Ethan...grrr.

Ethan has been an absolute pill for the past couple of weeks. He has gone backwards developmentally- it is quite frustrating. Even school is on the one-way ticket to Wits End with me. I have been given some ideas as to what could be going on with him. Lots of things lead to his ear tubes. One idea is that he has had fluid in his ears for so long that now that they are draining out, the overload of hearing sense has thrown him back into "comfort zone" which equals not walking and hands in the mouth. We are having such a time with him and it very well could be a toddler-like behavior, but the timing is quite coincidental. I have calls into doctors and he sees the behavioral pediatrician on the 19th for feeding clinic. We'll see...pray for us.

My First Open House

Last night, I held my first Open House for Uppercase Living. Five of my friends came and we enjoyed each other's company while looking over the beautiful expressions that UL offers. I am especially excited to see the custom expression that we made for Olivia. Thanks ladies for coming and supporting me!!! *muah*

A couple of friends were with me until almost midnight because of a horrible storm that was ripping through our area and then camped out around their homes. This was tornado-type weather and there was even one spotted not that far away from here. So, we just chatted away with lightning as our background.

CONGRATULATIONS RENEE!!!

I would like to congratulate our friend, Renee Garcia over at Life With My Special K's for winning the Military Mother of the Year Award!!! Renee is a mother of four children, wife to Frank, advocate for Down syndrome...just to name a few. Frank is currently in Afghanistan serving our country in the Army. This is Frank's second tour over to the Middle East. Renee and Frank's third child, Kennedy, has Down syndrome and also went through the nasty "L" word.

You can read about Renee's win here. CONGRATULATIONS RENEE!!! YOU DESERVE IT!!!

Reece's Rainbow

My friend Meredith over at Cornish Adoption Journey adopted two beauties from Ukraine over 8 weeks ago. The adoptions were made possible because of Reece's Rainbow- a Down syndrome adoption ministry.

(copied from Meredith)
"There are children all over the world in need of a family, love, and basic care. Many of these children have disabilities and are placed in mental institutions at the age of 4 or 5. In these places the children rarely live past the age of 10 and most die within the first year. Will you help to spread the word to raise funds and families for orphans with disabilities? Please visit Reece's Rainbow and see how your donation- however large or small- can help a child find a family. Look a little harder and you just might find the calling for one of them to be your own.

If finances aren't a way you can help, please look across their photos and say a prayer that each one will find their forever family soon. Reece's Rainbow is an International Down Syndrome Orphan Ministry which also advocates for orphans with other disabilities across the globe. Please "grab this button" and post it with a message to your own readers as well. It starts with ONE, but then grows exponentially. You never know, your own post may be one that finds a family for one of these precious children."

Grab This Button
Yes, those two beauties are Emma & Micah. Before and After so to speak. I recommend visiting Meredith's page to see the amazing things God has done for their entire family.

Feeling Nostalgic

I don't know why, but I have dug out a few baby pics of Ethan. As I took him to the doctor yesterday for what the doctor feels confidently is "just a virus" (grrr...), I looked at Ethan and just reflected on what a big boy he has become! Now, he has lost more weight- down to 34 pounds now. Part of that is because his appetite was junk the past few days, but as of breakfast this morning, it's picking back up thanks to strawberries & cream oatmeal and blueberry milk - yes, blueberry milk. I found it at the grocery store yesterday and just thought that it would be something that Boog's would enjoy. Momma was right ;-).

Anywho, I thought that I would share a couple pics of when Ethan was little. This was, of course, before digital cameras so the quality is not that great.



My favorite is the one of him laying down in his crib looking up at his mobile. I thought it looked like he was praying. So sweet...

A couple of reviews

This is a totally random post that has nothing to do with my family. Due to my manfeet always being barefoot or wearing flip-flops, I have cracks that even make me cringe to see. So, as I was in Walgreens last night, I see the Ped Egg at the checkout. I asked the clerk if she knew of anyone that used it and she said that she had it and LOVES it. Ok, so if you have seen the commercial, you know that you basically grate your feet and the "shavings" (bleck) go into the egg compartment. That thought alone made me want to vomit, but since it is only April and I have the next 6 months (at least) of barefootedness, I figured that I should at least give it a try. Ok- it's awesome. Yes, the shavings are nasty to think about, but really just look like powder (ew, ew, ew, ew, ew...). I recommend it.



