Decade in Review

I saw this on another blog I read, so I'm going to shamelessly steal her idea.

On NYE of 1999, I was 18 and spent it with Anthony of Kentucky fame (if you don't know that story, I'll recap it later. It involved stupidity on my part and a lot of douchiness on his part). That relationship ended a few months after that and man, thank God it did. I was a freshman in college that year and had just moved out of my parent's house and into the dorms. I remember calling my mom after midnight to laugh at her, because the world as we knew it did not end (she'd fallen hook, line, and sinker for the Y2K hysteria and had done things like stockpile wheat and canned goods).

2000-2001 was a drama year. Dated a guy off and on, and in the "off" periods dated around a bit. Dating and being 19 means drama. I got my first apartment, a little 400 square foot efficiency with a sink so small you couldn't put a dinner plate flat in it. My refrigerator was in my living room, and my bed was seperated from the living room by a half wall. I loved it at the time, because it was MY place that I paid for on my own.

NYE of 2001 was notable night because that was the night that Jacob and I got together. I'd met him a few times before that when I'd drive from San Marcos to the Westlake IHOP to "study" (read: hang out and take over the smoking section while occasionally doing homework) with Jacq and Megan. Jacob worked with Megan at the same Wal-Mart, so he was part of the "study" group. He was shy, and I was dating someone else at the time, so it never went beyond a "hi" until NYE of 2001. I'd broken up with the guy I'd been dating, and Megan invited me to come to Slick Willie's to play pool. I got there before Jacob did, and happened to look up as he walked in the door. I still don't know why I thought this, but as he walked in the door, I thought "If I were to date him, it'd be really serious". I then immediately thought I was being ridiculous. Later that night, the whole group went back to Megan's house to watch the ball drop on TV. I took off my shoes and socks since I was planning to spend the night. Jacob was standing by himself in a corner looking uncomfortable, so I threw my socks at him. That broke the ice, and he and I have been together pretty much ever since.


2002 was pretty uneventful. I graduated from college in 2003, and got my first teaching job in January of 2004. Jacob proposed in the spring of 2004 and we moved in together that May. The rest of that year was spent as a first-year teacher and wedding planning. We got married in 2005 and bought our first house together a few months later, and I transferred to the school I teach at now to get away from my lunatic boss.


In June of 2006 we decided to try to have a baby, and I got pregnant right away with Kenneth. Other than gaining way too much weight, that pregnancy was very uneventful until we went in for my 16 week ultrasound. We found out he was a boy, and then the next day my OB/GYN called me personally at 9am and told me that it looked like the left side of the baby's heart was too small. He told me I shouldn't worry, that it was probably nothing, but that I should go see a pediatric cardiologist in 5 weeks to make sure. I spent the rest of the day freaked out about it, and then refused to think about it at all until the night before my appointment with the pedi card. I let myself google "small left ventricle" that night and found out that the doctor thought my baby might have Hypoplastic Left Heart Syndrome, a defect that had the words "uniformly fatal in the first days or weeks of life if untreated" in its descriptions. Needless to say, I freaked. The next day brought the fetal echocardiogram at the pediatric cardiologist's office, where a diagnosis of Hypoplastic Left Heart Syndrome was confirmed and the options were given. The rest of 2006 was spent going to more doctor's appointments than I can count, and making plans and decisions to try to prepare for the birth of our very sick baby.



2007 was Kenneth's year. He was born on March 14, had his first surgery at 5 days old, and was put on ECMO (Extracorporeal Membrane Oxygenation; it's a huge machine that does the work of the heart and lungs for the body) after surgery because his heart wasn't coping. That month was a hellish rollercoaster of hopes raised and dashed, until finally we had to make the decision to try one last-ditch effort to fix his heart enough to function without ECMO, and then remove ECMO support for good or bad. He had been in secondary organ failure (kidney failure) since his first surgery, so he wasn't a candidate for a heart transplant. On April 17, he went in for a surgery to replace his defective aortic valve with a donor valve, and ECMO support was removed. He passed away in the OR and my world was shattered.

The funeral was April 21, and most of the days for the next few months after that are a blur of grieving. Grief has a life of its own and it irrevocably changes you, especially if you're grieving your lost child. I went back to work in the fall of 2007 and we did our best to live normally. When NYE of 2007 rolled around, both of us were just relieved that the year was over.



2008 was Grant's year. After months of trying, I got my OB/GYN to give me Clomid. 2 months in of Clomid treatment and I was pregnant again. The pregnancy was eventful, since I ended up with preterm labor and bedrest from the middle of September until I had Grant at 37 weeks on November 25, but it resulted in my wonderful Grant. Grant has been the picture of health since day 1, and once I got through post-partum depression (thank you, SSRIs) and got the hang of breastfeeding, it's been wonderful. He brought the light back into my life.


In 2009 we got to watch Grant grow, we sold our first home and we bought our second. We're dealing with foundation issues with the new house, but I think it will eventually get resolved in a positive way.

Overall, the past decade has been a whirlwind of major life events. I've had wonderful highs and terrible lows, but overall I have to say I've been blessed. This decade saw me marry the love of my life, get a good job in a career I enjoy, and give birth to two amazing sons. I have a comfortable home and I don't lack for anything that I need. Life has been hard, but it has also been wonderful. I can't hope for anything more. Happy New Year.

Now I'm really ticked

I said I wouldn't go into brother-in-law's nonsense in the last blog, but I think I will. I need to vent.

BIL was invited to come here from New Mexico for Christmas. He's bringing his friend/roommate that has become an adopted family member. He owns two spoiled rotten Lhasa Apsos that he apparently thinks are just like people.

BIL sent an e-mail out to the whole family this week announcing that he'd be bringing his dogs to my house and leave them kenneled in my garage for the three days he'd be here. He didn't ask us if that would be okay, he just announced it. I told him that I wasn't comfortable with that idea, and gave him the name and number for a reputable boarding business here in town that I've used before with my own pets.

This sets off a series of hissy fits via e-mail, with BIL doing everything in his power to try to manipulate me into giving in and saying the dogs can come. Since I don't take kindly to that sort of thing, and I have my own very good reasons for not wanting two spoiled dogs coming to my house, I once again told him no. My father-in-law even offered to pay for a pet-friendly hotel room for him, and that wasn't good enough ("I'd be too worried that the maids might let them out or steal them"). He sent me another e-mail trying to get me to cave in. I haven't responded yet.

For posterity, here are the reasons I don't want two yappy dogs that haven't been trained in my home:

*I have a large dog that doesn't like small dogs and who has never been introduced to the yappers. I don't want a dog fight on my hands.

*I have a 13 month old who likes to climb on dogs, pull their ears, etc. My dog is very patient with all of this and usually will just sit there and let him do it. Lhasa Apsos are not known as being a patient breed.

