Saturday, June 27, 2015

Just doing the best I can

Over the past few weeks, I've been told by strangers and friends alike how proud they are of me for various reasons. It always strikes me as a little odd, though I do appreciate the accolades.

I take the boys to the library once a week for story time or to just get new books. We went once and attempted to listen to the brass instruments upstairs but that didn't end up working out. On the way down, we took the elevator (Eden was in the stroller) and two older women joined us. Asher was talking excitedly about books and Elijah was just shouting with excitement (he loves elevators). They commended me for taking three children out by myself and told me they were proud of me for that and for instilling a love of reading in my son. They have no idea that he's reading on probably a 2nd or 3rd grade level (an actual teacher told me this, I'm not just making stuff up.) Of course, as soon as we got off the elevator, the boys scattered and I had to chase them down, but what else do you expect from a 4.5 and a 2.5 year old? They are generally well behaved, but they're also kids.

During Eden's blessing and other times, people have told me how impressed they are with how I'm handling this whole terrible situation. I keep up with her appointments, with her dietary needs, with her oxygen and weight checks that we do every day and week at home. I look up her surgical options and medical procedures and her various heart defects online so I can have a little more understanding. I keep family and friends updated both through this blog and through one-on-one conversations.

The thing is....I don't feel like I'm doing anything special. If I don't go out by myself with all three kids, I'd never leave the house. I don't want to go to the grocery store in the evenings or on the weekends because they're crazy busy. Plus, that's our time with Austin so I'd rather spend it with him and not in the grocery store. Eden's my daughter, I need to take care of her so why wouldn't I keep track of everything?

I definitely could be handling everything worse. I could stay home and never go anywhere or only go out when Austin is home, but that would be doing myself and my children a disservice. They'll never learn how to behave in public if they never go into public. We don't take them to restaurants much but they do fairly well when we do. They won't learn to overcome any anxieties they may have about going out in public if they don't go and they may develop anxieties if they never go. They need to play with other kids in the park and go to the zoo and run in the water at the splash pad.

I could just put my head in the sand about Eden's condition. I could pretend she's perfectly fine since she shows no outward signs of illness. I could skip appointments or not track anything at home or just insist that she'll be ok, but that would not be in her best interest.

The flip side is I could be handling all this better. I could be planning out fun activities every day for the boys, taking them to the library every day and to the splash pad and movies and the park and indoor playgrounds all the time. I could set up activities in the backyard or inside and just try to run them ragged so they sleep soundly and early.

I could be a virtual expert on Eden's conditions. I could know exactly what happens in a heart catheter in infants, exactly what all the surgical options are, know what the odds of survival are, know what future surgeries she'll need and when. I could know more about her doctors.

But I don't. I have to balance their needs with my own. I'm exhausted. I've been getting sick off and on for five months because of  not enough sleep and not being able to take the right kind of meds because I'm breastfeeding/pumping. It is a chore to get all three kids and myself up and dressed and out the door for anything. That's why you see them wearing pajamas or the same shirt or pants two days in a row sometimes, or me with unwashed hair and dirty jeans. Sometimes, it's just not worth the battle to get a diaper bag packed and everything ready AND fight them into new clothes. Forget trying to shower. Sometimes I find weird stuff going on when I get out if I shower without another adult in the house. It's sometimes a miracle I get donut holes and all three kids to church on Sundays in time for church.

At the CALF, I ran into a friend I hadn't seen in a while and we got a chance to talk a little bit. I was explaining my understanding of the heart catheter procedure to her and she got emotional, thinking about such a small child going through that and she asked me how I don't just break down in tears over it. I told her that I don't get that teary over her catheter because what's coming is so much worse.

A heart catheter is a small tube and then camera run up through the femoral artery into her heart to get an inside look at it. There's dyes and ultrasound involved, but my understanding of the procedure is incomplete. I know that they'll put her to sleep for the procedure since she's so small and needs to stay absolutely still. That's scary.

What's worse is her heart surgery. They will put her under for that, too. They'll stop her heart and put her on a machine to keep her alive. They'll cut open her chest and crack open her sternum and physically open her heart (a heart the size of her tiny fist), cutting and suturing and opening and closing and installing and removing. For hours. HOURS. No one knows how many hours, but probably not less than 6-8. My tiny baby girl will be on a ventilator for a little while afterwards, she'll be in pain for who knows how long. She'll be in the pediatric ICU for at least a week. She'll spend another 4 to 6 weeks in a regular hospital room before we're released to the Ronald McDonald House for another week or so. I'm going to be gone from my sons for about two months. I have no idea how long she'll be in a position that I can't hold her. I have no idea how long she'll be on medication afterwards, maybe for life. I have no idea how big her scar will be, or how long things will take to heal. I don't want to know, really.

If I sat and really thought about her surgery and recovery, I would just cry all the time. I see this little girl who's smiling and happy and kicking and cooing and I can't imagine or stand the thought of her in pain. When she cries and I can't fix it, I cry because it'll be so much worse in the hospital. So I try to only think about the next thing, which is currently her heart catheter. We're watching her for now and we'll reevaluate her situation in September when she turns 8 months old, maybe sooner.  The absolute longest we'll go before surgery is likely 15 months, so next April.

So what I guess I'm trying to say is that while I appreciate people telling me they're proud of me and that they think I'm handling things really well, I don't necessarily feel like I've earned it. But...thank you for seeing what I'm doing and for acknowledging that its hard. I'm doing the best I can and I can't imagine doing less than that.

Eden's Medical Fund

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