Monday, March 30, 2009
Maddie is such a mature girl for her age. She went to one of our friend's houses afterschool today to help with her kids. She brought these chore charts home and we put them together this evening. They all love them - and I like them, too (I don't have to print off a new one every week). Anything that keeps them motivated on their own and keeps me from repeating myself 15 times is good in my book (it's called "I did my chores" if you are wondering). We'll see how they work out over the next several days.
Carter wasn't feeling well this morning and was so convincing that I let him stay home. He was much better by afternoon. We have a rule here that if you are too sick to go to school, then you can't play games or get on the computer. He knows the rule. Late this morning he called me from the other room and said, "Mom, this guy had a program on TV and said if you're feeling really sick it will make you feel better if you play a game." I said, "Really?" a bit sarcastically. He tried to tell me he was serious. I just reminded him of our rule. He'll be back at school tomorrow.
Chloe is still playing with her babies. She'll usually tell me, "My baby in the hosapaytal, but she not die. She come home." Sometimes she says, "My baby have surgee." (surgery). She likes to dress them in Maverick's clothes and drag them with us wherever we go. I've asked her what she wants to be when she grows up and she says, "A momma." She's at such a sweet age.
Speaking of momma's, my mom is coming to visit this week. I'll be glad to see her. I guess this is enough for tonight. Love you all - jc
Sunday, March 29, 2009
Later this afternoon I went to the cemetery. The dirt is starting to settle on Mav's grave. It's so sad. I can't explain why, but I just feel like I need to be there. Today I noticed some things I hadn't noticed before. The tree that's close by was shading Mav's (and several other's) grave. There were a couple of other fairly new graves in Babyland (that's where Mav is buried). As I looked around I noticed several of the tombstones just had one date on them. I was thankful that I had five months with Mav. Long enough for him to develop quite a personality. Long enough to still have his sweet little face etched in my brain. Long enough to hold him more than once. I just wish we could've taken him home.
Last night we heard a helicopter overhead and Chloe asked about where the people went (she assumes all helicopters are medical-related). I told her they take them to the hospital. She said, "Where Maverick lives?" It's hard to think that yes, he did live there. She still prays for him to get better and come home. As she was climbing in her car seat a few days ago she screamed out, "MAVERICK!" I looked at her and asked why she did that. She said, "He up in the sky, right?" I said, "Well, yes, he's in heaven." "Wis jedas?" she asked. "Yes, Chloe, with Jesus."
I've been sleeping better lately, but I haven't had anymore dreams about Maverick. I actually prayed last night that I would have one. There's just something comforting about them. I can't imagine going through this and not having any support - no husband or other kids. Carter has been calling me all kinds of funny names - sweet cheeks, Jules, sugar momma, I don't hear "mom" much anymore. They keep me going and help me smile. Love you all - jc
P.S. I've had a few people ask so I thought I'd let you know - my application for nurse practitioner school was sent off yesterday. We'll see what happens.
Friday, March 27, 2009
It's been cold and rainy all day today. Chloe and I were home together, Greg was at work, and Maddie and Carter were at school. I briefly thought about taking the crib down, but then decided I wasn't ready to do that yet. It's just another confirmation that this chapter of my life - and Mav's life - is over. There was a consignment sale in town today, so I thought Chloe and I would go and I would get her some summer clothes. I have been to this sale before, but didn't even consider the effect it would have on me. I walked in and immediately saw a ton of baby paraphernalia - boppys, breast pumps, bibs, swings, bedding, strollers, etc. I just stopped for a second as my heart sank, realizing how just one year ago I was at this sale looking at maternity clothes. This year I don't need them or the baby stuff. It was just a sad reality check.
You might think, "Well, you could have another one." Honestly, I've probably thought that myself when someone has lost a baby or miscarried. I'm convinced that a person says this with the best intention in their heart, but they can't truly realize the hurt it causes if they haven't been in this situation. Another baby won't fill the void left by the one that was lost.
I hopped in the tub tonight to soak and get my mind off things, but realized I can't sit and let my mind go blank like I could in the past. I'm always talking myself through something or replaying a memory or wondering "why" or "what if?". I deliberately made myself stop and think about the things I'm thankful for. Our family, our friends, our church, the length of time we had with Maverick, the wonderful people who took care of him. Did it help? I'm not sure it did this evening, but I remember several times when Mav was so sick and it seemed like all I did was pray for his healing. I would be reminded to thank God for the blessings I did have in the midst of all the difficulties. It seemed like every time I did, things would look a little brighter the next day. Maybe that will happen this time as well.
Thursday, March 26, 2009
The kids are doing well. I'm so proud of them. I'll share a Maddie story today. When we were coming home from the cemetery on Monday, she was talking about kids her age and how so many of them don't realize how blessed they are. She went on about the things they obsess over and said, "They don't realize how unimportant all that stuff is. I mean, there are children in Africa who only eat one meal a day and have to go all weekend without food." We have friends who went to Africa with Feed the Children over spring break and they shared their pics and stories with us the other night. I think that has weighed heavily on her heart since. I thought that was a sweet story about her. I need to start telling stories about her and Carter more. I think they may get tired of the Chloe stories.
