Needing time to mend. Time to sort out thoughts. Time to try to understand what has happened and if I will ever understand any of what this means to me. I wake up every day, I float up from sleep, and realize what has happened all over again, sort of trying to get going, find something to get going for... knowing that I still have one wonderful son who is alive, and grieving with me for his brother -- knowing that once, he pulled me up from my depths of despair when I learned of his step-dad's infidelity, and the plea from him that he and his brother needed me to be there with them -- please don't leave me, mom, he said... and I didn't and I won't.

So many caring wonderful people have called, visited, sent cards, written e-mails -- people we do not even know...

I reflect on Rob's last days, now, and still have very potent feelings of frustration, that were shared with his feelings of frustration, like something slipping away, just beyond reach (his life) and yelling at doctors, nurses, therapists, and the like that something just was really wrong -- please, what is it????? Can't you figure it out???? And they didn't until it was too late to correct their mistakes, the overdosing and his many reactions to the drugs they were trying to give him to save his life, to give him comfort from the pain, that became a virtual witches' poisonous brew that took him away...weakening his blood components, diluting his strength, and finally, the horrible horrible last days, when he could barely see, barely stay awake, and could not form words into sentences, losing himself and could only thrash around, uncomfortable, never taken away from his discomfort being forced further and further into dimness and discomfort, and finally the horrible abrupt end...which took away his ability to breathe, and took away his brain...

Oh God, save us from this hideous memory of our dear sweet boy's suffering... we just cannot understand it, why...why the suffering????? I cannot come up with an answer...no matter how hard I pray.

And he knew, before he lost his ability to think... he told me, mom, I'm dying, mom, I'm never going to get out of this PLACE, mom, I want you with me when I die...please, don't leave me...

Oh gosh, whatever am I to do to get away from this pain of knowledge that I will have with me for the rest of my days... I only pray to God that He will take away the pain and send us a sign that Rob is now okay...

Dear Lord, I pray for the lessening of our grief, and the softening of these horrible graphic memories of our struggles for Rob...and Rob's struggles to stay alive, when he knew, somehow, he was dying...

Your Faithful Servant, Ellen

Wishing life was easier, sometimes, yet I know that others have much more to handle than I do -- we must always place ourselves in the proper perspective...

I know we have a big road to go down before we get to a place where Rob will be more comfortable and defining the mile posts is what it's all about right now. His focus is our focus.

Will needs his share of attention, since graduating from college is a major accomplishment for sure! Hope we can focus on him this weekend and give him the attention he deserves while he is here for this momentous occasion. He is such a wonderful, talented, young man!

So much going on right now. Guess we just take it a bit at a time, even though it feels like we are drowning in a fire hose -- at times... It is nice to have the early morning for quiet reflection...

Good to get the pictures from Justin yesterday and seeing Mike -- in 34 years, we have aged, but all in all , we're looking pretty darned good... Those boys are so talented, between them... nice role models for Will -- maybe one day, he can meet Mike, too. That would be good...

I guess the goal is to get to Austin eventually, to set up a household in Dripping Springs, somehow. I guess I should start thinking about a plan, and hope we can all move over there whenever I retire, or decide to go solo.

Must go, dear diary... it's time to get ready to face the day!

Hard day - fighting this cold, still trying to remain up for my boy. I got the appointment for the lung transplant Q&A consult for this coming Monday. I hope it helps. It is certainly hard sometimes and my sweet boy so desparately wants to live -- and live better than he has.

Hopefully, this will go well.

It was good to have the day off today -- to sleep until 7:00 or so, instead of the usual waking at 5:00 AM and going to work...

Last night, at midnight or so, my son came to me and we talked about his concerns again, thinking about his options, worried, obsessing with his symptoms, now really fearful of the future. He did well most of the day, but you know, when the lights go out, something happens to us...we begin to think more, and the diversions are gone .

I tell him how strong he is, and that he should just focus on whatever wellness habits he can develop. He feels guilty that he didn't do some of those things like exercise and eat right, maybe not take his medication as regularly, fudging occasionally, all those things a normal teen might do -- and I tell him to stop feeling guilty. It is not worth it and you can't turn back time, you can only go forward and do what is best from now on out.

There are times when we can escape thinking about this serious stuff, but then it always comes back. I remember that I had these feelings when I first found out that he had CF. I would have these "re-realization" spells. Over time, I became adjusted and tried to just live and love every day... We humans always seem to have this mechanism for escaping and normalizing...only to re-live the shock of some horrible news, the death of our dreams, the sadness for our children when they are stricken -- I would rather take the pain than to have them feel it...

This child was, like me, born in West Texas -- a unique place in the world... He is a scrapper, strong and surviving... I have to keep this in mind, when I worry...

Today, he is with his friend and they are playing computer games, having a good time, laughing and acting like nothing new is going on. For this respite for him I am grateful.

My son went out with a friend to the gym and to eat dinner! He also went back to school today -- and felt fine and not too disenfranchised and out of it... He was cheery when he called this afternoon -- praise God! I was afraid when I left him this morning that he would call and say he wasn't feeling strong enough, but he was up early, and ready to go before time to be there. He is on half-days now that he is off homebound.

Work engaged me, so I didn't think about things at hand so much. My ex didn't hound me at all today, so I felt better without the "stimuli." I needed a break from thinking. I did sleep all night last night for the first time in months! I was pooped! No thunderstorms in the middle of the night, so Miz Sadie didn't wake us up! (the dog!)

I can finally sleep on my tummy again! YAY! For so long it was "tender" when I did this... Must be a milestone.

Everyone is so super supportive - You are great friends! Thanks so so so much -- and bless you! -wt

Comes a time, once in awhile, when you or your loved ones are faced with the biggest hardest decisions of a lifetime -- as now my young son must face whether to go down the usual route with cystic fibrosis treatment, which is not yielding optimum results, or opt to be evaluated for a lung transplant, which feels pretty radical to all of us, especially him, right now. It puts him into the position of being enticed by the potential of having non-CF lungs, but realizing that that comes with great risk -- long surgery, anti-rejection drugs for the rest of his life -- potential death if things don't work out... The CF treatment is known territory, scary at times, but we "know it." I hope and pray that we can help him make a good decision.

In the meantime, he has decided to improve his fitness by going to the gym. He has picked up his eating and is gaining weight. He only hopes he can turn his lung function curve upward, instead of where it has been headed, which is slowly downward.

I didn't post yesterday, as I was too upset to write. Thank goodness I am recovered to this point, as I would not have had the strength to deal with this during my first weeks of recovery...

All of the support I get from my friends here and friends at work helps enormously.

Thank you from the bottom of my heart!

It started quiet, but at 2:30, when I went to give Rob his infusion, the darn thing was filled with blood (means the valve inside his line was not working), and the flush would not go. Had to call the RN from the homecare agency. She tried - said it was blocked. We called the doctor and he said that since it was so close to the end of the therapy, that if Rob wanted, we could pull the line. The other option was going to the ER to try to put blood thinners in the line to un-clot it...fairly risky, and so Rob said he wanted it out. The doc said that would be fine. I am relieved. Rob is relieved, I'm sure.

We did get to take our walk tonight - Tom took his THEA test today, and will get his results sometime next week. He will probably do better than he thinks he will.

I am still trying to keep up my spirits with adjusting to the new me without those body parts -- which I don't feel any loss for, but imagining that there should be some impact...only the change I perceive in my metabolism, which I am trying not to take too hard...just adjust my food and activity to accomodate so that I can still lose those last 10 pounds! What a deal! It used to be so easy.

Work is better this week. Got some confirmation that I am still worth their keeping around. Found out that the job I interviewed for last month that I did not get put into was not a high enough level for me, and that they could not spare me from my present job, too idiosyncratic a skill set... guess that is okay... the manager told me that I had more potential for upward mobility where I am -- that he would have loved to have had me in that job, but the present managers said that I could not go. Okay by me. They know what they need.

I feared since I was out of work for so many weeks that it weakened my position there, which I guess it didn't. They are way more caring than I expected them to be and were just giving me a chance to catch-up.

Anyhow, dear diary, I am okay for today... It turned out okay, thank goodness...

Dear Diary!

I will have people over to eat Easter dinner...my friend Wanda and her son, Chris. Her husband is a working civilian in Iraq. They sometimes seem to be at a loss. Her dad passed away recently. I feel good that we can have them come break bread with us. It has been awhile since I have entertained. I have helpers and my mom is bringing a Leg of Lamb, our family traditional Easter meat. Rob is still on IV treatment for his infection. Eating at our house is best.

