I hate seizures. I hate the medicines that aren't working. I hate watching Luke cry as they poke him with needles and inflict pain to determine if he's having a seizure. I hate watching him stumble and slur his words looking like he should look on his 21st birthday, not at 4. I hate listening to the baby crying down the hall at the beginning of this journey. I hate feeling like I'm always, always waiting for the worst to happen and it keeps happening. I hate that while I'm waiting, I always feel like a crazy person. I hate being a big fat whiner when there are other precious kids who have it so much worse. I hate being away from Ben...again. I hate that I'm still finding my voice and my strength to stand up for what I think is happening to or what is necessary for Luke. I hate missing the second to last day of school with my first graders and I hate that I'm not going to be with Luke on Tuesday so I can be with my first graders on their last day. I hate not knowing how he is feeling or if he is in pain. I hate that I feel so much hate. Whew. Thanks for letting me get that off my chest.
I love, though, so much. I love our families and friends who are always willing to listen and pitch in. I love new friends who are helping to make sure Ben feels special. I love my little boy who called the tech a booty butt (not deserved but I enjoyed the spunk!) and blew raspberries at her. I love the nurses and doctors who are trying their darnedest to help our family. I love that we found out that we might be able to get a hospital pulse ox monitor because his oxygen levels drop during his seizures which might give us a little peace of mind at night. I love my friend who is yet again going to make sure my classroom is up and running for the substitute tomorrow. I love the texts and emails and support that always makes me feel like we're not in this alone. I love the friends I have made because of Luke's diagnosis. I love my husband who is with me every step of the way. I love my boys who are going through life calling each other names and laughing and making arm pit farts. I love those things and so much more.
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| Since Luke has been so unsteady lately we've been holding his hand on the stairs. Ben now insists that it is HIS job to get Luke down safely. |
Hopefully we'll go home tomorrow. Hopefully we'll add a new medicine so I'll have renewed hope that this ugly stage is behind us. We'll meet our eptologist officially in a few weeks. Let's all hope that the past seven months can be the past and our future doesn't keep going this way.
Thanks for listening. Love from SLCH..... again.
My heart goes out to your family. It sounds impossibly hard. I hope the meds will work!
ReplyDeleteI hate that you and your family have to go through this. I hate that it causes you so many tears, so much heartache, and so much fear. I hate that your baby Luke has to suffer through it. I hate that there is any possibility Ben has to feel less because of the time you can't spend with him. I hate that I can't be right there with you holding your hand through it all. But I do love you. I love your strength, your courage and all those things you don't believe you have "enough" of, because you do. I continue to pray for you all and think of you every single day. Hugs, kisses, and as much love as I could possibly have for a little sister are coming across the miles to you.
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