Greg and I were talking tonight about Maverick and how we miss him. He told me to smell the back of Mav's monkey. That's the stuffed animal he had for a long time - he liked to feel it. I did and it smelled like little Mav. His monkey and frog are still sitting in the living room on a table. Last week I hung a picture of him and his hand and footprints in the hall. My phone is finally sending pics again, so it should show up tonight. Love you all - jc
Wednesday, March 25, 2009
Chloe and I finally ventured out to Walmart on Monday. We went around 12:30pm. It wasn't too busy, thankfully. I didn't notice very many babies there - I think it must have been naptime for many. I didn't hear anyone screaming at their kids either. She wanted to take her baby and her stroller into the store. I let her. She was much happier walking around pushing that stroller than she would've been if I had tried to make her sit in the cart. That's a good secret for a shopping trip with a three-year-old.
Well, I really don't have much else to say tonight. I'm feeling a little better this evening, so I don't want to get the water works flowing again. Love you all, jc
Tuesday, March 24, 2009
Seven o'clock, laying beside Mav in his crib. Several times throughout his last night he would try to open his eyes, but couldn't due to the swelling. When I would see him try, I would tell him, "It's okay sweet boy, momma's right here." I was either holding his little hand or foot the entire night. I'm so glad I crawled up in that crib. Greg and I have always let our babies sleep with us, and it was just killing me to think of him sleeping alone that night. At first I was hesitant, but then decided to not care about what anyone thought. I knew his time with us was limited. Greg took some pics and video that night, but I haven't been able to look at them yet.
Eight o'clock, rocking Mav. Shortly after his morning assessment, his heart rate started to slow. I had to hold him. I read him "Brown Bear" for the last time. We listened to lullabies and Greg and I talked to him until he passed away.
Eight fifty, Mav died. I just looked at the death certificate for the first time yesterday. I wasn't sure exactly what time it was until then.
After that, I held him awhile longer. Then Greg held him. Then we did footprints and hand prints. Then our friend, Jay Cooper, from the funeral home came. Greg walked out to the car carrying little Mav in the silky blanket we had been holding him in, and buckled him into a car seat in the funeral home vehicle. That was his first time in a car seat. I stayed in the room in the PICU and started bawling looking at the empty bed and all the toys and stuffed animals left behind. Some of my Mediflight friends came by when they heard the news, and some Neoflight friends came by to help pack up all his belongings. I remember crying with my friend, Carol, who said, "We all felt like he was ours." My work friends would usually come by everyday to check on him.
I remember leaving the hospital feeling an overwhelming sadness and sense of disbelief. Could this really have happened? This was the end to our five month battle - to Mav's battle? It all just seemed so wrong. Really, it still does.
Needless to say, today has been pretty rough. I've cried with just about everyone I've come in contact with. I had a chiropractor appointment this morning because my neck and shoulders have been bothering me and I've been having more headaches. The poor guy - he asked if I had been injured or what had brought this on. I said, "I'm sure it's just stress." Then I started crying and told him about losing Maverick. He just kept saying, "I'm so sorry" which made me cry more.
Maddie and I went to the cemetery this evening and put some more flowers on his grave. The other kids didn't want to go, so Greg stayed here with them. We'll probably start looking for headstones in the next week or so. Just talking about that makes me cry.
I have a busy couple of days ahead. That's usually good for me - keeps my mind occupied. Thanks for your continued thoughts and prayers. Love you all - jc
Sunday, March 22, 2009
We went to Sunday school and church today. It's the first time we've been back since Mav died. Things went pretty smoothly. I went into the sanctuary after the music at the beginning of the service - Greg saved me a seat. For some reason, a lot of songs make me cry, so I just decided to skip the singing. We sat at the back. I could see Pastor Todd fine, but all the people in front of us precluded my view of where Mav's coffin sat. I think that helped. I had to leave a little early when the singing began again, but all-in-all, it went well. It was nice to see all our friends who have been so supportive throughout Mav's life. I cannot even begin to tell you all what a wonderful church we belong to. If you're looking for one in Shawnee, consider Immanuel Baptist.
So, if you're wondering who this cutie is in the pics it's my niece, Addison. Heather and Justin (my sister and her husband) came to visit this afternoon with her. They asked us to be her godparents - what an honor. Chloe was being quite bossy to Maddie and me during her visit. She told Maddie to be careful while she was holding her and was coaching me on burping her. She's so sassy. Carter missed out. He went to a friend's house for the afternoon. I think he probably enjoys playing basketball and xbox more than holding a baby, though.
The kids have been asking to go to Mav's grave with me, so I was planning on taking them this evening. The girls and I went to pick up Carter around 7:00, but I ended up visiting there until after dark. I think we'll go to his grave on Tuesday. It will be one month since his death - it's so hard to believe. I'm planning on doing something productive that day. I'm going to get my paperwork in order for admission to graduate school. I'm applying for a pediatric nurse practitioner program. If all goes well, I'll be able to start in the fall. Hope you all have a great week. Love you all - jc
Thursday, March 19, 2009
This post is actually from Sunday morning at 12:38am. Greg sent this picture from his phone Thursday, so that's the day it put on the post. It's been on the blog previously, but I'm putting it on anyway. It's the last picture I have of all of us together. Yesterday (Friday) was a pretty good day. I slept in late due to a headache, but was fine the rest of the day. Greg and Carter went to a basketball game - thanks for the tickets, Jason and Polly. I went to a birthday party for one of our friends. Last weekend Greg and I talked about being with larger groups of people. He's not quite ready for it. I like the distraction. There's something about being in a group of friends - having a normal conversation - that's good for me. I'm not always in the mood for it, but it's nice when I am. Sometimes, if I'm having a bad day, that's the last thing I want to do. Today was one of those days.
