Friday, April 8, 2011

On emotions and things...

It's amazing all the little dynamics that go along with having a daughter with NF. There are ups and downs, what ifs, and possibilities that consistently leave us having to learn how to deal with the emotions of it all. But this week is met with much different thoughts and emotions. Mama's perspective: The night before the surgery, and even while sitting in the hospital room before they took her into surgery I remember thinking multiple times 'we can still back out.' But we didn't. Jason was the only one allowed to go back while they put her under. I sat and waited trying hard not to cry. And then he came out with tears running down his cheeks and so I cried too. And then we went and sat and talked about lots of things other than the surgery. When we went and ate breakfast though there was a fleeting moment where the image of exactly what was happening in surgery entered my head and I thought I might lose it again, but didn't. After surgery there was the happy and calm feeling of being able to see Abigail again and know that she was okay. Hearing the surgery went well, holding her, and watching Sesame Street together all made things feel like the world might be okay. But then over the last few days as she has had lots of pain, been cranky, unable to walk at times, and just not her normal self it has wore on me. I wonder if we made the right choice. I feel guilty and sad. Seeing her in pain makes my heart break. But at the same time I feel elated. I look at the last month of our lives, watching the finances for the surgery pour in, being prayed over at church last Sunday, the phone calls and e-mails we have gotten, the incredibly gracious family we are staying with, and the feeling that our daughter may have been given a second chance at some part of childhood all merge together, and I am left feeling full and happy. At moments I feel like I may actually explode with the amount of God's goodness we are experiencing. And lastly is that twinge of fear holding on. That knowledge that there is some slight possibility that he didn't get the whole tumor. The waiting to hear biopsy results that didn't come in when they were supposed to; leaving us mulling over the possibilities all weekend. All of these things sort of mix together for this jumbled mess of emotions that leaves me uncertain about what I am feeling, what I should be feeling, and what the next moment will leave me feeling. Papa's take: I'm kind of exhausted. It was smooth sailing getting to puking, made great time, traffic wasn't an issue (I love driving here!), etc. The meeting with the surgeon went fine, though it did seem kinda odd that our two year old was having surgery performed by a doctor whose office was full of brochures on face lifts, liposuction, breast augmentation, etc. and stacks of magazines so you could see what "real beauty" looks like. Anyway, the meeting itself went fine. I didn't really know what to expect with the surgical procedure since I've never had surgery and have never really dealt with one before. So, when he showed us some photos of a similar surgery he had performed, I wanted to gag. Needless to say, I'm glad I'm not in the medical field...and thankful he is. That night, Abigail didn't sleep neither did we, since we are sharing a room for the time we're here. The morning of the surgery came early...up at 5am central...which isn't a lot earlier than I normally get up I guess, but still seemed EARLY. At the hospital, all the nurses, secretaries, etc. we were dealing with kept reminding us of the money as soon as we signed in at the front desk. It kinda pissed me off...I guess it is a business, but it made me feel like they didn't care about us; the just wanted their money FIRST. So, I spent about an hour trying to straighten things out with the financial lady, even though it had all been hashed out on the phone already with Andrea. The surgeon was to meet with us at 7:30 and the surgery was to start at 7:45. I was getting pretty antsy at about 7:25 when I was writing checks and making everyone happy. It was incredibly humbling to write a check for $10,000 for the hospital and $1,200 for the anesthesiologist...knowing how many people helped make it happen. We'll get accurate bills soon from the hospital, so the 10K was just to get them to do the surgery that day. The surgeon was paid in full the day before for 7K. Blah, blah, money. So, I was in a hurry to get back to see Abigail before they whisked her away. I made it, and had a few minutes since the surgeon was running a little late. I thought I'd be okay going back with her for anesthesia...turns out I wasn't. I had to wear disposable scrubs, hat, and mask to go back. I thought it was weird at the time, but realized why when they had me carry her back to the surgical room and lay her on the table where they would perform the surgery. That was kind of when it was all really sinking in. They put her under a little different than Riley does. At Riley they lay her down and she is out in 10 seconds. They had her sit up here, and it took about 2 minutes. The worst part may have been that I couldn't kiss her. That freaking mask! I kept trying to kiss her on the head though. I was in tears the whole time...not thinking that they would hurt her, but maybe more that it was all completely out of my control. I was powerless. I am powerless. To make her healthy and without pain. The surgeon did his part and we'll wait and see how well it turns out long term. But I'm am constantly amazed at how God did His part. He made a way years ago for us to have a place to stay here in Chicago. He made a way for Abigail to be our daughter. He made a way for us to live so close to one of the best surgeons in the world for such complex surgery. He made a way for us to cover all costs without insurance. He made a way for Abigail to hopefully grow up with greater use of her leg and no pain or malignancy. Only time will tell on the last part. My mom was at the hospital during the surgery. We sat in the waiting room (Andrea, my mom, and I), for a few minutes, but then went to the cafeteria to eat breakfast. I was doing all I could to keep from crying the whole time. Surgery was to only last about an hour. I kept getting choked up, even eating my first ever serving of corned beef hash (which I didn't care for). We made a stop by the gift shop and then went back up to the waiting room. My phone rang as we approached and turned to see the surgeon waiting for us. He jumped right in and said he didn't want to keep us waiting and that she was doing great! WHEW!!! I wanted to hug him...but didn't. From that moment on things have seemed much lighter. We've been trying to enjoy Chicago as much as we can, but are really trying not to push Abigail too much and help her get some much needed rest. So, between it all, like I said in the beginning I am exhausted. It's kinda the same feeling of being drained after you've done something that takes a big adrenaline surge (like lifting a car off of somebody). I haven't done that, but emotionally, I feel like there is very little left, except thankfulness. I'm thankful for being blessed with more time with Abigail. I'm thankful for our brothers and sisters in Christ who have stepped up in countless ways to make our burden lighter. I'm thankful for His grace, mercy, and goodness, even if we don't deserve it. Mama's sum up. Overall, we are both emotionally drained and tired, which makes interacting with a two year old who is out of her element, tired, and in pain a little harder. And obviously we are both also extremely grateful that we get to be sitting here walking through all of this with so many people around us who love us! We will try to update next week when we get the biopsy results, and I'm hoping to do a 'cago' post with pictures and stories about all that we have done while we are here (taking advantage of free days at museums and such). Tired and thankful,


  1. thank you for sharing

  2. Continued prayers for a complete, speedy recovery and good biopsy reports. God is good and has provided so much for our families.

  3. From Israel:
    Abigail, I don't...I don't know what to say. I wanna tell Abigail sorry that her leg hurts. I wanna say, "I miss you." I also like to say, "I love you, Abigail."

    Jesus, help Abigail's leg to heal faster and help her feel better. Amen.

    From Eden:
    Jesus, thank you for Abigail.

  4. I understand about lifting a car off someone (emotionally). I have felt that way since March 30 when Joey had HIS surgery!

    Didn't even have the brain power to read THIS post until today. Glad that I did though. Glad to hear that Abigail is doing good. Glad to hear you guys are holding up.

    Take it easy