*The dogs aren't trained. They get into everything. They get on the furniture. I don't allow that sort of thing from my own dog, so why would I want it from someone else's?

*Let's say he actually does leave them kenneled in the garage the whole time like he swears (I doubt this. If I cave to letting him bring them, the next campaign would be for me to let them come out of their crates.). My cats get their food and water in the garage. Their litterbox is also out there. It's where they go to hide when they're overwhelmed by company, small children, etc. If I have two constantly yapping little dogs out there, the cats won't go in. This will mean cats that pee outside of their litterbox, most likely inside my house. Ever tried to get cat pee smell out of something?

*Finally, BIL didn't ASK if they could come, he TOLD us they were coming. I don't appreciate being told what to do in my own home.

I'm super pissed. Jacob says if BIL keeps this up, he'll find himself uninvited for Christmas. At this point, BIL can stay home for all I care, but he's his roommate's ride down here and I really was looking forward to seeing her. I'm not going to allow a manipulator to win, though. If I cave in, then he'll just push the boundaries on another issue. GRRR.

Pissed off

My husband's family is about to try the last ounce of patience that I have. I won't go into the latest reason why, but I do want some feed back on my father-in-law (he's not the most recent offender). FIL likes to ignore what I say about Grant, or argue with me. He apparently doesn't remember what it was like to raise babies, because he will do things that are not safe (try to feed Grant a tortilla chip when he has no molars) or not in the best interest of the baby (try to wake Grant up from a nap early because he thinks he's slept long enough).

I've been patient. I've explained my reasons, and I've told him more than once. I'm at my limit now. It's been building up for a while. Things like waiting until he thinks I'm not looking to give Grant coffee creamer when he was 3 months old after I'd specifically told him not to. Things like feeding him bite after bite after bite of his dessert at a restaurant when I got up to use the bathroom, after me telling him Grant could have ONE bite. Things like him arguing with me about giving Grant juice (Me: It's got too much sugar and he doesn't need it. Him: Well, you let him have fruit, he should have juice!). Things like getting him up from his naps when Grant's still asleep. The final straw was this last visit. It was 6 am, and we don't get Grant out of bed that early. If he wakes up, we leave him in his crib unless he starts to cry. Most mornings he'll just play with his stuffed dog and talk and then fall back asleep for a while longer. My FIL decided to get him out of bed while I was getting ready for work, even though I've told him several times on other visits that we don't get him out of bed that early. He then argued with my husband about it when he (for once, finally) told him that it wasn't okay to do that.

It makes me feel incredibly disrespected in my own home. I'm Grant's mom, and the decisions I make for him go. I don't care if FIL thinks I'm being dumb. He doesn't have to agree, he doesn't have to like it, he just has to follow our wishes when it comes to OUR SON and stop going behind our backs to do what he wants to do. I told Jacob that he needed to talk to his dad and be very clear with him that it was not going to be pretty if he ignored our rules for Grant on this next visit. I will have words with him if he pulls that crap even one more time.

It's hard because he's not a bad guy and he loves Grant to pieces. He's just used to being in charge of the family, and I don't think it's fully sunk in with him that Jacob is edging up to 30, is a married father of two, has an established career and is a second-time homeowner.... in other words, an ADULT. I think that some small part of my FIL's brain still sees Jacob as a kid, and therefore what FIL wants to happen should happen. Jacob has a hard time standing up to him because he respects and loves his dad. I think Jacob is finally starting to realize that he's got to stand up for me with his parents, because otherwise it's going to create some serious friction in our marriage.

Am I totally off base here, or is FIL out of line?
Is it crazy that I get jealous of heart moms that still have their kids here? I see them post updates on how their kids are doing and it just makes my heart ache. Kenneth would most likely have been up for his Fontan right about now if he had made it. I'm thankful that he's out of pain and will never have to endure another surgery, but the selfish side of me wishes he were still here regardless.

I haven't had one day go by that I haven't relived some part of Kenneth's hospital stay. I know that I've got some PTSD from it, but in a way I don't want to let go of those memories even if they are traumatic. Those memories are all that I have left of him. I'm jealous of the moms that have been able to make memories with their kids outside of the hospital. Is that terrible?
I had a blog topic come to me just now that I think is actually a pretty good one. It'd be good if people reading wanted to answer it for themselves, or add their own observations. My topic: How has being a wife and mother changed me?

Being a wife has helped me to mellow my strong will a little bit. I have a very "take charge" kind of personality, and I tend to latch on to an opinion or a way of doing something and run with it. That's a strength when you're a teacher, but it can be a weakness in your personal relationships since grown adults tend to resent feeling like they're being told what to do. Jacob helps me to recognize that fault in my personality and attempt to rein it in a little-- not that I'm always successful. Being a wife means that I no longer think in terms of "I" when I make decisions, but in terms of our family. It means I have to put another person's well-being above my own, which isn't always easy to do.

Being a mother has changed me the most, I think. Being a mother to a sick child is hard, and being the mother of a sick child that died is excruciating. Being a mother taught me what unconditional love really is. It's taught me that I am willing to endure anything at all if it means that my children are taken care of. It's taught me that being someone's mommy is the most important role I could ever fill. It's taught me to cherish every second of life, because life is uncertain and fleeting. It's taught me that I'd much rather get open-mouthed slobbery baby kisses and snuggles on the couch from my son than go out. Being a mother means that I willingly sacrifice things for my children that I would resent losing for anyone else.

My first child changed me in ways that I probably don't even notice fully. I know that I smile less than I did before. I know that I have a constant ache because he's not here. At the same time, I value life more because he showed me just how precious it really is.

My second child showed me that even after extreme hardship, joy is possible. He has changed me back into a closer semblance of the person I was before Kenneth died, and I don't think anyone else could have accomplished that.

Your turn now. Either comment on ways that you've seen me change since becoming a wife and a mom (if you've known me long enough to compare), or comment on how marriage/parenthood has changed or would change you. Should be interesting.

Strange dream

I dreamed about Kenneth last night. I'm not sure what to make of it.

In my dream, I was in a room with two cribs. One was the crib belonging to Grant, and the other one was full of stuffed animals, toys, and the like. I was panicking as I looked into the crib that was full of toys, looking for Kenneth. As I was looking, he stood up in this crib from underneath all of the toys, laughed, and put his arms up to be picked up. In my dream, he was the same age Grant is now, even though he died when he was a month old. I laughed and picked him up, and started looking for ways to take his ventilator and his ECMO pump with him so that I could take him out of the room with me. I told someone else in the dream that I could take the ventilator with me, but not the pump, and then I woke up.

Any wannabe dream interpreters out there want to take a crack at that one?

I sure miss that boy. Holidays seem to make his absence sharper.

