Anniversaries no one wants

Last week was the one year anniversary of Tuesday leaving us. We didn't post anything. We didn't observe the day in any way.

We thought about it. We talked it over in the days leading up and decided that we didn't have any idea what we would do to mark the occasion. In the end we did nothing. Nothing out of the ordinary, that is. Meaning that we thought about her constantly, maybe dreamed about her once or twice around then, and cried a bit or just got teary-eyed thinking about how good it felt to hold her or how goddamn cute she looked just about always.

Something we realized very early on is that Tuesday isn't there. When she left us it was completely, there was no one there anymore. There is a grave and it does not have Tuesday in it, it contains nothing more than a body. This is all to say that we don't believe that Tuesday cares all that much. We loved her as much as we could while she was around; we changed her diapers, gave her baths, kissed her head, wiggled her toes and just loved her about as much as it is humanly possibly to love another person. Now she is gone and there is nothing more we can do for her. In the end, anything we did to observe the day of her passing would be for us, not her. So maybe we just didn't know what to do for ourselves.

We are incredibly grateful to all of you, our friends and family and acquaintances, who have supported us and cared for us during this last couple of years. You have been forgiving, generous and compassionate beyond all reasonable expectations. You have brought tears to our eyes by your surprising acts of kindness and you have made us laugh out loud when we needed it most. We can't imagine getting through all of this without any one of you.

You are all good people and our lives have been made better by your being in them.

Thank you.

Tuesday, August 28, 2007

It's been one year since we welcomed Tuesday into our lives. We went to her grave and planted some violets. See?






























Thanks for all the kind thoughts and words.

Sunday, June 17, 2007

I've been meaning for some time to go through our collection of pictures and put some of them up so as to give anyone who happens to visit this site something to look at other than images of our daughter on the day she passed away.

Today seemed like the day for it.

Thursday, March 22, 2007

If you are reading this blog then you are welcome to come say goodbye to Tuesday. We have arranged a funeral for her on Saturday, March 24, 2007 at 1:00 pm at Mt. Scott Funeral Home on 59th and Foster. There will be a viewing and a small ceremony and who knows what else. If you would like to see her one last time, please, do come if you can.

More information on Mt. Scott Funeral Home can be found at http://mtscottfuneralhome.com/

Tuesday's final hours were spent being held by a long procession of people who loved her. If you are one of the people whose picture appears on this page and you would like that to stop, just post a comment to that effect and i will take the picture down.

Wednesday, March 21, 2007

Tuesday quietly left us tonight. She is missed.

Wednesday, March 21, 2007

Tuesday's condition is worse today than yesterday. Her breathing is erratic and stops regularly for periods of about a minute. She's not displaying many signs of awareness; she hasn't been awake at all in at least 24 hours, probably more but then, we weren't really paying that close of attention at first. We thought this was a cold, she had a slight cough and seemed pretty tired, but then our hospice nurse came over and told us it looked like the onset of heart failure. She told us Tuesday probably did not have much longer.

I don't know how such a little baby can hold on so long with what she's going through. The fact that she can keep breathing fills me with heartbreaking pride. The night she was born the doctors attending her told us she was a fighter and i brushed it aside as a comment made universally by medical professionals to all parents regarding their children. Now, though, i see Tuesday has such a will to live that it tears me apart to watch her struggling through this. She is a wonderful baby and we could not be more proud of her.

I would say that she seems comfortable but it would be more accurate to say that she is nonreactive to stimuli. She's getting held constantly today, she always liked being held so we thought that was a pretty safe bet. We're slowly saying goodbye to her in the gentlest way we could think of. I'm not ready to say goodbye. I never will be.

I love her so goddamn much.

Tuesday, March 20, 2007

Tuesday is not feeling well. Yesterday she came down with something of a cough that has since turned into something worse. Today the hospice nurse came by and said that Tuesday is displaying symptoms of what could be heart failure. Her color is pale bordering on gray, he breathing is extremely labored with every breath sounding crackly and her veins are distended.

She may pull through this and return to her previously stable condition. Our hospice nurse made it very clear that there was that possibility.

I find it hard right now to look at all those pictures of her i had saved up for you all, so there isn't one for this post. I'll keep you all as updated as i can.

Saturday, March 17, 2007

Surprise! I'm a baby!

























Nothing riveting to share this week. Unless you consider Christine getting what could be the world's worst sleep to be exciting, that is. Really, how she manages to not collapse into a heap at any given moment amazes me. I'm getting much too much more rest than she is and i can barely type this out. I wish i were kidding.

Let's see. We had another visit with the pediatrician, who is a saint by the way. We discovered that Tuesday has grown length-wise but actually lost a little more weight. Is it nutritional? Are we feeding her enough? Most likely, yes, but it's so hard to tell because the feedback we get from her is dependent on so many factors. Is she fussing because she's tired and can't calm down enough to sleep? Because she's in some discomfort from something we don't even know about? Because she's hungry? Because she has a gassy tummy? Ugh, who knows? On the flipside, there has never been an incident wherein she was unhappy and then calmed down upon being fed, so we don't think she's ever really desiring food. We've bumped up the amount of formula she receives, again, and we'll see what that buys us.

Everyone involved in the care of this baby has come to a similar conclusion regarding one matter and that is: the less tubes on this baby's face the better. To that end we are going to try getting her a stomach tube. This is dependent on a number of factors and the consent of various medical professionals since the procedure does involve putting Tuesday under pretty heavy sedation, "knocking her out" as it were. Three months ago the pediatric cardiologist gave a thumbs up with warnings for the surgery, but that was three months ago, so the gastro folks might want another evaluation. We can do that. There is some risk, of course, because it is a surgical procedure. There is the chance that being put under could be the thing that does it for her little heart, but it's a pretty small chance. I think anyone who's put a tube down this baby's nose within the last couple of months can tell you that anything to make her more comfortable would be good. So we're gonna do it.

In other news, Tuesday has discovered that she has two hands that can mess around with each other. She spends a great deal of her awake time doing what looks a heck of a lot like wringing her hands. We'll snap a picture of it one of these days, we promise. This is a developmental step for all babies called something like coming to midline. We were told about it back in our days at the NICU and i think we might have written it off at the time since we didn't really expect her to live much longer let alone show much in the way of maturing. But, lo, months later here she is, mucking about with her own fingers. Christine's also convinced that Tuesday is learning to grab things, as in reach out and take hold of objects. I haven't really seen her do this, although i've her hang onto stuff that was more or less put into her hand. She also does a fantastic job of grabbing her feeding tube which is briefly exciting and terrifying. One nice yank and it's screaming baby time! She also, very occasionally, will hold up one of her hands, her left one most times, with a little clenched baby fist. It looks like a motivational poster for the slogan "Baby Power!" Yet another thing to try and capture with the camera.

I'd like to make blanket apology to everyone who has contacted us for one reason or another and never heard back from us. It's not that we're busy or disinterested in talking or communicating with anyone it's that we are almost completely lacking in social motivation at the moment. Someday, seriously, we'll call you back. Probably just not this day.

In the meantime, thank you all for your caring and kindness.