...and one more thing...

On this 28th day of the month, which (as I said before) seems to be significant for the hearts in my family, I'd like to urge all my family members to be certain to mention all of this to your doctor at your next regularly scheduled physical.

When we met with the geneticist some time ago she told me that the rate at which families experience this family of defects (left ventricular outflow tract defects is the fancy term) can be as high as 35% (or as low as 8%). Obviously none of you have HLHS, but there are defects in this family that you could have and not know it (bicuspid aortic valve, for example). Everyone on my mom's side and particularly in my immediate family should really have an echocardiogram at some point to rule this out AND though I know the time is far off (though it will go fast!) all of my precious nieces and nephews really need to disclose this to their baby doctors when they or their spouses become pregnant so that a fetal echo can be performed to rule out anything as well. We've all got different genetics and chances are that my brothers and sisters didn't marry someone who carries the same genetic markers, but it's so much better to know!

And... off my soapbox about that. (seriously, talk to your doctor!)

A couple of anniversaries...

Today marks six months since Ben died. It's hard to believe, actually, that an entire half year has passed. It feels so far away and so close all at the same time.

I've kept a calendar for all three kids that goes through the first year of life. I use this to write down milestones and things. Of course, L's is filled to the brim with things and poor W has something like three things on his first month. I was just sure that I had more so I spent an evening going through my facebook to see if I'd mentioned anything. In getting back to February 2nd when the twins were born I passed through some amazing messages. There is a whole life's journey on my wall where so many of you left notes of encouragement, prayers, liftings up and sympathies. I cried as I read them. I cried tears of sadness remembering how difficult that time was and also feeling the sharpness of how much I miss my baby boy. I also cried thankful tears. Very few people on this earth receive that kind of outpouring of love in such a tangible way. I think many of us are loved in that way, but very few of us get to know it in such an obvious way.

This day is also another anniversary...

One month ago today in a hospital in Texas my 1.5 year old cousin L received a heart transplant. He also suffers from HLHS and was post Glenn (having had two of the three surgeries) and at a regular cardiologist appointment his mama and daddy were punched in the gut with the news that their baby was in heart failure. He nearly lost his life and what his family endured was unimaginable but he received a heart for transplantation through an extremely generous donation from the family of a little girl. What an amazing miracle took place in that hospital a month ago today. It's been amazing to watch as so many marvel at the way that God is using little L (facebook is an amazing thing, isn't it?).

When L's transplant occurred on the five month anniversary of Ben's death Brad and I wept in amazement. We've followed L's story from his birth, and we followed it with a lot more perspective after Ben's birth and death from this horrible defect. Obviously I'm extremely thankful (understatement!) about little L's new heart, but I was surprised when this whole situation had a sort of unexpected effect on me. There have been many moments these past few weeks that I've had to delve a little deeper into my grief and healing process. At times it has even been painful, but God is most certainly using this little miracle boy to help me, too.

I would be dishonest if I didn't admit to you that there have been times over these past six months when I sat in self-pity and wondered why my miracle didn't come.

I know God's okay with all this questioning and I'm honestly ashamed for even thinking of this during what is a BEYOND amazing time for my family.

Obviously, this is an age old question that so many have asked. Why does God choose to perform great miracles in some situations and not in others? It's on my list of questions to ask when I get up there but I know that there will never be a satisfactory answer to that question here on earth.

Here's the thing: I do believe that God is a glorious all powerful god. I know that he has the power to create and destroy (and to clarify I DO NOT believe he destroyed Ben), and I know that he has the power to save. I don't know why he chose not to save Ben. In my heart of hearts I don't believe that God wants us to hurt. I don't believe that God goes around with his lightning bolt pen deciding what kind of day you're going to have and I do believe that God creates beauty and good where nastiness and pain have been.

This is where I'm led out of my pit of wondering why me and I come back to that love that was shown to us and I'm able to see the beauty that God has created in it. I reread all those facebook messages and they are certainly beautiful. The fact that I know that Ben has been made whole, totally healed and released from the awful suffering and pain that he endured on earth is also certainly beautiful. The fact that my relationship with Ben continues to grow and develop even though he is gone away from me is also most certainly a beautiful thing. Clearly, I'd rather have him back and sacrifice whatever personal growth I've gained and obviously I can't imagine that anything will ever fill the whole in my heart, but I am so thankful that I am a child of God who has taken this tragedy and grown something out of it. I'm so thankful that little L got his heart when he did and not a day later because now the number 28 is always going to carry deep meaning for me as I continue on this journey. How incredible that a little boy 2000 miles away has been used to give me the push I needed.

