Beautiful Day

I had been waiting for a day like today for awhile to finally bring Makayla outside! It was gorgeous so we took a little trip out to visit Gabe's site. I cleaned it up and added some easter decorations and Makayla ran around the fields. I was so happy to get out of the house! I am hoping we start to have a lot more days like today so we can spend more time enjoying the outdoors.

I OWN CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS

Disclaimer: This is not a happy post. This is a pissed off mom who needs to vent. If you don't want to read it, DON'T! Normally I don't bring any of this crap into my personal blog.... but since tomorrow has been marketed as Congenital Diaphragmatic Hernia Awareness Day, which should be something positive, something good.... but unfortunately it has gone terribly wrong-it pisses me off and I need to vent about it. Sooooo, I am just going to apologize in advance to anyone I may offend or upset. I know there are some amazing, wonderful CDH mommies who are supporting this day and the good it SHOULD represent, and I respect that-I really do. I just hate how tainted it has all become.

Background to those who may not understand:

I have a son who was born with CDH. It was undiagnosed until after he was born, although it probably should have been picked up on one of the many ultrasounds I had. Because it wasn't diagnosed prenatally we were not prepared. We had him at a small county hospital who was not prepared for him. We had no idea what to expect or the severity of this defect. My doctor gave me a bunch of misinformation about CDH and what caused it after he was born. My own DOCTOR, who was in charge of my babys care while I was pregnant, had no idea and very little actual knowledge about this defect that affects 1600 babies in the US EVERY YEAR.... We relied on the little bits of information we were given by doctors and nurses and started to have to make life altering decisions without any real knowledge of what the hell we were doing. We were forced on to a rollercoaster ride where all we could do was hold on and pray.... and in the end it crashed and we had to pull our baby boy off of life support.

2 years ago (shortly after Gabe passed away) I was actively involved in 2 CDH groups. I was depressed and hurt over loosing Gabe and wanted support and wanted to get to know others who had walked a similar path. I did not know any of the previous drama that had gone on before with the CDH community, and I didn't want to know.

One of the hot topics that is constantly discussed within the CDH community is how little is known about CDH....how few people know about it. If more AWARENESS was raised for CDH could benefit everyone affected by CDH, so that maybe someday better treatments and more information would be available to those who need it.

When one of the groups started to plan a CDH Awareness Day, I thought it was a great idea! What a wonderful day to unite our efforts to raise AWARENESS to the public. What an amazing outlet to use to work towards something I was so passionate about.... but I had no idea!

I had no idea how screwed up this day would become. I had no idea how counterproductive their campaign would turn out to be. So here is the irony of this Congenital Diaphragmatic Hernia AWARENESS Day.... It is an AWARENESS day (which by definition should mean that the entire purpose is to spread AWARENESS to all) that is open by invite only. No other groups or organizations may participate unless they report to and have permission from the president of Breath of Hope Inc. But the best part (said with tons of sarcasm) is that this AWARENESS day campaign is being used to TRADEMARK Congenital Diaphragmatic Hernia AWARENESS!!!!! Not just the day itself, but the phrase Congenital Diaphragmatic Hernia AWARENESS! This means that no other group, organization, or person may use this phrase without asking for permission. WTF???!!!!! How the hell does that further the goal of spreading CDH AWARENESS, if it is trademarked so that others may not use it?! I think the president of Breath of Hope has made it clear what her true motives are by doing this.... not to help CDH families but to hurt other groups that she does not personally get along with. This is sad. This is all very very pathetic, and sad.

I've got one more thing I would like to say before I end this pissed off post.....

I OWN CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS! MY SON WHO DIED DUE TO THIS HORRIBLE DEFECT OWNS CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS! MY DAUGHTER WHO WILL NEVER PLAY WITH HER BROTHER OWNS CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS! MY HUSBAND WHO WILL NEVER WATCH A PATRIOTS GAME OR THROW A FOOTBALL TO HIS SON, OWNS CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS! TO ALL THE PEOPLE WHO HAVE FOUGHT AGAINST THIS HORRIBLE DEFECT, WHOSE CHILDREN/GRANDCHILDREN/FRIENDS CHILDREN WHO HAVE DIED FROM CDH OR STILL FIGHT TO OVERCOME CDH..... WE ALL OWN CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS. WE MAY NOT HAVE PAID TO TRADEMARK IT BUT WE PAID FOR IT IN BLOOD AND TEARS!

Pink and Purple Cake

I made this cake for my business class last week. I wanted to have some fun with it and experiment with different techniques. The roses are a different style than I have made before. They are "Duff's Roses" (from Ace of Cakes) since he is the one who came up with the method. They aren't as realistic looking as making them the traditional way, but they are really fast to produce and I think they are pretty cute!

I took the main idea for this cake off one I saw online at cake central. It was very time consuming since I had to roll out each line individually, and was difficult to get consistent results. If I ever make another cake like this again, I think I need to invest in getting a clay gun! I probably could have done this cake in 1/4 of the time and had it come out a lot nicer! I was a little disappointed with it, as I ran out of time and wasn't able to put the finishing touches on it, but oh well, the class loved it :)



More experiment cakes coming soon!!!!

Dancing Monkeys

Makayla received a new toy today. It was a little bear that danced, and she immediately fell in love with it! She LOVES to dance. Here are a couple little clips of her and her new bear :)

Makayla's walking!

I figured it was a good time for another Makayla update :)

We had her 12 month check up yesterday (a couple weeks late) and it went very well. She weighed in at 22 lbs and 30 inches long, right around the 50-60th percentile in both. She gained 2 lbs and 1 inch since her 9 month check. They gave her shots (which always breaks my heart) and drew blood to do a few screenings which I'm waiting on the results for. They also decided to do a eye screening since Nate wears glasses and I had a lazy eye as a kid. it was difficult to keep her focused but after multiple attempts they were able to get her to do what they wanted and she passed :) All around a good appointment!

Last week Makayla started walking! She has been cruising around the furniture for awhile now, and would take 1 or 2 steps to get from one thing to another, but nothing more than that. March 5th (Nate and I's dating anniversary ;) ) I gave her her sippy cup while she was standing and she walked it over to the couch! I was so excited and she was so proud of herself. Every day she seems to gets braver. Today she was doing really good going from one end of the room to the other and back. Of course Nate and I made a big deal every time she did so she thought it was great!

Here's a little short video clip of her walking:

A small gesture...

I don't talk about Gabe as much as I used to... time goes on, and as much as I hate it-life goes on. I've accepted that, and try to go with the flow of things. Keep up with life, try not to get stuck left behind. When you lose a child you really only have two options, and somehow I found the strength to keep going. I don't even think it was strength really, more like numbness that allowed me to keep functioning until I could start to live again. Anyway, as time has gone on, I have found that I don't mention him as much as I used to. It's not that I don't think of him every minute of everyday, and I still do a lot of charity work in his memory... but I guess I just keep more of him to myself. I'm not as open to telling strangers about him when they ask how many children I have... I just don't have the energy always to deal with the awkwardness that comes after.
The other day I saw someone I knew through work who I haven't seen in almost a year. We weren't ever close, but we would occasionally have some small talk in passing. In quickly catching up with her, she asked me how Ayla was doing and if I had pictures. I took out the wallets that I carry with me and started to show them to her. As I was flipping through them, one of Gabe was in there. She knew I had a son that passed away, but not much else. When I got to Gabe's picture, I quickly flipped it to the back of the pile knowing how uncomfortable it makes a lot of people and didn't want to make her feel awkward. She reached over to the pictures and pulled it back out to look at it and started asking questions and commenting on how much Ayla looked like him, how cute he was, etc... It made me feel so good to have someone I barely knew confidently and happily acknowledge Gabe as a part of my family. I doubt she even has any idea how much that small gesture meant to me.

Updates

Wow, it's been awhile since I've posted! Life has been hectic as usual...

After Ayla's birthday I left for a mini vacation/CHERUBS get together in Indiana. I brought Ayla with me, and had a great time! I met up with 4 other CDH families and shared a lot of laughs, tears, and good times all around! I really wish we could do it more often.

Unfortunately after getting back home, Ayla got sick, passed it to me and I passed it to Nate who is still not feeling well. The last two weeks have been horrible! I can't wait for Spring to finally arrive! I just hope this is the last round of sickness in my house this winter.

Bakery update: Well...things didn't go the way I had hoped :( The bakery owner ended up having someone ready to sign the lease now, and I wasn't. Pretty much sums it up. It sucks, but I'm not giving up on opening a business soon. The whole experience has opened up some other doors, and given me a much better idea of what my next steps need to be. I will update more on this in the next week or so. The next month or so is going to be filled with meetings, appointments, classes, and a lot of work... but I will be ready next time a space opens up! I know it's going to work out, and finally feel like my dream is within reach. I've never thought I would feel so positive about loosing out on the bakery space, but I'm taking it as a learning experience and feeling pretty good about what I learned :)

That about sums it up for now. I've got a lot going on right now, but will try to update a little more often :)

Here are a couple of pics:

Indiana Get Together:
Ayla's birthday shoot: