So, tonight we put Brynna to bed, it was uneventful. You know, only 4 meds tonight instead of 5; no shot today. Even on simple nights I'm sometimes reminded, and saddened a little, that normal for us is "how many meds are we giving tonight?". But times like this make that a short-lived thought ... you see, when we brought her home they said she would never love, know love, show love, let alone speak love.
We received clearance yesterday for Brynna to start back to school on Monday!! Whoohoo! I would like to thank the wonderful people at TLC, the Treatment and Learning Center for Autism in Tyler, TX. These people are amazing. As a result of their tireless efforts, Brynna is walking, communicating and eating FrenchFries. We love our TLC family. Praise the Lord for His provision.
Caveat: We don't need any of this today, though we are in the hospital, but it made me think. Over the past 7 years we have spent many, many days in the hospital, often many in a row. People always ask us, "What can we do?" or "How can we help?". These are GREAT questions, greatly appreciated questions. The problem is, you don't really know. Often you are very sleepy, exhausted and paying attention to your loved one, especially children, and you can't even think about what you need or want. I have posted this before, but thought I would do it again on my blog this time. Here is a short, incomplete list of things that really could make a difference to a family stuck in the hospital.
1. Food. You can't just bring any ole thing to them, though snacks are often appreciated and appropriate, depending on dietary restrictions of the patient and etiquette. For example, it is cruel to bring ice cream to a family member to eat in front of a patient who can't have any, especially if they are awake.
Meals - One really cool thing you can do if you know they will be there for a day or two is pre-pay for meals in the hospital cafeteria for them. Most hospitals now bring the food right up to you, but you have to pay for them downstairs. This can be a really big help. Another nifty idea for extended stays would be gift cards to nearby places to eat. No one likes to eat the hospital food every meal if they can help it. And frankly, you just need to get out sometimes.
Snacks - don't ask them, "do you want some snacks?". They will say no, but will truthfully really appreciate their favorites. Instead, ask "What snacks would you like?". They will still say no, but tell them you are picking up some stuff and want to get the right thing. If they still resist, give them options: Butterfinger or Hershey? Pringles or Lays? When they realize you are doing it anyway, they will tell you and when you are gone, they will love you.
2. Expectations - Don't expect them to keep you posted. In our Facebook world we have come to expect instant information. When you are giving care in the hospital, you can't always do it. Sometimes you can. For example, I am writing this right now in the recovery room, waiting for a room. Watch Facebook and blogs for news. It is easier to put it in one place and have everyone read it than it is to text everyone you know.
3. Encouragement - Let them know you are praying for them. You don't need to get a response, and they may not read it until 2AM, but a quick text or FB post saying "We are with you and thinking of you / praying for you" means alot. (at least to emotive people like me)
4. Recreation - Hopefully you know them well enough to know what they enjoy, but if not, ask. Ask someone who DOES know them, and bring them a book to read or a puzzle to do. However, keep it small. You wouldn't believe how much junk you have to transport and keep up with, especially with young kids. If it can't slip easily into a bag, purse or hip pocket, I wouldn't bring it. (Unless you are like me and take your backpack / man-purse with you everywhere you go)
Another nifty trick, wifi. If your friend isn't tech savvy but has a smart phone or tablet call the hospital and find out how to access the guest wifi if they have it. When you get there for your visit, ask if they want you to "hook them up". They will thank you when they can't sleep and are able to hit Netflix or maybe to do a Facebook update on the status of the patient. This can also be helpful for phone plans that don't have unlimited data. You could be their hero. ( I actually did this for a lady in the waiting room today that had no signal. She was grateful.)
5. Child Care. This one isn't as obvious, but if they have other kids, they worry about them too. Also, if they are like us, they hate to ask for help and likely wont. It is very helpful to have no need to worry about those you have left at home. A well placed sleepover, while stressful for you, is really helpful.
This is by no means an exhaustive list. I would be interested in hearing your good ideas too.
I think the hardest part about Brynna's surgeries is the fact that we can't explain to her what is about to happen, why and what is going on afterwards. She will have no idea why she woke up happy, went back to sleep then woke up again feeling like a horse trampled her face and kicked her in the hip. She will have no idea why she can't eat a French fry for three months, but she will certainly be angry about that. She will have no idea that this is for her good, for her health and that it is really hard for us.While this is the hard part for us, it may be a blessing for her. You see, she will have no idea of what it means to have days of dread and fear. She knows something is going on, but she won't lay awake at night and wonder needlessly about how it will be. She will wake up unhappy and in pain, but every day will be better and every day will bring her that much closer to her beloved French fries.
The happy juice is almost here. Here we go again. She has no idea.
It occurred to me the other day that we scheduled this thing for New Year’s Eve. What a way to ring in the new year, in the hospital. For 7 long years we have been looking forward to this day with more trepidation than expectation. December 31st will be bone graft day. As the parent of a cleft-affected child, we have had many surgeries, many related to the cleft, several unrelated. However, this next one is a big one. This time they will take a piece of her hip and put in her mouth to bridge her missing palate. While in there, they will sew up the last remaining gap in her soft palate, near the back. This is day surgery for most, but Brynna will return to the PICU for at least the night as a precaution. Happy New Year, Brynna!
Every time she goes under it racks my nerves. No one can prepare you for letting them go with the nurse back behind the doors. Behind the doors where you can’t control a stinking thing. You can’t protect her, you can’t hold her hand or stroke her hair. She is in the charge of some special people, oh, yeah, and God. I don’t mean to be flippant, but we really do forget that sometimes. He is there, comforting for us, healing for us, guiding the surgeon’s hands, keeping the anesthesiologist sharp and focused. She will be fine.
Here is the thing, though. Our culture has convinced itself that every time everything works out ok, when the tests are negative, when the healing occurs, when the surgery is over, when everything we prayed for comes true that this is precisely when God has been with us. “He was watching over me today”, we say. As if He wasn’t when we actually did hit the guy beside us on the freeway. As if He wasn’t when the baby wasn’t normal or wasn’t born at all. No, He’s always there watching over us, stroking our hair, protecting us, often from ourselves.
In a culture that has embraced the idea that suffering is to be avoided at all costs, we have as a bi-product, developed a view of God that only really is good when things are going well, and when things aren’t we are quick to ascribe that to someone more sinister. Truth is, God wants what is good for us. He loves us, after all. Sometimes when he allows us to walk deep, deep valleys he is patiently waiting at the bottom, arms outstretched, anticipating that moment when He will envelope us like a warm blanket in winter, rock us while we sob, take it when we curse Him, squeeze tighter when the pain is more than we can bare.
You see, Christians like to twist 1 Corinthians 10:13 and say, when speaking of trials and struggles, that God will not put on us anything we can’t handle. I disagree with that exegesis. That text is talking about temptation. Temptation to sin. Temptation and the common state of man. God puts situations in our way all the time that are more than we can bare. If we could bare them, we wouldn’t need Him. It is in our struggle, it is in our hurt, our pain our suffering that we find out His strength is made perfect in our weakness. His strength is what must carry us because ours is, in fact, not up to the task.
As we look forward to what Brynna will look like this time when she has her face re-arranged again, I can’t help but think of the incredible joy we get to see every single day as we watch the Lord continue to do mighty things through her, mostly in our own hearts.
If you have children you remember the times. You know the ones, when they were little and everything was fun? Every experience was new. Snowflakes, raindrops, blanket forts, you know, milestones. The first time they took a step, when they started eating food for real, the first day of school, and birthday parties. These were good times.
When Brynna was born we weren’t sure about any of these things. Would she even live to see these milestones, to have all these experiences? Who knew. Life with Brynna is hard for sure. She is 7 now.
She has never run through the park, or really run at all. She doesn’t speak to us with words, but, like Dory, speaks fluent whale. She doesn’t really eat anything by mouth, except French fries, Doritos, and Cheddar Popcorn. Her med list looks like CVS exploded and she pokes me in my eye when I'm not paying attention. Sometimes we wake up to poop-ocalypse early in the morning.
However, for all the hardship and all the struggles, every single day seems like another milestone. Another chance to celebrate God’s goodness, mercy, and provision. She is 7 now.
Last May she began attending a special school near our home. A school built for kids like her. She is 7 now and last week she used the potty. (I still use the word potty because my wife teaches 3 and 4 year olds. It’s part of our vocabulary). She used the potty for the FIRST TIME! We were elated. Remember, she is 7 now.
She is 7 now and about a month ago she proved to us at parent’s day she could now match things; bowl to bowl, cup to cup. Every. Single. Time.
She is 7 now and is finally walking unassisted, most of the time.
She is 7 now and asks for popcorn using an iPad that has pictures on it.
She is 7 now and still sleeps like an infant, bottom hiked in the air and covers all over the place.
She is 7 now and cuddles with me every morning when I wake her up. She loves hugs, too.
She is 7 now and plays with her See ‘N Say for hours. Surely they can make these things silent, right?
For all the hardship and all the stress, we are privy to some unforeseen joy. We have set our shoulders for a lifetime of caring for an adult child … a real adult child. Not a child who has become an adult, but an adult-sized child, that’s different.
The unforeseen joy is this: when she is 25, who knows what advances she will have made? Who knows what she will be able to do? It is likely we will be blessed to have an adult child who still marvels at the Fresh Beat Band, who loves reruns of Blues Clues, who wants hugs every morning, who loves to spin in circles outside in the sun, and who continues to achieve milestones other people stop celebrating after a few years.
It will be hard, but will also be joyful.
She is 7 now and the good news is she may be 7 forever. God is good.