November 23

It is Wednesday afternoon, the day before Thanksgiving, and I am most happy to report that I have had no skin reaction whatsoever to the last treatment with vectibix. Again, the last vestiges of the original reaction remain, but that is becoming more faint with each passing day.
I am also happy to report that I have had some of the best days I have had in MONTHS over the last week. My energy level has increased tremendously – just yesterday I was able to take a shower and not have to lay down to recover from that effort for at least ten minutes afterward, which had been my pattern. I was even able to stand to fix my hair and put on my makeup, which is my normal practice but something I haven’t been able to do for at least the past 6 weeks. I have consistenly been able to eat 3 meals a day. I have even been having consistent, healthy “movement”!! Bottom line – I am almost approaching “good days” again.

I am having some severe pains at times, so all is not rosy and easy, but so far the pain meds eventually will get the pain under control. Sometimes it takes several doses and the pain can make it very difficult for me to breathe. But thankfully, those pains are not constant.

I am so thankful to be feeling better in time for Thanksgiving. I am thankful that I am actually looking forward to the food, which believe me I know is not the important part, but when I’d anticipated dreading having to force the food in, it is exciting now to think I should actually enjoy that too. This Thanksgiving will be the most meaningful ever in my life, because I am now so thankful for each and every opportunity to be together with my family. I no longer take for granted just that they are THERE – that each of us is ALIVE. I will probably burst into tears or laughter about a hundred times tomorrow. I’m gonna be a mess, I’m sure!
I wanted to write today to reveal a little bit more about the balloon release in honor of Anna.

I am well aware that we are not the only family to have suffered the loss of a child. It is a tragedy that many, many have suffered and is a quiet ache that many still feel deep inside.

I plan to release 3 balloons on Dec 4th: one for Anna, and one for two babies who were taken from two different friends earlier this year. It would make me most happy if others used this opportunity to recognize and honor children that they know await them in heaven.

One of the babies I will be remembering was a miscarriage at 12 weeks of gestation. The cultural “norm” seems to be to keep these “early miscarriages” very private, which is fine of course, but it also seems to be expected that the mourning should not be the same as for a late term stillbirth. I find it ridiculous that women and men are expected to adjust their level of grief according to the week of gestation.
My heart hurts for friends who have suffered miscarriage and then felt they had no where to take their pain; who felt it should be hidden immediately.

What I would hope is that maybe some people who are planning on joining us for the balloon release can experience an emotional release of their own as they honor a life that I truly believe is waiting for them in heaven (no matter how early it was lost), that LIVES at the feet of Jesus’s throne even as we live and breathe right now.
This can be done as openly or as anonymously as you wish. You could still just release one balloon, but know in your mind that it is to honor another child or children as well. You could write information about the other child on the one balloon, or you could release a separate balloon for each child you want to remember. Names/dates could be written on the balloon, attached to a card on the balloon string, or not included at all.

I do think that if there are several who feel comfortable releasing more than one balloon, it will be eye-opening to see how many have been touched in some way by the loss of a child. I believe we can and will draw strength from this act of unity, from seeing that we are not alone in this heartache. It can be a powerful testimony that several of us are taking a stand against the dark forces and demonstrating to them that this loss has not defeated us, but we hold steadfastly to the God who works all things to the good.

I want to make clear that the focus of the afternoon will be on celebration. On celebrating ETERNAL LIFE, that death has lost its sting, that Christ has defeated death, that we rejoice in the reality of heaven and that we look forward to the grand reunion one day. I hope that the mood is reflective but not somber. I hope the predominate mood is of joy, thankfulness and hope.

My prayer is that the balloon release will be a healing time not just for our family, but for many.


Happy Turkey Day to all! I expect much savoring to occur, my fellow savorers!

Love, Sara

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