Monday, August 30, 2010

Calling a Child "Dim"

I understand that I am sensitive to labels on children, or anyone for that matter, more than I ever before have been in my life. I am trying to reign back being overly sensitive, but found myself unable to stay silent today.

This morning, when I read a friend's facebook status, she described a child that her son played with as "dim". When I asked her what she meant by that, she replied "The truth" and when I commented that I felt that this was offensive, she went out of her way to defend what she had said and accused me of jumping on the bandwagon of "social sensitivity" and that she was amused at "the effect that the truth had on those people who were supposed to be loyal to the truth." and to "stop pretending that they are not what they are to make their existence more acceptable".

I was extremely upset and offended and posted several arguments (very logically stated) to point out that she should NOT have said that. She defended herself hardcore, not even attempting to acknowledge that perhaps she was in the wrong by describing him as such. When she finally commented that she was done, but that I was free to continue commenting, I gave up and de-friended her.

Am I crazy to be this upset? I don't care what point you're trying to make, why single out one characteristic about a child that denotes a certain intelligence level? To me, this is not OK. I don't want someone to think about my child in terms of intelligence level. I want them to look at her characteristics as good or bad such as they would look at any other child. So, we're just going to say the truth? Does that mean you go around telling people to their faces when you think that they are ugly? No, because no matter what the truth may be or no matter what your opinion is, this world still calls for a certain amount of tact. I don't feel that referring to a child as "dim" is tactful or kind by any stretch of the imagination.

I think I am even more upset because when I tried to point out to her how offensive this was to me, she refused to back down or apologize for her statement. Who does that? Even if you feel that you are 100% right, if someone is so obviously offended, would it be so hard to just make a statement apologizing for the offense?

Please tell me that I am not alone in this. I am still a bit shaken from this entire encounter, and find myself wondering if I should have just kept my mouth shut when someone was obviously so bullheaded and responds so badly to any opinion different than their own. What would you have done? Is it better to just feel hurt silently or to speak up and then end up being more upset when you see the true ignorance and uncaring nature of "friends"?

Sunday, August 29, 2010

a little white sun dress

After church this AM, we tried to get some good pics of Addison in her adorable dress and of Aaron when he was actually wearing something other than his S&D "work uniform". A few pics of me and Chubbs are thrown in as well.

Hmmmm, wonder where the blue eyes come from?

a quiet father/daughter moment




Chubbs loves her Daddy


She does not love sitting up against a tree

she liked the grass much better

love the random leg sticking up....ha


love that smile!

Friday, August 27, 2010

Desire to Control

I realized something about myself tonight. Something that has changed since I had Addison. Well, actually so many things have changed it would take a much longer post than this to list everything. One big change just occurred to me tonight, and I wonder if this is normal. I appeal to you, my blogging friends for your opinion and help.

Before Addison, I was very much a "wing-it" person. Small details might fall by the wayside, but I didn't care. I would throw aside lesson plans at times and just go into class with a few general concepts I wanted to get across. (can't believe I just confessed that) I would throw parties that were perhaps disorganized in the lack of detail planning on my part. Areas of my house would go always unclean because I just didn't care (not visible areas).

Recently, I have been focusing much more on the tiny details, desperately searching for things that I can control. So many things have been out of my control completely the last year of my life that I search for any tiny thing that I can grab and hold onto and I feel as though I have the power to change the situation and LOVE IT.

Exhibit A: tomorrow we are hosting an informal kickball/cookout for some friends out on our lawn. Earlier this week, I found myself making table diagrams explicitly planning where each dish that other people were bringing would be placed exactly on the table and how the tables would spatially relate to each other and where the tables would be placed in relation to the kickball bases. (I didn't think it was weird until Aaron laughed at me) I freaked a co-worker out a couple of days ago as we were discussing a class that we are team teaching and I was desperately trying to over plan everything so not one class period would fall out of my control. I spent almost an hour today cleaning out my refrigerator (what???) It is cleaner than perhaps any fridge that I have ever been responsible for.

I am responsible totally for the dessert tomorrow. Aaron pointed out tonight that I have the dessert that I planned and made- a backup to that- a backup to the backup- and a backup to the backup of the backup (?) Also, the original dessert is a cake that I used paper cut outs to practice the design over and over again. Seriously? It sounds weirder in type than it did in my head.

I could go on, but these are the details freshest in my mind. Is this normal? I feel like it might not be a good thing, but also great for becoming a more organized person (note, I'm not saying that I am now super organized. I am just saying that there are random things that I seem to grab hold of and not let go). I feel as though I should relax and try not to keep my life tightly clenched in my fist, but it is hard because so much of my life has already changed when I didn't ask or want it to. Don't get me wrong, I love being Addison's mom, but honestly, at times it is still so hard. Just because you accept something doesn't meant that the pain goes away.

I really enjoy caring more about these details, but I feel as though it might my already "uptight" personality spiral dangerously toward psychotic.

Thoughts? Anyone else face this problem after having a child with special needs and how did you deal with the desire to control before it took over your life completely?

New Jeans

So, I love the end of the season clothing sales....I love stocking up on super cute, girly clothes for Addison for next summer. All that to say, after work yesterday, my sister- in- law and I hit the mall to check out the sales. I did find some cute stuff, but my favorite thing was actually some new jeans for Chubbs from Children's Place (that were on sale, but not end of the season). I LOVE them. I asked her if I could borrow them and she just laughed at me. Ha. I hope someday we can share clothes. (-:

Anyway with new jeans, what is the first thing that we must do? Model them, of course. Chubbs is becoming quite the model...

sorry for my toes in the pic.....lol


"WAIT!!!! Do these make my butt look big???"

"No? Phew!"

"Are you sure?"

"Oh, OK. Thanks."

back to modeling now




....and we're done...
I'm a little obsessed with these jeans. (In case you couldn't tell by the gazillion pics) Now to go buy some awesome sweaters and puffy vests to go with them. YAY for fall coming!!!!

Bath Bath Revolution

Wednesday, August 25, 2010

random pic update


"uh-oh, i just realized..."

"..i must have left my wallet at home..."
"solution: look as cute as possible..."

Chubbs, aren't you a little young to be playing outside by yourself???

couldn't resist throwing in a pic of my roses...they make me smile...

the eating experiment (as suggested by addison's OT). strip your baby down. put baby food on the high chair tray and let them experiment with the food. ha. here is how it went.


"not sure what is going on here...."
"i don't think i like it"

"oh, there's daddy. must not be too bad"

"yay!"

"here's what i think of this activity:"

attempting to free herself from the bumbo and, ultimately, sitting practice. where there's a will, there's a way.

"ahhhh, this is much more comfortable."

Monday, August 23, 2010

Heart Surgery, Leukemia- Stroke

Our day started at 8:30 am at the hospital for an appointment with Addison's cardiologist, Dr. Yeager. I knew that he wasn't going to let Addison off of oxygen. I just knew even before he told me. Even though her oxygen saturation numbers are great without the oxygen, her heart/lung pressures are still extremely high, even after her heart surgery and six months of almost 24 hours a day of oxygen and sildenifil every 8 hours. Sigh.
He went as far to say that her second hole (which they hoped would close up on its own) hasn't closed at all and we should talk about closing it surgically. He said that that perhaps still wouldn't solve the problem, but was our best bet at this point. He said that we should schedule the surgery before she hits the 9-12 month range since it is just unsafe for her to continue with these high pressures. He said there is a slight chance that it could be closed via catheterization, but that that was ill advised for a baby Addison's age. Hopefully that isn't entirely out of the picture. Sigh. It looks like we still probably be heading back to Boston for another heart surgery within the next few months. They will decide and call us back in a few weeks.

Addison watching Baby Mozart during her Echo....I think she actually enjoyed it...as long as I kept her hands away from the technician (the nurse got her hand too close to Addison's mouth, and Addison latched on and started eating her hand...)
After that appointment (hours later) was finally over, we trooped downstairs to the lab to get Addison's blood drawn to do all of her six month tests- including re-checking to make sure her transient leukemia hasn't developed into real leukemia. That always stresses me out. We had to sit and wait forever, too. Of course Addison fell asleep while we were waiting...


Being woken up by a needle pricking your foot is never a good thing, but Addison surprised me. She was such a trooper. She didn't even cry. She made a couple of faces, but just snuggled down into my arms and gripped my finger. What a big girl!

From there, we rushed home and got home just in time to take a quick bath (the echo gels are so messy, I wait until afterward to bathe her and she was stinkier than I had anticipated so we just couldn't put that off any longer). As soon as bath time was over, Addison's OT arrived for her appointment. It was a really great appointment....except for the fact that she (Tracy, the OT) said that she was moving out of state this weekend and this was her very last appointment with us!
So Sad! Tracy played a big part in helping us get rid of the Mic-Key button so fast, and I really liked her! )-:

From there, I tried to take a nap, but found that I was too stressed out to relax, so I cut out coupons while Addison napped and we hit the grocery store and saved $125.79 (spending less, our goal each time), which was a wonderful feeling, but so much work! Addison, once again, was an angel. As soon as we hit the first aisle and I pulled out my coupons, she took one look and fell fast asleep and didn't wake up until we got home. She is such a good shopper (knock on wood). It is such a wonderful feeling leaving the grocery store with a car full of stuff, knowing that the grocery store paid you to take most of it away. But again- exhausting. We ran home and I taught a clarinet lesson and then here we are- trying to unwind. Sigh. What a day.

Now we just wait to hear back from the leukemia test and when Addison's next heart surgery will be. I think I should have taken that nap....at points today I felt as though a stroke wasn't too far off. Some days are just harder than others.

Sunday, August 22, 2010

Socks Inspire Grandma

One of my co-workers gave me these socks a couple of weeks ago. SO CUTE! There was only one problem. Addison had no clothes that matched....hmmm..when Grandma Smith saw these socks it inspired her to greatness....
Teaser shot of the outfit that Grandma made around the socks

What did Chubbs think of the outfit from Grandma? I think she liked it.

"Posing time to make mom happy. Look bored. check."
"Coy model pose:"

"Look excited? easy one."
"K, are we done here?"
"Wait, I wasn't ready for that shot!"

"This is stupid."
"A little more like it. I like to play with this cool ball."

"Wait, now I have to sit up? Ridiculous. If I can't see her, maybe she can't see me and will stop taking pictures."

"I don't think my strategy is working..."

"Plan B: Crying until Daddy comes to rescue me."

"Oh Daddy, there you are. Please make this madness stop! Mom has totally lost it."

"WHEEEEEEE!"

Thanks, Grandma Smith for the cute outfit- and thanks, Abby for the socks! Only the best and cutest for our Chubbs!

Saturday, August 21, 2010

Addison's "Birth" Story

I realized today that if you just happened upon my blog, it might be confusing to just delve in without any background knowledge of what has happened in our lives this past year. I think that recording some of that journey is part of the therapeutic process of healing for me and helps you understand better where I am coming from. So here goes. Here is Addison's story.

Last year this time I was pregnant. Pregnant and very, very sick. I won't go into details, but it was a very hard summer. I was excited to have my first summer off ever, and I had plans to garden, decorate my house, etc. I did none of that. I lay on my couch and watched the entire show Gilmore Girls. The entire thing. To this day, if I see an episode of Gilmore Girls, I feel sick to my stomach. I was so sick all summer! It's OK, I spent the time dreaming about my perfect baby that I couldn't believe I had to wait nine whole months to meet! (I am impatient by nature)

Last fall, when I was 16 weeks along, I went back to work as a part time music teacher at two different public schools, a high school and a middle school. It was hard to work when I was still so sick, but I made it through somehow. There were days when I would be driving to work, realize I had forgotten a plastic bag and just open my door and vomit on the road while I continued to drive. Not fun (or safe).

After being back at work for only a few weeks, Aaron and I went in at 19 weeks for our big ultrasound to find out the gender of our baby. We were soooo excited! Our anticipation was strong. I remember posting as my facebook status that day "Deanna can't wait to see what we find out at today's appointment." Very ironic, considering after our doctor told us that we were going to have a little girl (yay!), she also told us that our baby had two large cysts on the back of her neck.

She tried not to alarm us by saying it was probably nothing, but that we should go to the high risk pregnancy center at the hospital to get a more detailed ultrasound to see what was going on. She said that it could be nothing, or it could be a marker for something much more serious. She finished the appointment by telling us not to go home and google what the "something more serious" could be. I remember leaving the appointment in my own car (Aaron and I had come from our respective jobs and met there) and calling my sister. All I could get out was "There's something wrong with my baby" and crying. I was devastated. I didn't know what was wrong, I was just so blown away by the possibility. I wasn't expecting at all to find out something like this.

That was a Thursday and our appointment with the high risk center was that coming Monday. Being such an impatient person, the suspense was killing me. I was imagining the worst. The next day at work, I was teaching a first block class and it was so bad at one point, that I just had to walk out on my class and take a short "time out" in my office because I was crying and didn't want to cry in front of my students. I made something up so my students had no idea that I went to my office, cried my eyes out and then returned to cheerfully finish the class period.

Monday, at the high risk appointment, we had another ultrasound and we had to meet with a genetics counselor- Dr. Brown. He took Aaron and I back through a winding hallway to a conference room, sat us down and talked to us about the "options". He said that because of the cysts (the second ultrasound had revealed 4 instead of 2) there was a 1 in 2 chance of something being seriously wrong with our baby. The top two choices were either Down Syndrome or Turner's Syndrome. He recommended that we get an amniocentesis done to see for sure. He had a somewhat depressing personality, and although I'm sure he is extremely intelligent, he did not have much of a "bedside manner" which everything he said seem that much worse.

Aaron and I went home and discussed getting an amnio. We had told Dr. Brown no because of the risk of miscarriage, but he said all we had to do was call back if we changed our minds and they would fit us in. I remember going home and being so extremely upset. I felt so out of control of my life at that moment. I didn't want to talk to anyone about it- I didn't even want to talk to Aaron. I walked out of the house and just kept walking. I wasn't trying to run away. I simply didn't know how to vent the frustrations and feelings that I was experiencing. This was all happening inside of me. Surely this was somehow my fault. A part of me hoped that this was just a mistake. Another part of me knew something was wrong- had suspected it from the beginning of my pregnancy.

After being picked up by Aaron driving through our neighborhood until he found me, we discussed further getting an amnio and decided that for our sanity and peace of mind, we had to go for it. I knew I wouldn't be able to sleep a wink for the rest of the pregnancy until I knew for sure either way.

We went in for the amnio pretty much the next day. They scheduled me in right away. I called in a sub for work so that I could go on bedrest the rest of the day. The amnio procedure is awful. It involves a needle being inserted into the sac where the baby is to draw out some fluid to test for abnormalities- enough said. Aaron for some reason wasn't sure if he was going to be able to come because of a work obligation, so I asked his cousin Kristen to come hold my hand, which she graciously did. Aaron did end up coming, just a little bit late, and it was nice to have the added support. The procedure was short albeit painful, but the hard part was really what was next- the waiting.
I don't remember exactly how long we had to wait. I think it was a week. I had called and left a message for Dr. Brown on the day that he said that he would call us back with the results, waiting for that call to tell me that everything was OK- that they had scared us for nothing. That call never came.

I left work around 3pm, running out the door a few minutes early since I don't get cell phone reception in my office, and I didn't want to miss his call. When I reached my car, I saw that I had a message from him. He said that he needed to talk to me but was just now going into a dentists appointment and he would try back again when his appointment was over. He revealed nothing in the message, but his voice sounded grave.

I drove home, trembling, waiting for my phone to ring. Forty five minutes later, it finally did. It was Dr. Brown. His first words were, "I am very sorry, but the test came back positive for Trisomy 21. Your baby has Down syndrome." In the same tone of voice that one might say "I'm sorry, but your baby died." He kept talking, but I didn't hear anything else he said. He kept asking if we wanted to come in to talk about it, but I knew for a fact we didn't. We didn't want to hear our "options" again. We didn't have the amnio to terminate the pregnancy if something was wrong. I for sure didn't want to hear his depressing voice keep saying "Trisomy 21" and "I'm so sorry" over and over again.

I was home alone and my heart was broken. I called Aaron to tell him and he came home soon after. I just remember crying and crying. There had to be some mistake! I kept expecting my phone to ring again with Dr. Brown saying that he was sorry, he had mixed up test results, of course our baby was perfect! But that call never came either. That night was the first time I have ever seen my husband cry. We cried together- for the perfect baby that we had "lost" and for the unknown of having a baby with Down syndrome. Neither of us knew very much about children with Ds.
Those next months were the hardest months of my life. I couldn't talk about it without breaking down and sobbing, so I did a lot of my communicating via the computer. I didn't even call my own Mother for weeks. I just couldn't deal with the grief of others on top of my own. If they wanted to cry, fine, it's just that I couldn't be the one having to do the comforting. I received some very sweet notes from friends- people I hadn't heard from in years. The notes flooded my facebook inbox. Those notes got me through those first few weeks. People saying I was blessed, had been chosen, that Addison was still perfect.

Someone sent me the "Gifts" book relating stories of other parents who had been blessed with children with Ds. I read this faithfully, but it still didn't stop the grief. For two months straight, from the moment I got home from work to the moment I finally went to sleep- I cried. I cried more in those months that I have the rest of my life combined. I found that I didn't want to be alone. When I was alone it all became real. When I was around other people, I could pretend that everything was normal- that this nightmare wasn't actually my life.

I felt as though this was all somehow my fault. I felt as though people were looking at me and thinking that something was wrong with me that I couldn't have a "normal" baby. I remember thinking that perhaps Aaron or his family would be sorry that I had married into their family because I possessed bad "genes". When people would tell me that it wasn't possible that my baby had Down syndrome because I was only 25, it made me feel like "What in the world is the matter with me that this is happening to my baby?" What had I done wrong to deserve this? It didn't feel fair. I felt like a defective Mom.

It was so awkward being around people at first because they didn't know what to say to me. Silence hurts much worse than perhaps saying "the wrong thing", because silence shouts judgment and pity. I just needed a hug here, a smile there, and normal behavior. Most of all, I still wanted people be excited about my pregnancy- to continue asking normal pregnancy related questions and not look at my growing belly as though it was a giant mistake.

I was afraid that I wouldn't love my baby. I would never dream of aborting my baby, but I did pray that God would intervene. I used to desperately pray for a miscarriage. I felt like dealing with my baby dying would be easier than picturing the horrible life I had ahead of me- having a daughter who would be mentally retarded and all of the stereo-types that accompany such an image. I would feel her kick and move inside me and would resent it. This wasn't my perfect baby. This was some monster growing inside of me that I was stuck with. I remember driving my car one day and just hoping that another car would hit me so that I would lose the baby and the nightmare would go away. (Judge all you want, but until you have been there, you really have no idea)

I could say more, but I'll stop there. That really was the darkest time in my life.

I don't remember the exact moment things started turning around. I think it was when I kept continuously having pre-term labor symptoms and had to keep going back into the hospital onto the labor floor. I got to the point where I was excited at the though of meeting my baby and started thinking about her as a baby and not as a syndrome. I got to the point of acceptance. The unknown still scared me, but when I thought I might have her at 25 weeks and then at 30 weeks and so on and so forth- I realized that I wanted her. I didn't want her to die. I wanted this baby no matter what. This was the baby- the gift- that God sent me. I didn't understand it. I didn't like it. But I accepted it. I got to the point where I could talk about it again; where I could look forward to meeting my daughter. It really helped when the people around me started being excited for me again- throwing baby showers, sending sweet notes in the mail, giving outfit after outfit of adorable baby clothes that would make any baby proud. Also- time helped heal the wound. I am so thankful that I was able to grieve before the birth of my sweet baby, although it made for a super difficult pregnancy.I also got to the point of trust. Trust that this was God's plan all along for my baby. Trust that He had created this baby perfectly and just for our family. Trust that GOD DOES NOT MAKE MISTAKES. Blaming myself for something that God sovereignly ordained- waste of time and energy. How foolish to think that I was responsible for the work of our Almighty God.

This doesn't mean that the pregnancy from then on out was easy. I remember doctor's appointments where instead of preparing a birth plan, the doctor tried to prepare me for the high chance of a still birth. Or, another bad moment- when the doctor asked me if I wanted medical intervention for my baby if she needed it at birth or did I just want nature to "take its course". The kicker was when she said "That's what we ask all parents of handicapped children".

I got to the point where I would stop telling people that my baby had Down syndrome because everyone would always stop congratulating me on the pregnancy and say instead "I'm sorry." This was all hard enough without having to deal with the "I'm sorry"s. I was having a baby! Be excited for me! I wanted to yell at times. This is the perfect baby for me and my husband.

Jump forward to January where I was put on bedrest at 36 weeks because of high blood pressure- going to the doctor's three times a week for non-stress tests....jump forward to February 5th when they finally decided to induce me...jump forward to 31 drug free hours later when I finally had my perfect baby. (I choose to have a natural birth so that Addison would be more alert to breastfeed after she was born. Sadly, they didn't let me try to breastfeed her until she was 3 weeks old)She came out screaming as if to announce to the world "Here I am....watch out!" After a few minutes, she started to turn blue. Her daddy was right there with her the whole time. I got to hold her briefly right after she was born and right before they took her to clean her up...but really, that hold doesn't count since it had to be kept very short due to the fact that she was slipping from my grasp.

They decided to put her on oxygen and take her to the NICU to figure out why she wasn't able to keep her color without oxygen help. They whisked her away before I got a chance to properly meet her and Aaron followed close behind. Next thing I knew, I was alone in the room where I had just labored for 31 hours. I looked around the empty room and thought, "I think I just had a baby. Didn't I?"I remember my mother-in -law coming in and telling me that she was proud of me and that they had seen Addison while they wheeled her by on the way to the NICU. After she left a NICU resident came in to give me a garbled update- pretty much interpreted "We don't know what is wrong, so we're just going to keep guessing".

Aaron came back in, and I was wheeled down to recovery- with empty arms.

It was 2 in the morning by the time we got down to our room, so we tried to sleep. It wasn't until the next morning when Aaron wheeled me up to the NICU that I really got to see my daughter for the first time. She was covered in wires and tubes, but she was beautiful. The nurse let me hold her, although I found out later that the nurse got in trouble for moving Addison. I was so thankful because it was a couple of days until I got to hold her again.
Basically, they didn't really know why she was responding this way. They had done an echo on her when I was 22 weeks pregnant, and had determined that her heart looked fine. They did another echo when she was a day old and discovered that her lungs had extremely high pressures. They thought that could be because she was so puffy and fluid was pressing down on her lungs (she was born with a lot of extra fluid) or maybe holes in her heart that they were waiting to close up. Basically, everyone had a different theory that they told us.

They also discovered that she was born with transient leukemia and had a very high conjugated biliruben. Because with any movement at all her numbers shot down, they wouldn't let me try to feed her, so she had a feeding tube alternating between her nose and mouth. (this is why they did surgery at four weeks to put in a g-tube) They put her in an isolation room and she did not look good. Nobody knew why she was responding the way she was and they didn't know what to tell us.
Basically, the first five weeks of our little Chubbs' life were very hard. Addison needed a lot of machines just to keep her alive. One night we got a call in the middle of the night saying that she had a cut in the back of her throat from the feeding tube and she couldn't stop bleeding so they were trying a blood transfusion to help her blood clot and just wanted to let us know. One day, they were going to intubate her to try a new medication saying that if they intubated her, it would probably months before she could come home. It seemed like it was thing after thing was wrong and that we would never be able to bring her home. We discussed me going back to work while Addison was still in the NICU since it looked like she might be there until the end of the school year (Feb-June).

Day after day of sitting alone with her in the NICU as many hours as I could be up there- I learned how to care for my daughter best I could. I learned to change a diaper around a lot of tubes and machinery. I learned how to take her vital signs and how to set up the feeding tube. I knew what all of the numbers meant on the screen and where the stickers needed to go on her chest to read just right. I knew which wires I could detach to pick her up and which ones needed to stay. Night after night I left her there in the care of the hospital and came home to sit in her beautifully decorated, empty nursery.

I would breast pump in there while looking at pictures of Addison. Those of you who might complain about having to get up in the middle of the night to feed your infant- try getting up in the middle of the night to use a pumping machine....not as cuddly for sure.

Aaron and I grew a lot during this time. He would go up every night after working a full day and read her at least one bedtime story and just touch her arm or head and talk to her. Often he would fall asleep next to her bed and not come home until hours later.

Did Addison surprise everyone by being well enough to come home after only 5 weeks? yes. Did she become strong enough to eat on her own and get rid of her mic-key button after only four months (the dct said she would need it at least for a year) ? yes. Did she go to Boston to have heart surgery and come home with renewed energy a short two days later? yes. Has she wrapped her chubby little self around our hearts, forever changing our lives and the way we love? yes.

What am I ultimately trying to say? God is good. He is good all of the time. Because while I had fearful introduction to becoming a first time Mom, it was all part of His plan for my life. God was still good throughout it all. He protected the life of my daughter, He grew me personally, He strengthened our marriage, He provided for our every need even though I had to take a lot of unpaid time from work- He took care of us in every way possible. This was a hard path, but God provided the grace to make it through this difficult time.

The good news? Two surgeries, many many doctors appointments later- I have the most beautiful and perfect daughter in the world living here at home with me. She is still on oxygen, but we have just learned to live with it. We are hoping to get rid of it here within the next few months. Addison is doing so wonderfully on and off the oxygen! (I have started my own weaning process for her) She is a healthy, chubby little girl who delights on getting into trouble and smiling heart melting smiles.

I could write so much more about our experiences and about our beautiful daughter, but I will stop since this is already sooooo long. I just want to express how completely Addison has stolen my heart. When I was pregnant and not sure if I would love her- I wish I had an inkling for how amazing my daughter would be and how much good she would bring into my life. When I thought about how much my life would change, I had no idea that it would change for the better. When I cried, thinking about the concept of my "perfect" baby dying- I had no idea that I was just defining the word 'perfect' incorrectly.

Addison Lynnette Smith is the best daughter than any mother could ask for. Has it and will it continue to be hard at times? Absolutely. But that is what parenting (and life) is all about. I thank God every day for Addison. I wouldn't change a thing about her.
...and that is Addison's story...the beginning of it anyway...I know she will continue to surprise and amaze us! I love you, Chubbs!

Updated: November, 2010 Addison finally came off of oxygen (-: Read about it here.