Coffee CubBuster

I've loosed on my rigid coffee/tea schedule these days because if mama doesn't get her dark black cup of coffee bean juice every morning, she feels as though the world may actually end. Nights are hit or miss with our big man these days. I'm not sure why some evenings are harder than others, but I think that's just the nature of parenting (and life for that matter). When your little one says, "mommy/daddy, please don't leave me," you realize they are dealing with their own bag of growing pains just like you, and it's not fair to punish them for it or expect them to be someone they are not. How is it that you can want to strangle your toddler one minute, and then when they greet you cheerily as the sun rises and say, "good morning mommy. I love you," you forget every frustration they ever caused. Motherhood truly seems to invoke a sort of bi-polar disorder in and of itself. I've always hated extremes, but it feels as if my days are consis...

Everyone has an innate desire to feel loved and needed. I don't think anyone would argue with that fact. Deep down it's how we were created. When we feel unloved or unimportant, that's when we begin to feel worthless and lifeless. I think our ever-growing use of the exclamation point via electronic communication pinpoints our desire to make everything and everyone feel important. I had students who thought it was appropriate to put this end marker after almost every sentence because they felt it was an "important sentence," instead of using it as it's intended: to exclaim with gusto! It is easier to feel like your life matters when you are doing something that the world views as important. A military post, missionary role, or mega million-dollar investor all fall into the category of important positions. People pour their lives into different titles and achievements in order to feel important, but when your life's work isn't glamorous, envied, or a...

When we set up barriers in our lives, it's usually in an effort to keep from feeling something. Currently, Levi has so many uncontrollable barriers set up that it frustrates our ability to connect and really feel like a normal mother and son. His splints, cords, and attached technology make it difficult to simply carry him around like a newborn babe, and my natural maternal guilt causes an unwanted detachment from him. Thankfully, I have become more comfortable disconnecting and disassembling him at various moments, with the approval of his pediatrician, and allowing myself more opportunities to trust my instincts and love on my little one without all the barriers. I know that others have walked in my shoes before, and I know it's possible to live a semi-normal (albeit tired) life with Silas and Levi right now, but I think the uncertainty of Levi's future keeps us all a little more tense. If we just let go of the protective barriers and realize that none of our children...

I'm not sure why there's an expression, "the ugly truth." Isn't the really "ugly" stuff actually the most beautiful because it's the most real, the most honest, the most true? Well, I'm not talking about when someone who hasn't slept much in three days (you're looking at her), asks her husband whether he still thinks she's beautiful. No, that's just sweet fibs. I'm talking about those thoughts and feelings that we all have, but many of us don't want to admit them. Well, here's some good truth, some bad truth, and some ugly truth for you today. Because in the end, there's only truth. Good- Levi's eyes turned brown! That's a normal milestone! Bad- Silas has regressed in almost every area of life that he ever grew in before Levi was born. Ugly- Levi's button site looks red again so we are headed back to GI for a consult this afternoon. Good- Having Mathew home has been the biggest blessing I could ...

Somehow it happened. Through the fog of yesterday, we arrived home after sitting in 5:00 Atlanta traffic! There's been such a delicate balance of rushing to get Levi where he needs to be, but responding with slow and steady gentleness. While we are exhausted running on just a couple hours of sleep (his monitor went off throughout the night whenever he moved along with changing out feedings every two hours, and finally having the monitor die at 5 am), but Silas slept through the night, which was an absolute gift from God! With measuring meds, figuring out how to balance two kids at home when one could stop breathing at any moment, and scheduling follow-up appointments, one would think I'd be checking into a home myself, yet surreal joy encompasses our uncertainty. And because God has delivered us from so much already, we know he'll continue to provide us with the stamina and wherewithal to continue. I think my favorite part of the past 24 hours has been watching Silas ...

It's looking like Levi will be coming home tomorrow afternoon! While I'm not going to do a dance until he's in the back of our car, we are making detailed preparations for a discharge tomorrow. They have decided to send Levi home on an one-eighth of an oxygen tank, which we can use on an "as needed" basis along with two more meds (diuretics) to help with his fluid retention (one of which is apparently on a nationwide shortage, so I'll have to crush up my own pills to push through his tube since they don't have the liquid form!).   Man I think I'm ready to be a pharmacist, therapist, and nurse now. While there is a lot of juggling involved with discharge, we are grateful to have everything we need in place right now, and I think it will be a blessing to have the oxygen for those "scary" moments at home. We still have quite a journey ahead of us, and I'll try to update whenever possible, but know that we are beyond grateful for all yo...

Levi's First package. A kit for us to use in case his G-tube comes out.... hmmm I think he'd rather have some new socks, and I'm pretty sure we'll just take him to the doctor for that procedure. Sweet boy sleeping soundly at CHOA. Got it put up in his new changing station/closet. The sign was hung, the house was cleaned, and I started packing his clothes at Scottish Rite to bring him home! Then his nurse walked in and said, "So..... he didn't have a very good night. The doctor wanted to talk to you because I don't think he's going to let him go home today." I doubt the sweet nurse new that she had just taken my insides and jarred them to pieces. We've been praying for God to bring Levi home in His perfect timing, so I had to assume that it just wasn't perfect yet. Although, the longer we wait to bring our baby home, the harder it feels like it will be when he gets here. Matthew and I haven't seriously talked about adopti...