This is a very difficult update for me to write. We are desperate for your prayers.
[NOTE: Ordinarily, we would post something of such a personal nature only on Carly's Care Page. But I felt prompted to share this update and our need for prayer more publicly at this time. Thank you for bearing with us by the power and common connection of the Holy Spirit!]
Larry and I are physically and emotionally exhausted after an unusually difficult year with Carly but also a December that has us, quite literally, at our wits end. Life is always ebbing and flowing through challenge here with Angelman Syndrome but things got significantly DERAILED starting in March 2010. I know, I’m worried about sounding overly-dramatic but this is the honest-to-goodness truth. Life is feeling about as hard right now as it has since Carly was 9 months old and we were grappling to understand what was going on and what it meant for our future. We’ve spent the last few days trying to regroup and determine next steps for a new year but find ourselves struggling even to feel confident in our own discernment and decision-making abilities.
For so many reasons, I am finding it nearly impossible to put this situation to words. Perhaps most of all, it’s just plain complicated. Of course we are very tired. But it is more than that. (And, by the way, when I am tired I tend to ramble which I don’t want to do so please accept my apology for this lengthy update.) Part of me wants to curl up and hide and yet I also desperately want people to understand. In trying to articulate what’s going on, Larry and I feel vulnerable about miscommunicating, being misunderstood, judged, even neglected.
Despite the frequency with which we encourage others to ASK for help when they are in a crisis, I confess that it never gets easier for us to do it ourselves. Of course, there must be a layer of pride to it. But honestly, it so much more than that. For Larry and I, asking for help has usually been most hard because we just aren’t always sure what anyone could do to be helpful. But I’ll confess that we are also afraid people will say “no” — simply not respond at all. We are afraid of needing something from you (from anyone) that you cannot or will not give.
Most of all, of course, it’s your prayers that we desperately need. I suppose there may be things we need in a practical sense also, but that would be one of those categories of things we can’t even put into words right now. We aren’t sure what we need, or what would help.
So all of that said, I will simply press on and summarize some facts:
- Carly is experiencing chronic pain and the source is currently speculative (most things have been ruled out so we are down to a likely ongoing case of gastritis and/or growing pains)
- After concerns about lack of growth and weight gain for so long, Carly has grown almost 2 inches in the last 2 months and gained about 4 pounds
- Since her last upper endoscopy (June ‘10) showed no healing, a follow-up is scheduled for this Wednesday (January 5th) at Children’s Hospital under general anesthesia
- She has an appointment with the palliative care (pain) specialist again on January 11th
- She has an appointment for a consultation with a new sleep specialist on January 17th
Please understand this is about more than just sleep deprivation. Carly is experiencing pain and it’s affecting her behavior NIGHT AND DAY — 24/7. It’s one thing to be facing night after night without more than a couple of hours of sleep at a time and knowing that when we are not sleeping, things are very intense physically, emotionally and spiritually. It’s another thing when the daytime hours demand someone’s constant attention toward keeping Carly comfortable or at least distracted from her pain. Thankfully, she is often fairly distractable it’s just that this requires so much time and energy. We have had to seatbelting her into a chair just to leave the room to use the bathroom or shower unless someone is right there to keep her busy and safe. That means it’s a constant tag-team effort here between Larry and I with short breaks when the other girls or staff support is around. And holidays mean even less staff help is available. In the meantime, we’ve also had to minimize staff support since Larry lost his job in order to keep as much of that income for me as possible. It’s a “Catch 22.”
We are barely functioning right now. The daytime is nearly consumed with trying to recover from the night while also grabbing at anything that makes us feel like we have a “normal” life for moments here and there. This means that things like a job search for Larry and ministry efforts are happening in fragmented and inefficient bursts. Neither of us feels like we are doing anything very well.
Please pray specifically for (in no particular order):
- Clear answers about what is going on
- Clear THINKING/FEELING about what is going on
- Physicians who will really HEAR us (Carly’s behavior/appearance can often be very misleading when you only see her for short periods of time and when she’s engaged in a novel environment…which is why our staff keep taking her on “field trips” to walk at Target or Home Depot)
- Effective pain management strategy
- Effective behavior intervention
- Consistent effectiveness in keeping her bowels cleaned out
- Falling asleep quickly in the evenings and STAYING ASLEEP (because something…maybe pain…has been waking her up after about 3 or 4 hours almost every night and then she gets VERY distressed and cannot go back to sleep)
- Satisfying emotional and spiritual support
- Patience, hope, strength
- NO FEAR
- Opportunity and self-discipline to take care of ourselves (resting, eating right, getting adequate exercise, connecting relationally)
- Comfort/healing for Larry and I as our own aches and pains are increasing with the stress (neck and back pain, stomach pain, headaches)
- Peace and strength for Alex and Erin as they patiently endure and kindly step in to help whenever they can
- Protection on every level
When there is so much that is confusing and chaotic about our circumstances, we are clinging very tightly to anything we know FOR SURE. We are trying to take one step at a time. When we KNOW there is something we clearly should do, we are trying to muster the energy to do it. When we are uncertain about a next step, we are trying to walk cautiously.
One thing we know for certain is that we need keep WAVING OUR SWORD — keeping reading, praying, and SPEAKING OUT LOUD from God’s Word as often as possible. That includes reading from the scripture during the middle of the night when we are lost as to how to stop the downward spiral of attitude, confidence, emotion, effectiveness in soothing Carly, etc. I’ll close by sharing something Larry was reading last night that gave us both some comfort.
1 LORD, do not rebuke me in your anger or discipline me in your wrath. 2 Have mercy on me, LORD, for I am faint; heal me, LORD, for my bones are in agony. 3 My soul is in deep anguish. How long, LORD, how long?
4 Turn, LORD, and deliver me; save me because of your unfailing love. 5 Among the dead no one proclaims your name. Who praises you from the grave?
6 I am worn out from my groaning. All night long I flood my bed with weeping and drench my couch with tears. 7 My eyes grow weak with sorrow; they fail because of all my foes.
8 Away from me, all you who do evil, for the LORD has heard my weeping. 9 The LORD has heard my cry for mercy; the LORD accepts my prayer. 10 All my enemies will be overwhelmed with shame and anguish; they will turn back and suddenly be put to shame.
Thank you so much for reading all the way to the end. You are beloved friends.
Larry & Lisa