Hope, it isn’t always pretty.

Last night, as I was getting Monkey ready for bed, he looked me right in the eye and his face lit up. It was one of those perfect moments when I just knew that he loves and trusts me implicitly. Naturally, I burst into tears and after putting him down for the night I spent hours crying. Why?

Today, after much agonizing, we are starting C’s Celexa washout period. And so it begins…3 weeks of gradually reduced anxiety medication, 4 weeks of no anxiety medication and then we see if we qualify for the STX209 trial. There is no guarantee that he will qualify. If he doesn’t, that is 7 weeks of heightened anxiety for no benefit to anyone. If he does qualify, it will mean 4 1/2 months of … well … we don’t know. Maybe placebo, maybe partial doses of the study drug, maybe a full dose.

Why are we doing this? Hope. Hope that this will help him more than the Celexa has. Hope that this will help a whole lot of other kids someday. Sometimes hope is a beautiful thing and sometimes hope is swollen eyes and an aching heart. Sometimes hope is a desperate decision to just do it, even when you aren’t sure you want to.

Right now the only thing I am sure of is that I am so fucking tired of having to make decisions like this.

If you want to read more details about what is involved in the STX209 trial, read this post from last September:

STX209 – You’ve heard of it, right?

 

21 thoughts on “Hope, it isn’t always pretty.

  • August 12, 2012 at 1:16 pm
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    will be praying it all works out! praying for caleb as he goes off the meds.

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  • August 12, 2012 at 1:18 pm
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    no Matter what we here in NH are with you in your expeditions through decision making of our little Monkey’s life of meds or no meds. And also your anxieties as you all face the world of the unknown.

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  • August 12, 2012 at 1:29 pm
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    My clients always ask me ‘when will it get easier?’ I never know what to say….because so often I wonder the same.exact.thing…<3 you….

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  • August 12, 2012 at 1:30 pm
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    I hope he gets onto the trial Melissa, and that the next 7 weeks are much less awful than you fear. (((hug))) from across the Pond.

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  • August 12, 2012 at 1:30 pm
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    It’s a leap, regardless of the outcome – which I am praying is amazing, C will still unconditionally love and trust you.
    I won’t argue about it sucking because it does. But if you don’t take that leap, the wonder and regret will always be worse.
    Love you.

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  • August 12, 2012 at 1:33 pm
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    It won’t…that’s the crappy truth…it will never be easy to make decisions like this for people you love. AND it shouldn’t be easy. But if someone has to do it…I want it to be someone who loves him so much it hurts… Ugh. Don’t tell them that KQ 😉

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  • August 12, 2012 at 1:40 pm
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    Will be sending prayers your way, Melissa, for your family these next few months…He is so lucky to have you as his mommy!!

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  • August 12, 2012 at 1:50 pm
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    Thank you for being brave enough to admit that you’re tired of making the decisions. I am, too, but it’s not something that’s usually OK to say. You’ll make it through, it may be rough but you’re stronger…

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  • August 12, 2012 at 2:05 pm
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    Some times is all you have to rely on. For me even though Fragile X hasn’t completely effected it still plays a role in my life especially when it comes to baby’s. I take my Zyprexa every night for anxiety or whatever. I hope to be off it someday too. Of course I will have take my Thyroid medication for the rest of my life. I really hope your son accomplishes a lot through it all.

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  • August 12, 2012 at 2:14 pm
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    Well, Laurie, people are just going to have to accept the fact that some of this plain sucks. I certainly don’t see anyone lining up for a ride on this train. We can be tired and angry and sick of it all and STILL love our kids as unconditionally as any other parent…which sort of makes us the most amazing kind of super parent there is 😉

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  • August 12, 2012 at 2:26 pm
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    I hope things go easy for all of you and that he gets into study program.

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  • August 12, 2012 at 2:54 pm
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    I know I am only an outsider looking in. I am privileged and honored to be friends with you and so many amazing FX parents all of which I met through you so although it sucks just know you are not alone. You have an amazing support system of friends and family who whether in the FX community or not are cheering you and E on every step of the way! Someday Monkey will look back and know (if he doesn’t already) how awesome you are and how everything you and E do you do for him. xoxoxo

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  • August 12, 2012 at 4:06 pm
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    I know how much this scares you, I am also on this constant roller. I hope the weeks go by fast with as much wine in them as you can possibly get, jk. Love you guys and I’ll be thinking of you.

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  • August 12, 2012 at 5:03 pm
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    I believe if you have faith it will lead you to hope….this is what drives us to get up everyday. There are no guarantees in anyone’s life…..with one exception….our special kids love us unconditionally, and that is enough <3

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  • August 12, 2012 at 5:10 pm
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    Yes you have every right to feel what you feel. As for me I felt a lot of pain, and anger too. It really hurt me to think that I could still have a fifty fifty chance still of passing on Fragile X, but I feel like it’s okay after so many years. I see other people with children some times, and I think why can’t it be me, but maybe in some respects it is better that way. I feel some times I want to try some thing else myself, but I can’t afford to. So I stick with what I have been doing for the last few years. I feel like if I could stop taking the Zyprexa I would even though I am pretty much on the lowest dose there is for it at 2.5. Which is nothing. Anyway, yes some times hope is all you have, and I feel like holding on to hope has gotten me though so much also. So don’t give up either way. Sorry, I just thought I would let you know something else.

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  • August 13, 2012 at 11:13 am
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    Hope really is a beautiful thing. I hope you’ll be be able to keep us updated on things. We’re hoping to qualify for a trial where we live. Having 3 with FX will make for an interesting time on the trial if they all get to do it. I won’t be getting off my Paxil anytime soon (hopefully one day though).

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    • August 13, 2012 at 12:59 pm
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      Oh, you can rest assured you will get every agonized update on the process. Part of the screening involves blood samples…that right there is enough to send me hyperventilating!

      Reply

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