My Niece Noelle

I've only met her once, but this sweet little girl has an amazing spirit. When I held her, I knew I was holding a very special spirit. She is so beautiful and I like to think that the veil is very thin for her.  I like to think that her and Carson are really close and that she can communicate with him. 

I can never understand how difficult it must be to have a child with special needs but Noelle's parents handle it without complaints.  It is amazing how they handle the challenges of raising Noelle and her sisters all with a smile. With permission, I am sharing a little biography of Noelle. 

Noelle was born on June 3^rd, 2014 weighing only 3lbs 2oz, she  came into this world faced with many challenges. While still in the womb she was diagnosed with Wolf-Hirschhorn Syndrome a rare genetic abnormality. As soon as she was delivered two doctors and three nurses surrounded her and quickly began CPR to help stabilize her vitals before she was rushed to the NICU where she would remain for the next 21 days. During her time in the NICU it was decided that she would need a G-Tube to help with her feeding and growth. This was placed when she was about a week old, because she was slowing losing weight. In addition to her surgery she had many evaluations from a variety of different specialists. From these evaluations it was determined that she would be seen on a regular basis by many different specialists. The list includes, GI, Nephrology (Kidney), ophthalmology, cardiology, neurology, genetics, pulmonology, and, audiology. This does not include the various therapists that she sees on a weekly basis to encourage her developmental and muscular growth.

 

Noelle has two older sisters that adore her and love to help take care of her in any way. They especially love snuggling, holding, and playing with her. Noelle is a very special girl and rarely ever cries or is fussy. As one can imagine life with a special needs child is very difficult at times and is much more complex given that Noelle has two older sisters. (5 and 3)  Her older sisters try as best they can to be well behaved and supportive of the busy schedule that Noelle has, but sometimes hurt feelings and disappointment due to unexpected testing/appointments, bring out the tears and the frustration. Overall the girls have been adjusting well and are thrilled to help out with their little sister.

 

During a visit to Noelle’s audiologist to review her hearing screening. (doing the screening was a nightmare because Noelle is so small that a lot of testing equipment has to be placed very precisely or else the test does not work…3^rd time was the charm, they don't know if the test fails until after it is run, so it ended up being 3 different trips to the hospital) It was revealed from the testing that Noelle had some fluid on her ears and had ~40% hearing loss in her left ear and ~60% hearing loss in her right ear. The audiologist recommended that we get a device to aid Noelle in hearing to help encourage her communication development and hearing. The device that would work best was ~$4,000 and insurance did not cover this type of medical device. We either had to pay out of pocket or go without. Luckily Noelle’s audiologist recommended that we apply for help at the HearAid foundation, if approved we would have the possibility to either get a discounted or free device from the foundation. After submitting our application and waiting we finally heard back that she had been approved to receive a “loaner” unit to see if it improved her hearing and interaction with her surroundings. After Noelle had been wearing her Baha hearing device for a week we noticed something very miraculous. Every morning after she got up she would start “talking” (she was very unsettled and unhappy)… She wasn’t hungry or tired or wanting to be picked up, but she was trying to communicate something. For the first few days mom and dad couldn’t figure it out. We tried everything…changed her diaper, rocked her, let her play with some toys, tried to feed her more, but nothing seemed to help and she would eventually stop. As it turned out mom and dad finally figured out that she was asking to have her “ears” put on. She was talking to us asking to get her “ears” put on so she could hear what was going on.

 

With Noelle being able to hear it has really changed her alertness and ability to communicate, she has compromised sight so you can imagine without her hearing and sight she is really only left with smell, taste and touch to figure out the world around her. Being able to hear has allowed her to smile at the sound of a familiar voice, listen to music, and be more aware of things taking place around her.  We have found a wonderful group of people that we will forever cherish their kindness and charitable acts. 

I gave my beautiful niece and her family a Carson Lion. For courage to get through each day. I hope when those bad days come, you can look at that little Lion and remember that putting one foot in front of the other takes so much courage. Courage to face the present, the future. Courage to do and accomplish hard things. Remember, we are here cheering you on every step of the way. We love you Noelle!

I call her "Mother Teresa" but most other people call her Stacie Smith

Stacie is my friend here in Houston. I think Heavenly Father was looking out for me when he sent Stacie here to Houston. This woman is amazing! She is always watching other people's kids (including mine) and has a heart of gold. She has had to have a lot of courage lately as her husband was laid off in January. I don't know exactly how she feels, but I can imagine how hard it must be to worry about work and wish and wonder about what will happen to you. She never complains though. She is always so strong and cheerful and never makes it look like she worries. I hope her Carson lion will help her on the days it feels too hard and overwhelming. And I am glad she stays my friend. She is the most fun in my life! By the way, I don't know why I keep inserting myself into the pictures!! Ha ha. From now on, if I give a lion away, I only want a picture of them not of me! ha ha.

There are some amazing people out there...

