things I should be doing v what I’m really doing

After spending the last two nights at Egleston, Lars is now on duty and I’m at home.  Jack went next door to play and the house is quiet, which is nice.  It’s also a complete disaster which is not nice.  It’s a complete mess, the refrigerator is almost empty, the laundry baskets are overflowing.  And all I want to do is take a nap.  So I’m compromising.  I’m not napping.  But I’m not cleaning either.  I’m surfing.  And feeling guilty.

I’m having one of those psychically down days, due in no small part to the cool rainy weather.  But it’s more than that.  During one of her previous discharges, I wrote about my fears of living with a kid on steroids, plus a whole bunch of other meds.  Now, we will still have that, but we will be administering several of these drugs intraveinously.  I know it’s bothering her…she’s told me over and over how scared she feels about the PICC line (what if something gets messed up?) and she is frustrated and angry (“I just want to be NORMAL”).  It’s heartbreaking to hear that.  

I want her to be normal too.  I don’t want to have to allow an extra 30 minutes before school to let her have her IV meds.  I don’t want to have to go through a huge hassle to protect her arm from getting wet before every shower.  I don’t want to have to take her to the doctor every week for a urine test, and feel anxious while we wait for the numbers.

We had planned to put her on the swim team this summer, but it occurs to me, she might not be able to swim at all.  Can you imagine?  She signed up for camp, but I don’t know what we’ll do since they go swimming and canoeing every day. Sigh.

Thanks for tolerating my pity party.

5 thoughts on “things I should be doing v what I’m really doing

  1. Oh sweetie, you can party in my email box any time you want. I can imagine that sometimes you feel you can’t let it out at home, at work or anywhere else. I mean, how dare you – you think? Lars feels the same way, Meri is actually going through all of this, how could you burden them even more. I can imagine the feelings of guilt and frustration and some feelings that I’m pretty sure you think make you a horrible mom and wife. Well, ummm no, they just make you very very human, and the wonderful person you are. If you ever want to let off steam, and write to someone who is totally and wholly unjudgemental, know that you can write to me. I think I get how you are feeling.

    Beth, take care of yourself too.

    I’m never more than an email away.


  2. Beth,
    Ed is currently going through chemotheraphy and has a port on his chest which needs to be covered up when he takes a shower, so I am using Glad’s Press N Seal to cover it. It keeps the water out and it doesn’t hurt to remove when he’s finished.
    As always, you’re in our thoughts and prayers!!

  3. Hello Olssons!

    My son Bo is in Meredith’s class at Roswell North Elem. He wanted to know if he could bring Meredith and the rest of the family dinner this week? Does Thursday or Friday work for you? He speaks of her often and wants to do something to help.

    Please let me know your likes/dislikes and we will head over to see you Friday after the kids are off the bus.


    Liz Rains

  4. Liz & Lars,
    Girl you can have right to feel the way you do, all of you guys have had a hell of a time. Please call anytime you need anything at all. I’ll come running!

  5. Press and seal, that’s brilliant. Isn’t the Internet amazing sometimes?

    Beth, you have every right to feel the way you do and more. Don’t beat up on yourself, ok?

    Hugs to the family.

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