My Mind Playing Tricks

To say that this has been a busy week would be an understatement. I am both physically and mentally exhausted and I cannot wait for some down time this weekend. There is one more thing to get through before I can relax, though. Tomorrow Penelope is going for her sedated echo at Sick Kids to check on the structure and function of her heart. The chromosome deletion that she has puts her at risk for thoracic aortic aneurysm, so it has been recommended to us that she get yearly echos done to assess for any signs of that.

This appointment was made months ago, and I haven’t really been thinking too much about it. We had more pressing issues to deal with: the G-tube, and those weird spasms she started having, to name a couple. As recently as a couple nights ago, I brushed off any worries about it to my dad and his wife, saying that I wasn’t too concerned about it and expected everything to be fine. Now that it’s upon us, though, I’m feeling more and more anxious about it. After all, the very first inkling we ever had that something was wrong with our baby came when I was pregnant, at the 20 week ultrasound, where the radiologist couldn’t properly visualize her heart and was concerned about its structure. A fetal echo was done, and it didn’t show any abnormalities but the cardiologist recommended she have an echo done when she was a couple weeks old. That echo was more conclusive, and showed only an innocent murmur. So even though that issue was resolved, it’s not easy to shake off worries about your baby’s heart, and now, all of a sudden, those fears are resurfacing.


I’m hoping that it’s just my mind playing tricks on me, but I find myself watching her, thinking, “She looks pale. What if it’s because there’s something wrong with her heart? Her lips and around her nose looks a little blue. Could something actually be wrong with her heart? What if her lack of weight gain is related to a cardiac problem?” And on, and on, and on.

And of course, after everything I watched my Mom go through (she had a congenital heart defect, and after years of being in severe congestive heart failure, she passed away in 2011), the thought of Penelope having some kind of cardiac problem absolutely terrifies me. Logically, I know that the combination of that fear and my anxieties in general about Penelope’s health are likely causing me to worry about things that aren’t really a problem. I just don’t think I will be fully relaxed until I hear the cardiologist say that everything is fine. Which IS what she will say. Right?

Friday afternoon can’t come soon enough.

Charlotte and my mom, a few months before she died

Charlotte and my mom


Writing as Therapy

Yesterday morning I woke up in a bit of a bad mood. I had been dreaming about my mom, and then my alarm went off, and that cut the dream short, so right away, I was feeling a bit off. Then Charlotte came upstairs and I discovered she had gone to bed without her Pull-Up (we are still working on nighttime dryness) and so her sheets needed to be changed and she would need a bath before school. So feeling “off” turned to feeling crabby. Trying to get everyone ready and out the door felt very rushed, and I couldn’t shake the feeling that I was forgetting something. There was an undercurrent of anxiety with my bad mood, and more than anything, I wanted the day to be over so that I could go to bed and sleep off these feelings.

When you are four and feeling grumpy, you can collapse on the couch whenever you want

When you are four and feeling grumpy, you can collapse on the couch whenever you want

I hoped that going for a walk with Penelope would help with my mood. It didn’t. And when it was time for her to have her lunchtime formula, I desperately wanted to curl up in a ball on the couch and cry. Or sleep. Or eat some ice cream (Yes, I am an emotional eater). Anything to chase the bad mood away. Instead, I sat down at the computer and brought to life a blog post that had been rattling around in my head for awhile. And even though I didn’t write about anything deeply personal, when I was finished, I felt wonderful. Happy. Content. There was no trace of the anxious, grumpy person I had been earlier. It was like just the act of writing released whatever emotional pressure had built up in my mind.

This realization has inspired me to keep up with the writing. It is good for me. It is cheaper than therapy, and far more palatable than any medication to stabilize my moods. I am so happy to have found this outlet. And god knows, with the winter approaching, I will need emotional release on a regular basis (I am definitely prone to depression in the winter months). So on days when it is too cold/snowy/icy/horrible outside and we are forced to stay home, I can look forward to writing during naptime, and maybe I will make it through the November-April period with more good days than bad ones. And without gaining forty pounds. As Charlotte would say, “Good plan? Good plan!”

Penelope is ready to face the cold winter

Penelope is ready to face the cold winter

It Takes a Village

Today Mark and I are attending a class at Sick Kids to learn about caring for your child’s G-tube. Now, I have experience caring for patients with G-tubes, but I think it will be good to refresh my knowledge, and to attend with Mark. I’ve known about this class for a few weeks, but it just dawned on me last week that since both Mark and I would be going to the class, we would need someone to watch Penelope while we were gone.

I thought for awhile about what our options were. She will need medication and at least one feed while we are at the class, so I need someone who is comfortable with caring for a baby with an NG tube- not an easy person to find. Luckily, I have a group of friends who are pediatric nurses, and I knew that the best solution to my problem would be to ask them for help.

How hard can it be to find someone willing to watch this sweet baby?

How hard can it be to find someone willing to watch this sweet baby?

As I sat down to write that email to the group, asking if any of them would be able to watch Penelope, I felt really nervous. I was worried about what they would think of me asking for help. As if needing assistance with my special needs baby was somehow a failure on my part. I knew this was an irrational thought- this group of women are the most wonderful, kind, caring, and generous group of people you could ever wish to meet. Logically, I knew that none of them would think of me as a failure for asking for help, but that irrational fear of being judged stuck in my head. For Penelope’s sake, though, I swallowed my fear and sent out my message.

It literally took less than an hour from the time I sent the message to have someone lined up to watch Penelope (thank you, Kelly!). Everyone in the group responded to me- if they weren’t available on the day I was asking about, they volunteered to watch her another time so that Mark and I don’t have to wait another year for a date night. Even my sister, who has her hands full with four girls of her own, including a 7 week old baby, offered to come into the city to help out if I couldn’t find someone to watch her. The warmth and kindness in these responses brought tears to my eyes, and the anxiety I had felt before sending that message felt even more irrational than before.

I’ve written here before about dealing with irrational thoughts. Worrying needlessly about things is something that I have struggled with for a long time. Over the years, it has probably cost me multiple opportunities for new friendships or new experiences.  I am so grateful that this time, I didn’t give in to that anxiety about being judged.

Asking for help can make us feel vulnerable. As if somehow, it represents a failure or a bad decision. The truth is, though, that everyone needs help from time to time, and the real failure lies in not recognizing that and not asking for help when you need it. The old adage, “It takes a village to raise a child” is certainly apt here (I don’t know where we would be without the support and help we have received from family and friends), and in fact I think it should be applied more broadly- it takes a village to live life.