I look at this picture and know that I still had hope for little Mav. I may have been the only one, but I did. I'm glad I did. I've thought about that often. Knowing everything that I knew about all his conditions, I still didn't let that take the hope away. I know God helped me keep that hope. Why? I'm not sure, but I do know it would've been terribly depressing going to the hospital day after day if I knew he wasn't going to survive. So, that's another one of the things I've learned from Mav. You have to have hope. If you are someone going through something similar to this, don't let anyone take it away from you. If you are one of my medical friends, don't take it away from someone else. I'm not saying to deny reality and live in a delusional world, but if there is something to have hope about - regardless of the statistics - hang on to it with all you've got. You have to to get through something like this.
With all that said, it sounds like I'm in a pretty good place right now. Honestly, I'm not. I have been crying on and off all day. I just hate that this has happened. I miss my baby. These things aren't supposed to happen. Why didn't God heal him so he could come home? These are just a few of the thoughts running through my mind right now. Greg and I were talking about things tonight. He's been reading through the comments on the blog and mentioned how many lives Mav touched in his short life. It's so encouraging to hear your heartfelt stories and read your comments. I truly treasure them. Greg also commented on how Mav is now healed - no sore bottom or scars. Right now, though, those things don't ease my pain or make my tears stop falling.
I've been trying to focus on my other kids to help me get through this. Today they've been fighting a lot and complaining. My temper has been a bit short, and I find myself telling them, "You have nothing to complain about!" I think to myself that they are healthy and not in the hospital; they have us and each other; they have too many toys to play with. How can they complain?! Because they are kids and they don't realize what a blessing normalcy is. I'm realizing as I type this out that I should be thankful for their normalcy - bickering, complaining and all. I should take it as a blessing and be thankful for it. At least I can hear them scream and cry. Love you all - jc
Today was Chloe's first time to skate. She did really well, and they all had a great time. She said some of the sweetest things today. I've always done this thing with my kids where I say, "Who loves you?" Then sometimes they tease me and tell me other names and I keep saying, "who else?", but they know the answer I'm looking for is, "you." I said this to Chloe today and she said, "You." Then she paused for a moment and said, "You love me aalllll day long." Awww, how sweet. The other thing happened when I asked Carter if he wanted to spend the night with a friend tonight. He did, of course. Chole said, "Carta, I weally miss you when you spend da night wis Kirk." I wish I would've written down all the sweet things Maddie and Carter said. I'm trying to keep the kiddos - and myself busy this week. I'm determined to try to keep life enjoyable for them, regardless of how sad I feel. It's still been tough, though.
I was so happy to have the blood drive last night. It made me feel like something good is coming from all this, but when I got home I was exhausted. I was getting a headache - they seem like they're coming more frequently (I'm sure it's just stress). I just went to bed. I have another one tonight.
I've been thinking today about what kind of charity I would like to get involved in at some point. That's one of the things I keep thinking - that somehow, I have to make this into a positive. I know how he has impacted so many lives and made people appreciate their kids, and I'm glad for that. He's made me appreciate my life and my other kids more as well, but I'm still just so sad. Daily, I think about my last moments with him and I cry. I'm not sure when or if this will ever change.
We have many friends, lots of family and a great church. I don't know if this is "normal" or not - heck, nothing about any of this is normal - but right now I find the greatest comfort in being with my husband, kids, and my friends. My friends are the ones who are able to make me laugh and distract me right now. We can still talk like we did before all this. I mean no disrespect to my family at all by this, but they are grieving just like we are now. When I talk to them, I want to cry. I know they're still saddened by all this and want to talk about it, but it's so hard for me to talk about right now. So, call me abnormal, but I'm just telling the truth. I've found that laughter is like a little firefly in this darkness. It's light is short-lived, but things are a little brighter when it's there.
I suppose this is enough rambling for tonight. I need to get to bed. Love you all, jc
This pic is dark and I can't lighten it up, but you get the general idea. This is the big pop bottle sculpture in the front of Pops. The kids and I went with our friends, the Mays. The place is called "Pops" and is on the historic Route 66 in Arcadia, Ok. It's really a convenience store with a diner on one end. They have hundreds of different kinds of soda pop in bottles. The kids loved it. The food was ok, but it was worth the drive for the fun. We did this before the blood drive.
The blood drive was yesterday. We had such a great turnout. Thanks to everyone who helped pull this together. There were people ready and waiting to donate before the OBI people were finished setting up. We had a total of 71 people try to donate and 61 were actually able. The ten were deferred until a later time due to different reasons - but thanks for trying! The 61 units of blood equal over 7 1/2 gallons of blood donated in the five hours it was open. The OBI people said this was a great drive and usually at a church they only get around 20 donors. They were busy the entire time. Forty-five people had pre-registered - those were all the slots they had. The rest were walk-ins and they were able to accomodate everyone who arrived. The wait was long at times, so thank you all for being patient. It meant a lot to Greg and I to do in memory of Maverick.
We were able to meet a lot of new people. Many attend our church, and some are from the community or surrounding communities. It was nice to meet so many new faces that were praying for us throughout Mav's life - and many who continue to do so. Thanks to everyone who helped make this so successful. Love you all - jc
Wednesday, March 18, 2009
Tuesday, March 17, 2009
Yesterday we went to the zoo. It was the first day of spring break and I heard there were over 10,000 people there. It was crowded, but really not too bad. The kids had fun. We were even on the local news at 6:00 - channel 9. One of my friends is really good at "positioning" for such opportunities, so she was interviewed and there were some brief shots of the other parents and various kids. This was Chloe on the way home. She was worn out. For those of you who are wondering, her shirt says, "Biker Girl." One of our friends made it for her after reading the biker story about her here on the blog.
