Wednesday, November 25, 2009


There are so many things to be thankful for this thanksgiving - our family, the security and safety of our home, the beautiful people who have helped or offered support over the last few months, and how in this economy, work keeps coming in for me. What great things to be thankful for. But as always having a child with a disability (now times two disabilities), puts a whole new spin on things. The thing that I am most thankful for today is for the great EEG that Quinn had during her appointment. The neurologist informed us that it was "almost" normal. Not sure what "almost" means and for a split second I was thinking of becoming a smart alec and say something, but I took a deep breath and considered this a blessing. We might be ok. ACTH and the drama surrounding this treatment might have actually done the trick - it might have been the best decision we made in our lives. No, scratch that, having Quinn is the best decision of our lives because without that none of the rest would be possible. I am optimistic, the neurologist is optimistic, I think Neal is optimistic, but we don't know for sure if ACTH is the trick until she stops the medication. But for now I am SO THANKFUL.

The last thing you ever want to do is to knowingly and intentionally cause your child pain. Sure there are immunization shots and stuff like that, but those don't compare to the last weeks and all this hoopla surrounding ACTH. It is a difficult thing to decide to do this to your child. Plus there are no guarantees - it might not work at all. This was one tough decision. It is a decision that parents all around the world have to make every day. But then again, there are people who don't get to make this decision because of the cost or availability. All of this just symbolizes how thankful we should be. Quinn was able to try this treatment, we were able to have the strength to get through hell, the boys are able to have their lives back right now, and it is actually working so far. Some people don't even get any or all of what we have.

In addition, I have been BLESSED to meet such wonderful people on the internet who share this experience or who don't but have grown to love Quinn. They come from the DS and/or IS community and have been a great support. This is all something to be thankful. I also have wonderful friends and family who have supported us through this through by sending loving emails, phone calls, or showing in just little ways that they care. For this I am so thankful.

The list could go on and on. I just have to say I believe that every other Thanksgiving I was superficial in how I approached this holiday. Sure I would be thankful for the "usual" things, but I didn't feel it totally in my heart. Although this has been rough (and I still hate IS, but to clarify not DS), I get the meaning of this experience. I feel thankful in my heart - deeper than I ever did before. It is just there and I know it comes directly from my beautiful girl who at this time is seizure-free.

I was looking around on youtube again (I know, I am crazy with that) and I found another clip from Following Ian. I must find out when that movie comes out! I watch the other clip (the hospital clip) over and over. Surprisingly I don't cry, I just feel connected.



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  2. Karyn,
    I am thankful to you for sharing the journey you and your family are on. Thank you for your openness and for taking us on the journey with you. Quinn (and Riley and Aidan) is so lucky to have you as a mom (and Neal as a dad). Happy Thanksgiving! (Oh and I do read my posts) :) Wendy

  3. Karyn,

    Came here after reading your response to the new mom on downsyn whose son has Lennox-Gastaut. I'm so glad to hear things are going well for little Quinn. Prayers that she continues to respond well to treatment.

    And I know Ian! He and his family live here in Minneapolis. I'll have to e-mail his mom to see when his dad is going to finish the movie about Ian.

    Happy Thanksgiving!

    Ann Bremer (Annieo from downsyn)

  4. Tom's blog was the first blog I ever followed. I may have sent this to you already, but if not, here's where you can find him and his crew: