Being Raya's mother has changed who I am. Well, really each of my 4 kids has changed me in different ways, but Raya has changed the way that I deal with the things that life puts in front of me. I can look back on so many situations before she was born that stressed me out, frustrated me, made me angry, or scared me and realize that even though my feelings were valid, those situations probably weren't as significant as they felt at the time. I think we can always look back and see how things would be different if we'd only known then what we know now. :)
Several months before Raya was born, we entered the awful process of trying to modify our mortgage loan. Anyone who has done that will understand why I used the word AWFUL. It was months upon months of phone calls to the bank, paperwork, more paperwork, waiting, and all the while wondering if we were doing the right thing. Without going into further detail, I will say that the process of applying for a modification, receiving a ridiculous response from the bank, deciding to reject the bank's "offer", and then deciding to sell the house (followed by going through the grueling short sale process :) helped me to let go of some of the stress and anxiety that I'd always had concerning mortgage and credit (as in maintaining our perfect payment history & high credit score). The REASON I was able to let go of that stress was because during that process, a little bitty girl named Raya was born. (no seriously, one of the banks sent me another packet of paperwork to fill out and called us WHILE I was in the hospital just after having Raya saying they needed it back within 5 days) They were lucky that Donny was the one they talked to that time because my inhibitions were low and I would have said naughty words.
At first, things weren't too out of the ordinary with Raya and all the loan stuff was just an annoyance that took up time that I could have been snuggling with my tiny new baby, but I still felt a lot of pressure to jump through every hoop they threw at us. All of that changed after Raya's first hospitalization. All of a sudden, I was so overwhelmed with trying to keep her on her complicated feeding and medication schedule and keeping myself to a strict diet so that maybe she could go back on the breastmilk I was pumping 6 times a day religiously that I literally did not have time or energy left to
Instead, my thoughts were consumed by things that I had been blissfully ignorant to before, like if my baby was going to need the different surgical procedures that were brought up, if I would ever be able to breastfeed her again (and we know how that turned out :), if there was something seriously wrong with her digestive system, if she had any of the degenerative and eventually fatal diseases that were discussed as possibilities, why she wasn't meeting certain milestones, if her body would ever tolerate real food, if she would ever eat (jury's still out on that one :), if we would EVER figure out what was wrong with her, and just what devastating surprise might be lurking around the corner. Once your world has been rocked by something traumatic, you realize that you are not immune to the bad things that you thought only happened to other people.
On top of that, there are 3 other kids and a husband who have undoubtedly felt neglected from time to time since Raya was born. It is a sick feeling to have to ask other people to take your other 3 kids for you while you stay at the hospital for goodness knows how long with the 4th kid. It is even more disheartening to actually have no choice but to LEAVE your kids with someone else as often as mine have had to be left during all of Raya's appointments & hospital stays. I've heard a lot of moms of babies in the NICU say that no matter what you do, you feel guilty because either way, you're leaving part of your family behind to be with the other part and you feel like they all need you. We've never done the NICU, but I can certainly identify with that. We've been so blessed to have friends and family that our kids were comfortable staying with but even so, it didn't make me feel any better about inconveniencing them or leaving the kids.
While I feel like I've done the best I could to manage everything in the past 21 months since all this started, and I feel like I've done a pretty decent job with Raya, so many things have fallen through the cracks. My house is always a mess and I was pretty much completely absent in the kids' schooling last year. Raya had surgery 6 days before school started, and what was supposed to be a 24 hour hospital stay turned into 5 days of unexplained fevers, intense vomiting episodes, and intolerance to feeds (because the dumb resident wouldn't listen to me and I wasn't insistent enough, which also didn't make me feel very good about my role as Raya's advocate. lesson learned though.). During that 5 days, I missed Meet the Teacher Night and a baby shower I had been really looking forward to. School started and most nights, I felt like I was doing pretty good just to get everybody fed, cleaned (sometimes :), and in bed because we were adjusting to life with a brand new and very leaky G tube and new feeding schedule, so homework didn't always happen. I was oblivious to the lack of support that my oldest daughter was getting from her teacher, and because I was never able to be present in her classroom and her teacher never expressed that there were any concerns, I had no idea there was a problem until some of her grades (and her self-confidence) suddenly plummeted.
Then Raya got admitted to the hospital again in October. Again, we thought it would only be 24-48 hours, just long enough to give her gut a rest and place the GJ tube. Instead, I missed 15 days of my kids' lives, missed parent teacher conferences and another opportunity to discuss concerns with my daughter's teacher, missed another baby shower or two, had to humble myself to allow other people to take care of my family in my absence, missed Halloween with the kids, lost my cool with a couple of rude nurses (which I don't totally regret but am not proud of either), and just felt frustrated with not being able to be superwoman and be everywhere I needed to be.
Then when we came home, we had the post-GJ tube placement craziness that involved Raya coming home on 6 meds that had to be given at various (ridiculous) times around the clock along with her 20-ish hour a day feeds and continuous drainage and measuring of her gastric drainage into an awful little contraption that a nurse rigged up, all while trying to keep an active 11 month old from pulling out the GJ tube that would require a hospital trip to put back in. Try fitting things like cooking dinner and helping kids with homework into THAT schedule. Oh, and not to mention the PT & feeding therapy appointments and weight checks and follow-ups and whatever appointments the other 3 kids were going to. Then the 2 little girls and I missed Thanksgiving with the family last year because one of them was sick and we didn't want to share the germs.
