Not For The Weak

You know, I went back and forth about sharing this blog, because feeling that you have an "audience"  (however small) stays in the back of your mind when you're writing.  Sometimes, I want more people to read it, so they can be up to date on what we're going through.  But other times, I don't want you to be reading this because I don't have anything good to report, and it will make you sad.  I'm torn between needing to pour my heart out, but scared to let anyone else know that my heart is broken.

So if you're looking for something happier to read, maybe come back in two years when we'll be further along in this process, or at least have gotten better at some of these things which currently feel impossibly hard.

Tonight I tried and failed to give Phoebe her shot and it was terrible for everyone, though fortunately Jason held it together while I did not.  

Based on what I've read, I've been talking to Phoebe (and Cordelia) about how we are going to do the shot just very briefly, over the last few days.  I don't know... just hoping to "normalize" it in a "yup, we have to do a shot and it's a little poke, but then it's all done and the good medicine is going to help fight the arthritis."  And that after the shot we'd do another ice cream party for everyone.  I've been telling Phoebe how brave she is and that she is an arthritis warrior and we do little family cheers for her.  I was feeling pretty good about it.  We've been playing with the buzzy bee.  Cordelia even picked some new bandaids for Phoebe--they have princesses on them.  

Anyway, we prepped the shot, but Phoebe still knew what was going on faster than I'd like because she saw Jason had gloves on.  (I wore gloves while cleaning in the kitchen earlier in the week, and she definitely got nervous, seeing them.  This girl is so smart.)  Even with everything prepped ahead of time (alcohol pad, gauze, band aid already opened), we are still not fast, like a nurse would be.  

But I am not a nurse, which was really clear tonight.  I wanted to do the shot.  It is very important to me that both of us have to do it, so it's not just Jason having to be the "bad guy" every week.   But I totally failed. 

Phoebe was crying and Jason held her and I tried to stick her, but I didn't have enough force.  I knew the needle didn't go in far enough to inject the methotrexate, though it was enough to draw blood. So I stuck her again, but same problem.   Phoebe was screaming and I just couldn't do it again.  I gave Jason the syringe and picked her up and we restaged.  Jason had to readjust the shot, so I stepped outside on the porch with Phoebe for a second, which usually calms her and it did help.  I told her I was so sorry I couldn't do the shot right.  Then I took her back in and she immediately was crying again and I held her and Jason did the shot.  I couldn't look, I started to cry too, while Cordelia hovered around in the living room, no doubt horribly stressed out by this whole process.  I wish I could have held it together for her sake as much as Phoebe's, I feel like this just traumatized everyone.  I managed to tell her, "I'm just so sad we have to give Phoebe shots," but how hard must it be to see your mommy crying?  

We had our ice cream party, and I tried to get it together, but basically was choking back tears the rest of hour before bedtime.  Phoebe pointed at me several times and did her "Ahehehehe" fake-crying sound that she does whenever she sees Cordelia crying, her way of acknowledging she understands what is happening.  I went off to cry in the bedroom, but Phoebe, of course was following to find me within moments.  (Jason frequently calls her the "Mama-seeking Missile".)   She saw I was crying more and said "ahehehe" and then climbed up on the bed next to me and gave me the BIGGEST hug, putting both her arms around my neck and squeezing me really tight.  Like, an even better hug than she normally knows how to give.  How sad is it that my 1 year old, who got stuck 3 times tonight because of my inability to do the shot right, is the one who is comforting ME at the end of the night?  It's just terrible in every way.

Then, we had to do both kinds of eyedrops!  I'm sorry, Phoebe.  I'm so sorry.  She passed out instantly for once though, as lately she has been incredibly restless when falling asleep or having trouble going into a deep sleep.

Cordelia on the other hand was melting down over having to get ready for bed.  I know how badly she needs sleep, but tonight was so stressful, I let her have a bedtime re-do and go play for five more minutes so that she wouldn't go to sleep feeling miserable.  

I didn't even go into the other hard parts of the day.... The morning started with Cordelia falling apart as we tried to leave the house because she just wants to stay home and play legos.  For the first time since that missed Motrin experience, I forgot to give Phoebe her Naproxen this morning (though we did do eye drops!).  Thankfully, Phoebe was still able to walk and she had a dose of motrin when she got to Meme's house.

It was a rainy day at school, where I spent much of the time helping out in one of our more challenging classrooms... and I feel terrible because I see how much they are struggling and I don't know how to solve their problems.... 

Phoebe's nap schedule is all messed up because of stupid goddamn day light savings time, so she is only doing one nap, and much earlier in the day..... leaving her awake for like 6 hours until bedtime, which is really too exhausting for her.  She starts getting really tired after 4pm but that's too late for her to take a nap.  

Jason got home after 7 because he went to the pharmacy for us..... (Needed more eydrops.  And to refill Naproxen, which was formerly $289/30 day supply, but is now also $0, thanks insurance.)  

And to top it off, I've just read Stephen Hawkings died.  Well, that just blows.

Sigh.

I know how hard this is.  I know I am not a nurse, who gives shots to hundreds of people.  I'm just a mommy learning how to do it on her own baby.  Phoebe is the strongest, bravest person I know, I just have to try and be as strong and brave as her.  I haven't actually broken down too often through the last month (yes, it's only been a month today since the MRI!).... usually it's just driving alone in my car and a song will make me feel everything too much.    

Tomorrow Dr. B is squeezing us in, to evaluate Phoebe's hand.  We'll see what she recommends. 

Here are some photos from our outside play today as your consolation prize for another depressing post.  Good night.

She climbed to the top herself!  She still can't figure out how to slide down though.