Saturday, June 25, 2011
On a lighter note
Penned by Melynie at 4:05 PM 56 love notes
Labels: life as we know it, oh baby, pertaining to kids
Sunday, June 19, 2011
I'm exhausted on so many levels from this past week. I can barely keep my eyes open, but I continue to sit in bed beside sleeping J and play the silly bubble breaker game on my phone. I don't know why, until I figure out that I'm afraid to go to sleep. The video monitor perched on my night stand is breathing a slow, comforting sound and I can see my girl is fast asleep, hopefully dreaming sweet things. It's a calming sound, and one I'm afraid to not hear.
Through this ordeal, I've never thought "Why me?" I understand that things just happen, and it's to our growth or detriment how we handle them. I have, however, thought "Why her?" If there's anyone I know that can learn to be like Christ without the mountains of trials that the rest of us require, it would be her. She's so sweet and good, and it seems utterly unfair for her to pass through this. The most unfair place in the world? A children's hospital. While I love the fact that hurt and sick kids get to have a hospital with starfish on the walls, the fact that kids don't get a 'free pass' through childhood breaks my heart. On my best day I could walk through a children's hospital and see babies lying so still, and cribs in the ICU and bawl my eyes out. They haven't even made any life choices that would land them in a place like that, yet they must begin their existence with adversity. The toddler in the neighboring ICU bed was barely spoken to by parents that briefly visited. It made me want to scoop her up and love on her. Kids are so brave, but I wish they didn't have to be. Of all the injustices in the world, this must be the worst.
I can see the stress in me. It plays out in funny ways, but I know it's there. I couldn't just let Father's Day pass despite our week, so I ran to the mall last night to pick up a few of J's favorite things. Part of me just wanted to shop. Shop and shop and shop. Of course that's a little normal :), but I wanted to shop and buy pretty things, and pretend my life was normal and calm. A little escape from reality. My whole body is tense, maybe from feeling like I will be holding my breath for the rest of my life. We don't know what will happen in the future with Girlie. All the whys and what happens nexts are answered with a frustrating "We just don't know."
We all went to church today. We were met with hug after hug after 'we've been think of you and praying for you' after teary squeeze. Each one melted a little ache away. We've felt so loved and supported from all our friends and neighbors. It means so much to receive heartfelt emails and messages.
Girlie seems to be doing very well. She doesn't remember any of the actual seizure, which is a huge blessing. She's as lovely as ever. J and I don't have much of a defense where she's concerned. The girl could ask for a puppy and we'd oblige. I am not kidding. And I am not a pet person. She could ask for a stinkin' pony and I'd probably move us out to the country and buy five. Please don't tell her that, though. I don't feel like packing.
Despite everything, though, I somehow feel as if I can't be anything but happy for life now. Miracles happen. She's here, and we're all together at home. It doesn't get better than that. We've got summer ahead of us, school is almost out. She'll be attending tomorrow until a doctor's appointment in the afternoon. Holding my breath about her being out of my sight, but I know she's missing her friends and teacher. Forward we go.
I feel better just getting stuff out there. Thanks for all the comments. They really mean so much. I consider each a personal hug and value all our friends that we have scattered around the country. It's funny how sharing burdens with those you love makes them that much lighter.
Penned by Melynie at 11:43 PM 9 love notes
Labels: life as we know it
Thursday, June 16, 2011
Together
I am sighing a contented sigh. It is evening, and my babies are all asleep upstairs. Girlie was discharged this evening, and we are all together again. She had her MRI today, which came back normal. A HUGE, HUGE, HUGE relief because it meant no brain damage. I was honestly preparing myself for that. It also gives us no cause for the seizure, so that remains a mystery, but I'd rather have the mystery and the healthy brain.
She is doing well today. She could walk reasonably well by afternoon, though not for very long. She was beyond excited to come home, and getting very bored (I was thrilled that she was bored, because I took it as a sign that she was returning to 'herself'). The boys and Sweetie were ecstatic to see her, and she them. Once she got home, I felt that she improved greatly. I sat in the playroom and watched them play together, and my heart just about burst with joy. Her walking became much more steady, her voice seemed mostly normal. In fact, by the time she went to bed, she seemed more just like a tired version of her real self.
It will be an adjustment. We had a family talk about our new normal. New normals suck. (I know, it's totally a potty word for me). We were as positive as we could be about the changes. For the next several days, Girlie needs supervision when on the stairs. For the next 6 months, no bike riding, swimming, bathing, climbing, swinging--basically anything that would endanger you if you were to lose consciousness while doing it. We'll be getting a video baby monitor and probably never sleeping a good night in our life again. She will be on twice daily anti-convulsant medicine. As Girlie put it, "Dad, a seizure is a big job." She listened quietly during our meeting, then had J take her upstairs and I heard sobbing from her room. I think all the reality of it (even understanding what a seizure is) came crashing down on her.