My new normal

Grief doesn't have a time limit. This is a lesson I've learned the hard way as time has gone on. I've been fortunate in life to have not lost anyone close to me before Kenneth died, so his death and my subsequent grief journey is the only experience I have with loss. I've heard that the loss of a child is different, somehow, to other kinds of loss. I wouldn't know. I suppose one day, I'll face the loss of others that are dear to me, and then I'll have a means of knowing. Until then, I have this.

There are a thousand little ways that losing a child still hurts, even several years later. It's the small stab of pain when a stranger, smiling, asks you "How many children do you have?". It's the guilt you feel when you consider saying "One" when the answer is really "Two", just so that you don't have to see the pity in the stranger's eyes or explain that your other child is dead. It's the feeling of incompleteness in your home that will never really go away, because one is and will always be missing. It's feeling joy at watching your living child meet his milestones, while simultaneously feeling grief that you never got to see that same milestone with your lost child. It's going on with life with a measure of happiness, all the while feeling a little guilty because when your child died, you were sure your capacity for happiness died too, and to experience it again feels like a betrayal. It's feeling guilt for thinking of your dead child while playing with your living one.

Since we lost Kenneth, blogging has become my means of coping with his death. I can wrestle with the thoughts that plague me, get them out in writing so that I can organize them and make sense of them. I'd thought that I should change the direction of my blogs, but the reality is that Kenneth's life and death are such a huge part of me now. I cannot make him the focus of my "real life", because I have a living child who needs me and who should not have to live in his brother's shadow. Blogging about Kenneth and my grief allows me to keep it in it's proper place, out of my head and away from Grant for the time being.

This blog will continue to talk about Kenneth, and grief, and death, and life. They're all one big tangle in my head, maybe because they're all interconnected. Kenneth changed me permanently, and it would be wrong for me to pretend that my life is the same as it was before. Time has healed me of the anguish that went with his loss, but not the chronic pain that comes with knowing that he will always be gone. Time can't take away the well-meaning strangers, the little stabs of pain, the unreasonable feelings of guilt. They're a part of the new life that I have, a part of my new normal.

Blog slacker

I'm a blog slacker now. I used to write all the time, and now it feels like I have nothing to say. My days go something like this...

Wake up.
Eat and get ready.
Go to work.
Pick up Grant.
Spend an hour or two with Grant before he goes to bed.
Play around on the computer/watch tv
Go to bed.
Repeat.

I do have my share of angst and all of that good stuff, but I feel like I've already said all I can say about the bad stuf. I'm wanting to post about good things, but the good things seem to be hard to write about without coming across as trite. We have drama with the house, but I think at this point it's out of our hands. We'll hire the lawyer, bleed money to pay for the experts, and it will eventually get settled... or at least that's what we hope.

Life seems to vacillate between the mundane and major drama. I don't know if everyone's life is like mine, with all of the bizarre bad things that seem to happen, but it really doesn't matter in the long run. You take the hand you're dealt and do the best with it that you can. Whining isn't going to solve anything, even if it does make me feel better for a few minutes.

So. Good things. Grant has taken his first step. He'll be a year old in a week. I have a great husband, an adorable little boy, and a house that has a perfect floorplan, even if the foundation is crap. LOL. I do miss hanging out with friends, but if that's the price to pay for having kids, I'd pay it over and over again. Life is what it is, and it's time I stopped bitching about it and start making the best of it.
I read a book cover-to-cover yesterday. It's called "The Lovely Bones", and plot follows a girl who has been murdered at age 14. She's in her heaven, watching her loved ones and her murder.

The book brought up thoughts I've had off and on since Kenneth died, thoughts I'm sure that all of us have had from time to time. What really happens when we die? I know what the Bible has to say about it, so I don't really want to look at it from that angle right now. I want to think outside the box.

I've never had what you'd call a "paranormal" experience. Some people talk about having their deceased loved ones visit them in their dreams. I haven't had that, either. I didn't really care about the paranormal stuff one way or the other before Kenneth died, but I now have a morbid curiosity.

I don't want to go to some con artist and throw money away for the chance to 'talk' to Kenneth, but I do have this burning desire to know if he's really okay.

I guess some questions will always be unanswered.

S-T-R-E-S-S-E-D

Things have been so stressful around here lately. The whole house issue is part of it (okay, a big part of it), but we've also had a sick baby all week and an announcement from my school district that they'll be doing a Reduction in Force, aka "RIF". That's layoffs, in normal people terminology.

The district isn't being very clear on who, exactly, will be subject to the RIF. Ordinary jobs would let people go based on seniority, but not NEISD. Seniority is last in the list of four criteria to be RIFed. At the moment I can't remember what the other three are, but I'll look it up again later. From what I understand, they'll look at each specialty (EC-4 generalists, music teachers, science teachers... you get the idea) and decide how many positions need to be cut. They'll then look and see how many people from within those specialties will be retiring or not returning to the district in the fall. If that takes care of the need to reduce staff, then nobody from within that specialty will be let go. If it doesn't, then a number of people will be on the list to be RIFed. They'll then look at those people's certificates to see what areas they're certified to teach. If they can move a teacher to a different subject area within the district, then they'll do that without letting them go. If not, they get canned.

I *think* I'm fairly secure in my job, just because they'll be opening 2 new schools in the fall. I've been with the district for 6 years now (7 at the end of this school year....how is that possible??), so I have some seniority. What I don't have are extra credentials on my certificate. I'm torn about that. Do I add to my certificate, knowing that could mean that I'd have a job, but I'd be teaching something I don't necessarily want to teach? Or, do I just leave it alone, stay a music teacher, and risk the RIF? For that matter, I could be RIFed regardless of what other credentials I add. I hesitate to add to my certificate because I know I'd be miserable teaching a TAKS subject or being a classroom teacher with the same 20 faces all day long. I hate the beauracracy and paperwork part of this profession, and being a music teacher allows me to avoid a good part of it. Being in a classroom would mean that all of the things I hate about the teaching profession would be magnified.

There's another option that may or may not end up panning out. Hector (the PE teacher I work with) and I have been kicking around the idea of doing some consulting and teambuilding. People in that industry get paid quite well. What gave us the idea was a consultant that came out and did a full day workshop for our school and one other school back in August. The activities that he did were all the types of activities that Hector and I do with the kids all the time. A lot of them were Orff-Schulwerk based, which I have training in. A lot of them were standard teambuilding techniques, which Hector has a background in. That consultant was paid over $2,000 for a day's work, plus expenses. There's no way we'd make that much to start; that consultant has a reputation and therefore can charge a fortune. Hector's pretty confident that we could pull in $500 each for a full day, though. If we could get off the ground, there's a huge market for people that do that sort of work within the education world and also within the corporate world. We're thinking we'll start it off as a side gig for the time being and see where it goes. It would be really nice to be able to set my own schedule to a degree, and maybe be able to earn a living on my own terms without having to work under somebody else. I'm sure there would be things about a job like that that I'd dislike, just like with any other job, but my fantasy is that doing something like that would allow me more time with my family.