There were lots of sweet baby boys at the zoo. I couldn't help but stare. Some were about six months, like Mav would be. There was one that caught my eye as we were feeding the fish and ducks. From behind he looked just like Carter when he was about two. He had light blond hair and had it spiked up on top. It really got to me. Maverick looked so much like Carter, and I knew I wouldn't get to see him at that cute age.
We were supposed to go swimming today, but I just couldn't do it. Last night and this morning were really tough for me. Greg has been having a hard time, too. It doesn't seem like this is getting any easier. However, I refuse to stay in bed all day and cry - not that they would let me anyway. I'm doing my best to keep things somewhat normal for them. I think they've become accustomed to seeing me cry as I'm folding laundry or doing things around the house. I just do the best I can.
I've been having dreams about him again. He's healthy in all of them. He was laughing in one. I was holding him on my hip and had his little foot in my hand in another. I actually enjoy them, but they make me cry at the same time. I really just wish I had him here. I go through everything in my mind and can't help but think about the "what if's." I can't even begin to go through the huge list of them that go through my mind. I know I can't change anything now, but my mind goes there anyway.
On a more productive note, the blood drive is tomorrow. I've been told all the slots are full. I didn't even realize they were having people call ahead to sign up. They may be able to take a few walk-ins, I'm just not sure. Thanks to everyone who is helping and everyone who has signed up to donate. This is really a great way to impact lives. You may never know who's life you helped save. I know numerous people helped Maverick along the way. Greg and I are planning to be there. I hope I get to meet some of you who have been following on the blog. It will be nice to put a name with a face. If you don't live close-by, consider donating in your area tomorrow. Love you all, jc
Sunday, March 15, 2009
When I arrived at the cemetery, I thought I would just see dirt. Last week the flowers were dying, so I knew they would be gone this week. Someone left these flowers. I was surprised. They have a little duck attached. I almost smiled, but I was already crying. Thank you, whoever you are. jc
This was Mav's grave the first Sunday after his funeral. I don't know why, but Sundays are difficult for me. I'll cruise through the morning and by late afternoon, it's hard. This is where I go and sit for awhile and cry and think. We haven't been back to church yet. About Wednesday of every week, I think, "Okay, I'm ready to go back this weekend." It seems like by Sunday I'm drained. I'm worried about walking into the sanctuary. The last time I was there his little coffin and flowers were up at the front. I'm concerned that's what I'll think about and I'll just lose it. The weekends are so hard - even if we stay busy. I'm okay while we're busy, but you can't stay busy all day. I can't really even explain it. I think it's because we went so many months without all being together on weekends, it makes me realize we're all together because Mav's no longer here.
Today I finally threw away the flowers, then the kids and I went outside and played. I have the hydrangea from the funeral I want to plant, so I tried to decide where and how to make a flower bed. I think I have it figured out. Maddie cleaned out the car in preparation for the trip to the zoo tomorrow. She handed me a toy plane and bow from Mav's arrangement from his grave (it was in the car). I went to put it in a little box in the house - it has some sets of his footprints in it. I picked up a newspaper that was laying beside it and it had the article the Shawnee News Star printed shortly after his death. I just lost it - I went and cried with Greg, then I went to the cemetery.
The kids are looking forward to this week. It will be good to be around all of them. My phone is letting me send pics again. I'll post several this week. Love you all - jc
Friday, March 13, 2009
I realized last night at dinner that Chloe doesn't really get it. I asked who wanted to say the prayer and Chloe said she did. She prayed, "Deah Lord, please let Maverick get betta and come home." After she finished, I said, "Chloe, Maverick won't ever come home. He died, remember? You can't come back home after you die." She looked at me with one of her wild expressions - like "What are you talking about?!" We discussed it a little more and I answered a few questions then she just made an expression like, "well, okay then" and started talking about something else.
Maddie and Carter had their last day of school before spring break today. We get to sleep in for the next week. The past couple of nights I've actually been sleeping better. I'm thankful for that. Maddie and I started to plan some activities for next week. I just don't want to end up sitting at home everyday - the kids deserve some fun times. It looks like we won't have to worry about that... Zoo, skating, swimming, visiting a fun restaurant, and the park are on the agenda so far. I'm sure I'll have some cute pics to post. I tried to post some tonight, but I think the network isn't letting me send them. It happens sometimes.
Speaking of sitting at home, I'm sitting at the computer looking at flowers that have died. I've thought about throwing them out, but just haven't done it yet. This may be twisted, but in my mind, it's like it will signify the amount of time that has passed since his funeral - as in it's been so long that the flowers have died. They were so beautiful, but now they're dead. Over the past several days I've thought about death and how it's really not a surprise that we're going to die. Everyday, everyone of us is one day closer to death than we were the day before. We just don't know how close we are to the end of our road. I think maybe it's not as scary to children as it is to adults. My kids have made reference to the fact that Mav is in heaven, and some of my friends kids do the same - almost to the point that they look at you like you're crazy for crying. It makes me wonder if as you age, you get more selfish (or just more attached) and think about the relationship you lost instead of how focusing on the amazing place your loved one is in now. While if you're a child, either you can see it so clearly and don't have all the preconceived thoughts about death or you're so egocentric that you don't have the capacity to grieve like an adult. I know, that's pretty deep. I think I've always been reluctant to think about my own death. I always tend to think about all the reasons I need to be here - namely my family. I still think like that, but now heaven has a different spin on it with Mav there. I've had other friends who have lost kids tell me it makes heaven more real. I can definitely see their point now.