I know that God is placing people in my life who are offering me support and help through all of this. Sometimes I feel like I am drowning, but I know that there are life savers all around (and I wish that I could tell each and every one of you how your simple words that you probably didn't even think much of affected me so deeply, many of you have been used to shore me up and never knew it).

AND really maybe there was a bit of a miracle even if it wasn't the one I wanted. I can revel in the fact that God used Ben during his short stay here (and even in his death). I know that Ben touched lives of people everywhere, both those in our circle of family and friends and those who we never knew. It gives me such amazing peace to know that however short that Ben's life had purpose and bless all of you who took time (and continue to take time) to let me know how his life touched yours. Ben didn't live in vain. He left the world a better place than it was when he arrived. That is certainly a miracle indeed.

P.S. I'll keep everyone up to date on my cousin L's progress. Thank you to everyone who has continued to pray for their family. It's a beautiful thing!

Weekly Update

It's Monday! Woohooo!

Today is rainy and sort of coldish. It's the perfect day to snuggle up in bed and take a nap. I know that if I take a nap that I'll be up late, and my babies have turned into early birds and so I'm going to try to avoid that nap. What better way than to update everyone on our week? Besides I've got a "starbugs" salted caramel hot cocoa on the table beside me and I'm avoiding the laundry so it seems more than perfect.

This week was a sort of boring one. Last Monday both kids woke up coughing and sniffling and that lasted until around Thursday so we stayed in almost all week. Both kids have been sick. In August we had a minor stomach thing and Wes was sniffly a couple of weeks ago, but this is the first time I can remember it hitting both kids at once and it's definitely the first time they've both been so pitiful at the same time. Wednesday we decided to take the kids to the doctor. Sweet baby W was wheezing some and if we were taking him we might as well take miss L too. Since miss L was weighed just a month ago they let her slide, but weighed sweet baby W. He weighed in at 20 pounds. 20. pounds. Miss L was 20 pounds at her one year appointment. Can you believe that's the same boy who took an entire month to get back to his birth weight? I love it! Anyhow... sweet baby W was fine. No bronchitis or anything, just a cold. Miss L, on the other hand, had an ear infection! Isn't that the way it is? I really thought she was the one who just had a cold, so I'm very glad that I took her in! We got an antibiotic (which she had an allergic reaction to) and then another antibiotic and now the kids are still coughing, but don't seem to be all that sick anymore.

So... that's a really long way to say that we were in the house for most of the week.

That's not to say nothing happened, though.

As evidenced by his good squeezey baby size, sweet baby W is a good eater. He'll honestly eat just about anything. He's loved everything he's tried so far (except yellow summer squash) and he's a much more regular eater than miss L was at the same age. When she was seven months old she'd eat maybe one meal of solids a day and it wasn't a big deal if she skipped. She wasn't really picky about food, but she wasn't really into it either. Sweet baby W, on the other hand, demands his breakfast, lunch and dinner and I try to make sure that he has cereal at one meal (for the iron), yogurt at one meal and then some kind of protein (usually whatever meat we're having at dinner). This week it did occur to me that when miss L weighed as much as he does, she was eating from the table for all meals, so maybe they aren't that different!

One of the hardest things about having such a hungry guy is that when I'm trying to get dinner together, or even when I'm just heating up his food, he cries and cries because he's hungry. I know that you are supposed to wait until a baby is able to get on all fours before doing cheerios (and we are not doing that consistently at all), but at six months the doctor told me not to be afraid to try anything except peanut butter, so I went for it.



I put the first one in his mouth myself, but after that he was all in. In fact, this week he learned his very first sign, "more." Brad and I joked that we shouldn't be surprised this was his first since he's such a hungry little fellow. It's just so fun to see him do it. I can't remember now what he ate that he signed more for, but he was all over it with the cheerios.

Here is his "more" sign.



Since he started signing "more" we've realized that he also means "eat" when he signs it because he'll sign it to me at random times when he wants to nurse or eat solids. The boy has his priorities straight! :o)







There are two difficult tasks (maybe three) in eating cheerios. There's the picking them up, the getting them in your mouth and letting them go (while they are in there, of course).





Miss L wanted me to take a photo of her eating cheerios too. (and yes, apparently we just go shirtless around here all the time, cause I seem to have a lot of photos of her with no shirt on!)



