March for Babies

Saturday, September 06, 2008


My major issue right now is feeling unbalanced and a bit out of control (duh). I am being pulled in too many directions at once. I listened to my audiobook of the 7 habits this week (you know those highly effective people from the 90s) and I am trying to implement as much as I can.
The roles in my life that are the most important right now are: Mother, Wife, Employee and Self. The Friend/Relative one can come and go from day to day depending on the circumstances. Let's take a look.

Mother: Azure is crying more and asking for me. She needs me. She wants me when she doesn't feel well.  I want to spend as much quality time as I can with her. We are working on her ABCs and counting to 10 and she tries her hardest to sing "Row Row Row Your Boat". She can do these things with anyone. I can leave her in someone else's quite capable care and she would still be fine and she would still learn these things. However, she and I would both know that I was not there.  I told the social worker at the hospital this week that if she is just getting some lab work done I do not mind letting my mother take her and I can stay at the office, but when she is getting chemo it is different.  Even though the IV will drip whether I am there or not, it just feels like I should be there.

Wife: The house and my husband are both being neglected.  Of course it doesn't help that AF showed up this week.  I hear grumblings about this from T but actually, the reason AF is here this week is because I adjusted my pills the week we went to NASCAR so that she would not be an unwelcomed guest in our tent.  So, you see, I cannot win.  We are short with each other. We are doing our same cleaning, mowing, feeding the dog, getting by in the day to day of things but it is a struggle this time more than when Azure was in the NICU.  Thinking back, I was working part-time hours then hoping to keep my vacation days to use as maternity leave when she came home.  Now, since we have my insurance I need to keep my hours up around 40 and instead of a baby who only sleeps and eats I have a toddler who doesn't want to eat, who wants to watch Elmo 24/7 (which I cannot allow) and who throws tantrums (and throws her glasses and throws her food and throws her toys, etc.).  It is just a whole different strain than it was the last time.  I have tried a couple of times to arrange dinner out together so we could have some alone time.  We enjoyed the food and the conversation but it felt like the date was one more thing to squeeze into our schedule.  NASCAR was awesome and I am very glad we went but we came back and jumped right back into the work week and it has been full tilt since.  We stayed up late (10:30!) the other night talking.  I think we were starved for a quiet uninterrupted conversation. (This could probably said for the parents of any toddler. I am not saying that all of our issues are due to Azure's cancer, it is just a part of our lives right now.)
Employee: I want to name this one Valued Employee.  I know they value my work and appreciate what I do...when I am there.  They miss me when I am gone and are glad to see me when I get back to the office, even if I was only gone a couple of hours. *sigh*  I love my job, I love the people I work with.  I laugh out loud every single day.  It can be stressful, especially now that we do not have a receptionist and I have to pick up the slack there too.  I enjoy it.  It is the perfect opportunity for a workaholic like myself.  But, if I am going to be completely honest, the workaholic label does not fit quite as well as responibility-sponge.  T pointed this out to me during our quiet conversation.  I take on the load to do everything that needs to be done when in fact it does not HAVE to be me that does it.  There are others in the office who could pitch in.  If Azure were not sick I would not think twice about working the extra hours and taking it all on myself and showing everyone what I am truly capable of.  But...she is sick and as mentioned above, she needs me.  I keep thinking back to the saying, "When you're laying on your death bed you will not wish you had spent more time at the office, you will wish you spent more time with your family".  This is true!  I know this is true!  It is just SO HARD to step back and leave what looks like a pile of things I did not do.  I cannot be 100% everywhere.  It just is not physically possible.  This frustrates. me.
Self: I need to exercise, lose weight and sleep.  I need stress reduction in the form of quiet time alone and when I can afford it, a massage or facial.  I need these things.  I am not getting them.  I am sacrificing myself in order to focus on the three items above.  It is a losing battle.
Married Working Mother I can handle.  Married Working Mother of a child with cancer is proving to be a challenge. Time to get back into problem-solving mode.

Tuesday, August 26, 2008

A Bit of Whining

I have tried to start this so many times and I just do not know where to begin. How to write about something so terrible? The child I yearned for, worked so hard to achieve and almost lost to a premature birth is now battling cancer. It is not fair. It is not right. It is just wrong all over the place. What did we do to deserve this, as I know she did absolutely NOTHING to deserve what she has been through. It boils down to my own selfishness. If I had not pushed so hard for children, then we would not have gone through the whole IF roller coaster. If I had pushed harder for adoption, then we would not have gone through the whole NICU roller coaster. I would not have my beautiful curious hilarious girl, but she also would not have suffered everything she has in life. She must be a Buddhist for; all of life is suffering. Yet, she is so quick to forgive. She cries and tries to squirm away when I give her a shot, but when it is all over and that H*llo Kitty Band-Aid is firmly attached to her leg, she clings to me and snuggles against me because she is convinced that I will make it all better. She has more faith in me than I do.


T and I often spoke while she was in the NICU about which side of Karma we were seeing. Was it the bad side since we were living through the nightmare of hospital visits, ups and downs in oxygen saturation levels, ups and downs of feeding tubes and residuals, etc? In the end, we decided that it must have been the good side of Karma since she came home. Now, T is wondering if we are back on the bad side again. My theory is that maybe we are on the good side of Karma since we keep going through horribly shitty circumstances but coming out on top.


Did we go through infertility and the NICU to ensure we appreciated our child? Let me tell you, in our family, the sun rises and sets over this child. Is the cancer a way to make sure we do not start to take her for granted? I cannot even begin to explain the emotions that go into creeping on tiptoes into your sleeping baby's room to check that she is still breathing. You are straining your ears for the slightest sigh to relieve the fear that this is the time that you will find her dead. Will it be this time or maybe it will be next time? You listen, holding your breath but unable to hear over your own thundering heartbeat. You get closer and closer, panic slowly rising, wanting to put your hand on her back to make sure that she is breathing, but gently and quietly so as not to wake her up! There lies the conflict. Make sure she is alive, but do not wake her up as you check. I cannot explain what that does to the psyche. The heart/apnea monitor alone did so much damage that it was MONTHS before we heard the microwave beep, or a truck backing up or certain cell phone ringers that didn't throw us into a panic even if she wasn't there at the time. We finally got over all of those things. We were settling into life with a toddler (as "settled" as that can be) and then cancer happened.


I am sad for her and for us. I am angry that there is no way for me to make this go away. As a parent, you swear no one will ever hurt your child if you can help it. I cannot help this. I can only hold her close and do what I can to advocate for her care. I wish I could spend more quality time with her but we have my insurance through work so I need to keep my hours up at full-time. They have been flexible with my hours and very understanding and concerned for her. I do get to go to doctor's appointments and chemo treatments. I wake her up and put her to bed every day but those are not her finest hours (Tired + Toddler = Tantrums). She is with my mother all day when I am at work. This is a fabulous arrangement and I could not ask for better care for her, but I miss her!


Blehck! There is so much more, and this seems to have rambled off track here and there. Suffice it to say, for now, this sucks. However, I do believe she will come out on the other side. I do believe that she will be a cancer survivor. I am just so sad that what we want for our daughter's third birthday isn't cake and presents and a clown or pony rides but more than anything, ever…remission.


Thursday, August 21, 2008


Hmm.  The trouble with wanting to write a blog post about how hard it is being a full-time-working mother of a toddler with cancer is that you never actually have the time to do it.  I have many things I want to express but want to give it adequate time so that it comes out right.  Will try again soon.

Friday, August 15, 2008

Yeah, So...

Azure is rocking the chemo just like she rocked the NICU. Actually, truth be told, she is doing better this time around. At any rate, I started the other blog to keep family and friends up to date on the latest goings on but since family, friends and especially co-workers are regular readers over there I cannot express myself as completely as I was used to doing here at the bluetrunks site. So, I may start writing here a bit again just to vent out some things that I feel I should not do over there.
That was a really long way of saying, "Stay Tuned".

Sunday, July 06, 2008

Then Things Went Wrong.

So we were going to ride off into the sunset and watch our girl grow up to be all normal and stuff, but it didn't quite work out that way. She has had some occupational therapy to help with a slight speech delay and to refine some fine/gross motor skills, but other than that she has been a champ. People meet her and have no idea she was a preemie. Even the doctors are shocked when they meet her to find out she was a 24-weeker.
Then things went wrong...again. Azure has been diagnosed with hepatoblastoma. A tumor in the liver. It is rare for children to get liver tumors but if they do get one, this is the most common one for them to get. About 10% of cases have metastasized in the lungs upon diagnosis. Guess what, we have "nodules" in the lungs. We started chemo last week and are looking at a good six months of chemo, surgery then more chemo. It is treatable...if we caught it in time.
I have thought all her life that we were living on borrowed time and that we were never really meant to have her. I thought we cheated death when she survived her birth, then again graduating from the NICU, then again when her heart stopped at home and I had to revive her from her worst bradycardia episode. Never, ever, ever take your loved ones for granted. I believe she can beat The Big C, but it will not be a fun ride.
I am working on a new blog to follow our journey through treatment. It has nothing to do with fertility and I will not handle it the same way as this blog, so I do not want to link them. If you are interested, email me at bluetrunks at sbcglobal dot net and I can get you the new information.
Thank you for your continued support. It worked wonders last time, hopefully the same will be true again.