My second review is of the movie, "Forgetting Sarah Marshall". Scott came home from work early today and we decided to take advantage of the chance to go to the movies. We were originally going to go see "Baby Mama" because Scott has a serious crush on Tina Fey- seriously, she's on his list. LOL! Turns out that movie started too late for us to see and return to get Ethan in time, so we got in just in time for FSM.

I was prepared for some completely inappropriate humor. I knew that main character goes full monty in the beginning of the movie. I saw 40 year old virgin and didn't think it was incredibly funny, so I just looked forward to the time Scott and I were spending together. Turns out, the movie was really funny! The English actor in the movie was hilarious, Mila Kunis is stunningly beautiful, the scenery is awesome, Paul Rudd- well, I love him. It was not money wasted for us- we had a fun time. The only uncomfortable part would be sharing the theatre with a much older couple...seriously 30+ years older.

Now, it will likely be another 6+ months before Scott and I can go to the movies again unless he figures out a way to go so he can see his Baby Mama crush, Tina Fey.

Special Olympics

Yesterday, Ethan participated in his first Special Olympics. It was nothing like I expected- more like a field day really. It was all fun and good times, except I had Ethan stand/walk the entire time. The grounds were wet and he didn't really want to be held, so he had to stand. He loved the track, so next year we may sign him up for relay! The montage is of the day, so it includes his classmates.


2008 Spring Special Olympics

Uppercase Living

First of all, thank you to those that cheered me up from my funk yesterday. I felt much better today. THANK YOU!!!

Now, my big announcement: I am now a demonstrator for Uppercase Living!

Never heard of it? I hadn't either. When I was back home in California, my sister, Kim had these beautiful expressions on her walls. They added so much character to her home! She showed me the catalog and I was in love! When I returned back to North Carolina, I contacted another demonstrator. I found out that there are hardly any representatives in my area, so I would essentially be coming into the company when it is new and fresh. Sounds good to me!

Yes, this is a direct sales company. But, the difference about Uppercase Living for me is that I think that it is a fabulous company that can bring happiness to many homes! Anything that you order is by your own preference, so I don't need to have stock on hand or try to pressure people into buying things. What you buy is truly what will bring more to your home! My out of pocket expense is minimal and I am hoping to make that back within a month.

I really needed something that I could do from home and still have the flexibility for Ethan. That was my challenge. Nobody would watch him afterschool and nobody would hire me now with my limitations for him. Financially, it really put us in a bind. So, I am beyond happy that I will be able to contribute back to my family! Another great thing is that Scott and I can work together on different projects.

I truly believe that God put this opportunity in my lap. I have not worked since January and we continue to be provided for. It is truly amazing!

If you would like to see Uppercase Living a little closer up, log on to Uppercase Living, go to the Customer Corner. You will need to register, but it's free and super easy!

Demonstrator ID: 436564
Token: Faulkner

I look forward to hearing from everyone! Tell me what you think and better yet- let me know if you would like to host your own Open House! ;-)

Bad days

I don't feel myself. I am trying. I'm tired. My hands are acting up. I am going to a at-home party in a bit. Maybe putting on some makeup will actually help me feel better.

Welcome to the tube club!

I had to have Ethan at the hospital this morning for a scheduled sedated ABR (Auditory Brainstem Response) to check his hearing and a possible adenoidectomy. We did not anticipate a tonsillectomy since his tonsils are really small. The test was being done because we are trying to find an underlying problem for Ethan's lack of speech and language development.

Well, once the doctor was in there, he did not feel that the adenoids needed to be removed- so no A. Tonsils were fine too, so no T. No T & A for Ethan. What he did find was a LOT of fluid in his ears. So, we have now joined the ear tube club! His ENT nor I expected to be getting tubes today! He said that Ethan does not fall into the classic case of what is seen before putting tubes in- he rarely has ear infections. So, tubes it is.

The ABR shows that Ethan's hearing in his left ear is fine, but the test shows that he could have minor hearing loss in the right ear. The ENT feels that the test could have been affected by the fluid buildup and that we should retest the right side in the office on a regular basis. Even if he does have loss in the right ear, since his left ear is perfect, it would compensate the right and should not affect his S & L.

Now that Ethan doesn't have his port, they had to do an IV (thankfully after he was asleep), but removing it was awful. Poor baby screamed so loud! The tape they used was awful and it ripped every little hair off of his arm...my poor lil' monkey.

We're back home now and looking for a nap!

Support Ms. Mary!

Ethan's teacher, Mary Heaton, is on the Team in Training team to raise money for the Leukemia & Lymphoma Society. She joined the team in honor of Ethan and his fight against blood cancer!

Mary has been instrumental in Ethan achieving his academic goals this year and we are so proud of her for taking the initiative to train to run over 13 miles for Ethan.

In the process of Mary's training for the half marathon in Nashville on April 26th, she also decided to train for the full 26 mile marathon in Alaska! Unfortunately, Mary has injured her hamstring and she is unable to even walk either marathon, but that doesn't mean that her heart is not with her team and with ETHAN! She will continue to join her team in Nashville to cheer them on.

Can you please help her cause? Any donation is greatly appreciated!!! Support Ms. Mary HERE

Thank you! Thank you! Thank you! Thank you! Thank you! Thank you!

The Clock is ticking...

Yep, the biological one. Bad timing. Well, it's been ticking for a while but it's really been bad the past few weeks. I want Ethan to have a sibling so bad. I want it for him. I feel that he deserves it. I can't imagine my life without my sisters and brother and I think that Ethan having a sibling would do wonders for him. Have you noticed the I and not we? Of course, me being unemployed now doesn't help things!

I never thought that my children would be so far apart in age. I mean, only having Ethan during the time of our move and his leukemia treatment was a huge blessing. We were able to concentrate solely on him. Scott feels that if we have another baby, we are taking away from Ethan. He deserves all of our love and attention. So, I am torn because that then makes me feel like I want to take away from Ethan. That is not the case!

I watched some friends in church yesterday with their new baby girl. I watched them cuddle and smile at her. I almost cried. I want it again.

Part of this is selfish for me. I miss being pregnant. I want to experience it again. The other part is definitely for Ethan.

The Memory Keeper's Daughter

The Memory Keeper's Daughter aired on Lifetime last night. It is based on the novel by Kim Edwards about a doctor whose wife gives birth to twins, one of them having Down syndrome. Based in 1964, the doctor told the nurse to take the baby to an institution and then proceeded to tell his wife that the baby died. The nurse does as asked, but once she sees the horrific practices towards the children/adults at the institution, she leaves and takes baby Phoebe with her.

I have not finished the book yet and I now look forward to comparing the TV version against the novel. I feel that the movie captured many points that we even continue to battle today. Our children with Down syndrome ARE capable, they ARE beautiful, they ARE smart, they ARE aware! Our children with Down syndrome are not sentenced to a death sentence- they LIVE! Our children with Down syndrome are not mongoloids- they are OUR children.

Overall, I was very pleased with the movie (minus the awful hair style/wig that they had on Phoebe!). I recommend that everyone watch it/read the book.

*Important*

My friend in Tennessee posted a very well-written blog that I think is important for all to read. She has a wonderful way with words and maybe she can help you understand why language is so important to us. Renee's Blog- Life With My Special K's 03/29/2008 "Why It Hurts"

Slideshow from Trip

So, I tried to post a few pictures directly and it was trying my patience, so here is a slideshow. Enjoy.

WE ARE HOME!

Ethan and I returned back to North Carolina after an almost two-week stay in California with my parents. We were greeted at the airport by Karen, one of my best friends and Olivia's Mother for anyone who has been reading earlier posts. I have never been greeted with such enthusiasm and excitement before! She ran to me and Ethan like there was no tomorrow and then we just held each other and cried. We both really missed each other!!!

Amazingly, our luggage made the flight with us. Our red-eye flight out of Oakland left over an hour late which left me about 20 minutes to get from Terminal C in Houston to Terminal B. You guys didn't know that I could run that fast, did ya?!?! LOL! I literally arrived at the gate as the airline attendant was saying "If you have a ticket for Raleigh/Durham, you should be ON THE PLANE NOW". So, for our luggage to make it too was miraculous.

Neither Ethan nor I slept hardly at all for over 24 hours. Ethan cried and fussed a bit, but because he wanted me to hold him before take-off and we couldn't do that until we were mid-air. Overall, he was a good traveler on the way home.

After we left the airport, we met up with Karen's cousin, Shannon, at the Cheesecake Factory (yum, yum, and more yum, yum's). It was a great tour of the mall parking lot until we found it. Fun times...

Scott was home when we arrived home. Ethan was SO excited to see our house. It was the funniest thing! He saw the house and just got the biggest smile on his face! I wish that I had the camera out for that one. We basically got our stuff inside and collapsed. Well, I did anyway. Scott and Ethan had playing to do. I will post those pics a little later after they are uploaded to the computer.

The trip was good. I didn't feel good a good majority of the time due to my allergies and some things happened that totally crushed me emotionally, but I was home, got to see my family, party with my sister, Kamrin, for her birthday and go back to Yosemite with Ethan. The weather was beautiful, never even needed to bust out my jacket or big sweaters.

We were able to see some friends along with some of Scott's family. We missed lots of people which is sad, but also got to see people that we didn't think we would or could, so that was an added bonus.

I am so happy to be home. I LOVE MY BED. I was able to sleep in today, which was beyond lovely. Of course, Ethan was in his room, taking his toys and chucking them over his gate onto the hardwood floors. Thanks Son.

Pictures to follow soon...I hope. :-)

8 more days

And Ethan and I will be on our way to California. We have a stop in Houston, so we will also get to see Kimberly, Steve, and Joel. I have never looked forward to a layover so much in my life! :-) We will get to spend almost 3 hours with them- YAY!

We will then be in California for about two weeks. We haven't been back in close to two years, so it will be interesting to see how things have changed. I plan on going to Yosemite so Ethan can be there. My mom says that there is plenty of snow, so Ethan will get to play in the fun white stuff. I hate packing for cold weather though- we usually travel during the summer so we don't have to deal with bulky stuff.

Scott doesn't get to come and we are really bummed about that. But, maybe it will be a good respite for him too.

Ethan and I will get to meet Christopher, my brother Kolt's baby, for the first time. Ethan will have a playmate for the weekend! I am hoping to be able to spend some quality time with my nephews and niece too. Two weeks is going to go by way too fast.

Olivia has been gone for two weeks and two days now. I definitely have my bad days. This will never be ok.

We went to Atlanta over the weekend for a Downsyn meetup. It was much smaller than last year's, but we had a good time. Some friends let us stay with them which was much more relaxed and good for Ethan. He was able to play with Natalie who is almost two.

I have been going crazy getting Ethan consults with different doctors. I am going to have him see a neurologist about tethered cord/spina bifida occulta. Let's just say, a hairy back on a 6 year old is not common...

The next doctor would be the cardiologist. I would feel a LOT better if I know that the holes in his heart are CLOSED. He has not had an echo since he was around 2 weeks old. All the doctors are confident that his heart is fine, but for my peace of mind (since our luck is not so great lately), I would just like to get it cleared up for sure.

Scott's sister, Cindy, may be coming to visit us next month! We are so excited about that too! Lots of stuff going on. Trying to keep my head on straight...

The Princess Party That Never Should Have Been

Yesterday, we laid our dear Princess Olivia to rest. So many people came yesterday and the night before to be with Olivia one last time. People came from other states to see her. She was such an amazing spirit that touched so many people all around the globe. The flowers that were sent were amazing.

After Olivia's beautiful service, we released pink Princess balloons in her honor.