But at the end of this day, I have what I pleaded to God for: to have my girl back. My heart is so full.
Penned by Melynie at 10:11 PM 10 love notes
Wednesday, June 15, 2011
Today was better. Girlie had an EEG today. Her speech continues to improve and occasionally she almost sounds like her old self. She is a little sturdier when sitting, and doesn't continue to ask the same questions. She even used the potty today, with full assistance. Walking requires assistance also, but she was able to eat on her own--regular food!-by later in the day. She could now hold a book, and could focus her eyes by afternoon. We wheeled her to the play room of the hospital where she was delighted to pet a therapy dog. Progress was slow, but she had been given a lot of drugs to stop the seizure, so it makes sense that they are taking a long time to wear off. We're hoping to go home tomorrow, but the doctors want to make sure she can walk and function before she leaves.
She is much improved from yesterday, but still appears a weaker, younger, drunk version of herself. Very disconcerting to her mother, but the doctors say they have no reason to think there's any brain damage. If she can hold still, there will be an MRI tomorrow. They, thankfully, don't want to sedate her for it. If she can't hold still, we'll come back for an outpatient visit. She is still gracious, as ever. Thanks all the doctors and nurses. Gets teary when we tell her that people love her and are praying for her. Tells us we're the best parents she can imagine. We look forward to her expected full recovery. J has been living at the hospital with her since Monday night, bless his heart. He's amazing, truly. I have been going back and forth between the hospital and taking care of the other three.
Once again I am completely overwhelmed by the kindness of sweet friends and family. I appreciate every message, call, text, email, prayer, meal, watching my kids, cleaning my house, bringing food for us. We feel so loved and supported. We feel so grateful for true friends. We are grateful for eternal families, and that we've still got our sweet girl.
PS: Our darling baby turned 1 yesterday. We'll celebrate when we're all together.
Penned by Melynie at 11:11 PM 7 love notes
Tuesday, June 14, 2011
My sweet girl had a seizure late last night. I found her at about 11:40 p.m. as I was tucking them in one last time before I went to sleep. She had one 3 1/2 years ago, but it was nothing like last night. It was long, and much worse in a lot of ways. She finally woke up at about 10:00 a.m. this morning. We had both anxiously been waiting for this all night long, so we were right there at her side telling her how much we loved her. The first thing she said was "I love you Daddy. I love you Mommy. Can we go home?" She was so small and delicate. J leaned in to kiss her head and she wrapped her arms around his neck.
She was very groggy today. She struggles to do most things, since she was so heavily sedated and the medicine is taking time to wear off. Her speech was faster and clearer tonight. By dinner time, we even tried to do some clear liquids. The nurse asked her if she'd like a popsicle and some jello for dinner. She said yes, then asked, "Can I please have a healthy option now?" That's my girl.
Tomorrow will bring an MRI and an EEG, and a discussion about long term solutions. There's been a lot of emotion in these last 22 hours. Boiling desperation as the ER people wouldn't let me see my daughter, frantic fear and the thought "No, no, no, no, no, no" going through my head, my heart breaking to see the masses of tubes coming out of her, choking, tearful sobbing in front of anyone and everyone today, and a fervent hope that this is all a bad dream. There's also humble gratitude (gratitude is not actually a big enough word, but it's the only one I have) and love for the people who have already selflessly reached out to serve my family in so many ways. The still small whisper of "Be still, and know that I am God" answer that I got in response to hours of heart wrenching prayer. Thanks to those offering prayers on our behalf. I feel them. Please keep them coming. Thanks for the sweet messages and texts that have touched my heart; they mean so much to me. Sorry I haven't responded yet. Because, like a child who cries their heart out and then falls fast asleep, I am exhausted.
Penned by Melynie at 9:18 PM 10 love notes
Friday, June 10, 2011
Potty Words
Penned by Melynie at 10:02 AM 1 love notes
Labels: ki, life as we know it, pertaining to kids
Sunday, June 5, 2011
A Perfect Day
We enjoyed yummy, beautiful refreshments.
Penned by Melynie at 11:53 AM 10 love notes
Labels: life as we know it, pertaining to kids
Wednesday, June 1, 2011
Way more pictures of us than you want to see {Early April}
Penned by Melynie at 12:42 PM 1 love notes
Labels: life as we know it, vacation