Tuesday, September 28, 2010

Back to life...

back to reality
-Soul II Soul, "Back to Life"

Reality. Is this our new reality now? I am slowly - very slowly - trying to return to some semblance of a routine, a normal life, but it's proving difficult to find any kind of pattern to our days. And that is just part of why it's been so long since I've posted.

I said this to an old friend today (and made myself laugh with it!) so I'm going to use it again here. I feel like I'm supposed to say, "Whew! Sure am glad that near death experience for my child is over. Now I can get back to that pile of dishes I was working on." It's like I'm supposed to just pick up where I left off, like everything is just fine. Truth is, I don't feel fine. I don't know how I'm supposed to feel. I don't know how to describe how I do feel. But "fine" really isn't on the menu.

I'm worried. I go in to check on Jay multiple times every night to see if he's still breathing. I worry he'll fall and have massive, coumadin-induced internal bleeding that I don't even know about. I worry that his heart rhythm isn't right. I worry that I'm pushing him too hard when we practice what he's learning in physical therapy. I worry that he's not eating enough. I worry that the only foods he'll eat are Goldfish, hummus, and whole milk.

And that's just my Jay worries! I worry that Luke STILL isn't over his cough/congestion/sinus infection, even with antibiotics. I worry that he has some undetected heart defect that will pop up at seven months old and steal him from me. I worry that I won't be able to keep up my milk supply and I'll have to serve him beetle-infested formula. (Seriously, did you hear about the formula recall? For beetles?! So gross.) I worry that he isn't getting enough attention and that the only one-on-one time I spend with him with him is feeding him. With one hand. The other hand is busy checking my email on my phone.

Hell, I'm a worry wart. I worry about a million things. Some of my worries are logical. Some, not so much. Some are significant, some so minor they don't deserve the mental energy I give them. But still, I worry.

I'm frustrated. Jay's still a two year old, and they don't call it the "terrible twos" for nothing. He can drive me batty with his whining, demanding that I drop what I'm doing to watch him unscrew a plastic bolt out of a pre-drilled plastic chunk of "wood." For the hundred millionth time. RIGHT NOW.

I'm struggling with guilt. Seven weeks ago, I thought I'd never again see him play with his tools. How can I say no to that adorable little face who simply wants my attention? (Even if he wants ALL of my attention?!) These other things I'm doing - talking to the cardiologist, getting prescriptions refilled, feeding Luke - they can wait, right? I should appreciate every single moment and celebrate his two-year-old-ness, right? Arggghhh!

I'm exhausted. Luke is sleeping through the night more often than not (Hallelujah!) but I'm still struggling to catch up from many sleepless nights. And that exhaustion leads to my short fuse, and I start spinning on the Frustration-Guilt-Exhaustion Wheel, and it's not pretty.

So, I'm sorry if this comes across as whiny and ungrateful. Truly, I am so genuinely and completely happy to have my child happy and healthy. I am so happy to be home that I don't want to leave, even to go to the grocery store. The four of us went for a walk tonight, and I just wanted to freeze that moment in time forever, listening to the magical sound of Jay's laughter. I am blessed beyond words. But I'm still not sure how to reconcile that genuine joy with the grind of daily life. I'm trying to find our normal.


Anonymous said...

I'm not a mom, but I've heard other moms say that once you have a kid, you live in a constant state of worry, excitement, fear, and happiness simultaneously until you die. I think that might be true. And sleep deprivation does crazy things to your emotions. Being a parent to two children is challenging and frustrating enough without the added stress of living in a hospital for 6 weeks. So you have a right to feel a little off. Just try not to beat yourself up about it and remember to take a DEEP BREATH! This too shall pass,
Love you!

Anonymous said...

What Jamie said..........I totally agree!

Anne Tunstall

Anonymous said...