Right after she came home from the hospital in November, we were notified that Raya would be having motility testing done in Ohio in the middle of December, so once again, I had to ask other people to take care of the other 3 kids while I deserted my family to take care of business with Raya. That time, I missed a few more small but important things like the holiday event at the kids' school and another friend's baby shower. In January, we added more therapies and upped our average to 3 appointments a week. I never once made it in to volunteer in the kids' classrooms last year like I wanted to and didn't go on any field trips like I wished I could have.
Even with all of those things (and everything else I didn't bother to mention), I never allowed myself to dwell on feeling guilty because I knew there was nothing we could have really done differently. However, being human, sometimes I can't not think about it sometimes, especially when certain comments are made that imply that I should feel indebted. I only WISH I could be everything to everyone, but I can't. Although time management is not my sharpest skill, having Raya has helped me to clarify what I'm willing and able to spend time on and what takes too much of my focus away from my family. I have had to let go of a lot of things that I used to spend time on because they just don't fit in anymore. There are other things that I've had to put a value on in order to continue doing them. I (and sometimes WE) have had to skip out on a lot of events, sometimes at the cost of hurting other people's feelings, because the effort required was just more than I had it in me to put forth. Traveling with Raya involves a lot of planning and packing, even just for a little overnighter. Anywhere without electricity is automatically out too since Raya's feeding pump battery only lasts so long. :) The amount of stuff we have to take with us just for her is more than what any of the rest of us need. Then there's the whole fear of what could or would happen if she caught a respiratory virus or the flu. And sometimes we opt out of things because it's just plain easier to stay home.
It's hard not to be somewhat pessimistic about everything. While I do fully acknowledge and am SO grateful for the huge progress she has made and for her overall health & strength, there is that constant, nagging thought in the back of my mind that wonders when the bottom will drop out. I remember one time when Raya was in the hospital I was talking to my mom and said something to the effect of, "Next time Raya's in the hospital..." and she said, "You can't think that way, you need to think positive!" and my reply was, "Mom, my child is being fed hypoallergenic formula through a tube in her small intestine. There will probably be a next time." It's sad that my mind works that way but it does. I don't mean to be negative, but like I said, when you've had that naivety yanked out from under you, you can't help but think that way. I feel like it's more being realistic than necessarily being negative.
Having met some of the kids we've met at the hospital and having seen some of the things we've seen other people go through, we can't help but feel so blessed that what we're dealing with is what it is. I count it as a huge blessing that we've never been faced with the reality of something imminently life-threatening like other people we know. We've never had to wonder if Raya would live or not, and for that we are very grateful. Things have gotten better as she's grown & her body has learned to cope with things. Even if she never eats and stays on the feeding tube her whole life (heaven forbid :), she could live a full and happy life that way.
At church last week (which I was happy to attend all 3 hours of for the first time in a long time, by the way), someone was talking about how faith and fear can't coexist. Maybe I don't know what I'm talking about, but I disagree. I have complete faith that no matter what happens in our lives, God will continue to provide for us as He always has. I have never felt deserted by God, even in the darkest moments of my life (like when my 18 year old sister was killed in an accident). Conversely, those are the times when my faith has been strengthened the most BECAUSE I know that God did not desert me during my times of greatest need. At the same time, my eyes have been opened to the fact that bad things do happen to good people no matter what kind of a life they're living. The scriptures are full of stories about good people who suffered horrible tragedies. Having experienced things that I had previously been blissfully ignorant to, I do live with a fear and even an understanding that tragedy can strike anyone at any time, but that doesn't change or lessen my faith in God.
Blah, blah, blah, where am I going with all this? Nowhere, really. Just getting it all out. There seems to be a cycle to the madness. Raya will do great for a while, then there will be a bump in the road followed by tests to try and identify the cause of the bump, followed by waiting for results from the test, during which there is the inevitable period of me trying not to drive myself crazy wondering what the results will be and what we'll have to do about it while also trying not to google anything and trying to discern between "symptoms" and normal quirks. Tomorrow, Raya will see her GI doctor that we haven't seen in 2 very long and tiring months. We will confirm whether or not she's gained weight in the last month, I will ask about trying a medication to stimulate appetite, she will probably say no again, I will probably be fine with that since the side effects might not be very pleasant anyway, we will hopefully have results from all or at least some of the labs she had done 3 weeks ago, then depending on what the allergy results are I might beg her to do another endoscopy with biopsies but probably not, then we'll probably adjust feeding schedules and possibly meds again, she'll tell us to come back in 2 or 3 months unless Raya still hasn't gained weight, and life will go on. Evidently, until then, my mind will continue to race through possible scenarios of what could have caused some of the strange things that have been happening lately and my stress-related irregular heartbeat will keep being annoying and maybe I might get 3 straight hours of sleep tonight before the feeding pump alarm goes off for no good reason, followed by Raya crying and writhing in her sleep again for no good reason (except for maybe the milk and pudding I fed her yesterday to see if anything happened again). And the school carnival that I'm donating a photography session for is on Friday and I haven't made the gift certificate yet and the church Halloween party is on Saturday and I haven't made anyone's Halloween costumes yet. And there are 6 of us.
See, even people who like to think they appear to be perfectly normal and have it all together can be totally whiny and a little crazy under the surface. :)