To move away from job stress, I mentioned earlier that Grant's been sick all week. Last Saturday, he was running a fever of nearly 103, so we took him to the ER. It shook me up pretty badly even though Grant was okay and just has a virus. The sound of monitors alarming set off a PTSD trigger for me and I had to really work to stay calm and focused on Grant. Having to hold him still so they could poke him not once, but three times, to draw blood didn't help matters any. I was really wanting to be able to go to the support group for parents of kids that have died of a heart defect so that I could talk about it to people who get that, but Grant was still sick and I didn't have anyone to watch him, so I had to stay home. I'm better now, but it really messed with me for a few days. The nurse thought I was one of "those" moms until we explained why the sound of monitors alarming bothered us. We took him home after all of that, got him into bed, and I drank a big glass of wine to calm down. Not fun at all.

Combined with all of this is the issue of our house. To fix our house's foundation, the engineer said that they'd have to drill holes every 7-8' on our slab and drop piers to a depth of 25'. It's a major, expensive repair. Regardless of whether the builder decides to buy us out of the house or fix the house, it will mean we have to move out of here for at least a little while. I'm hoping they can fix the house and just compensate us for the reduction in value that we'd see from having this done. We love this house. It's perfect for us. If it's structurally sound, I can see us living here for a long, long time. BUT... the repairs will be at least a third to a half of the value of the home, assuming they can fix it correctly the first time. I wonder if it's possible to fix this house correctly at all. From the looks of things, Lennar will probably try to say that the foundation isn't really as FUBAR as the engineer said it was. That will mean taking them to court and a big pain in the ass.

All in all, the whole house situation is a big mess. If the builder doesn't do the right thing, we'll have the hassle of having to fight to make them do the right thing. If by some miracle they do the right thing, we'll have to move out of this house and into a hotel while repairs are made, or move out of this house into a rental while we search for a different house to buy. I hate moving with a passion. Moving over 20 times in the course of a 28 year life will do that to a person.

As my brother-in-law said to my husband: "If you didn't have bad luck, you'd have no luck at all". I'm sure feeling that way right about now.

My lemon house

So. My new house is a lemon. It has major foundation issues. Major. It has a 4" difference from one front corner to the opposite back corner. For it to be in code, it wouldn't be able to have more than 1" of difference. It was within code when it was completed in June, which means that there's been 3 inches of foundation movement in a very short period of time. We're seeing lots of symptoms of foundation movement in the house, but I don't feel like listing them all here. The structural engineer that we hired said that he'll recomend a total foundation repair, which he estimates will cost between $50-100K.

We'd work with Lennar's warranty department, but there are other houses in the neighborhood with the same sorts of problems, and Lennar is trying to get away with not fixing the issues. Sooo...we're hiring a lawyer and will take them to court if they don't do the right thing. The "right thing" as far as we're concerned is to either buy the house back (which would make me sad, I love this house) or fix the foundation correctly. If they choose either option, we also want them to reimburse us for our expenses, including the lawyer's fees. If they choose not to play ball, we'll take them to court. Going to court will be a long, drawn-out hassle, so I hope that they agree to just fix the problem. I won't hold my breath, though. If Lennar chooses to be ugly about it, the gloves will come off, and they'll find out that I don't scare easily. Anybody want to help me man a lemonade stand in front of the sales office?
My firstborn child,

There are days that I still miss you so much. I wish that I could reach up to Heaven and hold you, or talk to you and see what your personality is like. You have a brother now. It's strange to think that he's your little brother, yet he's already 10 times older than you will ever be. I wish that there was a way to bring you back to us, healthy and whole, so that our family would be whole again. There's always someone missing, always a hole where you should be.

Sometimes I look at Brian and Keith and I just can't believe that you'd be doing all the things that they're doing now. You'd be running around, getting into things, maybe even talking back and giving me lip. You'd be well into the stubborn terrible two's. Would you like trains and cars? Would you be obsessed with your favorite color and fight your naps? I like to think that you'd be a good big brother, trying to help Grant learn new things and being protective of him even when he's driving you crazy. I like to think that you'd like to crawl into my lap and give me slobbery toddler kisses and bear hugs and let me sing you sleep.

I know that your life wouldn't have been easy if you'd stayed. You would have needed at least two more major heart surgeries, and really you probably would have needed a transplant. When I look at the pictures of you from right before you left us, you looked so tired and like you were in such pain. I know that you don't hurt where you are, but oh your daddy and I hurt. Is it selfish of us to wish that you'd lived, even though your life would have been full of hardships and physical pain? I guess I'm selfish, because it still feels so wrong to have you gone.

Other moms talk about their angel children visiting them in their sleep, but I don't think I've ever had a real visit from you. I don't know if that's because I just don't remember the dreams or if you can't come to see me, but I get so jealous of those other mom's dream visits. I'd be able to see you and hold you again, even if it was just in my dreams. If it's okay, could you come to see me, just once? I've even thought about paying a shyster medium, just for the glimmer of a chance that I could talk to you again. Then again, you were so little when you died, well before the age you could have spoken- would you be able to talk to me? I just want to know that you're okay, that death isn't the end. I want to believe in heaven and that I'll see you again, but it's so very hard when I can't know for sure.

Sweet boy, I don't cry for you every day anymore, but not a day goes by that I don't think about you and what might have been. I love you, your daddy loves you, and your brother will know about you. Your absence from our lives is felt daily, and believe me when I say that just because I don't cry every day doesn't mean I don't miss you on a visceral level every time I take a breath.

We see dragonflies all the time here at our new house. I like to think that you send them to us. I hope that's not just wishful thinking.

I love you, little man.

Mother Daughter Relationship

My mom and I have an interesting relationship. On the one hand, we're very close. We talk almost every day, and usually we get along well. On the other hand...well, nobody ever has the power to hurt you like your mom does.

Grant's first birthday is coming up in November. I've been planning to have his birthday party on his birthday, which falls on the day before Thanksgiving this year. I've been talking about this for a while now, and I know I've talked to Mom about it more than once before today. The only reason we'd move his party to a different day is if Jacob's work schedule doesn't cooperate. So what does Mom tell me today? "We're going to do our Thanksgiving dinner on Wednesday this year, because it's the only day everyone has off". I reminded her that Grant's birthday is that day. She said that they'd work out Thanksgiving for a different day. I figured the problem was solved.

She called me back later to say "We have a problem. We always celebrate Roxanne's birthday on Thanksgiving". Roxanne is my sister, and she'll be 18 this year, but her birthday isn't until December. We usually celebrate her birthday early to avoid celebrating it too close to Christmas. Mom wanted to know if I'd be willing to combine Grant's birthday party with Roxanne's. When I didn't want to, she started to lay on the guilt.

