Till We Meet Again

Little Gabriel Morales ended his fight against Spinal Muscular Atrophy on Thursday. That debilitating disease will never overpower his small body again.

May his family feel his presence in their lives until they can hold him in their arms again.

Funeral Services:

Tuesday 10:00 am-1:00 pm

New London Presbyterian Church

1986 Newark Rd. (rte. 896)

New London, PA

23, 24, 25, 26, 27, 28

23- Medication. Today was just one of those days. Caleb and I were fighting from the moment we woke up. And then I read this article and I thought, shoot, I'm glad there are women who have medication to help when needed. Unfortunately, I didn't have any {:)} but I'm still glad its there for some.

24- Girls Night Out Tween-ager Style. I went to see Harry Potter 7.1 with two sisters, ages 10 and 12 tonight. So.much.fun. Sigh. They were so much fun. We talked about how silly boys are (10 year old is still of the cootie ideology. 12 year old is not so certain. 'specially regarding a certain boy). We talked about shopping, about jewelry, about every.thing. I love girls. I love that age. I love being reminded of it.

25- There are a million things I could name on Thanksgiving for which I am thankful. But in an effort to be completely sincere and NOT end up crying, I'm going to go with dishwashers. Really. I mean, how horrid was Thanksgiving before dishwashers? I think I ran two loads before dinner even started. So yeah, dishwashers.

26- Parents. My parents were able to spend the Thanksgiving holiday with us. No matter how "old" you are, there's nothing like having your parents around at the holidays.

27- Christmas trees. Dang. I love them. The smell, the lights, the decorations. Yumm, yumm.

28- 9 months ago this morning, I woke up not feeling well. A few hours later, Peter and I were parents of two. I will always be grateful for that.

Vignt et un et vignt-deux

21- Let's be honest. I'm grateful for football. I love it. I stay up after Peter has gone to bed to finish the game. I yell at the TV. I discuss why the refs hate us. And by "us" I mean the Steelers. Because, yes, I am considered part of the team. Thank-you-very-much.

22- Charlotte's blog. I'm really grateful that the NICU encouraged us to set up a place to write down our experience. I'm glad that it has reached others. We've had over 20,000 unique visitors since we started writing in March.

Umm, Catch Up...

12- Service. I've been going to school among all the other crazy things in our lives. An amazing friend of ours has watched Caleb all week so that I could get some hard core study time in. Ideally, we just would have put Caleb in a preschool, so that I could study and he could "learn" but since Charlotte's immune system cannot handle preschool germs, we have to keep Caleb out. So yeah, my friend? She's more than awesome. I'm so touched by the amount of service we have been offered.

13- Pampering. Being in school means there are a lot of things you have to cut back on. But Peter is pretty good to me, and he makes sure that we have room in the budget for me to get a good haircut. Sigh. I admit it-- I like to be pampered. I like it a lot.

14- Family. I know, that's a gimme, right? Peter's older brother was in the area this weekend and was able to come to our church service and have dinner with us this afternoon. Peter's younger brother and his wife were able to stop by as well, and it was really great to see "the boys" have some time together. As we all get older and live farther away from family, I really appreciate these times together, no matter how brief.

15- Optimism. Charlotte had Speech Language Therapy today, and they really worked on trying to get her to take the bottle. We didn't have much luck, which tends to get me discouraged, but her therapist stayed ever positive. I appreciate having medical professionals who keep us going, even when day to day progress is next to nothing.

16- My brain. I saw a commercial today that totally threw me off. Seriously, it was awful. And as I was really bothered by the commercial, I was also really grateful that I have the ability to form my own opinions. I'm not always the best at it, but I'm glad that I was raised to think for myself, to not follow the crowd, and to question authority (with respect, of course). That's pretty deep for a commercial, huh?

17- Preemies. Today is Prematurity Awareness Day. I'm grateful for Charlotte. 'Nough said.

18- Cameras. We took family pictures today. So glad we have the technology to document how much my children hate being documented :) But seriously. I am forever grateful to have pictures. I'm sentimental like that.

19- Organizations. We had a meeting with Team Heather today. These women are so inspiring. They've poured their resources together and are fighting so hard to make Heather's fight a little easier. These women are realistic. They know Heather is in the fight for her life. But they also know that Heather is not fighting it alone. And somehow, that helps.

20- Dates. Pedro and I went.on.a.date. Babysitter and everything. It was surreal. Going somewhere together that does not involve the hospital. It's the little things in life :)

9, 10, 11

Nov 9- Pedro. He had today off. We hung out. It was awesome. I love having a best friend. I love that he humors me. I'm grateful for the fact that he shaves every day even though he hates doing it. I'm grateful that he heats up my rice bag when he knows I'm stressed. I'm grateful that he doesn't take things too seriously. Love him.

Nov 10- Early Intervention. After Charlotte's TWO HOUR appointment (not on my gratitude list, thank-you-very-much) at CHOP this morning, the feeding team was adamant that we get Occupational Therapy for Miss CA. Thinking I was going to have to fight Early Intervention to get an OT (we already have Speech Therapy and Physical Therapy) I called our coordinator ready to demand services. I was prepared. I had done my research. I knew exactly why Charlotte needed an OT in addition to her other services. Joan, our coordinator, simply said, "If you think she needs OT, I'll call and find someone right now." Uhhhh... what was that? Was it really that easy? Yes, I think it was. Awesome.

Nov 11- Veterans. Of course, right? I'm also grateful for all those Moms, Dads, Wives, Husbands, Significant Others, Children, etc who supported those Veterans. I'm grateful for those people who wrote them letters, sent them pictures, and loved them while they were away. I'm grateful for those who were waiting for them when they came home. There's just not much more to say. So thanks. Thanks for serving.

Help!

On Charlotte's blog I posted about our friends, the Suttons, who recently found out that their wife and mother, Heather, has MDS (myleodysplastic syndrome). The healthcare costs for this cancer can become rather overwhelming, as you might expect.

A website has been setup for people to keep up to date with Heather's treatments, to sign up to help with errands, to make donations to ease the financial burden.

On December 10, a Ladies Silver and Gold Party will be held as a fundraiser. A jeweler will be on hand to pay you for your gold jewelery. A silpada representative will be there so you can do some Holiday shopping. All of the profit from the silpada sales will be donated to Take the Journey of Hope with Heather.

Now here's where we need your help.

There will be baskets to raffle off. The proceeds from the raffle will all be donated to the Sutton Family. So far, we have a children's basket, some Phillies tickets, a quilt, etc.

We're looking for ANYONE to donate ANYTHING that could be raffled. Do you sell Mary Kay? Could you raffle a basket? Do you make awesome cookies? Could you bake some? Do you have tickets to a concert?

We can use any and all donations. Just email me or leave a comment and I'll get in touch with you.

Thanks so much!!

3-8

Nov 3- Today, I'm grateful for food. For food grown right straight outta the ground and plopped right on my plate. We participate in a CSA and have thoroughly enjoyed being able to participate in this tradition that my generation sees as an ancient pastime. How weird that we have to go out of our way to find fresh food, grown in our own back yard. How lucky we are that we live in a place where we have access to fresh food, water and resource.

Nov 4- Two words: Speech. Therapy. I don't know how they do it, but they get Charlotte to eat. It's magic, I swear, but I love them for it.

Nov 5- Student loans. Enough said.

Nov 6- Peanut Butter. Whoever thought of this stuff is responsible for keeping Caleb alive. Breakfast? Peanut Butter toast. Lunch? Peanut Butter and Honey sandwich. Dinner? Peanut Butter and Honey sandwich. Snack? You know it. Crunchy. Smooth. You name it, we eat it. And lots of it.

Nov 7- Today, I'm grateful for Honesty. At church today, Peter talked about how angry he was after Charlotte was born. How angry he was that such a situation could occur. So many people spoke to us afterward about how refreshing it is to hear that people struggle, that people go through the stages of grief. Too often we feel like we have to put on a pretty face, to be strong for everyone around us. What we don't realize is that everyone else is just putting on a pretty face for us. It's time to be real.

Nov 8- I'm trying really hard to not be too "deep" with these gratitude posts. I think it's helpful to find everyday, ordinary things for which I am grateful. But today, today I am grateful for family. For my religion. For the strength I feel from the people around me. Gabriel came home from the hospital today, and will most likely pass away within the next few days. He's been such a fighter, such a strong boy. In times like these, when life just doesn't make sense, I'm grateful for the strength I see in others.

Day 3

Today I am grateful for older sisters.

Especially for older sisters who will love you even when you're dumb.

They're the best.

So glad I have one.

Day 2

Rally to Restore Sanity and/or Fear
10/30/2010

Today I am grateful for the ability to vote, to demonstrate, to voice my opinion. But more than that-- I am grateful for the ability to get along with those who do not agree with me.

For those who know my parents, especially my mother, you know that she is of the conservative persuasion. For those who know me, you know that I tend to be a little bit (a lot) more liberal. Despite this difference, I'm the first to say that my mother is absolutely one of the most incredible people I know. She's dedicated to her family, her work and her community. She loves EVERYONE. And when I say everyone, I mean, EVERYONE. Seriously. I can count the number of times she has mentioned that she didn't like someone-- and those times were all in response to a person being unkind to a member of her family. She's loyal. She's intelligent.

See, I could go on and on. Despite our differences in opinion when political topics arise, my mother and father spent the past weekend watching our children so that Peter and I could attend a rally. A rally that was hosted by someone who she would probably disagree with the majority of the time. But I never once heard a criticism. Never.once.

If only more Americans could get along that way.

Today, I'm grateful that my mother taught me to respect people, no matter what. I'm grateful it's a lesson she started when I was young, because it's a hard lesson to learn, one I'm still working on.

But I'm grateful for it nonetheless.

Gratitude: Day 1

30 Days of Gratitude.

So it's a bit trendy, and kinda "roll my eyes at people who do this on their blogs" but this year has been an interesting one, and I feel the need to document the things for which I am grateful. (And I haven't actively blogged on here for the entire year and I need to fix that.) For the next 30 days, I'll post on what I am grateful for, and hopefully, along the way, we can all re-focus and re-energize.

So today, I'm grateful for the people who helped me get through the past year. That would be all of you. I'm grateful for the text messages, the comments on the blog, the emails, the greeting cards, the gas cards, the visits, the support, and most importantly the prayers, that got us through this crazy time. I'm grateful that people didn't forget, that people still remember that we struggle. I'm grateful for those who continue to inspire us, continue to support us and continue to "understand" us. I'm grateful for those who know that they don't understand.

I'm grateful that many of you will never know what it is like to have a child so early.

I'm so grateful for that. I'm grateful for newborns, for children who are healthy, for parents who can go home from the hospital without a second thought. I'm also grateful for babies who come home from the hospital-- now matter how delayed their homecoming might be. Most importantly, I'm grateful for the love and support that wraps its arms around parents who leave the hospital to go home, while their babies go to Heaven.

So as I start this month, I want you to know that the only reason I am able to write these things is because of all of you.

Thanks for being my therapy.