Here's another one of my weird dreams, it ties into the above. For reference, it helps to know: A. one of my friends made mention of Jesus coming back to get us during a conversation yesterday, and B. that I cooked bacon in the oven for the first time last night and I set off the smoke alarm... We're all here in the house and all these different alarms start going off - alarms I really don't even have in my house. Even the tornado siren outside is blaring (it's practically in our backyard) and it has red, blue, and white lights attached to the pole that are going as well. Somehow in my head I know this means that it's the end of times and Jesus is coming back. I'm not scared or worried or anything. I'm relieved we'll all be with Mav - and Jesus, of course. It's strange to see how your mind works while you're sleeping - or how God tells you it will all be okay someday.
As for the real alarm going off, Carter and Chloe thought the house was on fire and started screaming, "Fire! Fire!" and running from the kitchen. Carter was shouting to Chloe, "STOP, DROP, AND CRAWL!" He almost had it right.
Thanks for your continued comments and support. I'll just keep writing, because honestly, I can't bring myself to say most of these things out loud. I'm not a big "serious talker." I never have been - don't take it personally if you're someone that's close to me. It's much easier for me to type it out and not have anyone to hash it back to me and ask questions. I like to cry by myself - or with Greg. This has just been a good way for me to deal with things. Love you all - jc
Wednesday, March 11, 2009
Somehow Chloe and Carter end up sleeping together. Maddie likes her own space. They love doing "snug as a bug" before bed, but somehow we ended up changing it to whatever the kid wants to be that night. Tonight, Chloe was a ballerina in a rug and Carter was a stuntman in a rug. I just realized as I was looking at them that I have never taken a picture of them like that, and its one of their favorite bedtime rituals. My little Chloe is on her second night of big girl panties to bed. I've heard before that you always remember the firsts, but never the lasts - last time they slept in your bed, last time they wanted you to carry them, etc. So I'm paying a little bit better attention. Mav taught me to enjoy every moment as it happens. That's about all we have control over.
We had sundaes this evening and the kids loved them. A friend brought ice cream and all kinds of toppings over last week. What a great idea. It offset the fact that we had beans, ham, cornbread and mac and cheese for dinner. It was the grab-what-I-can-find-in-the-pantry meal. Nothing green on the plate - I know. I have just been trying to avoid Walmart like the plague. So many people, so many babies. Sometimes so many moms I just want to strangle. You know the ones... screaming at their kid, slapping them, etc. I just want to go up and do the same to them. Ungrateful for what they have - that's what they are. Don't get me wrong, I'm not a saint. I'm sure I've probably been witnessed doing less than perfect things when my kids get rowdy, but I can promise you I'm much better now.
When we were still in Dallas I went to a near-by Toys-R-Us to find Mav his first mobile. I was looking for some pacis as well. I ran into a mom with a 12-year-oldish daughter with her. They were shopping for a baby gift. They were disagreeing about something and she turned and looked at me and said, "I get to spend the rest of the week with her. She's out of school." She said it very snidely and sarcastically. I almost bit her head off, but I bit my tongue and just looked at her like she was disturbed. At this time we had been away from our kids for about six weeks. I kept thinking, "Lady, I would love to spend the rest of the week with all my kids. You have nothing to complain about."
Yesterday, Chloe and I were hanging out in the morning and I asked her if she wanted to go to school. She looked at me and said, "No, I not want to see Kinsey (that's her best friend at school). I want to stay wis you. You my bess buddy." My heart just melted. She wanted to go today, though. When she got home, she started playing with her babies. She had one in her arms and she said, "Dis baby gul was weally sick. She almos flew to heaven." I said, "Really?" She nodded and kept on playing. Later in the evening she told me her baby was in the "hossa-paytal" and was going to have "surgee" tomorrow. It's interesting to see how all this has effected her and how she incorporates it into her play.
Today was a little better for me than the past few days. It had its moments too, but overall it was a little better. If I could get the sleep issue worked out, I think that might help as well. Maddie and Carter had their dentist appointments today. I took them to McD's (the drive-thru this time) before they went back to school, so they could be the kids with the "special lunch" today. I really haven't been one to do that in the past, but the kids loved it. I'm enjoying their smiles more and more.
Just a reminder about next week... The blood drive will be Wednesday evening, March 18th from 3pm to 8pm. I know it's spring break, but I would love to see you there. Love you all -jc
Tuesday, March 10, 2009
I went to lunch with some friends today. I almost didn't, but was glad I did. My mind is never really "off" him, but sometimes it helps to be with other people. Most of the time, though, I just want to be with Greg and the kids.
We've received some of the sweetest cards and correspondence. Thank you all so much. Some of Mav's nurses have written to us. I feel like next to us, they knew him best. We so appreciate your sweet words about our boy. I have to share one card we received in a potted hydrangea at the funeral home. It made me cry and still does.
"Clark family, These blue flowers reminded me of Mav's beautiful blue eyes. I hope you will plant these where they will always remind you of your sweet boy. Much love, Lindsay, RN"
This brings me to another thing I've learned from Mav. Nurses make the biggest difference. This is in no way meant to deny the importance of excellent care from physicians, but nurses are the ones who Mav had in his room around the clock. They're the ones we were with most of the time as well. Having a good, caring nurse would make even the worst days seem better. Having a nurse with less hope than us could make a good day terrible. Seeing our favorites care for Mav made my heart happy. I knew he would get the attention he needed and deserved if we weren't there. They each had their special things they would do for him. Some would make sure he had a bath and a clean mohawk. Some made the neatest beds or cleanest rooms. Some arranged all the wires and tubes. Some made sure he was lotioned up. Some liked to talk to him and just stay in the room with him. Others brought him stuffed animals, wound up his mobile umpteen times a shift, and arranged the room so it would be easy for me to hold him. One helped us keep our perspective. Another (who didn't even have him a lot) called him "lovebug". She may have called all her patients that, but it made me happy to hear it. Most were amazing at nursing us as a family as well, and I know I wasn't the easiest person to deal with... and I'm sure that's an understatement. Thanks to all of you.
Being a nurse, I learned all about "family-centered care." I hope I practiced it. I know I will more so when I'm working again.
Love you all - jc
Enough rambling for tonight.
Monday, March 9, 2009
Sunday, March 8, 2009
I usually have no problems sleeping, but lately I haven't been sleeping well. I had a prescription called in for some medicine to help me sleep. Hopefully it will work. Sleep is expensive these days...
The kids are doing well. Maddie and Carter are busy with school and don't seem upset very often. Chloe will bring up, "Maverick died" about every day. She likes to dress her dolls in Mav's clothes. Greg is doing well, he has his moments too, though. I guess all this is to be expected.
I received a call from a friend from church today asking about the breast milk. I was able to put some of it to good use today. There's a mom with a one week old baby who had to be admitted to the hospital for pneumonia - she's been very sick. She is pumping, but is unable to give the breast milk to the baby due to the medications she is on. It makes me feel better that what was meant for Mav is helping another baby and not just going in the trash. Please pray for this mom's recovery.
Wishes for a good week. Love you all - jc
Saturday, March 7, 2009
We had a pretty good day today. Greg and Carter did some running around. Maddie had a friend over and all us girls went to McDonald's. I won't do that again anytime soon - that place was dirty. Here's Chloe enjoying her ice cream.
I've been holding up pretty well today. I didn't post a pic of Mav, because I didn't want to start crying tonight. I still haven't been sleeping well, so this post will be short. I'm getting ready to crash. Greg says he has several videos of Mav on his phone. I'll post one tomorrow.
I'm toying with the idea of going back to school. I've been thinking about it for several years, but the timing just hasn't been right. I would like to be a pediatric nurse practitioner. I've been looking at online programs tonight. Maybe if I put it here in writing it will motivate me to get things moving.
Just want to say thanks for all the cards, thoughts, prayers and gifts. We are so blessed to have such amazing people helping us through this. It's so nice to hear from you all and hear how Mav has impacted your lives. Love you all, jc
Friday, March 6, 2009
Another sweet picture from Greg's phone. It looks like Carter and Maverick are both smiling for the camera. Mav's funeral was one week ago today. I had been doing pretty well today until I started looking at pictures. It just makes me wish things could've been different. If I think about things logically, I know he's better off now and not hurting or sick. It's just so hard not having him to talk to or touch or hold. Greg told me tonight he thinks Mav wasn't put on this earth to stay for a long time. He thinks he was put here to let us find out about my heart issue (more about that later), to help him (Greg) heal from his back issues, to raise awareness about congenital heart defects, and touch people's lives in the process. He may be right, but it's hard for me to process that a life could be meant for such a short time - that my baby wasn't meant to be my toddler, my preschooler, my school-age child, etc. It just makes me sad.
Some of you know about my heart, but many others don't. When I was about 3 1/2 months pregnant with Mav, I had an episode where my heart felt like it was racing and I almost passed out. This had happened one other time about a year prior. I went to the nurse practitioner after it happened the first time and she said to come back if it happened again. I told my OB doctor about both episodes at my next appointment. She wanted me to have a heart echo performed. I went to have the echo. I didn't hear anything back, so assumed it was normal. At my next OB appointment I asked about the echo and the doctor said it was fine. In between these two appointments we had found out about Mav's heart. When I got home from my appointment Greg said my doctor had called and I needed to call her back. I did and she told me the heart echo showed I had an ASD (atrial septal defect) and I needed to have a trans esophageal echo performed. It was scheduled for a few days later. To make a long story short, I have a 2cm atrial septal defect. It's a hole between the top two chambers of my heart. I've had it all my life. If this type of problem isn't detected in childhood, people usually don't have problems until they are in their 30's or 40's. That's when your heart has been dealing with it so long that you start to have symptoms (heart racing, fainting, palpitations). The defect has to be corrected. If not, you have an increased risk for stroke, pulmonary hypertension, and irreversible heart damage. Usually these defects can be fixed with a device that's placed during a heart cath (where they go in through the groin). Occasionally they are in a place in the heart where a device can't be used and they have to be fixed surgically. You know how our year has been, I'm sure you can guess which category mine falls into. The surgeon here wanted to do it through the sternum - open me up through my breastbone. I saw another one when I was in Dallas and he does the surgery through an incision under the right breast. I'll be going to Dallas at some point to have surgery. If I wasn't pregnant with Mav and hadn't seen the doctor I did, who knows if this would've been caught in time to prevent irreversible damage or stroke. It's crazy, I know. My heart needs to heal from losing Mav before I'm ready to tackle this surgery. So, there's another thing we've learned from Mav. Love you all - jc
Thursday, March 5, 2009
Today I received an email today from another heart mom in Dallas. Her baby arrived shortly after we left Dallas. He had some of the same complications as Maverick. He passed away the day after Mav and their funerals were the same day. She said she had a talk with her little guy before he died and told him to go find Maverick in heaven. She said she knew they would be best friends. They were both such little fighters. I thought that was sweet. If you think about it, people are losing their children everyday. It's hard to imagine - everyday someone, somewhere is going through what we went through last week. This has made me a much more compassionate person.
