This blog post is part of a series that I began for telling our story. You can read the first post here.

From this point forward, I’m going to be sharing the text of posts as they were written at the time. Some will come from this blog; others, from our CaringBridge site. I may from time to time write my own reflections after re-reading, but mostly I will just be sharing words as they were written. So much of this journey for me is revisiting what happened, and realizing just how difficult the journey was for us. And now, seeing how far we’ve come since that time.

Two long posts again in one. First, CaringBridge from May 14, 2011:

Last night was a tough night – nothing like the first nights of this whole adventure, but still difficult for us parents who are still adjusting to having a child who has been very sick and still has significant health issues. It started during the day, when the dietitian and the nurse conferred with us about the amounts Samantha is eating every three hours. The doctors wrote the orders that she needs at least 55 ccs (just under 2 oz) every three hours round the clock. But they also wrote it that she could have as much as she wants beyond that. So we had been doing 2 oz each time, and last weekend we had started to give her up to 4 oz at a time. On Mother’s Day she threw up twice, so we changed the type of nipple on her bottle and backed down to 2 oz again. Yesterday the staff here suggested we try to up her feeding again by an ounce, but in talking with us about our concerns agreed that half an ounce more would be safer to start. She did fine at the first feeding or two.

Then at 9pm, she spit up a little…not a lot, but it was a strange consistency and color, which eventually the nurse figured to be caused by her medication that she also takes at 9. Then at midnight, after Travis was finished feeding, burping, and holding her (we were instructed by the doctors after last Sunday to keep her upright for 15-30 minutes after each feeding), he went to lay her down in the bed. She threw up a LOT, possibly everything she had just eaten. But after that, she was fine – no temperature, bright eyes, content, even went to sleep. So in discussion with the nurse, we went back to the 2 oz amount for her 3 am feeding. No problems at all since then, and she’s now eaten four times. Basically, the doctors and nurses have come to the conclusion that she may have some reflux issues and that her stomach hasn’t grown enough to up her feedings. It is such a relief to be dealing with a problem that feels like a normal baby issue.

Granted, given everything we’ve been through, no issue with Samantha will probably ever feel normal. We will always worry that it is a sign of something worse. But today, at least, she is content and has been awake and quietly active for larger chunks of the day. She just had her bath, so now she will smell like a baby instead of antibiotics for the next couple of hours. When she was at the hospital she didn’t get a bath every day, or even every other day. Since coming here she has had one every day, and her bedding changed. These are the little touches that we appreciate about this place. 

From my blog, a post that includes someone else’s writing:

The beauty of our modern world is that through the internet, through facebook, through caring bridge and through prayer chains at churches, we have been blessed by the prayers of countless individuals that we don’t even know. One such person sent this to me yesterday or today (it’s hard to keep track these days), something she knew of through her line of work:

by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” 
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

For us, the experience has been slightly different. In many ways, it’s like we landed in Italy as planned, got to see the airport gift shop, and then a tornado came and picked us up and dropped us someplace else. We know we’re in Europe, but we don’t know where. Maybe we’re still in Italy. Maybe we’re in Holland. Maybe we’re in France or Spain. We’re trying to figure out where we landed by examining a single tile on the roof of a house. But it is beautiful, and we are finding that we enjoy the very special and lovely things about this place where we have landed, knowing that it is only through time that we will find out where we actually are. The message of the above writing, though, is so beautiful and we have found it to be a real gift.

In the meantime, Samantha and I are hanging out by ourselves until Travis gets done with services tomorrow and comes back. It’s hard for me to be so far away from everyone, especially since I had only just started to get to know people. Since the beginning of February, I’ve only been in church once, on Palm Sunday. Between my own hospitalization, having a new baby, and now her hospitalization, it’s been hard. Next weekend are two weddings that I was really looking forward to attending. It’s not often that Travis does weddings of people I actually know. Usually it’s the children of members or people who rarely attend, and I hate going to those. Between not knowing anyone and the fact that my date is up front, it’s boring and frustrating. But next Saturday, one in the morning and one in the afternoon, are the weddings of members I’ve actually gotten to know. I was feeling overwhelmed that they were on the same day, but still looking forward to the opportunity to get out and socialize a bit with people for the day, even with a baby. Now the events of that day mean that Travis will go home Friday night instead of Saturday.

Technically, I could go home. Technically, I could leave and let the nursing staff handle everything that Samantha needs. But as a mom, as HER mom, I can’t do that. At first I thought it was about my need to be in control. But the truth is, she can’t speak up for herself. If they forget to bring her medicine or food, or neglect to change her diaper, all she can do is cry (and even then, they might not hear her right away). It is my job (or Travis’) to be her voice right now. When I was in the hospital, Travis could leave me alone for a while. It wasn’t a huge deal other than my personal loneliness. I could speak up for myself, call the nurses for help, even walk to the bathroom on my own. But Samantha cannot (well, she keeps her bathroom on her, but that’s another thing entirely).

I’m so thankful every day for this little girl and the joy she brings to our lives. I can’t wait to find out where we’ve landed so I can learn more.

Next post coming tomorrow.