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.
It wasn’t until May 20th of 2011 that I stopped attempting to write two separate pieces in two places. So for now, here is another long post, starting with CaringBridge and ending with my blog post from May 13.
Samantha continues to improve with each day – one of the ways we know she is feeling better is that she has become very intolerant of exams, diaper changes, basically anything that disturbs her peaceful rest. Her lungs obviously work very well, and her voice is back – this is evidenced by how loudly she can scream when we are not quick enough in her estimation to feed her. Her face has filled out, and she is getting a nice layer of baby fat all over. All of these are good things. Everyone who sees her remarks on how beautiful she is. We are blessed.
We have appointments set up for an MRI on the 27th of May and also with one of the infectious disease (ID) doctors on the 2nd of June. The MRI will tell the ID doctors whether the infection is healed. If there is some sign of it still in her brain, the antibiotics will probably have to continue. We will wait and see and pray for these, and ask you to pray with us for success and patience.
God has certainly been answering a lot of our unspoken prayers. Last night was a difficult one for us (though not for Samantha). She is in a room with a monitor, as we’ve mentioned before, in a wing with some rather sick children. Whenever another child’s monitor alarms sound, we hear a loud beep in our room, and a window pops up on Samantha’s monitor showing what’s happening to that child’s stats. The reason the system is set up like that is so a nurse in one patient’s room can see what is going on in another room and go to help in an emergency. Well, last night at least one child, possibly more were having a lot of difficulties. The monitor beeped every thirty seconds to a minute for a few hours. Neither of us got much sleep, though thankful Samantha did. In the wee hours of the morning, when you are sleep deprived, perspective can be lost. Both of us were mourning leaving the hospital, from the medical team and proximity of emergency care to the comforts we experienced. No hospitalization is ideal, but we have been impressed by the way the Memorial Hermann system here in Houston does everything in their power to make it the best it can be. Moving on to a new facility has been difficult. Not that they haven’t been wonderful in caring for us, but the types of comfort provided are different. We’ve also felt isolated due to the location of her room, and because until today we’ve been keeping the doors shut.
Getting to the point about unspoken prayers being answered – today we have been blessed by a nurse who is eager to help and stops in frequently. We’ve kept the doors open and experienced the noises of other people, and heard a lot of wonderful entertainment for the older children. We spent some time away during lunch and came back refreshed. God knew we just needed to be reminded that there is community here as much as there was at the medical center. We are starting to recognize the faces of staff and parents and making connections.
Meanwhile, Samantha’s food amount is being increased slowly, so her weight gain will probably also increase! The downside to this is that maintaining a therapeutic level of her antiseizure medicine is difficult with her rapid growth. On both Monday and Thursday of this week following blood tests she was given what they call a loading dose followed by an increase in the amount she takes twice daily. She is not yet to the level in her blood that the doctors wish her to be. We have not witnessed any active seizures since last weekend when Travis saw one – what he described as her shaking and her eyes rolling back into her head, very briefly. Most of the seizure activity has been what they call “sub-clinical,” meaning that it is not externally evident but can be picked up on an EEG. I’m also assuming that she can feel them. We pray that this seizure activity will subside with time as her brain heals and is less irritated, but only time will tell. The same is true for her hearing and her motor functions. Meanwhile we praise God for the growth we see in her every day.
If you live in the area and have time to stop by, please do! We love having visitors. To answer the on-going question of what we need, prayers are still number one! Company is probably the second, or perhaps sleep. So if anyone can take a nap and pass the rested feeling on to us, we’d appreciate it. And please know how much we appreciate all of the gifts we have received since before she was born – life has been overwhelming but we do intend to write thank-you notes soon!
My blog post, originally titled “The Woman I Never Expected to Be”:
I’ve spent a lot of time being fascinated by what we Lutherans called the doctrine of vocation. I have read countless books on the subject of calling, what to do with my life, where God is leading me, etc. I spent a lot of time praying about my dissatisfaction with the things placed before me and my frustrations with being disciplined. I’m sure if you spent some time reading through some of the back posts of this blog you’d come across many of those sentiments. Here is the irony of it all – I was always a closet feminist, trying to reconcile the ideals I learned watching the Cosby show with the life I was living. Go back and watch some of the reruns and listen to the women talk – I was shocked as an adult to realize that the “values” I struggled with defining were taken from the television screen! I’ve always had a difficult time with submission in my marriage, with the traditional roles of wife, mother, homemaker. And yet every time I’ve had a job there has been an element of dissatisfaction for me, wishing I could be home to take care of the things there. I love to cook but rarely find the energy to do so. I hate cleaning but I’m obsessed with doing laundry “my way.” And while I’d rather not vacuum or dust, I could spend hours or even days reorganizing every aspect of our home, from the kitchen cabinets to the filed paperwork. Somehow I’ve always wanted to be something “more” than a wife and mother. In fact, as a teenager I had no desire to have children (probably a good thing for a teenager to not want to become a mom, since too many indulge that desire as teenagers these days!). I couldn’t imagine having a traditional family. And somehow, through all of these things, I find myself landing in the middle of being a MOM.
We have only begun to understand the culture we’ve landed in, this culture of children with medical issues. Yet it is obvious that the primary involved parent is assumed to be the mom. Nurses and staff generally talk to me, not Travis, though doctors tend to address us both. Most of the parents we see in the halls are women. And the meal sign-up sheets for parents (they provide meals here for one parent) are almost entirely signed by “mom.” I know that television and media have been trying to convince us for years that these roles of women and men are interchangeable and that traditional roles are obsolete. But I have a hard time believing that when I still see the moms involved in their kids lives. I wish I could say that means the dads are working, but I don’t know that it’s true in all cases. Some of the dads may not be in the picture at all. And through all of this, Travis and I find ourselves sharing a great deal of this load. But when it comes down to it, he is the one still working and I am not. He is the one who can stand strong for us while I jump up at every little noise she makes. This is how God designed us as man and woman.
I realize that all of this discussion is one that can be offensive to some. I’m finding myself embracing more and more traditional values as I get older, and appreciating the marriage relationship that God designed. I’m exhausted, and Travis is encouraging me to go home for a night. But the mom in me can’t bear to leave our baby for a night, not yet, not even if Travis is here. I’m still praying about this and thinking, but it’s going to take me some time.
Next post coming tomorrow.