I would be very remiss if I did not recognize the amazing people who reached out to me shortly after Carson's death. There were so, so many. The part that was so amazing to me, was how many strangers reached out to me. I wanted to recognize a few.
Go visit on facebook (www.facebook.com/jewelrybyjillybean) and on instagram @jillybeanjewelry check out the beautiful jewelry. I received a memorial necklace from this complete stranger and it is one of my favorites. I love the charms on it and I wear it all the time.
My picture is terrible, but it has Carson's name on

it and his birthday. It also says, "Free as the wind". It is so beautiful and I cried when I received it. I just want to thank this complete stranger for using her talents to bless my life.
For Christmas this year I bought Joel and Carson matching ties. I thought it would be so adorable for them to show up at church with the same tie. I got them at Littlest Prince Couture (www.littleprince.com). I cannot write with words how horrible it was to buy that tie at Christmas and the day we gave it to him, he passed away. I still have a hard time thinking that I will never have a picture of my boys in that matching tie. But, we decided to bury him in it. It was awful to have to dress the body of your dead baby. The only comfort was knowing that Joel had a tie that matched the one he was wearing in his casket. It was like we were still connected. I love it when Joel wears that tie. It just makes me feel like a little piece of him is still here with us. I wrote the owner of Littlest Prince and told her how amazing it was that she made pieces of clothing that could connect families. She wrote a beautiful e-mail back. She also sent an extra tie (which I put in my shadow box) and gave Joel like 5 extra ties in case his got damaged or stained or something. I have this shadow box hanging in my room and get to see it every morning to remind me who I am living for and that he is watching. I always want him to be proud of his mommy. I was overwhelmed by this woman's kindness as she was a complete stranger. There really are good people out there. I am grateful for all of you who have reached out to me. I know you don't know what to say, and to be honest, I don't really know what to say either. But I am grateful for those of you who ask about Carson, about Carson's Lions and listen to me talk. I know I'm crazy, but I appreciate you helping me deal with the crazy. :-)

 Sure love this little guy.

Carrie Colton

Carrie is my sister! She is number three in our big family of eight. We are very different; and occasionally have made the joke, "How did we come from the same gene pool?" Carrie is currently going to graduate school at Florida State University to become a director. She is crazy talented and really good at what she does. We may not have the same taste in art (hee hee) but we do both love it. Carrie has to be so brave everyday to go to work and school and be different from everyone else. I know how hard it is to be different and to believe in things that are different. Its really hard not to "fit in" (see my post below). But hopefully, with a little bit of Carson's courage, Carrie can still be true to herself! She directed a religious piece last semester and she's also the only girl in her program. She was amazing the day we found Carson and bravely did CPR because I could not even think. Carrie also gave out Carson's lions to her entire cast this last semester. :-) So hopefully one day I'll have a picture of that. Good luck Carrie! Pass on the courage! Love you!

The Goodman Girls

Meet Ashley and Faye Goodman. They were some of the young women I worked with when I lived in Mesa, AZ. I work with the girls at my church age 12-18 years old. These two young ladies have seriously grown up since the last time I saw them! They were my neighbors too! (right next door) I used to come in and hang out at their house all the time! They just have a special  little place in my heart because they are such awesome teenagers. Can I just tell you how hard it is to be a teenager nowadays?

I also would just like to mention that being in high school seems so important when you are in high school and once you get out you think, "Man, am I glad I don't have to go through that again." I know everyone has different experiences growing up, but I think it is difficult for everyone. You have to be patient with yourself and learn so much, not just from an academic perspective, but from a spirtiual and emotional perspective. You also have to have courage. Courage to be who you are. Courage to stand alone. Courage to be different from everyone. Because, you are different from everyone.
In the end, I sent Faye and Ashley a Carson Lion for courage to grow up and be amazing! It takes courage to be different as a teenager and both of them are so wonderful at it. I hope they remember that I have "great expectations" for them and I know they will rise to the occasion. Sure love you girls. Don't forget to pass on your lions! :-)

A big pill to swallow

I sure miss that little guy today. I know I will always miss him and that this entire ordeal cannot be "fixed". It is such a big pill to swallow. Oh how I wish it could be "fixed"! I wish someone could say something that would make it all go away.  But I know that going down that "why me?" path is never healthy. It just leads to anger. But there are so many people who have had babies who have had lots of colds and they have never stopped breathing.
I think what I am trying to say is that life is rough. Life is really, really hard and painful. I try not to think about that Christmas Day, but I do. I think about how helpless I felt and how it was the worst.day.EVER. And oh, how hard it was to hold his tiny lifeless body and remember that just 90 minutes before he had been alive and smiling at me. To relive watching everyone try and revive him, and then to hold him in the hospital when I knew he wasn't there anymore...To have to dress his little body, pick out baby caskets and baby burial plots... It was a nightmare I wish on no one. And the hardest part of grieving is feeling alone. It is a very lonely path I walk. How I wish that words would comfort me. Everyone grieves differently and everyone deals with it in a different way. But at my loneliest point I always think of that song:
"He knows your heart
He knows your pain
He knows the strength it took just too simply breathe today
He sees the tears that you cry
He knows your soul is aching to know why
He hears your prayers each humble word
When you said you couldn't face another day he understood
He knows the path that you will find
Though you felt alone he's never left your side
He knew there'd be moments when no earthly words
Could take away your sorrow
And no human eyes could see what you're going through
When you've taken your last step and done all that you can do
He will lift your heavy load and carry you."
I know many people have reached out to me and said such beautiful, kind words, sent books, articles, jewelry, statues, I have felt so loved. The problem is, that it can't be fixed. Not in this life anyways. And that is sometimes a very large pill to swallow.

Carson's life

Just wanted anyone who hasn't gotten a chance to see this, to see a little video of my sweet little boy. I tried to figure out how to put it on the side permanently, but am only a beginner. I can't watch this video without bawling my eyes out. Sure miss this little guy tonight.
Dear Carson: I hope you are happy little guy and having a good day. I think about you all the time and miss holding you so much.  Love, Mommy