Day 73 (May 28)
Today was yet another outside day. We spent almost all of it in Central Park. While Aunt Bea sat with Haley on a nearby hillside, Auntie D, Anna and I hit the kiddie amusement park. but after we were through with the rides, we joined Aunt Bea, Shaya and Haley. Although it wasn’t on anyone else’s mind (why should it have been), the risk of Haley contacting the dirt either directly or through one of us was high and dangerous). Dirt has fungi and mold, and she’s not allowed really to be in contact. So you wash yourself off, you wash Anna off before you two touch Haley. But is it good enough?
And you look at Haley’s stroller, and it’s covered in dust and pollen, and you know she’s been breathing it in. And you wonder if she suddenly feels warm to you. It was a lovely day but still the major part of it was spent worrying about what may have been contracted and wishing there was a portable sink and soap, because purell doesn’t seem good enough right now.
Guests were: Aunt Bea, Auntie D, and Shaya.
Funny moment of the day was when Anna ate cotton candy for the first time.
Dear Tansy,
I know it’s exhausting, but thank goodness for Haley that she has a mom who is looking out for her 24/7. What I would give to have been a butterfly floating by while Miss Anna got her first taste of the world’s best sweet and sticky stuff! Prayers still flowing your way…xxoo Cristina
May 29th, 2007 | #
Dear Tansy,
We were away for Shavuot, then Tamar and I went to Chicago and Yellow Springs, Ohio to visit cousins and my mom’s home town, so I had a lot of posts to catch up on when we got back. I’m VERY excited about the Tcells and Bcells and am hoping that you will be returning to DC in the next month. You are almost 3/4ths of the way through the 100 day mark!! I know that there is still the important year mark to negotiate, but it’s nice to see milestones about to pass. I haven’t read all the previous comments, so forgive me for surely repeating, but I know Haley will learn how to socialize, perhaps in different ways and in different times, but it will all happen in a good way. First, she has her fabulous and social sister Anna, which is an advantage she has over all other children. Haley also socializes extremely well with all of the adults she comes in contact with (part-time babysitter excepted, but maybe this will improve). She has a lot more contact with adults than many young children have, and these interactions are very stimulating (when they aren’t related to poking her with needles). All of your descriptions of Haley indicate to me that she is a very happy, giggly, social person, and whatever deprivation she may experience now, she will quickly catch up on once she can re-enter the world of germs. You have a lot of real things to worry about, I know, and I am a professional worrier, so I empathize, but I really think this will all work out fine.
Sending sanitized hugs and kisses your way (also continued tefillot),
LIndsay, Norm and Tamar
May 29th, 2007 | #
Can you talk to a doctor you trust to get a more secure sense of boundaries? If Haley needed to be in a 100% sterile environment, presumably she’d be in a sterile ward in the hospital. So it sounds like the task is managing un-sterility, and you seem to be doing an amazing job of that. I know from very, very limited experience that it can be difficult to get the information you need from a doctor during a visit or a clinic. Is there someone else you can talk to, like your sister or another friend, who can say, “Here’s the standard of care we are talking about: no sitting on the dirt, but yes to being out in the world without a surgical mask or stroller cover,” or something like that? It must be very tough to have your joy at having a happy day out with the girls so clouded by the fear of exposure.
May 29th, 2007 | #
Tansy, I think that you might be going up and down day by day in an intensely normal fashion. I reread you blogs day by day and the pattern of your feelings has been fairly consistant as the situation normalizes. On any given day in which you feel happy and confident, your mood then swings to the anxious and doubting side. I think that your bumpy path is ok, just emotionally draining. The dips are not as deep and the rises are lasting longer and reaching more stability.
Please forgive me Tansy. I do not want to appear preachy in any way. In fact your emotional pathway is extremely familiar to me with health issues that I’ve faced for so many years. At some points I feel like I am doing everything possible to live ‘normally’ and productivly despite the limitations that MS presents. Other times I feel depressed and dispondant about the inevitable decline that the disease presents and annoyed at things that I haven’t accomplished or finished on any given day.
Try, if you can to allow yourself the insecurity of never having total control. Remember the many, many obstacles through which you, Haley and the family have already gone. And most important… have faith. I repeat what I’ve written a few times, God is on your side. And surely the collective prayers of your universe of family and friends is reaching God’s ear.
Hang in there. To quote one of my favorite lines from Adon Olam, “God is with me. I will not be afraid.”
And finally, please, please, please continue giving yourself pockets of normalcy and repreive (jogging, shopping, reading, schmoozing with Ranaan about his work, the weather, world politics, a good book, silly stuff, unrelated to the girls). Maintain your own balance.
You are doing great!
May 29th, 2007 | #
Glad you had another park day. Please try not to worry so much. If the doctor’s wanted Haley to be in a totally germ-free environment, she would be in a bubble and they would be making a TV movie about her. Just kidding, but please discuss the park, dust, mold and pollen situation with your health care professionals. We hate to see you worry so much. We can’t blame you, but we hope they can allay your fears a bit. Lots of TLC from Eudice & Sy.
May 30th, 2007 | #