Maybe this sounds like a petty thing to be upset about, but this isn't the first time. I'm expected to give up or share my special days (and now my son's special days, apparently), but others in the family won't do the same for me. When I got married, I'd had the date set for 6 months at least when my sister eloped (different sister) and decided to set their ceremony of blessing for the weekend following my wedding. I was (and I guess still am) really hurt by it, because it was my wedding day and I wanted to be the focus for that one day. My family was angry at me for being hurt and basically told me that I shouldn't be hurt, that it was selfish of me to be hurt for being expected to share my wedding day preparations with my sister. I sucked it up for my sister's day, but it hurt.

Grant's first birthday is a really big deal for me. It's a validation that he is going to be here for a long time to come. All of the other kids in the family have had their own birthday celebrations and haven't been expected or even asked to share theirs with someone else, so it bothers me that I'm expected to just drop my plans for Grant's first birthday or include someone else in his special day. I'm especially bothered that when I said that I really didn't want to make Grant share his birthday with his aunt, I was made to feel guilty and my mom started to make comments about Jacob, as if Jacob was the reason I didn't want to have Grant share the day.

She did apologize to me later about it, but it still bothers me.
There's a saying that I'm sure you've all heard before: "To have a child is to have your heart walk around outside your body". Those of you with kids would probably agree that it's a true statement.

What do you do when part of your heart is outside of your body and out of your reach forever?

Living without my firstborn is living with a constant ache. There is always someone missing. Always something else that should have been but never will be. The day Kenneth died, my heart was ripped into a million little pieces. Some of the pieces have come back together again, especially since we now have Grant as well, but the parts that belonged uniquely to Kenneth are still missing and will always be missing. How do you get used to living without your child?

I haven't had much choice over these past two years but to keep moving and keep living. The other option is to curl up and die, and there are too many people that need me for that to be an option. I don't understand it when I get the comments of "you're so strong". I'm not strong at all! I'm a good actress, that's all. I'm very good at pretending things are fine when really, they aren't. Two years later, and I still have days when the fact that Kenneth isn't here is like being kicked in the gut.

The thing is, at this point people expect you to have gotten back to normal. In the first days and weeks or even months after a loss, people give you a lot of slack, but two years later and you're expected to have put your grief into a little box and close the lid. In order to get through the day, I use that box, but I can't keep it closed indefinitely. He was my child, my precious little boy that I wanted to raise and hold and love, and for some obscene reason we were cheated out of that. It will always hurt to think about what might have been, what should have been.

I want my little boy back, and I can't have him. I want my family to be whole, and it will never be whole. I want so desperately to know what he would have been like as he grew up. It's so hard not to be bitter about this, even now, two years and a half years later. Bitterness is poison, and I know it is, but how do you come to the point of acceptance with this kind of a loss? How do you tell God, "Thy will be done", when His will was to rip your precious child away from you? How do I teach Grant that God loves us when I doubt it so often now?
I've had writer's block for a little bit now. Maybe it's the fact that we're moving in less than two weeks and that I went back to work, so things are just a wee bit crazy around here. Maybe it's because I just don't have anything interesting to say. Who knows. Anyway, this is my attempt to get past my writer's block and put up a blog.



We'll start with the cutest member of my household. Grant is saying "mama", "dada", and "whoa" for sure. We're not positive, but we think that "goodbye" is also on the list. He's mastered the art of furniture creeping and has started letting go with one or both hands. I'm thinking he's going to be walking in the next few weeks or so. He's 9 months old, which means his first birthday is coming up very soon. I'm thinking we might do dragons as his party theme, just because my sister-in-law is awesome at cake decorating and a dragon cake would be really cool. For the time being, though, he's been going around the house making this face and blowing raspberries:







Work is okay. My principal leans towards the micro-managing side of things, but she tries hard to be reasonable, so no real complaints there. The advantage to being at this school for my 5th year is that most of the kids know me pretty well and know my expectations. It also means that I've gotten most of them to trust me, which means that I can now plan more interesting activities because I can usually get the kids to buy in to what I'm doing. We've gotten all sorts of cool technology toys to play with, so that makes life easier on a lot of things.



The major downside to working in an elementary school, especially one that is housed in a 50 year old building, is that you work in a germ factory. I try to keep my hands clean and use hand sanitizer often, but little kids are wonderful for doing things like sneezing directly in your face or picking their noses before coming up to give you a hug. We just finished up the first week, and I already have an ear full of fluid, a sore throat, and a baby with croup. Yippee! Croup is usually viral, so Grant has to stay home from the sitter on Monday. Jacob and I haven't decided yet which one of us will be taking off of work to be home with him, but I'm thinking it'll be Jacob. I'm already going to have to take several days off for house stuff, so Jacob wins the extra day off this time around.



As usual, I miss Kenneth like crazy. I packed up the plaster casts of his hands and feet last week and lost it for a few hours afterwards. It's funny how little things will come out of the blue and slap you with grief. I never would have thought I'd still have bad days like that this far out from April of '07, but I guess I learn new things every day. I find myself wishing that he were here for me to chase after and be exasperated with, since he'd be two now. I guess at every stage of what should have been his life, I'll have those moments.



I feel like an lunatic for saying this, but I'm already starting to get baby fever again. I really don't want our kids as close together as they would be if I had another right now, though, so we wait. My sister just recently found out she's pregnant again, so I guess I'll live vicariously through her for now. Hopefully that'll stave off the baby cravings instead of exacerbating them.

Starting to have the baby bug again means I've been thinking a lot about the number of kids we'll have. We're buying this awesome 4-bedroom house with lots of space, but we're only talking about having one more baby at this point. Logically, I know that we really shouldn't take the risk of having another heart baby more than once more, but emotionally, I don't feel like I'd be "done" with just two kids at home. Maybe I'll feel differently once the next one comes along and I actually DO have two kids at home, who knows. Maybe we'll eventually adopt, but I'm honestly a bit gun shy about adoption after watching some of the things my parents have gone through as adoptive parents. I then feel guilty for feeling that way, because there are so many kids out there that need good, stable, loving homes. I guess I should just put those thoughts aside for now, since there are too many "what-ifs" to make any good decisions at this point.



I guess I managed to break my writer's block, since I just wrote a short novel instead of a blog.

He still matters

A friend of mine works as a Juvenile Corrections Officer. Her kids are, by and large, hardcore kids convicted of crimes. She told me a story about what she did at work last week that really touched me.

Apparently, her boss wanted her to try a Music Therapy group with her kids. They'd had a few sessions, and this week she decided to bring in songs that had impacted her life in some way. The kids were to listen to the song, decide what they thought it was about/how it might have impacted someone, write those thoughts down, and then they'd discuss as a group. They did that with several songs, having a short conversation about each one when they were done.

