Eden is 3 months old today! Wow- it has gone so fast- partly because she's our fourth, partly because we've been in a bit of a tunnel, and partly because we're making it one day at a time.
In truth, the past two weeks have been very hard. We've struggled with finding the right formula- one made her constipated, another caused too much reflux. We've struggled with way too many appointments, not enough sleep, and a baby that cries almost constantly when she isn't being held. We would worry about any baby that cries a lot (even though some babies just cry a lot), but because of her condition, we're constantly asking if she's in pain- is her feeding tube the wrong size, is this normal aspiration or too much, is she having seizures (what is that even going to look like in a baby- will we know?), can we just let her cry (is that even safe for her?), and the list goes on. She's doing well and yet she's fragile, so when she struggles we wonder if this is just her getting worse.
She will have good days and bad days (and we've experienced both), but she will not get over this- this isn't just a phase. There is no treatment, there is no cure, no exploratory medicine or therapy- just working with what she has and hoping to maximize that and keep her as happy and comfortable as we can. In some ways, there's freedom in that kind of diagnosis- we don't have to spend hours searching for specialists or have the burden of finding the just right care or treatment that she needs. We just need to love her and take care of her for as long as we have her. But the days and nights can be very, very hard.
Two take aways from this, stemming from one truth: God often does give us way more than we can handle (the popular phrase that he doesn't give us more than we can handle is dead wrong), but there are at least two reasons why he gives us more than we can handle.
One is to make us depend on him. In 2 Corinthians 1:8-9, Paul says, "we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead." I have often been burdened beyond my strength and I have despaired of life itself, but it's teaching me to look away from myself and to look to God who "raises the dead". Sometimes that "raising" comes in God providing the strength to bear up under the trial, to have joy in the midst of it, to run that feed one more time even though she may scream a solid 45 minutes during it, sometimes it's merely giving me the ability to just put one foot in front of the other, and sometimes it's sending women to come and clean my toilets, which leads me to a second reason God often gives us more than we can bear.
We are given more than we can bear so that others can minister to us and the beauty of the church can be shown, to the glory of God. We have been the recipients of so much love and kindness over the past months. We have received countless cards, gifts, flowers, meals (I think we were brought over 50 meals!), notes and texts of encouragement, and prayers from people literally around the world. Yesterday was so, so hard- Eden slept about an hour all day, cried most of the day, and we were all a wreck (okay, mainly I was a wreck, but when Mom's a wreck, it's hard on everyone). And in God's providence, today a group of women came over and cleaned our house and brought a meal. A neighbor girl came and played with the boys (for free! because she wants to help). Many people texted and messaged me to say they were praying for us. And today was much, much better. I was at the end of my rope and God provided the help and rescue that I needed through the kindness of others.
It isn't easy to ask for help or to admit that I need it- I'd rather be the one serving, bringing meals, and supporting someone else. I'd rather be able to take care of everything on my own, but I'm not able to do that right now. Right now, I'm the recipient of all of this kindness, help, and support, from God and from others. And it's a bit humbling and overwhelming.
So, thank you- thank you to all that are praying for us, helping us, and providing for us in many practical ways. Thank you for extending grace to me when I haven't returned your phone call or texted you back or sent you a thank-you- I will get to it, I want to get to it. All of your kindness is seen and appreciated, and I wish I could hug you all and tell you how much it means to us.
I'll end with some family pictures- again, gifted to us.