Our sweet baby girl was born with a rare skin disease called Epidermolysis Bullosa. On the day she was born our lives changed forever. Through her life God has shown us his power, comfort and healing hand. We are blessed to be Ella's parents and can't wait to see what God has in store for her life.
Monday, March 21, 2011
Better Late than Never
We just got back from a wonderful weekend in the Outer Banks. Neither Joe nor I had been before, so it was a great trip. Our friends Casey and Christy have a beach house there (ok, Casey's parents have the beach house) so we spent the weekend hanging out at the beach house and seeing the sights. We did venture to the beach one day, but it was very windy and a bit too cold to really enjoy it. Ella did get to try her hand at building a sand castle.
Of course she had some help from daddy. He grew up on the beach so he knows how to build sand castles like a pro!
The girls also got to go fishing. Ella was especially excited to catch Nemo. I didn't go into the details about what kind of fish Nemo is and that he's really not the catching kind. Ella was a bit jealous of Ginny's Princess fishing pole, but I told her that when we visit Wyoming I am confident that GiGi and PawPaw will ensure she has whatever fishing pole her heart desires.
We had a ton of fun hanging out with the Grubbs family. Joe and I met Casey and Christy when we were all engaged. We became fast friends and have remained close every since. It's so much fun watching our girls (who are just 3 months apart) become friends. Ella and Ginny were so funny playing games together and watching movies together.
For Christmas Santa brought both Ella and Ginny Snow White lip gloss. At one point they were standing in a room together just watching each other put the lip gloss on. Ella told Ginny that they matched lip gloss, to which Ginny bolted out of the room (she was running to tell her mom that they matched). Ella was very confused. She looked at me and said, "Oh man...she ran away!" Needless to say, Ginny came back and she and Ella resumed applying their grape flavored glitter Snow White lip gloss.
We had a blast and hopefully we can go again sometime when it's warmer and we can actually enjoy the beach.
Friday, March 18, 2011
Before and After (AKA: Working and Not Working)
I’ve been at this whole Stay-at-home-mom gig for a little over 6 months now, so I thought I would give a brief update on my life before SAHM and after SAHM.
Before: 1 cup of tea in the morning with salt and vinegar potato chips for breakfast. Sometimes 1 cup of tea in the afternoon but it was decaffeinated.
After: 2 cups of tea in the morning with cereal for breakfast (as much as I love my salt and vinny’s, I just can’t set that kind of breakfast example for Ella). Usually a cup of tea or soda in the afternoon and it’s always caffeinated.
Before: Lunch at Subway or out with friends.
After: Lunch at home with a homemade sandwich, a bowl of cereal or leftovers.
Before: Spend my days in front of a computer, in meetings, or in my car going from place to place.
After: Spend my days making Irish Soda Bread, Homemade play dough, cookies, brownies, etc.
Before: Business attire (suit with dress shirt, nice dress with hose and heels, dress slacks with coordinating blazer)
After: Jeans, jeans and more jeans! With various sweaters and t-shirts.
Before: Run to the grocery store after work to pick up what we need…and yes, sometimes I would call Metti on her way to our house and ask her to pick up a gallon of milk.
After: Clip coupons, plan out what to get at which store, and shop at 3 different stores to ensure I’m getting the best deal.
Before: Come home and throw dinner together…usually Hamburger Helper, spaghetti, chicken breast or London broil with whatever frozen veggies we had on the side.
After: Yes, we do still have the above meals, however now I make many more soups and casseroles and I actually try to marinate the chicken or London broil with more than just salt and pepper. We haven’t had Hamburger Helper in a long time (although all 3 of us love it).
Before: Send Joe’s dress shirts to the cleaner to have them washed and pressed.
After: Wash Joe’s shirts at home and wake up early each morning to iron one for the day (it’s too daunting to spend hours ironing all of them at once).
Before: Maid=clean house.
After: No maid=dirty house.
Before: Spend all day Saturday trying to catch up on all the things I didn’t have time to do during the week.
After: Spend Saturday hanging out with Joe and Ella doing fun things like going for walks, going to the park, etc.
Needless to say I love being at home. There are things that I miss (oddly enough I miss getting to dress up), but this has definitely been the right move for our family. Ella is doing better, I am doing better, Joe is doing better and our family unit is doing better. I feel so much more at peace with my life. I felt a lot of guilt for working. I felt like Ella got the worst of me. She got me after I had worked all day, after everyone else had taken the “nice” out of me, when all I really wanted to do was come home and sit on the couch in front of the TV. And as soon as I would walk in the door the first thing I had to do was put her through pain for the next 2 hours during a bath and bandage change (no wonder she cried when I got home). And the quality time we did get was while I was scrambling to cook dinner. Like I said, things are much more at peace.
Monday, March 14, 2011
Coupons, coupons, coupons!
I love games…always have. My paternal grandfather (the original Paw Paw) taught me to play Gin Rummy when I was a kid, and it was all downhill from there. When we would go visit in the summer Paw Paw and I would spend hours playing Gin Rummy. I think I only REALLY beat him once, although he did let me win a few times. After Joe and I were married I tried to teach him how to play. After losing game after game he decided that we weren’t meant to play card games together. Additionally, Joe tried to teach me to play chess. After one night of lessons I beat him 2 games in a row. We haven’t played since. Joe also taught me to play Texas Hold ‘Em, but when I play with him I know when he’s bluffing, so I don’t join too many games. In college my friends and I spent countless nights playing Spades or Hearts, and when I lived in Boston my roommates and I would spend all day and night playing game after game. All that to say, I love playing games!
In fact, before Joe and I got married, and even after we got married, we were members of the famous Alexandria BGC…Board Game Club. Ok, so it wasn’t exactly famous, it was just some friends from church who would get together and play board games. But we always had a great time! Unfortunately as people got married and started having kids, our BGC time came to an end. I miss the BGC. Maybe it’s time to start another one…a family friendly version.
The odd thing about me liking games is that I’m not too competitive. I don’t get upset if I lose (others may disagree), and I much prefer to play games for the fun of playing, not to win. I do, however, love the feeling I get when I master a game, specifically video games. A few Christmas’ ago Joe bought me a Nintendo DS. I play it nearly every night and have completed several games. As soon as I finish one I’m back at the store looking for another. I don’t know if I was excited or embarrassed when Joe’s niece and nephew asked me to help them complete Super Mario Brothers on their DS.
All that said, I have found a new game. And unlike the others I’ve played, this one is actually beneficial! It’s a coupon game! I started playing last summer mainly just to see how much I could save. I wasn’t very good at it and stocked up on a lot of good things, but not really the right things (we still have 6 bottles of shampoo and conditioner and about 6 sticks of deodorant). I didn’t really know all of the rules…yes, there are rules.
I kind of went on a hiatus for a few months, mainly because I didn’t feel like it was very practical. I was getting great deals on the stuff I was buying, but I still had to pay full price for the stuff we needed (meat, milk, eggs, etc.). And keeping track of the coupons was really hard for me. I didn’t have a good system so I would end up with a whole lot of expired coupons shoved all over the place. For Christmas I got not 1 but 2 copies of “The Coupon Mom’s Guide to Cutting Your Grocery Bills in Half.” This book taught me all about couponing: how to get the best deals, how to organize my coupons, how to save on things that I need but there aren’t coupons for, etc. With this help of this book Joe and I have been able to cut our grocery bill down to $50 a week…yes, even I’m shocked that we can do it. And I can promise you that we aren’t living on tuna and Ramen Noodles (even though I did make a pretty mean tuna casserole last week). We are eating normal meals, some are even more elaborate than I made before our strict grocery budget. I’m pretty impressed with us, if I do say so myself.
I think I was most excited last weekend when I made Joe take me to CVS before church. There were 2 things I wanted to pick up, but one thing in particular. Joe and I both wear contacts, and if you don’t wear them just know that contact solution is very expensive…it makes me cringe every time I have to buy it. So, at CVS they had contact multi-purpose solution on sale for $7.89. This was already a good deal since the regular price for this particular brand is $9.99. To add to that I had a coupon for $3 off…now we’re down to $4.89. As fate would have it, this was also available for CVS Extra Care Bucks (like money in your pocket) so I got $4 in ECB. Yes, you read right, that means I basically paid 89 cents for a $9.99 bottle of contact solution…an 89% savings. HOLLA!
When I get great deals like this it absolutely makes my day! It gives me such a feeling of satisfaction and like I am really contributing to the family budget. I am convinced that I could get better deals if we lived in a less expensive part of the country, but at least I can get some good deals. Paying $11 for $30 worth of meat isn’t too shabby.
Friday, March 11, 2011
God is SO cool!
Anton's back story is heartbreaking. In a nutshell, he was born via surrogate and had a twin brother. When the babies were born, the parents only wanted the healthy child and thus left sweet Anton in the hospital. He has spent the first year of his life pretty much laying in a hospital bed.
When I saw on facebook today that it was official and Anton had been placed with Vanessa and Jason, I almost freaked out...ok, I did freak out! I was crying my eyes out and had to instantly text Vanessa to tell her how excited I am...then I called Patrice because I knew she would be freaking out too, and at least if we were freaking out together then we wouldn't look like complete fools. I don't know the time frame on how long it will take for them to get him, but I am so excited that God has blessed this precious boy with this awesome family...and vice versa!
I know we have some awesome readers so if any of you would like to help the Delgado's out and donate to his adoption, you can do so by clicking here.
Just look at this precious face!
Wednesday, March 9, 2011
Lent
I’ve never given anything up for Lent. In my mind it was always something those who attended the Catholic church participated in. As far as I remember, my childhood church never endorsed or even suggested that we participate. When I moved to Boston many of the people who attended my church had at one time been Catholic, but for various reasons converted. Although they attended my church on Sundays and considered themselves Baptist, many of them continued to participate in Lent.
Over the years I have observed numerous friends and work colleagues participating in Lent and I really think it’s a wonderful thing. It’s about sacrifice and trusting in God to help you omit this item from your life.
I hate to say it, and I realize it may make me sound like a goody-goody, but every year on Ash Wednesday I would try to think of something I could give up, but I usually came to the same conclusion…there really isn’t anything that would be a big sacrifice for me to give up for 40 days. I don’t say that to sound like I’m so holy and better than those who participate in Lent. I say it because I guess I’m just not “addicted” (for lack of a better word) to anything. I love my morning tea, but I am confident that I could give it up without a problem (in fact, I usually only drink it when it’s cold outside. In the summer I stick to cold beverages. And there are several mornings where I don’t have time to drink it, so I don’t and I’m able to function completely fine throughout the day). I’m not a big soda drinker and at the most I’ll have 2 sodas a week. I’m not a big alcohol drinker and can easily go months without touching it. I love TV, but I really only watch for a couple of hours before bed, and recently I’ve turned to reading instead of TV. I decided that if I ever was going to participate in Lent it would be to give up something that would really be a sacrifice for me, otherwise it would be pointless and defeat the purpose of being a sacrifice. I will add here that I’m sure my family and close friends (specifically Joe) could easily come up with a list of things for me to give up for Lent…they know all of my faults that I’m in complete denial about).
So this year I’m giving up something. I’ve been thinking about it for weeks and God has really shown me that this is what I need to give up. So here it is…I’m going to stop playing FrontierVille on Facebook. I’m laughing even writing that…I know it’s ridiculous. I’m also going to give up FarmVille, but I only play that game once a week, so it won’t be a big deal. If you don’t play either of those games on Facebook, just know that they are totally addicting!
I started playing FrontierVille the day it came out. While I was working I obviously didn’t play at work, so I would only play at night after Ella was in bed. Now that I’m home I still limit my playing time, but I do play 2-3 times a day, and each time I play I think to myself, “There are so many other, more productive things, I could be doing with my time.” I am confident that after just a few days it will be like the game never existed (when we go on vacation I never play, so I have easily gone 1-2 weeks without playing). The first few days are going to be hard for me. I’ll check Facebook and see the little icon to the left and think, “I won’t actually play, I’ll just check to see how my Frontier is doing.” But don’t worry, I’ll pull myself together and not even look in on Frontier Katie, Frontier Joe and Frontier Ella.
I’ll be the first to admit that it’s an addicting game! I feel like I have to check every day to see if there are new missions to accomplish, and if I miss playing for a few days I feel like I am so far behind my other FrontierVille neighbors that I have to play twice as much to catch up. I’m sure others don’t feel that way and think I’m ridiculous, but that’s how it is for me. I love games and I feel like I can’t stop playing a game until I’ve completely mastered it. The problem with FrontierVille is that you never really “master” it. The game just keeps going and going and there’s never really an end.
And I know someone is going to mention it, so I’ll go ahead and say it before they do. Yes, I considered giving up Facebook altogether, but in evaluating the situation my primary reason for even going to Facebook is to play these stupid games, so by eliminating them I am confident that I’ll reduce a significant amount of time spent on Facebook. Lets face it…most status updates really aren’t that exciting (no offense…and if any of my FB friends have noticed, that is the reason I have significantly reduced how many status updates I post).
So there you have it. I need your help to keep me accountable, especially if you’re one of my FrontierVille buddies. I’ll let you know how it goes.
Friday, March 4, 2011
New gig
So I have a new gig in my life…well, it’s sort of new and it’s not really a gig. Anyway, I’ve started keeping the nursery for the women’s bible study that meets on Thursday mornings at our church. I don’t do it alone, I work with another woman. And we only have kids from walking up to age 2, so we’re not trying to juggle a newborn with a 4 year old and every age in-between.
This is just the kind of part-time job I was looking for. When I left my previous job I told Joe that the thing I was most excited to give up was my blackberry. I will be completely happy if I never own another one…that thing was such a pain in the tushie. I also wanted a job that would still let me be at home with Ella, and since this is just 2 hours a week and those 2 hours are when Ella is in preschool, this was perfect.
So I started doing this about 2 months ago (I don’t exactly remember). I really like it. I like having a job that keeps me consistently busy, but not a stressful kind of busy. I like that when I leave the church my job is over, I don’t bring it home with me. And I was really looking forward to being around the kids. The age I get to work with is so cute! They are walking all over the place and into everything (which is great considering we’re in a kid-friendly zone), and most of them can fully communicate what they want, which makes my job a lot easier. I love how they mispronounce certain words (like pack pack instead of backpack) and how they say things that they’ve obviously heard their mom say. I love that they still want to carry their cups with them everywhere just in case someone else tries to take it. And I love that they die laughing at the littlest things.
When I started this job I didn’t have a lot of expectations. I know that sounds bad, but considering where I am in life that is a good thing. And what I totally didn’t expect was to be impacted by caring for “normal” kids. I can’t help but think about what it would be like to parent a child without special needs. And I wonder how different our parenting would be. I wonder how we’ll change our parenting if we ever have a second child without EB.
I often observe how I respond to the kids vs. the women I’m working with. They’ve never had to handle a child with gentle hands, so they will pick them up in ways that I can’t imagine (not bad, just ways I could NEVER handle Ella, therefore I would never pick up a child that way). Whenever one of the kids falls down I automatically flinch, I can’t help it. 99% of the time they either laugh or stand up without a thought, but it takes all I have within me to not react. The first time I changed a diaper I think it took me twice as long as the other woman I was working with. I was changing it the way I would with Ella…gently. It has been a long time since I’ve changed a “normal” diaper.
All that said, working in the nursery has been a steeper learning curve than I ever imagined. In some ways it makes me long for the things I’ve missed, but in other ways it makes me even more thankful that I get to be Ella’s mom.
Tuesday, March 1, 2011
A New EB Family
This will be the last post about our trip south. There was just too much fun to put in one post. This post will also be strategically vague because I’m not sure what I can post and I don’t want to get anyone in trouble.
There is a little boy with RDEB (the same type of EB Ella has) and he has spent the first year of his life in a foreign hospital. I’m not allowed to say the country, so you’ll have to just know that it’s not here in the US. His story in a nutshell is that he was born with EB and was left at the hospital by his birth parents (I wish I could tell you this is uncommon but unfortunately I know of 2 other EB kids who had the same thing happen). Due to his EB he has been kept in the hospital instead of being transferred to an orphanage, like most kids would have been. In this situation this is a HUGE blessing because at least at the hospital he’s getting some care. If he were in an orphanage he would get little, if any, care for his EB. He’s 1 year old and has spent his entire life laying in a hospital bed. Heartbreaking.
Now to the good stuff, there is a family, the Delgado’s, who desperately wants to adopt him. This couple has been through heartache of their own when they lost their beautiful twin daughters who were conjoined, yet they feel called to bring this precious little boy into their lives. They have started the adoption process and are anxious to have this sweet baby placed with them. As with any adoption, there are complications that could arise that prevent this family from getting this child, so the entire EB community is praying for them.
All that said, this awesome family lives in Texas about an hour from my aunt and uncle. I didn’t even know they lived in Texas, but when Ella and I were heading down south God really laid them on my heart. Something in my gut just told me that they lived nearby and that I needed to contact them. So I randomly sent Vanessa a facebook message asking where they lived. Fast forward to Tuesday afternoon, Vanessa, Jason and their daughter, Kenya (they also have a son but left him with a baby sitter) came to my aunt and uncles house to meet Ella and me. We had a great time talking. I told them a bit about Ella and her birth story. I even pulled out the bandage suitcase (yes, when we travel we have one entire suitcase devoted to Ella’s bandage supplies) and told them about all the stuff we use. They asked questions and soaked all of the information in (sort of like drinking from a fire hose). I was so glad to meet with them and pray continually that they get to bring this precious boy home. He needs a loving family and I know they would be great.
You can learn more about the Delgado family on their blog and you can learn about their adoption process here. Please keep them in prayer as they enter this exciting and uncertain time.
I would also like to ask you all for a very specific prayer request. Ella is doing great with potty training and overall her skin looks really good. Unfortunately since she lost the padding and protection of the diaper, her bottom is really in rough shape. It’s such a difficult area to cover, so I end up just sticking her bandages all over and hope for the best. Please pray for 2 things: 1) that Ella’s bottom will heal quickly and the skin will strengthen and not have so many open wounds (this sounds weird considering EB is all about fragile skin), and 2) that I will have the wisdom to know how best to treat it. My mind is racing to come up with some incredible contraption to keep things in place, so I pray that God will reveal to me the perfect way to heal this spot. He’s done it with other areas and I’m confident He’ll do it again. I’m also going to email around to other EB moms because they are all geniuses when it comes to this kind of thing. All that said, please pray for Ella’s little bottom. Thanks so much.