your name

When I'm found in the desert place

Though I walk through the wilderness

Blessed Be Your name

 

Every blessing You pour out

I'll turn back to praise

When the darkness closes in, Lord

Still I will say

 

Blessed be the name of the Lord

Blessed be Your name

Blessed be the name of the Lord

Blessed be Your glorious name

 

Blessed be Your name

When the sun's shining down on me

When the world's 'all as it should be'

Blessed be Your name

 

Blessed be Your name

On the road marked with suffering

Though there's pain in the offering

Blessed be Your name

 

Every blessing You pour out

I'll turn back to praise

When the darkness closes in, Lord

Still I will say

 

Blessed be the name of the Lord

Blessed be Your name

Blessed be the name of the Lord

Blessed be Your glorious name

 

Blessed be the name of the Lord

Blessed be Your name

Blessed be the name of the Lord

Blessed be Your glorious name

 

You give and take away

You give and take away

My heart will choose to say

Lord, blessed be Your name

 

Blessed be Your Name by Matt Redman

 

with acceptance comes peace

[myrose]

Hi CP

 

phew...that is a tough one to answer without much thought and trips along some painful memory lanes

 

I will give a short reply now and maybe post more on this in phases

 

basically I think the most important step for me came when it was clear my son had genetically inherited Tourette Syndrome. It wasnt an easy dx to accept but it did put things into a different perspective for me.

 

However, along the journey from meds through withdrawal from them...... and then all the testing for other stuff and the development of the treatments.......through it all it was then and still is now crystal clear that my son does MUCH MUCH better when he adheres to his healthy diet and supplements designed to address his deficiencies/needs, and when he is having his regular chiropracty and acupuncture.

 

so for us, even tho the acceptance came re his having TS that waxes and wanes in ways we cant always control, yet we have never just "given in" and it has been worth the continued effort to maintain his health at as optimal a level as we can.

 

I grieved most during the first year, as that was when the changes were most dramatic and also that is when the medications, NOT the TS, really did take my son away from me.

Once he was off the meds and we started seeing the glimmers of his old personality and humor and talents return...honestly, the tics didnt seem so important anymore. I had my son back, tics and all

 

 

and yes, watching how my son has overcome so many hurdles has made me so very proud of him

 

but if I am to be fully honest, my deepest acceptance came from another forum, when I would read of children with life threatening illnesses, or those seriously ill or severely deformed or impaired. It gave me a very different perspective on tics.

 

My son also deserves much credit for helping me. If he could accept it and rise above it and use it as a stepping stone, not a stumbling block............how could I keep holding him back with my continued fears and concerns!!

 

I think as caring parents we will always feel that sense of sorrow and concern for our kids when they have health challenges.

But if I can impart any advice. it would be to say please please please dont lose sight of your precious children while you are so focussed on "fixing" what is "wrong".

 

Does that mean I dont think one should strive for answers and treatments that can help...not at all! If anything I would emphasize the importance of that as we sure found just how much better it has made life for my son.

 

But I would just say remember they will be grown so fast and there is so much more to their lives than their tics. Dont lose one precious moment in appreciating them exactly as they are, and never lose a single opportunity to let them know just how much you value them. Dont let the tics cloud your vision. They are just tics............

 

I have posted before of the day I pulled to the side of the road and cried my heart out to God for my son. I firmly believe that day was a turning point for me. I stopped asking God "why me? why my son??" and rather just learned (slowly and painfully) to thank Him for the child He had blessed me with, trusting that He loved my son even more than I did.

 

 

 

I could write sooooooo much more but I think that is about enough from me for right now

 

((((((((((CP)))))))))))

Dont see it as years of emotional suffering lying ahead. It doesnt have to be. I know you have deep faith and so you will understand these words from one of my favorite songs

 

Blessed Be Your Name

In the land that is plentiful

Where Your streams of abundance flow

Blessed be Your name

 

Blessed Be Your name

When I'm found in the desert place

Though I walk through the wilderness

Blessed Be Your name

 

Every blessing You pour out

I'll turn back to praise

When the darkness closes in, Lord

Still I will say

 

Blessed be the name of the Lord

Blessed be Your name

Blessed be the name of the Lord

Blessed be Your glorious name

 

Blessed be Your name

When the sun's shining down on me

When the world's 'all as it should be'

Blessed be Your name

 

Blessed be Your name

On the road marked with suffering

Though there's pain in the offering

Blessed be Your name

 

Every blessing You pour out

I'll turn back to praise

When the darkness closes in, Lord

Still I will say

 

Blessed be the name of the Lord

Blessed be Your name

Blessed be the name of the Lord

Blessed be Your glorious name

 

Blessed be the name of the Lord

Blessed be Your name

Blessed be the name of the Lord

Blessed be Your glorious name

 

You give and take away

You give and take away

My heart will choose to say

Lord, blessed be Your name

 

Blessed be Your Name by Matt Redman

 

with acceptance comes peace

 

 

 

 

Two words Chemar..... "Thank You".... oh, and three more words.... GOD BLESS YOU!