Jen- It is completely normal to be havign all these feelings. You came so close to losing your son, no one can blame you for feeling the way you do. I have a friend who lost her daughter to a horrible disease 9 months ago and the way she put it is that she has the friends she can be "normal" around and those who she has to act like life is happy again. Everyone expects her to go on as if all is fine and in her world it isnt. It never will be. Dont deny these feelings you are having and talk about them to those you know you can trust.

Anonymous said...

We are still praying for all of you!!
Wendy S.

Dawna Jones said...

Hang in there! I know it is hard, but try to take a few minutes just for you & Derek. Remember, we love you & are continuing to pray for all of you.

Anonymous said...

Wow! As I was reading, the early years of motherhood came all back to me. I had the same worries and I didn't have a child with a heart condition. You can only do your best, and your best IS enough.
So, If this can help,
Forget about being that "perfect" mom you read about in books, articles, news media- You already are. If God gave you your children, you are the perfect mom for them. (You are doing really well, by the way). They belong to the Lord and He has entrusted them to you. He picked you for them.
Set your priorities. I love that cross-stitching Appie did for your Mom- about the dust and rocking my baby and babies don't keep (you know that one don't you?) Don't tire yourself out on things that don't matter- simplify your life.
Give your worries and cares to God. Don't look at appearances, stand on fact. Your emotions can take your focus from what is true- that God is able. Stand on His word and not how your feel. So, when your emotions are taking over, replace it with a promise from God's word.
I hope these suggestions are helpful. I am still working on these, too, but I think I am getting a little better (I hope). :)
Love you,
Aunt Ali

Katrine Holmes said...

Jen, I'm not a mom just yet, but I felt sad reading that you don't know how you're "supposed" to feel. Feel what you feel-there is no right or wrong. Give yourself a break, you've been through something major and getting back to "real life" will come. Maybe not today, maybe not tomorrow, but it will come. You are an amazing mom and person and Jay, Luke, and Derek are blessed to have you. I'm keeping you in my prayers.


Gayle Hines said...

Jen, your Aunt Ali had some very wise things to say. Know that many are praying for all of you and you will find that balance you are seeking. You are blessed, you know it but you are human and allowed to have these feelings.

Joye said...

Oh, Jen. This sounds like cause for a Joye/Jen night ... wine, chocolate, and me letting you know that you are FAR from whiny and ungrateful!!

I can imagine that this is 10 times harder for you. You had a "normal" before all of this scary stuff happened, and now you're having to adjust that. This is all we've ever known, but you're so not alone with these feelings, worries, and fears.

Love you!

Ruth said...

Oh, Jen, good for you to just lay it out there. I've been there, and it is no fun. Here are some things I've learned.
1) Despite what you think you should do, it is hard to go from hospital drama back to the less-intense drama of daily life. Really. Super hard to catch up with dishes and laundry, especially. Ease back into it without guilt. Do you know, I never once let anyone clean my house when we were in the midst of multiple long hospitalizations and me spending 24-7 caring for a very medically fragile baby? Nope, not once. Last year, for some reason I decided I needed some extra help catching up, and hired a cleaning service. It was heavenly. But I felt incredibly guilty for NOT getting the help when I really needed it. I'm sure my parents would have been thrilled to pay for it if I had only asked, but I was too darn stubborn trying to be "normal" to let anyone else do my stupid chores. Learn from my mistake!
2) Life is never going to be the same, and you now have a host of new things to worry about. Therapy helps. Really. Don't feel like you need to wait until you crack. Some people I know tend to view therapy as this big, scary thing, which it isn't. I can't tell you how refreshing it is to be able to talk to someone without feeling like I have to wear the "strong mom" mask that I tend to put on for friends and family.
3) It's going to get better, eventually. It is always worse when you don't get enough sleep at night. And when your kids are little and have lots of regular, childlike needs along with the medical needs. You will make it.
4) Feel free to request an echo for your heart-healthy child. If it reassures you, it is sooo worth it. All my kids have had them. My husband and I have had them. Now I have four less hearts to worry about. It's painless for them and very reassuring for me.
5) Take care of yourself as much as you can when you get the opportunity.

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