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Tuesday, July 22, 2014

Why my healthy baby sometimes makes me sad

Piper, 5 months


Being a parent comes with a lot of unexpected twists and turns. Truth be told, I don't think there is any possible way to anticipate what it is going to be like to be a parent, no matter how many kids you already have or how much experience you have working with kids. There is no way to know how you will handle situations that arise or how you will feel when certain things happen because you have no idea what your child's life will be like. No matter how much you think you know about raising children, you have no idea what it's like to raise any one particular child until you're doing it. My experiences with each of my children have been similar in many ways, but also vastly different because of their different personalities, temperaments, preferences, and health. I didn't know what it was like to be able to give a baby table food until kid #2 came along, because kid #1 didn't get her first tooth until she was 14 months old. I assumed all kids would be terribly messy eaters because #1 and #2 were pretty messy, but then #3 came along and was such a neat, tidy eater that we rarely even used bibs with her. Kid #1 was an amazing sleeper, but kid #2 kept me feeling like a zombie for months and STILL gets up between 5 and 6 every morning. You get my drift. They are all so different.

Within the last month or two, I have finally been able to exhale a bit. By that, I mean that some of my early concerns about Piper have subsided. I haven't talked much about it, but there were some things she was doing early on that scared me. She may not have been hospitalized by the age of 2 months or had a feeding tube placed, but things were not peaches & cream with her for the first several weeks. Even so, it was not like Raya's first few weeks. Although there were similarities in that I had concerns about both girls early on, I could see that they were vastly different and I knew that my experiences with Raya were casting an ominous shadow on any and every little concern that I had about Piper and making them seem worse than they probably were. I had anticipated that. I knew before I was even pregnant with Piper that pregnancy and having another baby was going to be emotionally and mentally taxing in a way that none of my others had been, simply because of the way that having a medically complex child and many friends who have much more complex children than Raya has changed me. Simply put, I know too much about what can happen to ever be as calm and oblivious as I was during all of my other pregnancies.

One thing that I did not anticipate though, was that there would be times when I would look at my healthy, typically-developing baby, feel a wave of overwhelming sadness, and burst into tears. It seems crazy, I know. Who could be sad with this sweet little creature around??

I can't even remember now exactly what was going on when that happened last week, but it was not the first time and probably won't be the last. It was last Monday, when she turned 5 months old. I had been holding Piper and snuggling with her, and was suddenly hit with a wave of emotion that felt like a ton of bricks. I looked at her sweet, calm, happy face and had sort of a flashback of Raya at 5 months old that broke my heart all over again.

When Raya was 5 months old, we were on our 3rd month of tube feeding. This was taken the day after she turned 5 months old:


She had just had her first experience with anesthesia a few days before, when she had her first MRI:


At 5 months and 2 days old, she had her last bottle and then went NPO ('nil per os', i.e. nothing by mouth). That was also when she went on 20 hour a day continuous feeds. I'm sure that if I had known it would be her last bottle, I would have taken pictures of her drinking it. She was a pro at pulling out her NG tube, and we couldn't put socks over her hands anymore because it was holding her back developmentally.

We were working hard to try and correct her torticollis (crooked neck due to tight muscles on one side, from her position in utero and made worse by her cerebral palsy that we didn't yet know about). That meant being conscious of her positioning in the car seat, while we held her, and during naps so that her neck & spine were being stretched the right way:

A week or so after her 5 month birthday, she was fitted for her plagiocephaly helmet, which (contrary to really irritating websites that call it 'baby flat head syndrome') was also a result of her position in utero and exacerbated by torticollis and CP. I really want to kick whoever started calling it baby flat head syndrome. That is the stupidest name ever, and is misleading because not every baby that needs a helmet needs it because their head is flat from always laying on their back. (*steps off soapbox*)