The last song that she picked to play for them was "Godspeed" by the Dixie Chicks. This was one of the songs that I chose to play at Kenneth's funeral.

The kids listened to the song, and wrote about it as instructed. My friend told me that the emotional response to the song was huge, even before she told them why the song had impacted her. She told them Kenneth's story, and they talked for over 20 minutes about it. Some of her boys were in tears-- hardcore kids with criminal records, crying over my son's story.

Later that night, one of her boys stopped her. "Ma'am, tell your friends that maybe sometimes things happen so that something else can happen. Maybe they wouldn't have had another baby so soon if that hadn't happend. Tell your friends that I'll pray for them".

It amazes me that a tiny little baby who didn't live more than a few weeks can still have such a profound impact on people that have never even met him, over two years after he went to heaven. It touches me in immeasurable ways that my Kenneth mattered, still matters, and is remembered by more than just Jacob and I. He may not have ever left the hospital, but he can help a hardened kid let down his walls and feel empathy for someone else.

That's pretty huge, if you ask me.

Busy busy

We've ben really busy over the past few weeks. Our house is under contract, so we've spent a lot of time consumed with house-hunting and mortgage applications and all of that good stuff. The good news is that we got a really good offer on our house, and we've put earnest money down on the new house. The bad news is that I'm going to have to move at the beginning of the school year. It's going to be well worth it, though.

We just got our inspection report in with the list of things that they want us to fix in our current house. The first item is having our HVAC serviced. No big deal. The second one annoys me, though. The dishwasher was running when the inspector showed up. It was on the "pots and pans" cycle. The inspector wanted to see if it would switch cycles, so he pressed the "normal" button and it didn't switch cycles. Umm, yeah. That would be because it was already in the middle of a cycle, so if you want it to change cycles you'd have to press "cancel" and then "normal". The buyers now want me to get an appliance repair person out to fix a dishwasher that isn't broken. It switches cycles just fine if you know how to use the dishwasher-- I just checked. Annoying! The good news is that those are the only two things on our repair list, so I guess I can't be too upset.

The new place is 2225 square feet, 4/2.5/2 with a game room and a HUGE yard. It's got stone on all 4 sides, established trees in the back yard, and the builder put in some nice upgrades and incentives like a sprinkler system and a free front-loading washer and dryer. It's about a half block away from the community playground, which will be so awesome once Grant is big enough for it. We talked them down $17,000 from their original asking price, so I'm happy about that, too. Once we get through the stress of moving, I think it's going to be awesome.

A friend of mine asked me if we were planning on having more kids to fill up all of the bedrooms at our new house. The answer to that is "yes and no". We're planning one more baby and will probably try again when Grant is about 2ish, so that's the "yes" part. The "no" part is that we probably won't have more than one more (unless, God forbid, I end up with twins or something). It makes me a little sad to think that I'll only be raising two kids, but Jacob and I are both in agreement that the odds of having another baby with a left-sided heart defect are just a little too high for us to be comfortable with taking the risk more than once more. Why a 4 bedroom house if we're only planning one more kid? We figure we'll have one bedroom for each child and a guest room.

Grant hit several major milestones in the past week. He's now pulling himself all the way up to standing, furniture creeping, and can climb up onto the landing of my stairwell. He's decided that he's too big for baby food and will only allow you to feed him if you put something on the high chair tray that he can feed to himself and give him spoonfuls in between bites. He's also all of a sudden turned into a major momma's boy and will bury his head in my shoulder if someone he doesn't know talks to him. And, my favorite development of this week: he's been making a roaring noise when he plays that just cracks me up. I have no idea where it came from, but it's adorable.

That's about all that's going on here. It's back to work for me on Monday, so I'm sure I'll have more to say soon :).

Materialistic?

I mentioned on my other blog that we're in the process of selling our house so that we can buy a bigger one that will hopefully be the one that we stay in for the next 20-odd years or so. We're looking at pretty nice homes, because 1) we can afford it and 2) we want to be someplace we're reasonably sure will hold value or gain value over time. This brings up interesting comments from my mom.

I love my mom very much. She and I talk about once a day or more. Sometimes, though, I wonder if she knows me at all. While we're talking about house stuff, she made yet another comment that Jacob likes the prestige of having nice things. This confirmed something that Jacob and I have talked about more than once-- that my family sees beeing broke as a sort of badge of honor, and that since Jacob and I earn decent money (that we work very hard for, mind you), we are no longer in the club so to speak. I explained to mom that prestige has nothing to do with it. We work hard, we earn enough money, and we can afford nice things. It would be one thing if we were sinking ourselves into massive debt to pay for nice things, or if we spent money just for the sake of spending money, but I think we manage our money fairly well.

What it boils down to is that my mother disagrees with me working. She thinks that we could make it on just Jacob's salary. It doesn't matter how many times I show her bills vs. income, and that while we could *barely* make our bills on just Jacob's salary, it would allow for absolutely no saving whatsoever and no health insurance. If I work, though, not only can we pay all of our bills, have good benefits and save, but we can also afford nice things and give Grant (and his future sibling) a college fund. She thinks we're being materialistic by making the choice to have me keep working. We think we're being prudent. After Kenneth, I refuse to be without health insurance if I can in any way prevent it. As for savings, well, we all know that expenses pop up when you least expect them.

What kind of hurts about this is the continuing insinuation on the part of my family that we're materialistic. Materialistic people place great importance on things rather than on people. We enjoy having nice things, but if something happened and we lost them, it wouldn't be the end of the world. I don't buy name-brand things unless they're on clearance. I don't get my nails done. I don't carry a Coach purse or wear $300 jeans. We do have 3 vehicles, but 2 of them are paid off, 2 them are 8 years old, and one of them is 5 years old. We'd just have 2, but Jacob's car was given to him outright by his parents, he loves that thing, and he wanted a truck for hauling household things and such, so rather than trade in his car we kept it and bought a 2001 single-cab used truck. My car is a stripped-down Toyota Corolla with over 100,000 miles on it, and it's the car I use for commuting back and forth to work. You wouldn't believe how much flack we get for having three vehicles. It'd be one thing if we had three brand-new vehicles, or even if we had two brand-new vehicles....but we don't.

Jacob and I are trying to make sure that Grant has a good start in life, and that we don't end up in our retirement years with absolutely nothing. My parents are 51 and 49, and they have no savings whatsoever. I'm not faulting them for that-- most of the reasons that they're without savings are things that were completely beyond their control. I just would like to do my best to keep Jacob and I out of the same position. If we save and invest now, with any luck we'll have enough set back to carry us through emergencies and retirement alike. A house is an investment, not just a place to live. If Jacob and I work hard, there's nothing wrong with also having nice things and a nice place to live. I wish my mom would see it that way too.