I told you in an earlier post I would fill you in on the things I've learned through this process because of Maverick. This one is more directed toward my healthcare friends. I've learned "chronic" is not a nice word. For those of you not in the medical field, "a chronic" is a patient who has been in the hospital a long time or who frequently has to be admitted to the hospital. It's a term I've used many times myself. I remember the first time someone referred to Mav as a "chronic." It was in Dallas - it was one of those memories that stick in your mind. I knew in my mind that his condition was turning into a chronic condition, but to hear someone say it.... It broke my heart. Maybe this isn't true for non-medical people, maybe it wouldn't upset them. I don't know. Then, as we were arranging the transfer from Dallas, I was on the phone with a person from OU and they referred to Mav - my sweet baby boy - as "the chronic from Dallas." OUCH. So, for all of you out there using that term, keep this little scenario in your mind. Your "chronic" is someone's bundle of joy. So, I'm sure you're thinking, "Well, what else would you call them?" Maybe extended-stay patient, maybe complex-issue patient, maybe just baby Clark or whatever their name is. Just something to think about.
I still miss little Mav, but I think that goes without saying. I'm not feeling as lost during the day as I was since we've been in a new routine for several days. Greg asked me today what I wanted to do with all Mav's stuff. I told him I wasn't ready to do anything,yet. As for all the breastmilk in the freezer, that's another story. My mom checked on the donation process for me when she was here. I think you have to fill out some paperwork and have some blood tests drawn. Maybe checking on that will be on the to-do list for tomorrow. I know it might sound crazy, but I would rather just give it to someone who wants it or needs it. Send me a message if you're in that category and can come pick it up.
Wednesday, March 4, 2009
I remember shortly before Christmas Greg and I were picking out wrapping paper. I have always been a person who picks the stuffier wrapping paper that will match the decor. It was always my choice and what I wanted. This was the first year I actually picked out the obnoxious wrapping paper, knowing that the kids would love it. Just a change in focus.
Maddie and Carter are back at school and doing well. Greg is back at work - his back is either getting a little better, or he's just tolerating the pain. I am just taking things day by day. Some days the tears are more plentiful than others. Hopefully tomorrow will be a little better than today. Love you all - jc
Tuesday, March 3, 2009
Isn't she sweet? This is little Chloe. We were going to spend the day together, but she wanted to go to "school" instead. She attends Mother's Day Out at our church, and loves it. Greg went back to work, and once again, I tried to stay busy. I had coffee at a friend's house this morning with ladies from our church. I had lunch with a friend then went to look at all the pictures we had taken the week before Mav was born. I looked happy then. Honestly, I was nervous, but not too worried about Mav's birth or surgery. TGA is usually "fixed" with one surgery and the babies usually do fine. The timeline in my head had us going home in three weeks - tops. I'm such an optimist. I remember meeting another heart mom in the PICU waiting area shortly after Mav's surgery. Her son had been there two months. I remember thinking, "WOW, I can't imagine. Glad we won't be here that long." That was a gross under-estimation on my part.
I picked up the kids from school, then we had dinner with friends at their house. In between school and dinner I was the chaufer - taking Maddie to a tutor and Carter to a friend's house. When we got home this evening I was overwhelmed. Too much, too soon. It's been one week today. In one way it seems like an eternity ago, but most of the time it seems like yesterday. I still have the memory of his last moments running through my mind, and the song, "Godspeed, Little Man" playing in my ears. I imagine it will be that way for awhile.
The things that Mav taught me, namely to enjoy each "normal" day with my kids (I'll tell you the many others in another post - I actually have a list in my journal), have been hard to incorporate in my life right now. I wonder why I can't, but know why I'm not. A friend who lost a baby told me she wondered why, if she believed heaven was real, was she so sad. She passed on to me that God gives us an innate bond with our babies and when they die, that bond doesn't go away. I loved her words. They made me feel not quite so selfish.
Okay, so enough of my mind talk. It's been brought to my attention that Children's Hospital has been receiving donations in Mav's name. They don't know what to do with them. They are going to get them to me and our church will be the holding place for the funds for a few months, or until donations stop coming. Then we will give the lump-sum to a non-profit company that will purchase the 3-D ultrasound machine - or hold the money until we meet our goal amount. I don't have an exact figure, but it's in the neighborhood of $400,000. This was the best way to do it since I didn't have time to set up a non-profit specifically for this purpose. The non-profit is called Cavett's Kids and is run by a friend of mine, Danny Cavett (he's one of the hospital chaplains). He has assured me that the funds will only be allocated for their intended purpose and said he would give full disclosure of the account balance information to me. I completely trust him and have known him since I was a new nurse back in '95. So, if you'd like to help the address is:
Immanuel Baptist Church
1451 E 45th Street
Shawnee, OK 74804
Make the check out to the church and write "Maverick" on the memo line.