I am planning a healthy, low-fat meal around the lamb (which does have fat in it!!! whew!). Angel food cake, strawberries (lovely ones), and candy if you want it for dessert. Asparagus, wild rice pilaf (home made), redskin potatoes, salad... Spicy Black Bean dip for appetizer, goat cheese? Some new bread and rolls... Coffee for dessert -- wine for whoever wants it... Mint sauce for the lamb with mint from my garden... Should be nice... Hope this lovely weather holds out!

We went shopping today... Tom got new shirts, I got a new outfit and some shoes. Took 6 bags of old clothes and shoes to the charity today -- some like new -- hope someone likes them as much as I did -- some oldies but goodies I loved...

Mood okay today, but still get burning mad thinking about the ex...

Still having little memory lapses... lots of stress, new hormones? Residual from anesthesia? Who knows?

Anyway, I am feeling fine -- ran yesterday 50 minutes -- rested today -- first time in awhile I have not worked out. Need to do this once in awhile...

Anyway, it's been a pretty good day... all in all.

Dear Diary,

When I think of all the changes I have gone through in the last few years, with a chronically ill child, a divorce after years of a difficult marriage, moving, learning how to be a "single-mom", and having supressed my own physical issues for years -- it is no surprise to me that my body has been yelling at me and I wasn't listening to all of what it was saying... Yes, there was an explanation to gaining 5 to 7 pounds a month! It was not food or lack of exercise! The ex-hubby used to chide me for becoming "fat" -- "push away from the table", he'd say, or "lose 10 pounds" -- all the time I was struggling to keep the weight off, and having "give-up" days when I'd just eat everything I could (cyclical -- hello?). Now that my doctor tells me I had a uterus integrated with endometriosis and fibroid tumors, no wonder -- every cycle was an internal water balloon gone mad! Bloat not fat, and I knew -- because fat to lean measurements had been running from 17% to 25%, fluctuating -- and not bad for a woman in her late 40's (now early 50's). I exercised, tried to eat healthy most of the time (really, honest), and yet the "big belly" would come and visit, despite all I did.

Genetically, I am the "smallest cousin" -- obesity runs in my dad's family, and if not obese, large framed, heavy people (built for working midwest farms, and before that, Irish/Scottish/English, I suppose). All of my life I have felt posessed with a presence of heaviness -- but hormonal, I figured, as I got older and learned about such things. Heavy and dark hair in unwanted places, monthly "issues" since age 10, early menopause symptoms (age 36, began noticing symptoms), hypo-thyroidism, fibroid cysts, heavy periods, painful cramps, yada yada yada... I probably fit some profile somewhere. I have just put up with it, treated it as I could, and lived with it until this year.

Age 28-30, had some bad infections that I believe ultimately resulted in bad pap smears - had to go in for two conizations, eight months apart. After that, clean sailing. Pregnant again at age 33. Difficult pregnancy. Heavy on my hips, low-rider baby, early labor, baby with birth defect, then diagnosed with cystic fibrosis -- stress for the whole family. Being main caretaker of my sweet boy, I tried to cope, tried not to gain weight, tried to be healthy and strong for him. Still do. He is 17 and despite many infections, is still hanging in with us. He's a true trooper! We have worked so hard for so many years to keep him well and alive. It is the hardest thing I could never have imagined I would be doing in my life. He is an absolute wonder.

My older, "rock" of a son, was always there for me, still is in spirit -- but lives far away from me now. That's good for him -- he is living his own life. He does care deeply for his family. He is such an excellent guy and makes me so proud! He sacrificed a lot of his childhood to everything that was going on with a sick baby brother and did his best to help without complaining very much. When I couldn't move, he moved for me. He is a true wonder -- he never broke, never acted out, always continued on, strong as an ox...and smart as a whip.

Depression has come to me many times, mood swings, the whole 9 yards of fun with hormones and stress. I was going to this doctor once who wanted to medicate me. I tried it. It didn't seem to matter. Exercise has been the best medicine for me. I know some people need help with anti-depressants, and occasionally, I tried again to see if they made a difference, but I really think that it was hormonal swings that caused my particular issues, coupled with lots of stress. It's all interrelated.

I do feel better now with having the hysterectomy and knowing some answers to enigmatic and transient symptoms I had. Like finding a key that unlocks a box with the answers...okay, not all of the answers, but a LOT of answers!

I am happy to have found a support network that can relate to how the body issues of "insides gone wrong" extend to our everyday life issues -- how we handle things...

It will be nice to have this log of the road beyond the hysterectomy and the changes that occur from here on out.

Until later, dear diary!