Monday, September 10, 2007

The Stuff We Don't Talk About

Shawn and I had a good cry together last night. Clare goes back into the hospital on Thursday this week for her cardiac catheterization on Friday. She has come through five caths already, so I know her track record is good. Yet with each looming cath, the fear creeps back in. I hold her longer, find more patience with her toddler obstinacy than I thought I had, run my fingers through her curls and kiss her smooth cheeks as often as she lets me. I relish in her big toothy grin, blowing me kisses and waving bye as she rounds the corner into another room.

(There is a pattern in my blogs - nights that Shawn is out-of-town, I find myself in the basement alone, thinking these thoughts, depressing myself. When I really should be in my bed, watching a movie, and eating ice cream. So, you may want to take the opportunity and do that now. I am not making excuses for my thoughts. I am warning you that they are dark, and I need to get them out.)

Lately, we have noticed that Clare desperately needs this cath. She has high blood pressure but the fact that she could not pump any blood out at the blood draw last week signifies low blood pressure. I know her blood pressure must be all out-of-whack again (my medical term for it). I know her heart is working too hard. But tell that to a 2-year old who has recently learned to walk. Who finally has the means to explore this great big world (or at least the first floor of our house). She does not want to stop. Clare wants to go, go, go. But the fatigue is there. And with the fatigue comes crankiness, frustration, and tantrums. Tantrums which drive my stress level through the roof because I can visualize what it is doing to her heart. Add to that a 4-year old who understands his parents are on edge about something (which to him comes out as snappish and short-tempered) and so he responds to these undercurrents with his own outbursts of anger. And then add a normally happy, content 4-month old who is experiencing his first virus, complete with fever, rash, and diarrhea, so he is inconsolable unless he is held and nursed around the clock. The equation adds up to one mommy and one daddy who are maxed out at the moment.

In church yesterday, we were sitting behind a middle-aged couple we often sit near (the gentleman is the same one who I caught holding hands with Clare one time). Clare has charmed this man, so he always has a smile and greeting for us. I imagined arriving at church without Clare, being questioned by this gentleman about her absence, and explaining WS, her heart defects, and her passing. At the same time, while the congregation sang "On Eagle's Wings" (a beautiful hymn which is often played at Catholic funerals... "And He will raise you up on eagle's wings, Bear you on the breath of dawn, Make you to shine like the sun, And hold you in the palm of His Hand"), Shawn was imagining that hymn being played at Clare's funeral. Why do we imagine these things? I tell myself that it does no good to dwell on the depressing. Yet part of me feels that if I can plan these scenarios out, walk myself through them, if someday, I am forced to actually live them, I will be prepared. I know this is a big fat lie.

Today I read an article in Brain, Child about the death of a child. (Yes, I question why I am reading this article when I am already thinking morbid thoughts, but I forced myself to not be a wimp and finish the article.) The author writes, "Before becoming a mother, I never knew that having a child means crafting not only a life but also a death, that each of my babies would carry within him or her not only the potential for death but the inevitability of it." I was too new a mother when Clare was born to know what motherhood was like without the very real presence of death lurking in the background. When Jamie was an infant, I followed all the advice about preventing SIDS. I cut his grapes in half to protect from choking. I never left him unattended in the bathtub. Yet I never thought anything would really happen to him. The mantra is that that happens to other families. But the reality with Clare is that it just doesn't happen to "others." It may be us. And I know I am trying to come to some sort of terms with that knowledge.

In all probability, Shawn and I will outlive Clare. Given the severity of her heart defects, her average lifespan is 50 years old. Younger than my parents are now. That's a hard pill to swallow. But what I wouldn't give right now to be guaranteed those 50 years with Clare. Fifty wonderful years. I don't care if she still lives with us, is a bagger at Hannaford, whatever. I just want those years. All the years I can get.


camille said...

I don't really know what to say, I'm so sorry you are having to go through with another cath but at the same time know that if her heart is working too hard, then she needs it. Today we just went through Connor's sedated echo and that had a very scary moment when he was trying to wake up. I will be praying for your family, that everything goes smoothly and that you can feel some peace about it.

Julie said...

I will be praying for you. You can never prepare for losing a child. We have lived through this when my husband lost his son 3 years ago. Although I do worry more of such a thing happening to Noah due to his heart problems, the concern is there with all of my children. It has taught me that we are not in control he is and we just have to have faith that his will, will be done. I have faith that we will spend the rest of our lives with Noah as you will with Clare. Even if that means they will live with us forever. Maybe that is naive but I try to think that way. It takes me out of the dark place, and believe me I go there too sometimes. Your in my thoughts and prayers.

Nancy said...

You are in my thoughts and prayers.

