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.