Maybe it's my perspective that's off here?? Tell me honestly, guys-- are we materialistic?

Everyday blessings

Yesterday was our fourth anniversary. My grandpa is in Austin (he lives in Michigan with my uncle) for the next week, so we decided to combine the two and make a day of it. We picked up my sister and my nephew and then drove out to my mom's house for the afternoon. Grant got to meet his great-grandpa, and then my mom watched Grant so that Jacob and I could go have a nice meal together for our anniversary.

We ended up going to a local restaurant called Gumbo's, which turned out to be exremely good. After that, we went to Half-Price Books and cleaned out their clearance children's books. We then went back to my mom's for a few hours to visit with my Grandpa. All in all, it was a very nice day.

Since Grant got into bed late last night, he slept in for us a bit this morning. Right now I'm watching him crawl around the living room floor, playing with his toys. He looked up at me a minute ago, gave me a big grin, and went back to his toys.

It's moments like that that make me feel like I'm the most blessed person in the world.

Faith in the face of disbelief

If you've been reading my blogs for a while, you know that one thing I've consistently struggled with since Kenneth's illness and death has been my faith. I thought I'd get more into that discussion today.

I was brought up by my mom, who was a single mother due to divorcing my psychotic father when I was 7. When I was little, I was taught to believe in God but not taken to church on a regular basis. After the divorce, Mom became increasingly more religious and as a result started taking us to church regularly. Over the years we attended churches of several different denominations: Methodist, Lutheran, another Lutheran, and finally a non-denominational fundamentalist Bible church with decidedly Baptist leanings.

I don't remember much about the Methodist church, other than I liked the children's church activities and it had red carpet.

At the first Lutheran church, my best friend and I got to serve as acolytes on many Sundays, which I loved doing. The pastor of that church, Pastor Bill, was also a used car salesman. He sold my mom a car that turned out to be a major lemon and screwed her over on the warranty, teaching me religion lesson number 1: Just because someone claims to be a Christian, doesn't mean they act like one.

The second Lutheran church was one we went to for most of my early adolescence. We were very involved there, with me being in the youth and the adult choir, the handbell choir, and youth group. My mom was active in the singles group. The other kids were horrible, though. I can remember being in youth group one night, and a group of girls were taunting one girl mercilessly. They called her a lesbian over and over again, loudly, and had her in tears. The youth group leader watched it happen and didn't do a thing about it. Incidents like that happened fairly often, so I stopped going to youth functions and limited my involvement to the adult choir and helping with the 3 year old Sunday School class. I helped with the 3 year olds until one mother pulled me aside and berated me for wearing a "slutty" dress. I was 12. I'd grown since the last time I'd worn that dress and it had gotten a little too short for me. The woman screamed at me and told me to stay away from her daughter. I was reduced to tears, told my mother, and that ended my involvement with helping the 3 year old class.

After we left that church, we were all pretty jaded by our experience with a big church, so we decided as a family to try a small one. We visited Manchaca Bible Fellowship and liked it, so we stayed for the remainder of my high school years. In the beginning, it was a good place. Their mission statement was "Rightly Dividing the Word of the Lord", and their main focus was on teaching theology. Sermons were an academic affair, with the Pastor teaching complex theological points and the adults taking notes. There were quite a few homeschooling families, which my mom liked because she'd decided to homeschool my brother and sister by that point. AWANA was big in that church, and my younger brother and sister both got very involved with that. I was much less involved with anything youth related, partly because I'd been turned off of youth groups by the last church and partly because I wasn't homeschooled like my brother and sister were.

Good things came out of that church. My mom met my stepdad there, and my sister met her husband there. Bad things came out of it too, though. My brother was introduced to drugs and alcohol by kids from the youth group, and stolen from by those same kids. My sister was ostracized by the youth group leader. The pastor's teaching changed from simply being Bible teaching into teaching about things like "unity". It started to become cultish. I graduated from high school and started refusing to go. The rest of my family stopped going somewhere around a year or so later.

From that point on, I haven't attended any church regularly. I still count myself as a Christian, but I've been burned too many times by church-goers to be interested in regularly attending a church. I've found exceptions to that rule. The church that we chose to get married in wasn't chosen for any reason other than the price was right and it was a beautiful building, but the pastor of that church turned out to be a wonderful person. If it wasn't such a long drive from my house, I might consider going to that church from time to time. Even after all of the things that happened in the churches we went to growing up, I still kept my faith. I figured that people would dissapoint you every time, but God never would.

At least, I felt that way until Kenneth.

I've been over the anger and disappointment I've felt with God, so I won't go into it again here. Praying for my son to be allowed to stay with me, only to have him taken away, has shaken my faith. I want to believe, I do. I can't help doubting now, though. All of the standard Christian answers to the question of "Why does God allow suffering?" seemed sufficient to me before I had such an intimate aquaintance with watching someone I loved more than life suffer. Now, they seem like empty platitudes. I don't think that Christians understand why God allows suffering ay more than the rest of the world does. Maybe it has to do with living in a world that has sin, but that seems to be a farcical answer when you're talking about the suffering of a newborn baby.

So on the one hand, I now have doubts. Big doubts. On the other, I cling to hope. Hope that my faith is real, hope that everything I've ever believed isn't just a big lie made up by men in order to feel better about their existence. Hope that even though my son is gone from this earth, that he still exists in spirit somewhere. Hope that I'll get to see him again when I'm done with life here. Hope that Grant will get to meet his big brother someday. I have a sense of wonder as I watch Grant meet his milestones, and I know that the miracle that is his life can't be anything but the result of a Creator. How is it possible to have such conflicting views about my faith all at the same time?

As it says in Mark 9:24 "...Lord, I believe. Help my unbelief."

Blogging here now

I've made an executive decision to discontinue my MySpace blog and move over here. Hopefully y'all will keep commenting and such on my disjointed thoughts.

I've been struggling with what to put in my blog. For a long time it was my vehicle for expressing my grief over Kenneth. I still grieve, but I'm to the point now where I have more good days than bad. Moreover, I now have a reason to move forward with life rather than constantly looking back to death: my second blessing, Grant.

I'm constantly amazed by him. I'm sure most moms feel the same way about their children, but it doesn't stop me from feeling awed at the gift I've been given. I am responsible for shaping a little life. If I stop to think about it too much, it's almost overwhelming. My parenting choices will help to mold him into the man he's going to be. I find myself praying a lot while I nurse him in the evening before bed. I pray that I'll be able to be a good mother to him, that I can teach him right from wrong and help him to be a good man. I find myself praying that his life will be easier than mine has been, that I can keep him safe from the bad things in this world.

I hope that God is listening to those prayers more than He listened to my prayers for Kenneth.