You expressed yourself beautifully, as always. Thanks for letting us into your thoughts and your world every day.

Anonymous said...

Teresa & Shawn - You (as well as Jamie & Simon) and Miss Clare are in our thoughts and prayers always. I am so sorry that you have to live with such sad thoughts daily. God is with you, and He never gives us more than we can handle. You have survived so much so far, as has Clare. Have faith, and let's get through today, tomorrow, etc. Prayers are sent your way today, and especially Friday. Thanks for allowing us into your world. We do not mind bearing the load (or a small part of it, anyway) for you. Love to all, Aunt Joan

Heather said...

Teresa, Cherish every day. I'm sorry you are feeling down. I'm glad there are mom's here who understand how you feel. I'm keeping you all in my thoughts and my prayers as well. Good luck with the cath. It is scary to think about. I'm sure Clare will pull through just fine, xoxo ~ Heather

Laura said...

Clare and your entire family are in our thoughts and prayers.
We've had some things come up with Michaela, so I've been feeling just like you so eloquently wrote.
Know you are not alone in feeling like you do.

Kim, Grandma to Ava,ws said...

Beautifully said, Teresa. And now I am crying at my desk, because it never has occurred to me that Clare Bear might not outlive all of us. I hold that girl near to my heart. She's the first precious child with WS that I ever "met". She has immeasurably helped me come to terms with ws and the challenges that I know our Ava will face. I am praying that all of us get to enjoy Clare for many years, and that she will breeze through this cath with flying colors. God bless you.

Love, Kim

Every minute counts.... said...

I am with you a thousand percent. It is something that I think about all the time and being that Thurs, Sept 13, is the anniversary of Abi's surgery...I will be with you in spirit all day. I have thought long and hard about the fact that we have come so very close to losing her so many times a year ago. Being told by the dr on Fri that we can't be too careful with her health and that maybe we should just keep her home because she really is still very sick. I take her BP everyday and when I take her pluse I listen to her heart. Her very weak heart that has it's own distinct beat. I listen to that swish at the end getting easier to hear and know that things will never be good in her body. I too know that I will outlive my child. I will be lucky to get to deal with a teenager with WS.I too can only hope for 50 years. She has beat the odds thus far maybe...just maybe...
I am sure I will be writing a comment about much of the same things you have. It is so hard to know what you know and still find hope. Hope and stubborness got Abi this far, it will help Clare out too. Just know if I could be there for you I would...not just through a computer.

Kerry said...

Always thinking of you... this reality with our children is too much for me to think about. Living in denial is such a wonderful place to be!

I will be in the cardio waiting room before Brady's 12:45 echo -- I can get there earlier if you are at odds with yourselves or want someone else to hold Simon for a little while (can't nurse, sorry!:) ) Call my cell or me at home or email me.

You'll be in my prayers :)

Anonymous said...

I'll be there at the cath with you in spirit on Friday and praying for clare throughout the day. please know you (and clare) are not alone, and you're not alone in your thoughts, either. I also have those days when paige is sleeping and my hubby is at work on his 24 hour shift when I worry about the future and how long her heart will keep working.

gina, jim and paige spicka (hlhs)

Katie said...

Oh Theresa,
I am praying for your beautiful daughter and her next Cath. I am so sorry you have been delt such a tough hand and so proud of your strength through it all. Thank you for sharing your thoughts so honestly. Clare is such a ray of sunshine and she touches so many people she has never even met everday. Hugs and prayers for your whole family from my whole family.

Aspen said...

*sniff sniff* tears are filling up my eyes. I am praying for you and Clare tomorrow and throughout the weekend. I will be checking back to hear the report.

Give her an extra kiss from us!

camille said...

I'm sure this week has flown by with the the cath being tomorrow. Your family is in my thoughts and prayers.

Tara said...

You are in my thoughts and prayers. I will be checking back for an update and hoping all is well.

Lisa R said...

I hope Clare does great like always, I know it is hard, you all manage like champs...I honestly try to never think about Death and Tatum, I know it is hard but we can not predict the future who knows how long you'll have with your little girl, I am hoping forever and at 50 maybe her and Tate well be roomies somewhere :)

~~ Hollie Lisk~~ said...


Your thoughts about your child and situation are real...and normal. I almost lost my child to head trauma and did endure 1 year of my child being blind and continued trouble with her eyesight. But at the time of her injury and surgeries I did process the same "morbid" thoughts.

Stay real and keep your faith strong in this Journey. My motto is, "if God brings you to it, he will bring you through it".

In prayer for your family,


Anonymous said...

We are praying and praying and praying. Our thoughts are with you all day today.
Love to all 5 of you!
The Gallagher Family
Michelle, Tim, Aidan and Ari