Photo and video editing at www.OneTrueMedia.com

I miss her terribly. My heart is aching. As I try to encourage Karen to rest, I find myself not being able to do it either. After laying down last night around 2am, I found myself awake at 2:30 from a nightmare. I was hoping to dream of Olivia dancing and singing along the streets of gold. Maybe today's nap will bring that dream to me.

One of our darkest days...

February 13, 2004. Ethan is diagnosed with leukemia. It is a date forever etched in my brain. Today, he is a growing, healthy little boy. He amazes us everyday- even with the newly emerging terrible two behavior!

I am still numb about the loss of our sweet Olivia. As I make a couple of phone calls for Karen to inform of Olivia's passing, it still seems so unreal. The last dr. I spoke to said, "OH, I hate to hear that"...I said, "I hate to say it". Karen and I have gone to the funeral home the past couple of days to see Olivia. This may seem creepy to some, but it is done out of pure love. Last night, we even dressed her in her beautiful gown. Her hair is curled and she has her special bow in. She is wearing her new ring and bracelet. We still have to take her necklace and a couple of her belongings that will stay with her forever. Karen and I must seem so odd to the funeral home director...we were fixing makeup (originally, she was a little too orange), putting on lip gloss, and picking fuzzies out of her hair. These are things that we did when she was alive and it just seems right to be the ones to do it until the end.

Karen was able to pick Olivia up and hold her before laying her into her casket. It was a beautiful moment and I am so honored that I could be there with them during that time. I am so thankful to Karen for allowing me to be such a big part of Olivia's life. I just cannot even begin to put into words how much I love that precious little princess. Not loved, love. Love does not die with the person, nor does it fade.

Thank you to everyone who has sent condolences for Karen and Olivia's family. It is so appreciated.

Our loss, Heaven's gain

Today at 4:58 pm, Olivia earned her wings. Thank you God for answering our prayer for a peaceful passing. Our hearts break for our loss. Olivia was a true Princess. She passed in her favorite place- her Mother's arms. I am reminded of Steel Magnolias when Shelby passes and M'Lynn says how it was truly a beautiful thing, being able to be there when that precious child was brought into the world and also when she left this world. There is no bond as that of a mother and child.

I loved Olivia from the first time I met her. There has always been something about her. She was what love is. SO many people love her- people who have never met her or Karen. It is just a testament to how someone can speak volumes without ever saying a word. Her smile lit a room. Her love was unconditional.

I knew that God brought me to North Carolina for a reason(s) and I truly believe that one of those reasons was so I could know Olivia and Karen. I have been so incredibly blessed to have been a part of their lives. I always made it a point to come over to the house to visit at least once a week so I could see the Princess. We read stories, sang, and had great talks. Olivia gave the most wonderful kisses- kisses I will forever treasure. I will never forget the time that Olivia raised her arms out to me for a hug or when she would shake her head NO when it came time for me to leave. Of course, she usually didn't mind if I took Ethan home because, bless him, he never did have a good sense of where his feet were flying and would step on her *sorry Livvie*.

When I lost my job last month, I told Karen that she had full coverage (Posse members made a pact for Karen to never be left alone during this time) and she made a comment about how maybe that's how God intended it. As the weeks unfolded, I really began to believe this. I was used in a certain way to be able to help care for Olivia and Karen. I am so grateful for all of the extra time that I had with Olivia and I thank Scott and Ethan for being so wonderful during this time too.

There were times over the past few weeks that I had hoped that we were all in a bad dream and this really wasn't becoming a reality...if only. Olivia defied all odds and definitely did things on HER time. She was surrounded by loved ones until the very end and she will FOREVER BE A PRINCESS!

*Livvie...sweet baby girl. I miss you terribly already. While my heart aches here on earth, I also smile with joy because I know that you are dancing and singing through the streets of gold. You are whole and perfect. No more seizures, no more tubes, no more pain. I will continue to take care of Mommy, just like I promised you. I love you sweet Olivia, forever and always!*

Please continue to pray for Karen and Weldon as life as they know it has just been turned upside-down. Thank you.