In any case, any blogging suggestions would be welcome.

Please help me get this legislation passed!



This is an issue very near to me. My first son was diagnosed with a very complex CHD called Hypoplastic Left Heart Syndrome when I was still pregnant. He underwent two major open heart surgeries, ECMO, a heart catheterization, plasmapheresis, and several "minor" surgeries before he passed away at just over a month old.This is K before surgery.Photobucket


Very little is known about what causes most CHDs. Nobody can tell us if there is a genetic factor, or if it was a random occurence. There is very little in the way of research dollars currently, but a bill was introduced in Congess recently that would change that. I'm going to copy and paste an e-mail I received from a group called It's My Heart. I hope you'll take the time to write your representatives in support of this bill.


Dear IMH Supporters,

You did it! Thanks to all your letters, emails, and visits, and the efforts of our partners in the National Congenital Heart Coalition and at the American College of Cardiology, late yesterday the Congenital Heart Futures Act was introduced in both houses of Congress! In the Senate, Senator Dick Durbin of Illinois led the charge joined by Senator Thad Cochran of Mississippi. In the House, the bill's lead co-sponsors were Representative Zach Space of Ohio and Representative Gus Bilirakis of Florida. We are thrilled that this groundbreaking piece of legislation has already received bipartisan support. To learn more about the bill visit http://durbin.senate.gov/showRelease.cfm?releaseId=309944


So what's next? Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation, which is bill S. 621 in the Senate and H.R. 1570 in the House. It just takes a minute - here's how you do it:1) Go to http://www.senate.gov and http://www.house.gov/ to look up your representatives and their email addresses 2) Draft your email - (Templates below)3) Make your letter personal to you. The template has a place to add two or three sentences about why this legislation matters to you personally, and offers some samples to help get you started. 4) Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress. That's all there is to it!


Please forward this email to friends and family to request their participation.If you are a constituent of Senators Durbin or Cochran or Representatives Space and Bilirakis, we encourage you to email or call their office and let them know how much you appreciate their leadership of this effort. Need more information? Contact advocacy@itsmyheart.org with any questions

TEMPLATE

Dear [Lawmaker name here]


I am writing as a member of the Adult Congenital Heart Association to ask for your help in making a brighter future for all those born with heart defects. Yesterday the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570)and help all those born with heart defects live longer, healthier lives.


Congenital heart disease is this country's number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.


----- Insert 2-3 sentences saying why you care - some examples:


From an adult patient: Since being born in 1956 with a complex heart defect, I have undergone 4 open heart surgeries and am currently on disability due to my heart. I have struggled to get the information and care I need to take care of my rare condition, as doctor after doctor answer my questions with, "we just don't know". The federal government should use my tax dollars to do the research to get those questions answered, so that both today's adults and tomorrow's children get better care.


For a parent:My daughter was born with a complex heart defect and underwent three open heart surgeries before she was three. I want to be hopeful for her future, but right now I know there is a severe lack of research, awareness, and resources available to help us help her do well as she gets older. Please help me help my daughter survive to become a healthy, productive parent and grandparent.


For a family member or friend:My grandson was born with a complex heart defect and underwent three open heart surgeries before he was three. I want to be hopeful for his future, but right now I know there is a severe lack of research, awareness, and resources available to help us help him do well as he gets older. Please help me help my grandson survive to become a healthy, productive parent and grandparent.


From a health care provider:As a doctor taking care of congenital heart patients I struggle to find the information and resources I need to help these patients thrive. These patients face high risks of developing additional heart problems as they age, and we have limited information on best treatment strategies. Many health care providers are unprepared to care for their complex life-long needs. Please help me protect this pioneering and vulnerable population.----- To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.

Thanks in advance for your help in securing a future for all those living with congenital heart disease.

Sincerely,

[name]
[full mailing address]
[email]

My baby is cuter than your baby
























A Wedding, a Funeral, and a Birthday

This past week was my school district's spring break, so I had 9 whole days of work-free bliss. When the week started, all that we had planned was to attend a good friend's wedding and mark K's second birthday in heaven. As it turned out, we ended up having to drive to Dallas to attend a funeral as well because the younger brother of my husband's best friend passed away from an aggressive cancer.

T was my husband's best friend's brother, and he was only 25 when he passed. He left behind a wife of less than a year. I never met this brother, but I've spent some time with J's (J is my husband) friend. This is the friend that J spent his entire childhood with, and he stood up with J at our wedding. At T's funeral, I felt like a moron for crying, but I couldn't help myself. I was crying out of sympathy for T's mother, because I know what it feels like to bury a son. Something like that is hard whether you bury your baby at 1 month, like I did, or at 25, like she did. You aren't supposed to bury your children. It goes against the natural order of things.

The pastor who gave the funeral service said the standard "God's ways are not our ways" and "God hears our prayers" speech. I've heard that many times in my life, especially back when we attended a super conservative Bible church when I was in high school. I don't know what to think of that. I really don't know what I believe anymore. I prayed and prayed and prayed for K to be healed, but he wasn't. I'm sure T's mother prayed for a cure for her son, and he died too. I don't know. If God can heal the sick, then why does He heal some but not others? Why not my son? Why not T? I guess I'll never understand that one.

The wedding that we went to was on K's second birthday. In a way, it was good that we had something happy to distract us, because we both have been having a hard time with his birthday this year. Some of it is because we also have two nephews that were born within weeks of K, so they both had their second birthdays as well. Some of it is because we now have our handsome little G, so we know exactly what we missed out on with K now. Some of it is just that you never really are "over" losing your child; you learn to live with it, and some days are good while other days are hard.

The person who got married is a girl I've known since high school, so she was around for everything that happened with K. To backtrack a little, dragonflies have come to symbolize K for us. We painted his nursery with dragonfly stamps, and got dragonfly crib bedding for him. His room in the PICU (pediatric intenive care unit) had dragonflies painted on the ceiling. The bride's mother told me that I needed to look closely at her bouquet, so after she was done taking pictures I asked her if I could see it. She'd found tiny little dragonfly appliques and put them on the bouquet in honor of K, since she was getting married on his birthday. I was so touched that she remembered my little boy like that on her special day.

Right now, G is sleeping away in his crib. I wonder if K would have been like G is, happy most of the time and just taking in the world. G is such a laid-back little guy. As long as you keep his tummy full and his diaper clean, he's a happy camper. It's hard to know what K's personality really was because he was kept so sedated most of the time in the PICU, but from what little bit I was able to see he was a lot like G is. I guess I'd like to imagine that my boys would have had a lot in common.

So... happy birthday, K. I'm so sorry you're not here to celebrate it with us, but I'm thankful that in heaven, you have a whole heart instead of half of one. We miss you, and I promise that your little brother will know about you as he grows up.