So last Monday evening as I sat looking at my sweet, healthy, and (so far) typically developing 5 month old baby, I was struck hard by how different her life is (and consequently mine) than Raya's was at 5 months. Or ever. I couldn't stop the tears from flowing as I thought about the contrast between the two girls. I suppose in a way, they were tears of grief over the acknowledgement that Raya's life has never been normal or easy. As hard as we have tried to make things as normal as possible for her, there is no way to erase the pain and suffering she has been through. I don't remember ever being able to look at her when she was 5 months old and just be at peace because she was so happy, content, comfortable, etc. like Piper is. Raya was not any of those things at 5 months. The reason she had her first MRI at 5 months was because she was so tense all of the time and never, ever relaxed. Her GI doctor had started to suspect that her demeanor had more to it than just gastrointestinal discomfort and referred her to a neurologist to start more testing. She vomited a lot, and when there was nothing left to vomit, she dry heaved. I had never ever seen a baby vomit and retch like Raya did, and she did it all the time.

As happy as I am that Piper's life is not even a shadow of what Raya's was like, seeing her doing so well serves as a painful reminder that Raya did not have that experience as a baby. She was happy despite the miserable times:


 but she spent more time feeling awful than any baby should ever have to spend.


We are getting close to Piper starting solid food. It will be another month or two, maybe more, but it's coming. In the last month or two, she has really started to get excited about her bottles. Because of her feeding difficulties, I am still pumping and feeding her breastmilk from a bottle, which has been a very healing act for me. It was devastating to me when I was told that I had to stop giving Raya breastmilk, but I could see that it was making her sick and she wasn't growing, and I knew it had to be done. Finding a sweet little adopted baby to donate the 3 gallons of breastmilk I had in my freezer to was a step in healing that hurt, but seeing Piper grow and thrive on breastmilk has been amazing for me. It has helped me regain some of the confidence in myself as a mother that was taken away when I couldn't keep Raya alive without medical intervention anymore.

I don't know what it will be like for me when Piper starts eating. So far, the way she has reacted to being given licks of popsicles and tastes of lemon water has inspired confidence that it will go well when we do start feeding her. I've never seen a baby her age get so excited about a popsicle, but she loves them. It will be hard for me to not micromanage every calorie that goes into her mouth. I imagine there will be some tender moments when I remember how frustrating and painful it was to try and get Raya to eat solid food. And messy. It was very messy.

 But it will also be sweet and beautiful and amazing, no matter how messy it gets. It has been 9 years since I fed a baby that grew at a healthy rate and didn't have issues with food, so the prospect of Piper being happy about eating is something that I am cautiously optimistic about and trying to look forward to.

It's hard to put into words why a healthy baby makes me sad, but I think this is what it boils down to. Piper has never seen the inside of the children's hospital. She has never slept in a metal crib with safety rails. She has never had vial after vial of blood taken from an IV in her head, has never had an x-ray or upper GI, has never been pinned down over and over again while her mother ran a tube through her nose and into her stomach, has never tasted formula, has never vomited so violently that she passed out after the retching stopped, has never tasted barium, has never had 7 medical appointments in one week, has only ever seen one doctor since she came home from the hospital, and has never been poked over and over and over again by nurses who are trying their best to get a needle into tiny dehydrated veins. The fact that I am acutely aware of all the experiences she has not had means that Raya HAS done all of those things, and I was right there with her during all of it. That is why I can simultaneously be happy and mourn when I watch Piper experience babyhood at its most normal. I am happy that Piper is doing so well and has never experienced any of those things, but I am sad for Raya that babyhood was so hard for her and that the relationship she and I had included so many unpleasantries, like the 62 times that I pinned her down and put her NG tube back in or all the times I held her down while she got labs drawn or IVs placed. Most of the time, the sadness sits on a shelf and I am aware that it's there, but it stays out of my way. There are moments though, where it comes out of nowhere and all I can do is allow myself to let it be what it is.

All that said, I am so very grateful to not be going through what we went through with Raya all over again. It is a beautiful blessing to have Piper in our family, and she has been a source of peace and healing to all of us.

1 comment:

  1. Boy, can I relate. Thanks for sharing those brave words. <3 Hugs.

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