After that he's had those cheerios at pretty much every meal. I remember feeling this same thing when miss L started eating cheerios. It's just like I can finally eat my own meal while it's hot without having to quickly shovel food into his mouth or nurse him at the table, or I can prepare his food without him crying because he's occupied! It's the BEST!

It's definitely funny to watch the whole thing evolve. He's tried several methods of getting the cheerios into his mouth. There's the rake them into your hands method and then just keep trying until one goes in. There's the pull them all to the edge of the table and then just shove your face in them method (which is what he was doing when I took the picture below. I don't have one of him with his face buried in his cheerios, but I did get this one with one stuck to his face.) Finally, he's settled on this method, rake them up with your hands and then use your free hand to steady your wrist while shoving the hand full of cheerios into your mouth. It's so cute!



So see how exciting our week was? I just wrote gobs and gobs about cheerios! :o)

Friday we decided we had to leave the house. Miss L's nose was barely runny still but it was now clear instead of green (sorry!) and sweet baby W seemed to be doing better too. Mommy, on the other hand, was going insane so when miss L asked three times before 8:30am if we could go to target, I said yes. We had a party to go to anyhow later that day and we needed to get a gift. We even had lunch with daddy! It felt so good to be doing normal things!

Miss L was happy to be out of the house (and this is her new photo smile. I like it, but I kind of miss the snarl look).



So, since she showed no more signs of illness, Friday afternoon we went to a birthday party. It was at a local place that specializes in moon bounces. We've never been to one, but it was AWESOME. Miss L was definitely in her element there and it was the best possible outing for a girl who'd had to decide between playing in the living room or the basement all week.



The lighting wasn't great, but you get the idea. Miss L and her daddy went down the world's fastest slide together.



Even sweet baby W found a friend to play ball with.



There was a group photo taken and Brad and I tried to get miss L to pose with the group, but she was too busy hanging out in the cozy coupe. The funniest part was that as soon as everyone was done, she rushed to sit to have her photo taken. :o)



Then it was miss L's favorite part of any celebration... cake.

(I can't believe how big these girls are!)



Another one of the new smile. It's not quite a normal smile, but it's not a snarl. She's growing up!



The weekend passed fairly normally. Last week miss L started napping again because she was sick, but it seems to be going so well that we haven't really stopped. Originally we stopped allowing her to nap because she'd stay up so late, but she's not doing that and I NEED that time. So since we were concerned again with being home in time for her to sleep (and W too, really), we just didn't go out much. Saturday was out for errands and Sunday we went to church, but other than that it was a pretty quiet weekend.

Today I think we're all looking forward to getting back into our routine. Miss L has only been to one of three days of preschool, so I know that she can't wait to get back. Today we just stayed at home, allowing sweet baby W to have his morning nap and allowing miss L and I to have some mommy and L time.

The first thing we did was finger paint. We're going to make a tree with these, so we were trying to cover the entire sheet of paper with paint in fall colors.

(my flash is out of batteries, so the photos aren't the best, just bear with me. :o)









When our painting was done miss L wanted to play play-doh, so we sat together at her little table (that used to be mine!) and we played and played. I think we sat there for at least half an hour. We were making trees (also the first time I can remember actually making something) and she asked me to take a photo of this one. How could I say no?



See you next week!

Weekly Update Part II

The second big day that I missed was miss L's THIRD birthday. How did that happen? It went so so fast. It's been quite a year for miss L. At the age of three miss L can say pretty much whatever she wants. She's very tall at 39.5 inches tall and she tips the scale at 31 pounds. She now sits in the very back of the minivan because she can buckle herself in. She is potty trained and has accidents only very occasionally when the going gets rough. She loves art and live music. She enjoys playing outside and would now rather play with "kids" than anyone else. She can ride a tricycle fast enough for her daddy to ride his bike along with her. She's extremely active and loves gymnastics. She is a little picky when it comes to food, but seems to be growing out of that. She is going to preschool this year and her favorite book is Olivia. She just recently gave up her afternoon nap (sigh). I know I'm leaving a lot out! There is just too much to include!

Her birthday began this year with a couple of gifts on her table in the morning when she came downstairs. Last year she got so many gifts (even though we always say we're going to scale back - it's a sickness!) that she was overwhelmed opening them, so this year we thought it might be fun to just open presents all day long! She noticed them first thing when she came downstairs and was all giggles opening them up!









We had a special birthday breakfast of a donut with sprinkles with daddy!





