FOR ALL OF YOU...

[Phasmid]

Like I'm sure every single one of you have experienced, I have had an assortment of emotions, feelings, thoughts. One of my more recent upwellings has been anger at God for giving me something bigger than I can handle (my child's issues). As a believer, I was continually directed to a scripture which says "God will not give you anything that you cannot handle." I believed this for most of the past several years. However, the past 9 months I have felt different. I have felt that this disorder IS in fact something that I cannot handle.

 

That brings me to today. I am still grappling with this on an emotional/spiritual level. HOWEVER, the fact that I have been blessed with the support of members of this forum brought me to a different place today. That is a feeling that God must have given this to those He truly felt COULD handle it, for the purpose of helping children on a larger scale.

So, however we can, we must stay strong, and continue on until more physicians, more school staff, more psychologists, more friends, neighbors, etc. are informed and actively on board to help all children who suffer this.

 

Thanks, always, to all of you who help me get through this. I wish I was more able to help those of you who reach out in desperation on this forum as well. I do when I can.

 

Thanks, and hugs to all...

[SarahJane]

I've been guilty of saying that I wish God didn't trust me so much. I do feel like there's something I'm supposed to do with all this information that's in my head about PANDAS. Not sure what yet tho'. And I do look forward to being able to hold my son up as a success story (hopefully soon!) as I educate others. But I do feel like I have to get to the other side of things before I can help others...to try to do it now while I'm in the middle of it is too much. I can educate those who need to know in my immediate vicinity right now & focus on finding the others in the near future. Part of PANDAS was feeling so alone/confused/etc... & then realizing that I wasn't the only one going thru all this when I found this forum...it was a big weight lifted. But it's still so sad that we have so much company & so many out there who feel alone because they haven't found us yet. I do feel that great good is going to come from all this suffering...and the breakthroughs will be likely be BIG & far-reaching. And if I'm supposed to be a part of it somehow, then so be it...and I hope I do my part well.

 

But I'll send a HUG your way Phasmid & out to all the others on here too. Here's to all the PANDAS kids & PANDAS parents! Cheers!

[peglem]

Oh, I have so been there...God and I have been like an old married couple- and I was pretty upset with Him for several years. I really don't know (yet) why this path has been chosen for us, but I have gotten to the point where (most of the time) I accept that if this is what He wants for us, then He must know what's best and trust that there's a great big something wonderful at the end of the journey. When I forget that (usually when things start going well), stuff gets worse.

But, I pray for all us PANDAS/PITAND families out there, and the physicians who help (and when I'm feeling REALLY kind, for the ones who don't help). And I thank God for all my cyber support!

[GatsMom]

Like I'm sure every single one of you have experienced, I have had an assortment of emotions, feelings, thoughts. One of my more recent upwellings has been anger at God for giving me something bigger than I can handle (my child's issues). As a believer, I was continually directed to a scripture which says "God will not give you anything that you cannot handle." I believed this for most of the past several years. However, the past 9 months I have felt different. I have felt that this disorder IS in fact something that I cannot handle.

 

That brings me to today. I am still grappling with this on an emotional/spiritual level. HOWEVER, the fact that I have been blessed with the support of members of this forum brought me to a different place today. That is a feeling that God must have given this to those He truly felt COULD handle it, for the purpose of helping children on a larger scale.

So, however we can, we must stay strong, and continue on until more physicians, more school staff, more psychologists, more friends, neighbors, etc. are informed and actively on board to help all children who suffer this.

 

Thanks, always, to all of you who help me get through this. I wish I was more able to help those of you who reach out in desperation on this forum as well. I do when I can.

 

Thanks, and hugs to all...

 

I sure needed to read this...especially this week. Thanks you great moms!

[kimballot]

Phasmid - I have truly been where you are and I am sure I will be there again. Today, though I am going to rejoice because we have an article that was posted from Fox News that talks about PANDAS and says that every child with OCD should get a strep test and that being aggressive with antibiotics in this case is justified. I am also going to rejoice because someone posted an August 2010 issue of the Journal of Child and Adolescent Psychopharmacologyjournal that focused on OCD and had TWO articles on PANDAS in it - and one of those articles was by Murphy, Leckman and Kurlan, which is nearly the PANDAS version of Bill Clinton and George W Bush agreeing on something (Now if Swedo and Kurlan agreed - well than that would be a miracle!). And, like you, I am going to rejoice because I found this forum and I am no longer alone with this odd set of problems.

[Priscilla]

Thank you for this post. Several weeks ago I was also in desparation, crying out to God, Why is he doing this to us? I think most, if not all of us have been there. I have been through many other trials and tribulations in my life since 9 yrs old, and never have I felt forsaken until this one. I have been in that pit. I am happy to say that the light is starting to shine on us, and I am finding some clarity. I truly believe in finding a lesson in every struggle. What I am finding is that this life change has actually got a pretty positive side to it for our family. Our patience has tripled, our faith continues to strengthen (and is focused on God, not in our medical system), and each and every good moment seems to make me stop and cherish the moment. I have learned to truly live one day at a time. I even had a personal experience with God telling me it was all going to be ok, just trust him. I feel there are angels with us as well. After my experience, I did just that, let go, and let God. I have even stopped all meds/ supplements over a month ago. We have finished our course of IVIG and we are doing well. In some ways 110%, other ways about 80-90%. I feel that God is using me, and molding my daughter for something special. I am fortunate to also have Joseph as a nurse who I feel God sent to us by NO MISTAKE- He radiates his love for God and has the smile of an angel. Just what we needed to give us comfort for the IVIG process. I feel God wants exactly what is going on in this post. His children uniting in his love to help each other, I feel this makes him proud. And as for our children, like Joseph told me, when God wants to make a perfect person ... he works as the artist, pounding the clay, molding and sculpting, this pounding and moulding can be very painful, but the end result is a true work of art, designed for God purposes. I wait in anticipation, with certainty, that one day, I will be staring at my DD, overwhelmed with pride, viewing the work of art,and all of this will make sense.. May God bless you all greatly....

[SarahJane]

Here's something I found way back when I was pregnant (ds will be 7 in Feb '11). This passage lends itself perfectly to this discussion. It speaks to us the parents & to our babies and shows His infinite patience.

 

 

When God wants something great done in the world,

He doesn’t dispatch a legion of avenging angels,

Neither does He call forth a whirlwind nor

ignite volcanic fireworks:

No commandeering of troops into battle nor discharging

zealous crusaders to holy causes;

He does not orchestrate the burst and boom of thunder nor

display His fiery arrows’ majesty across the sky to

bring His purpose to pass.

 

When God wants something done in this world…

He sends a baby – then He waits.

 

-Unknown

[aidansmom]

I also have had the same thoughts. I had actually asked God to only let me have another child if I was capable of handling it as it had been a tough first year with my second child for sleep, etc and I wasn't sure if I could handle a third. I happened to say this prayer on the very night Aidan was conceived. So when I was pregnant I believed that this was God's answer to that prayer and that I was receiving this child because God's answer was that I could handle it. Little did I know what he had in store for me - I guess he thought I could handle a a whole lot more than what I thought I could. There were many times I have been angry at God and I say "You said that I can handle it, how come I don't feel like I can't?" I also have felt like there is a reason for this but we will not fully understand it until later.

 

I have a story that is something that I hold onto that helps me if I remember it. My older son Sam was 2 and Aidan was still a baby. We did not know the difficult journey that we would have with Aidan in the future. Sam looked at me one morning and said "Aidan is the key." I thought this was a very strange statement for a 2 year old so I asked "What?" and he repeated "Aidan is the key." I did not understand so I followed up with "The key to what?" Sam simply answered by pointing his finger straight up in the air - I believe he was pointing to heaven. Wow - it is hard to believe that that he actually had said this - where would that have come from. I believe that Aidan is the key as well as all of your children. (Although some days when I lose patient or feel like I can't parent him I think I am heading straight the other way!) Aidan seems to be the first one to forgive my weaknesses here. It is about the love we share with others here and when you have a PANDAS/PITAND child our capacity to love is stretched beyond anything we we thought we had to give.

[EmersonAilidh]

I'm running out the door as I post this but thank YOU! You were one of the first people to talk to me on this forum. You have helped immensely.

[momcap]

Thank you so much for this post. This journey is such a rollercoaster. I hit rock bottom last week, and just wanted off the ride. On Tuesday I got back labs that DS7's strep antibodies are even higher. On Wednesday he was sent home from school for tearing his work sheets and throwing his chair. On Thursday he woke up with his pupils so dilated that his eyes were black (they are normally light blue). He was scary. At school he kicked over his desk and ran away and hid. Thursday night I sat through his parent-teacher interview and listened to the teacher tell me what a horrible boy he is and how he is so mean, and how he's failing everything because he's too defiant to do any work. She actually said, "He will never be like you and me." Talk about rock bottom. Why God? Why him? Why me? Why this?

 

I don't know if I can link anything here, but I'm going to try. Because at that rock bottom place I came across this song and it touched me and kept me going. This thread sounds like an appropriate place to share it. So I hope this is okay.

 

 

And in the end I believe the teacher is right. He will NEVER be like you and me, because he is being forced to learn some very hard lessons so early in life. He will be stronger, deeper, and better some day for all of this. That is the hope I cling to.

 

One day at a time...

[Fixit]

He will NEVER be like you and me, because he is being forced to learn some very hard lessons so early in life. He will be stronger, deeper, and better some day for all of this.

 

 

You are a thousand % correct!

[emmalily]

He will NEVER be like you and me, because he is being forced to learn some very hard lessons so early in life. He will be stronger, deeper, and better some day for all of this.

 

 

You are a thousand % correct!

 

Just wanted to chime in and say that I wouldn't trade having PANDAS for the world. It is incredibly difficult, scary, and simply inconvenient a lot of the time, and I often wish my life would be easier--but at the end of the day this is my life and I do love it, PANDAS included. I know so many of you wonder what this is doing to your children, so I just want to say that momcap is right, it's a learning experience and that comes with good things, too.