This last month or so has just been a real doozy. Lillian has been sick several times, or rather, sick most of the time with tiny breaks in between. GAHHHH. Last weekend I just could not believe she was puking up her guts again. and again. and again. By Friday I was becoming a bit distressed and called the dr to let them know what was going on and I'd be bringing her to sick clinic Saturday if she wasn't better. They had me bring her in that afternoon because nothing in equals nothing out and no pee in a diaper is a bad thing. What I thought ( and secretly hoped) was that she'd caught another flu bug, albeit odd to be having it again so close to the last time...I thought that would be good. Little bit of fluids to get her through a few days and voila we'd be back to baseline. Nope. None of that for my sweet little angel. We get some xrays, the doctor says the xrays "suggest" an ileus. Short story...nothing in the tummy to allow the gut to rest. Hmmm.....have I ever mentioned how tiny Lillian is and how there is NO fat on her tiny body? I elected to keep her home and trickle in fluids as long as she would tolerate it. Now....according to the Dr. this typically happens when there is some type of trauma associated with the tummy. It happened to her before once when a gtube got ripped out and bled profusely. That I get. This time...no trauma and a "suggestion" of ileus. We were able to manage at home and she had little energy, but hey not in the hospital. She is just up to her normal feeds today. PTL.
I, on the other hand, have been in near despair wondering why this happened and is she now going to suffer through this reapeatedly. Not another diagnosis...not another hurdle. Honestly, I'm not looking for sympathy here ( I don' t think) I'm just here to tell you people its hard on a mother. It is difficult and it hasn't happened to me in a while, but I just shut down. I'm weepy and worried. I know God is in control. I know this. Though I shamefully admit to you it has been in my head how does a God of love allow this to happen to a child who has asked for none of it. If all this has a greater purpose or I'm not where I should be in my walk, I'm just not sure what I'm doing wrong here. I share this because it is the way my mind tries to reason it all out. Maybe, just maybe some other parent is out there buried in sorrow and worry and just needs to know someone else is too. Tears overwhelm me as I bare my heart.
I'm just desperate for answers that don't exist. At least not for me, not for today. I'm tired, yet unable to sleep.
Well meaning friends will tell you we are not guarateed a tomorrow. True. But not so easy to swallow when you are in a situation that seems so shaky. (so if you are thinking that or want to say it, please don't...it doesn't help me any. at all.)
Deeper faith. Deeper trust. I know I'm not the first or last person to walk through a difficult time. Some days it just feels like it. (hee hee, that's a lame attempt at a little joke)
Whew!! Feels better to get some of that out. God is good even when I "feel" like He's messing with us. Scripture floods my mind even as I type.
I would like to end on a positive note, Lillian's cat scan was really pretty good, enlarged heart, some scar tissue, but overall good. They did want to order a "vest" for her because of the PCD...did y'all know those things cost 16000.00 dollars. Crikey, almost swallowed my own tongue when she told me. We are waiting for preauth from insurance before they send it. We are not going to go on any profalactive (sp) antibiotics as they did not help. One of her tubes in her ears is already falling out so we need to get back with her ENT.
Please keep us in your prayers.
I thank you for your prayers for my girl. I thank you for standing in the gap. If you could remember a little special angel named Gavin too, I'd appreciate it.