[CarolynN]

Chemar,

 

That is such an amazing answer. That will help so many people! The song you referenced is one of my favorite songs too!

 

Carolyn N.

[CSP]

((((((((Chemar)))))))))

 

Thank you.

 

I had this picture in my head while I was reading your post. It was like all the moms and dads on this forum were walking and carrying a huge cross, and when one of us fell, you with your cross on one shoulder used your other hand to pick up the one that fell adjusted their cross on their shoulder and walked along side them until they were strong again. You kept doing this for anyone who needed you.

 

It was a beautiful display of charity, and that kind of charity sure does brighten the darkness.

 

God Bless you,

C.P.

[bmom]

Darn it! I keep thinking that I will hear from Lenny and Cum Passes that they have stopped worrying! Something like oh gosh- I guess time has healed all my worrying and things are great now! Wishful thinking I just hope there is a day that I look back and go, wow, all that worrying was for nothing and all is fine. I thought hopefully now that a year has passed. Now I just worry about the 10 -12 years as my son is 9. Then I will worry about my daughter having the same problems as she is only 3! Ughhhh!!! I guess I just figure that they are a little a head of the game then I and I am hoping that I will settle into some sort of resolution with this soon. Thanks for your kind words Chemar.

[CSP]

Bmom,

 

I hope i didn't sound like doom and gloom. I really am doing much much better. And my son is doing good. I feel frustrated with the lack of understanding about TS and PANDAS. I wonder has my son been misdiagnosed? I'm really glad Chemar said she had peace when she accepted TS as the dx, that is what I needed from her, because our sons are similar, except mine has allergies. I feel once I stop getting my hopes up that, oh if only I try this, or that, he will be tic free.

 

And it drives me crazy how some things that are really good for the body or brain effect our children negitatively, like fish oil.

The waxing and waning really tests me. I don't know about others, but that is what causes the ups and downs with me.

 

Everything on this forum is wonderful info, and I 'm so glad people find answers for their child. I just need to get to the point where I accept TS as the dx and stop looking for the "Cure."

 

I keep thinking about how Jesus cures the hemorraging woman, then I remind myself, C.P. she did suffer for 12 years.

 

God Bless

[lmcgill]

Darn it! I keep thinking that I will hear from Lenny and Cum Passes that they have stopped worrying! Something like oh gosh- I guess time has healed all my worrying and things are great now! Wishful thinking I just hope there is a day that I look back and go, wow, all that worrying was for nothing and all is fine. I thought hopefully now that a year has passed. Now I just worry about the 10 -12 years as my son is 9. Then I will worry about my daughter having the same problems as she is only 3! Ughhhh!!! I guess I just figure that they are a little a head of the game then I and I am hoping that I will settle into some sort of resolution with this soon. Thanks for your kind words Chemar.

 

Intimidation works, by the way, what does the "b" in bmom actually stand for? Perhaps you can tell me so I don't trying filling in the rest of the letters myself!!!

My prayer lately has been to replace my worry thanksgiving for a wonderful son and his twin sister that are spectacular children. Our son besides tics has aortic stennosis, a much bigger issue in his life then tics, yet I feel he is so looked after in this area by Dr's that know what they are doing that I tend to not worry so much about when he will need open heart surgery. The tics are something I can't seem to figure out. The last couple days have been great for him. I seem to be less anxious as well.

Thanks for your quote, it lifted me just a little higher. And Chemar is right, after spending one day at Childrens Hospital, you tend to be hard on yourself for wallowing in so much self pity over "tics"!

Lenny

[bmom]

Well, I hope for you both the best. I have a friend who has an autistic son. She says she was ready for a break down 4 years ago, but is fine pretty much every day now. I have come to realize now that my son does not seem to have the problem anymore as he thinks nothing of the tics and really doesn't seem to have any very often. So I guess it is me that is having trouble with it. I guess if my friend is fine now and her son is autistic, then I have to just get over it too. Oh well, just venting. .