After that it was a birthday playdate (and a chance for mommy to clean the house for her party the following day!) and a special lunch with daddy. She even got to have her very first ice cream cone, though we were reminded why we hadn't done that before when it fell on the floor! She didn't care, the few bites she got were fun enough! In the evening we opened even more presents and had cake!











I love that she's still in the stage where she wants to open a few, play with them, then open a few and then play with them. We'll do this again at Christmas allowing the fun to go all day.

Then it was time for cake! Miss L chose a carrot cake from the store and promptly turned the package upside down. I'm not sure if she knew it, but that pretty much sealed the deal on her getting what she wanted!







For miss L's first birthday we gave up the bottle. We traveled back to where we grew up for a memorial for Brad's great aunt and combined it with a big family birthday party for sweet baby L. I just didn't take the bottles with us (which looking back, was INSANE!). We never looked back!

For miss L's third birthday we gave up the binky. She loved that binky, though she's always had a binky AND a blankie and so we hoped that whatever need she still had for a lovey she could transfer to her blankie. Even though she had it only at night, her teeth were just starting to turn because of the binkie, so it was really time. Conveniently the day before she turned three we visited the dentist who told her it was time. We were able to blame the dentist (sorry dentist!) and because of the big weekend that she had, she gave it up without really asking about it much. Woohoooo!

Saturday it was party time. Brad took the kids as much as he could so that I could prepare for the party. I didn't get everything done that I wanted to, but in the end it was perfect anyway!

Wes spent a lot of time that day in his favorite toy, the jumperoo!

















We had so much fun at the party. Besides all the good food and good company we set up the slip n slide and the kiddie pool for the kids.

















After the party we were all pooped. Miss L went straight to bed and we saved gifts for the next morning. We are so blessed to have such wonderful friends!





Very shortly after miss L's birthday is Brad's birthday. This year he wanted spaghetti so we had that and peanut butter pie. Yum! Miss L wanted to celebrate with party hats so we got some. Miss L and her daddy went swimming for a bit before dinner. August is always fun at our house!





I love sweet baby W's crabby shirt. For one thing, he's almost never crabby, but it makes for great photos!





I just think this photo is funny. They are both making the same half smile I'm-sick-of-all-these-photos faces. Ahhh, siblings...





Brad didn't get to blow out his candles. We'd built it up so much for her birthday that her excitement got the best of her when Brad's candles were lit.





Sweet baby W will now drink from a cup. I offer him water at his meals and he loves it. It's just so funny to me because miss L hated the cup. She would always much prefer a bottle! Sweet baby W on the other hand loves finding a treat when he finally gets the thing in his mouth. :o)





Fall is our favorite season around here. There are festivals and all kinds of things going on. This year we kicked off fall with a trip to a local farm to dig for potatoes.

Can you tell she put her own shoes on?





Sweet baby W loves riding around in his carrier.



Miss L really wanted to carry the bucket we brought for our potatoes, but kept stopping and digging for rocks. By the time we were in line for pancakes at the festival we had quite a collection.



The pancakes were YUMMY. Sweet baby W does not like it if you have food and he does not. It seems so impolite not to share and the pediatrician told me that the most current research on allergies shows that there's no real correlation between when foods are introduced and childhood food allergies. She told me to wait on peanut butter for a bit but to just go for it with everything else. So... we're going for it, but trying to do the three day rule for new foods (try it three days in a row since it's the second or third time trying a food that brings the reaction) because he already had an allergic reaction to bananas. (I know! Bananas?!) So far, so good, he's had all kinds of foods with no reaction.

Anyhow... W had his first bites of pancakes that morning.





We've been to this same farm for several years now, but this was the first year that I remember miss L really having all kinds of fun doing the extra stuff that they have there. They have a sluice with rocks and things in it that you can find. I love that miss L stopped and held up her little sifter so I could take her photo. You can tell we do this a lot. :o)



They also have a huge jumping pillow at the farm. We've never been on it, but this was the day!







All that jumping made miss L hot, so she came down to take off her long sleeves, and then it was back up the pillow.



Now, just jumping wouldn't be enough. She's got to jump, then fall and roll down the pillow and repeat. It's just the L way to do the jumping pillow!



























I think that may have been her favorite part of the trip.



She did really like the animals though. She loved watching the little bunnies.



She also loved this baby potbelly pig named Elmer.







After all that exploring it was time to dig up some potatoes.





