This is a bit of a ramble... but I walked past my refrigerator tonight and a familiar magnet caught my eye. It reads "The Lord is my rock, my fortress and my delivered, my God, my strength, in whom I will trust." Psalm 18:2. It was sent to me by a woman I never met. A woman who prayed for Max every one of those 123 days that he was in the NICU.
She learned of our story from Colonial Presbyterian, the church where Ella wen to preschool at the time, and where Alex went this past year. They are such a wonderful caring congregation. They took us in and looked after us and our children. Most importantly they prayed for us, and with us and over Max. I remember when Pastor Tim, whose son was in Ella's class, came up to see us during that first week in the NICU. He was almost brought to tears just seeing Max and how fragile he was. He was the first person to pray with us. We were praying almost non-stop... but to hear someone else pray for Max, for us, for the doctors... was reassuring. We felt like we weren't alone. He asked if the church and their care team could look after us, and we were thrilled to have them.
In the weeks to come, Sandy Blair came up to see me weekly. Part of the care team, she checked in on us regularly. Sometimes she'd miss me and just leave a note if Max was having a procedure or if I was holding him or feeding him and couldn't move. She was able to come in and see him, praying for me, praying for him, praying, praying, praying. Every week, without fail, I heard from her and I knew that someone was praying with me to meet his needs and ours. I still hear from Sandy from time to time. I know she reads this blog, and I hope she knows how much her unending faith has helped us to get through... just knowing that she was always interceding on Max's behalf... in prayer. And I hope you know, Sandy, how much it meant to me, having someone else there with me from time to time. Those days i the NICU were long, and hard and lonely. I was grateful to have someone to pray with me and help me through.
There were others on the care team, and in the congregation, who sent cards, called and left messages, stopped by the NICU, or left messages on the blog. You'll have to forgive us for not responding or saying thanks sooner... it was a crazy, busy time, and just now, I'm starting to remember all those people who helped us... that I never thanked.
Even now, as I worry about things, with Max, with the other children, with Troy, with myself, I know the importance of prayer in my life... "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6
I can't help but pray. It's where I find my strength... it's how I keep going. I believe that God has an answer and plan for everything. There is so much in my life that I've questioned. So much that I doubted and didn't understand. But I know this much... God intended for Troy and I to be together, to have two beautiful healthy children, for me to have a brain tumor... and for us to have Max. He knew that I was Max's mommy long before I ever met that sweet boy. He prepared me to be stronger than I ever thought I could be. He had a job for me. Never before did I know this purpose in my life. Never have I had such a defining moment.
Max's birth and his life have changed us. It's still amazing to me that we've survived it all. But we have and we are stronger than ever, because of prayer. Our prayers, the prayers or friends and family and the prayers of complete strangers helped us to make it. Thank you to all of you who have lifted us up and those who continue to do so. There is no greater gift you could give us.
Wednesday, June 29, 2011
Back to Work...
Well, I had my first interview today, just over the phone. But I'm looking at several different options right now to go back to work full-time. It's not what we hoped for or planned, but everything has gotten so expensive, and the bills just keep piling up and well, like everyone else, we've made cuts.. but there aren't many more we can make.
So, we need more income and the easiest way for that to happen is for Mommy to go back to work. I've already started the vacation relief work at FOX 4, but we may need something more.
It's a juggle for us to figure out how to make this work. Max's doctor still says "ABSOLUTELY NO" to childcare, so either I work overnights and weekends when Troy can be at home, or I find a position where I make enough for us to hire a nanny to come here and care for Max in our home. We're looking at both... and we're considering every option, even relocation if we need to.
At least if I were gone overnight, Troy would be here with them and we'd avoid any child care cost... but what if they are sick or need something overnight?! How can I say this nicely... Troy needs his beauty sleep. He is not pleasant when he is woken up. I don't like the idea of Mommy not being available if somebody has a bad dream, or a sore throat, or they are puking. Troy is a wonderful Daddy, but these are NOT his strong points. He needs sleep or he is "crabby Daddy!"
Troy is worried that if I work overnight, I'll be the crabby one. I'd be able to sleep once the kids are in bed, say 7:30 until 11. Then I'd be going to work by 11:30 or midnight, so sleep would be a luxury that I wouldn't have much of. It takes a toll on your body and your health. I know. I worked the overnight shift for 8 years in TV and it ages you. My body is not that of a 20 year old anymore. I didn't have the tumor or the migraines then... so can I hack it with only 3-4 hours of sleep a day?
And if I find something full-time in the daytime, then we have to juggle how to get Ella before and after school care, Alex would have to change to a different school and go 5 days a week and have before and after care. We won't be able to have Ella in dance anymore or Daisy Scouts, Alex's soccer or other extra-curricular stuff will be out too... ... and then there's Max.
I'm struggling with this. Mainly because of Max. He still has so much going on that I feel like no one can coordinate his care like I can. I know he's doing great and growing and strong, but he's still that baby that I left in hospital. He doesn't walk yet, he can't talk well, he may still face another surgery. Now that he's mine, I have a hard time letting ANYONE else take care of him. He has doctor's appointments all the time and therapy every week, and we have to work with him daily on the physical therapy and speech and feeding and he has a difficult balance between the formula and fluid and MIRALAX and more... I've seen it every single day of his life and to rely on someone else for that, scares me.