The whole story behind the 3-D ultrasound machine is... When Mav had his heart echos performed in Dallas, I was usually in the room. I watched the screen as the tech performed them - getting the pictures by placing the probe on his chest. The pictures were crystal clear. The only time Mav had to have a trans-esophageal echo(the knock-him-out-and-put-a-tube-down-his-throat kind) was in surgery. When we got to Children's here and his first echo was performed, the quality of the pictures on the screen was much poorer. Even when he had the trans-esophageal echo, the pictures weren't as clear as they were in Dallas with the trans-thoracic one. I'm in no way qualified to read echos, but even I could tell a difference. I commented to the ultrasound tech about the above. She said she knew what I was talking about and said they have been trying to talk "the powers that be" into getting the more advanced machine, but haven't been able to get it. I told her, "When we get out of here I'm going to try to raise money to get that machine." So, there you have it. The only thing different is I thought I would have my baby home when I started this process. He won't benefit from it, but hundreds of other babies will.
In closing, thanks again for your thoughts, prayers, flowers, plants, and gifts. I'd also like to thank you for your posts. I enjoy hearing from all of you and am intrigued by the posts from those who live miles away and don't even know us personally. They encourage me. They let me know Mav did make a difference in his short life here. Love you all - jc
Monday, March 2, 2009
To complicate things, it seems I've cried so much and blown my nose so much over the past week that I developed a sore on my nose. It has obviously become infected, and last night before I went to bed my nose was about twice it's normal size. Greg told me to call our friend, Kent, and have some antibiotics called in - right then. I protested and said it could wait until the morning, but he called him anyway telling me that it would be awful to end up septic from a sore on your nose. Dovie and Dejah (two of my girlfriends) came by to see me today and one called me Pinocchio. It made me laugh.
My sweet friend Dejah is the one who made the slideshow for Mav's funeral. It was just perfect. She is also responsible for posting it - I'm not too good with complicated computer stuff. She's also the one who took the pregnancy pics at the beginning of it. If you need any pictures taken, she's amazing. Her website is www.dejahquinn.com. Thanks so much. It made me cry again when I watched it on the blog.
I had another dream last night. In this one I was going into a restaurant and asked for a highchair. The waitress brought it to the table and placed it at the end. I looked at it and then realized I didn't have a baby to put in it. Then I woke up. So cruel, but so true. I sure do miss the little guy. I sat at the computer for awhile today and just looked at pictures of him.
I've been blessed to have some friends in my life who have lost children, and from what I'm hearing, all this is normal. Maybe not normal - I guess "to be expected" would be better terminology. I'm going to try to get with them sometime soon. It might help to know what to expect.
On to more positive thoughts, our church, Immanuel Baptist is hosting a blood drive in honor of Maverick Wednesday, March 18th from 3pm to 8pm. I'll post reminders as the date gets closer. I hope to have a great turn-out. If you're scared of needles, be brave - Mav was. Love you all - jc
This is the slideshow that we played at Mav's funeral.
NOTE:You may want to push play and then push pause and give it a few minutes to download to avoid those pesky little stops. (the trick is to let the running little red line get far ahead of the little circle...make sense?)
Sunday, March 1, 2009
Just a pic of Mav's favorite friends. They're sitting on a table in our living room. I had the hardest time deciding whether or not to leave the monkey with Maverick. It was his favorite and he would always "pet" it when you placed it by his hand. I told Greg I really wanted to keep it, but felt awful for not wanting to leave it with him. Being the sensitive husband that he is, he said "Keep it, it will be better off with us." I'm so glad I did. I've already needed it several times.
Chloe climbed into Mav's crib today. It's full of his things. She got out his little blue "baby uggs" as the nurses called them, and brought them to me to put on her doll. I didn't cry - surprise. I just held them, felt them, inspected them, and smelled them - just to see if I could catch a whiff of his scent (maybe just a hint of it was there). Then I put them on her doll and told her not to lose them. Later she brought me the music box part of his mobile. She wound it up and then started crying and said, "I miss Mav." I said, "I do too, baby. It's okay." and I just held her for awhile.
Greg brought me his phone this evening and said he has over 200 pics of Mav that we haven't downloaded, yet. I was looking through them and thought this was precious. It's the first time I've seen it.
Anyone who knows me knows I don't like to cry. I don't watch sad movies - why deliberately make yourself cry? So, I've been trying to stay busy. I rearranged the living room yesterday and got out some of my art books. I love to paint, but haven't since before Chloe was born. I may start that back up soon. Today the adgenda included putting up laundry, cleaning out the refrigerator, and spending time with the kids. I slept in until 11:00. That is so out-of-character for me, but I haven't been able to sleep well and haven't been going to bed until after 1:00am. I had a dream about Mav last night. He was in a hospital somewhere and I went in to see him and argued with the nurse about taking his temperature because I thought he had a fever. I held him up on my chest and he had no tubes taped to his face. He smiled and gave me eskimo kisses. That's all I remember.
Today I've been telling myself to suck it up. It's just my selfishness that makes me cry. I know he's in a better place and isn't hurting. My kiddos here need me. That's the talk in my head. Greg said it's not the selfishness that makes me cry, it's the mother in me. Guess what? That made me cry.
Well, tomorrow is the start of a new day and a new kind of normal. Maddie and Carter go back to school, Greg goes back to work, and I'll spend the day with Chloe. I was talking to a friend today and realized I probably haven't spent a day alone with her quite awhile - at least since before Mav was born if not longer. We have some catching up to do.
Hopefully tomorrow I'll be able to post the slide show and some pics from the funeral. Thanks for your prayers - jc