I'm sure there's a reason they plant ground cherries with the potatoes, but man the thorns on those things are brutal! The best bet was to wait for the tractor to come by and till up the row making it easy to find the potatoes and getting the nasty ground cherries out of the way.









...and as always seems to happen on our you pick adventures, I eventually herd the children and Brad ends up doing most of the work to get whatever fruit or veggie it is that we're after. :o)





It seems that transportation is generally miss L's favorite part of any excursion. When we saw the fireworks it was riding the bus to shuttle back and forth. This day we rode a "hayride" to get out to the potato fields. Miss L usually has the most serious of faces on when she's with a bunch of strangers. This day was no different. Just moments after this photo was taken she said, "I having FUN!"



This is just a random cute picture of sweet baby W. He's got peaches on his face there (I think). The boy loves his solids.



Labor day was cool at our house. The whole weekend had been cool, but it was the very last day for the pool to be open, so around dinner time we headed over to enjoy the very last pool time for the summer.









Right about that time my little man turned seven months old. At seven months old sweet baby W can sit really well on his own with no support needed. He likes to swing in the baby swings at the parks and stayed for music camp at the church. Wes is a happy boy eating two meals a day and still waking up twice a night. Here are his seven month elephant photos.





I remember it was right about this time with miss L that our bunny photo sessions started to deteriorate. Sweet baby W was proving to be a bit of a difficult subject since he really wanted to be moving around.













The next weekend we decided to head to a local seed festival and on Friday afternoon we decided we'd go camping as well. :o) (cause we're crazy.) It could have gone so very wrong, but two nights out in the wilderness did us all kinds of good. We arrived after dark, so poor Brad ended up setting up the tent in the dark. Saturday morning we woke up refreshed and ready to have fun. There's nothing like waking up in the mountains!

Miss L was very happy to be spending her time outside and I thought it was funny how she found ways to occupy herself. She spent a long time watching herself make funny faces in the back of the van.



Brad is our camping cook.



...and there is nothing like bacon, scrambled eggs and batter blaster pancakes. YUM!



Sweet baby W took a nice morning nap in the mountain air. He woke up happy and grinning!



After breakfast it was off the the seed festival at Monticello. We got to ride a school bus as a shuttle, so you know that was miss L's very favorite part.

Once we got there it was all yummy food and fun!







There were gardens to explore. Look at that giant bean and gourd!





Some of us had more fun than others. :o)









Brad and miss L learned all about worms and got some more worms to restart their worm bin.



...and there was lots of running around.





Sunday we headed home and stopped to take photos and look over the edge at a few overlooks. Every time we would pass one miss L would ask, "can we stop here?"









Miss L's favorite activity at the overlook was throwing rocks over. We probably shouldn't have let her do that, but it was very cute.













After that weekend, we've mostly spent our time at home.

Here's another random photo of W with food on his face. This time it's beets.



Miss L is very much into pretending right now. While we were taking a few photos of sweet baby W, she started using her own "camera."



I love the milk mustache.



Sweet baby W all clean!





Last week we reached a big milestone for miss L. She started preschool. The night before school we got everything ready. She picked out her snacks and packed up her new backpack.









She woke up on the first day very excited to go and daddy stayed home to go with us!



She had a good breakfast and got her backpack and shoes on and we took some photos in front of the house.







We were finally ready to go!



I think this photo is funny because there was a little boy standing right behind us screaming his head off. I think miss L was wondering what in the world she'd gotten herself into.



She hung her backpack on her hook and kissed everyone goodbye and she was off.





When I picked her up in the afternoon she was so excited and talking a mile a minute. She told me lots of things though the things I remember the most were that her favorite part was snack and that you aren't supposed to play in the water when you wash your hands. They also sang some kind of song about a frog with counting. I have to admit I shed a few tears. You want them to grow up and to achieve and experience, but it's kind of sad too. She loves school!

Saturday we just went to the grocery store, but I had to take a couple of photos of this. I just love matching outfits.





Here's what happens to your nice big sister shirt after a day of playing...



Brad spent a lot of time this weekend in the backyard. We're totally redoing everything back there, taking out the diseased peach tree and take out the huge garden bed that the previous owners had and making room for more grass and more room to play. Miss L helped her daddy quite a bit. I really love the outfit.





Brad seems a little underdressed, but he's working very hard!



It's really sad to see that tree go, but it's going to make so much more room out there and it was sick. Goodbye tree!



I'm hoping to see you next week! We're sick so it'll be a short one, but sometimes that's the best. :o)