I asked my sister once why she didn’t set up a caring bridge site for her husband (for those of you who are unaware of their situation, please check out her blog: gettysburgmoldenhauers.blogspot.com). She explained to me that keeping up with both a caring bridge and their family’s blog would be too much. I understand now what she meant. When we started this journey, Allison was the one updating the caring bridge for us. Every day brought new medical issues or tests or discoveries, so we would either call or text her the information and she would write it up and post it. And we are so grateful that she did – at some point, we can go back and see a timeline of where we’ve been, since the events are now hopelessly jumbled together in our memories. And then I got some computer access and started posting my feelings about our situation on my own blog (bloomingjoy.wordpress.com). And now I’m updating both, trying to do so on a daily basis. It’s getting harder to find different things to say on each with Samantha’s medical stuff becoming more routine and my feelings settling down, more or less. So at least for today, I’m writing one post and putting it in both places. If you are reading this on caring bridge and haven’t read my blog, follow the above link to it. If you’re reading this on my blog and haven’t seen our caring bridge, go to caringbridge.org and search for Samantha Pittock.
Now, for the updates. Last night Travis and I were up late talking and worrying and wondering about some of the decline we’ve seen in Samantha over the past couple of weeks. What precipitated this conversation was me going through the pictures on my phone. I realized I hadn’t taken a lot of pictures of her lately, and I was curious what the latest ones were. I found pictures I had taken at the hospital before we came here (Mother’s Day weekend) where Samantha was bright eyed and alert and responding to visual and/or sound cues from us and her mobile. It was shocking to see, to be honest. I think the decline in her responses to us happened so slowly that we didn’t really notice it happening, and plus we attributed her sleepiness to the increase in her anti-seizure medication. But we were worried enough to talk to the doctors again this morning about our concerns.
They agreed that our concerns were legitimate, and so she is now scheduled for another EEG tomorrow (this was surprising to the doctors since this facility doesn’t generally do those on the weekend, but apparently a tech was available for it). And her MRI that was supposed to take place on the 27th is now rescheduled for this Tuesday, the 24th. It may only be 3 days sooner, but hopefully we’ll have some results before the weekend this way.
The neurologists have talked a lot to us about the “progression” and “evolution” of her condition. We’ve heard that a lot. Our concern is that the damage has now spread to new areas, or that perhaps she has had some type of stroke or that the seizures she has had/could still be having have done damage in other places in her brain. Please continue to pray about all of these things.
This whole thing is very scary. Some days it feels like we’re losing her, but very slowly. Other days it’s easy to be hopeful that things are stable, when she acts the same as the day before. One of the most difficult things about this is the not knowing, as I have mentioned before. In that not knowing comes a whole bunch of stress whenever things change. We adjusted to the knowledge that she will probably have difficulties with motor function (more or less). Then she failed the hearing test at the hospital, so we’ve been trying to adjust to the possibility of her being deaf. Now we’re looking at potentially more damage – is her vision compromised? Her cognitive functions? I still wonder how we will communicate with her down the road, especially if she can’t hear or see or control her movements.
At the same time, I am very thankful that we live in a time when there is so much intervention and therapy available. I think about Helen Keller being locked in her own world until Annie Sullivan came along to teach her. Because of them, so much has been done to reach children whose challenges are greater than others. And come to think of it, wasn’t Helen Keller similar to Samantha, in that she was born with all of her senses intact but got sick as a baby?
I try to remind myself that from the time she was born, Samantha was always pretty laid back. She passed her newborn hearing screening, but she never was one to react to sounds much. Frodo would bark and she wouldn’t even flinch. It’s just hard to remember sometimes.
I can’t promise that the caring bridge and my blog will be different every day, but I will post to both every day if possible. Thank you again for all of your prayers.
Jim Riddle said:
You need to blog. Very definitely I can see that in what you write. It gives you a chance to get your thoughts together. I remember when You and Jon and I would have class night we would all be able to dump stuff that was kind of amazing when I look back on it (though I don’t look back on it the way I thought I might).
Samantha is doing fine. God sees to that. This neurological stuff is tricky. I honestly have decided if I get up and don’t see myself in the obituaries I might as well have a good breakfast and be up for the day (Pete Seeger song). This uphill/downhill comparative measurement doesn’t really do any good. My brother’s oncologist early on told him that “numbers are usually not particularly helpful.” Mike had a 5% chance of living over 6 months.
He made it 10 years. Never underestimate the power of the Creator of the Universe, as I always say.
As I have also said, I have these nerve things going on in me, too. They are annoying, and I have the advantage of having been able to grow up, to talk, to read, to see, to hear and all of those other luxuries. I can look right up on the wall and see Peg’s triptych: Matthew 7:7 ¶ “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. (NIV)
and, since scripture interprets scripture, let’s read a little further (as if I would have to remind you OR Travis about this passage)
8 For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.
9 “Which of you, if his son asks for bread, will give him a stone?
10 Or if he asks for a fish, will give him a snake?
11 If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!
And, of course, we can go back to Matthew 6:
25 ¶ “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes?
26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?
27 Who of you by worrying can add a single hour to his life?
28 “And why do you worry about clothes? See how the lilies of the field grow. They do not labour or spin.
29 Yet I tell you that not even Solomon in all his splendour was dressed like one of these.
30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith?
31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’
32 For the pagans run after all these things, and your heavenly Father knows that you need them.
33 But seek first his kingdom and his righteousness, and all these things will be given to you as well.
34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Relying on miracles is much easier than merely believing in them; and, it guarantees that there is no need to worry about tomorrow.
If Samantha has limited functions, cognitive, motor, whatever; if we ARE losing her a little bit every day; if her conditions are “progressing” and “evolving”, so what? Evolution – bah, humbug; intelligent design! Progress? Progress is merely change, change to meet conditions as they arise and/or are needed. Yeah, I know I am overly scientific. But I try to keep my interpretations simple. Child-like faith and absolute belief without question are much better for all of us, you know? Watch with joy as He allows your daughter to share that faith which He has instilled in her, as the Spirit forms YOUR faith through all that is happening. Hey, He is even working on my faith as this all happens, and I didn’t particularly ask for it or feel like I needed it. Through all of this the spiritual nature of your relationship with Travis, with Samantha, with the Lord and the Spirit, is what is really changing and “evolving,” with great purpose for the three of you and all of we who we touch and/or He uses to touch us. God using you for a purpose – we ask for it all the time and should rejoice when he does.