It's a lot that we're working to sort out right now. It's the most traumatic thing we've faced since leaving the NICU. It's hard, but it will be worth it. We know that we are blessed just to have Max with us. God was gracious enough to let us have Max, to keep him alive this far and to sustain us financially until we had him on more solid footing. He has helped us find out way through this so far and we trust that he'll continue to do so.
Pray for us to find the answers to make this work. Pray for all of us to be able to handle the changes that are inevitable and to learn a new normal. We've had a lot of different normals in the past year, but as a family, we've been able to adjust and adapt and stick together to make it through. Pray for the kids. Troy and I understand all this and why we have to make changes, but for kids it's hard. You can't reason or rationalize with them. I dread telling Ella that she can't dance anymore and telling Alex that he has to go to a different school. I can't imagine telling them if we have to move. I don't want either of them to resent us or Max... but we're doing the best we can.... to make it work, for all of us.
So, we need more income and the easiest way for that to happen is for Mommy to go back to work. I've already started the vacation relief work at FOX 4, but we may need something more.
It's a juggle for us to figure out how to make this work. Max's doctor still says "ABSOLUTELY NO" to childcare, so either I work overnights and weekends when Troy can be at home, or I find a position where I make enough for us to hire a nanny to come here and care for Max in our home. We're looking at both... and we're considering every option, even relocation if we need to.
At least if I were gone overnight, Troy would be here with them and we'd avoid any child care cost... but what if they are sick or need something overnight?! How can I say this nicely... Troy needs his beauty sleep. He is not pleasant when he is woken up. I don't like the idea of Mommy not being available if somebody has a bad dream, or a sore throat, or they are puking. Troy is a wonderful Daddy, but these are NOT his strong points. He needs sleep or he is "crabby Daddy!"
Troy is worried that if I work overnight, I'll be the crabby one. I'd be able to sleep once the kids are in bed, say 7:30 until 11. Then I'd be going to work by 11:30 or midnight, so sleep would be a luxury that I wouldn't have much of. It takes a toll on your body and your health. I know. I worked the overnight shift for 8 years in TV and it ages you. My body is not that of a 20 year old anymore. I didn't have the tumor or the migraines then... so can I hack it with only 3-4 hours of sleep a day?
And if I find something full-time in the daytime, then we have to juggle how to get Ella before and after school care, Alex would have to change to a different school and go 5 days a week and have before and after care. We won't be able to have Ella in dance anymore or Daisy Scouts, Alex's soccer or other extra-curricular stuff will be out too... ... and then there's Max.
I'm struggling with this. Mainly because of Max. He still has so much going on that I feel like no one can coordinate his care like I can. I know he's doing great and growing and strong, but he's still that baby that I left in hospital. He doesn't walk yet, he can't talk well, he may still face another surgery. Now that he's mine, I have a hard time letting ANYONE else take care of him. He has doctor's appointments all the time and therapy every week, and we have to work with him daily on the physical therapy and speech and feeding and he has a difficult balance between the formula and fluid and MIRALAX and more... I've seen it every single day of his life and to rely on someone else for that, scares me.
It's a lot that we're working to sort out right now. It's the most traumatic thing we've faced since leaving the NICU. It's hard, but it will be worth it. We know that we are blessed just to have Max with us. God was gracious enough to let us have Max, to keep him alive this far and to sustain us financially until we had him on more solid footing. He has helped us find out way through this so far and we trust that he'll continue to do so.
Pray for us to find the answers to make this work. Pray for all of us to be able to handle the changes that are inevitable and to learn a new normal. We've had a lot of different normals in the past year, but as a family, we've been able to adjust and adapt and stick together to make it through. Pray for the kids. Troy and I understand all this and why we have to make changes, but for kids it's hard. You can't reason or rationalize with them. I dread telling Ella that she can't dance anymore and telling Alex that he has to go to a different school. I can't imagine telling them if we have to move. I don't want either of them to resent us or Max... but we're doing the best we can.... to make it work, for all of us.
Friday, June 24, 2011
Look Who's Crawling???
Bring on the baby gates, throw out the Barbie shoes, and hide the dog dishes! Max is on the move!!!
The ramp, he's after is part of Alex's toy parking garage... every time Max tries to grab it, Alex snatches it away. Well, Alex and Ella are having a sleep over with Papa and Gramma tonight... so Max took off and GOT the toy he wanted! Look out world here he comes!!!!
The ramp, he's after is part of Alex's toy parking garage... every time Max tries to grab it, Alex snatches it away. Well, Alex and Ella are having a sleep over with Papa and Gramma tonight... so Max took off and GOT the toy he wanted! Look out world here he comes!!!!
Saturday, June 11, 2011
Catching up...
Well, going back to work on the weekends has made life a little crazy around here. Turns out I have a lot of catch-up to do during the week... so here's what I haven't posted over the past month...
Alex's 4th birthday (Camp Out party)
He and his preschool buddies Cameron, Ian, Charlie-Finn and Max had a great time, fishing, bug-hunting and roasting s'mores over the fire pit in out back yard!
Campfire cupcakes
Campfire cupcakes
The new swing set (finally complete)
Max's first dip in the kiddie pool (chilly, but he LOVED it!)
Ella's dance recital
Ella's fabulous teacher, Miss Jessica
The boys only made it for the finale, but aren't they handsome!?
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