Too Funny...

Okay, click this and watch it full screen to get his expression. This is too funny... And, he is speaking to teenagers... which makes it even funnier! ENJOY!!!

Watch This...

Thanks Nancy... this is great!

Good News...

This is going to be a short blog about the day: I am exhausted...

Good news today. My melanoma was caught early, so no need for a lymph node biopsy. If any more come back melanoma and are deeper, then they will do a lymph node biopsy. Loved, loved, loved the first doc (plastic surgeon); not so much the second doc. So, going with the first doc: He wants to remove 5 moles that look most suspicious, and then if any come back atypical he will do a wide excision on the bad ones. Then, he will remove another 5 until an entire batch of 5 come back normal.

I will call the plastic surgeon tomorrow to set up my appointment to have the one lesion removed by a wide excision and then the 5 moles that look suspicious will be biopsied.

AND- We had an offer on our house today and we countered it tonight. YEAHHHHHHHHHHHHHHHHHHHHH!!!!! A total God thing that I will go into tomorrow! Why do I ever doubt that God is not in control??? Clearly when you read the story you will know that He was in control all along... Not that you needed to know that or anything... :-)

Goodnight... I am exhausted... I slept awful last night!

Tomorrow...

Tomorrow is a big day: 12:30 Ryan and I go to the surgical oncologist and then at 2pm we go to the plastic surgeon. I have good hours and then I have down time and wayyyyyyyyyyyyyy too much time to think about things. Like: What if I had not found the mole. The pic above is similar to the mole removed a couple weeks ago and is probably melanoma too. This mole could easily fit under a standard pencil eraser. The other mole had 3 little dark moles right by it like a cluster of grapes. Nothing was raised, hurt, itched, or was red. They are not alarming in the slightest.

Something just told me that they did not look right. Maybe it is because my sister has worked with plastic surgeons for almost 10 years, maybe it is because my dad is a doctor??? How many people without this added knowledge are walking around with cancerous moles on them??? What if????????? What if it is worse than what we think???

I know I shouldn't go there... but I have been there a few times since Thursday. I am not ready to be done on this earth... I want to live past 100... I feel like every mole on me right now could be cancerous.... I just want them all off. Too bad I have thousands of freckles and probably well over 100 moles. Hardly any of them are raised. The one that was melanoma was completely flush with my skin. Not the ugly mole that you are thinking of...

So, those are my thoughts... Probably most of them are illogical, I know that. Hopefully I sleep tonight...

Thanks for your prayers!

Rebekah

MELANOMA...

PLEASE PRAY: I got the results back from pathology on a mole removed from my lower leg on April 5th. Dr. Acker called today and it is melanoma. They sent the tissue sample up to the University of Michigan for a second opinion, and it was confirmed. I go to see the surgical oncologist on Monday... I do not have time for this...

Please pray that everything comes back clear and I that I will not need surgery...

Please Don't Stare...

Please Don't Stare...

She cannot see you staring, but I can...
Have you never been taught that staring is rude???
No you were not; your mom is staring too...
When you stand and stare...
It makes me feel as if there is something wrong with her...
She is my flesh and blood...
She is a little girl, just like your little girl...
She is blind, not deaf...
When you want to know something, ask her...
She has no shame in being blind, nor should she...
When you are talking about her, she can hear you...
Her hearing is acute...
When you say comments like...
"Oh, isn't she cute, they even cut her hair in a wedge..."
I WANT TO HIT YOU!!!
Why wouldn't we???
She is a little girl...
Please treat her with the respect that she deserves...
Someday when she is making well over six figures...
You might be saying,
"I wish I would have gotten to know her...
Instead of just staring at her..."
She has feelings...
She has likes and dislikes...
She is crazy gifted in music...
She has a memory that I covet...
She has a zeal for life like no other person that I know...
She is the most loyal friend you could ever have...
She will never stare at you...
She will never judge you for your looks, clothes, color of skin, or weight...
She is the real deal...

I understand when you are staring it is out of ignorance...
So let me educate you...

You are staring at MY DAUGHTER...
You are staring at a little girl that did not choose the way she was born...
You are staring at one of the 5 most precious things in my life...
You are staring at a music prodigy...
You are staring at a high honor student...
You are staring at the South Side valedictorian of 2019...
You are staring at a future grad of Juilliard...
You are staring at an actor...
You are staring at an author...
You are staring at A LITTLE GIRL WHO HAPPENS TO BE BLIND...

You are staring at Hannah....
PLEASE STOP!!!
I understand a look, her blindness is unique...

BUT STOP THE GAWKING, FINGER POINTING, AND PROLONGED STARING!!!
She is just a little girl, just like yours...
She cannot see you staring, BUT I CAN...

Today...

(I don't know why the font size in this post is so huge... I cannot make it smaller for some reason... Blogger is being difficult. :-)

I am writing this after midnight, so actually it will be tomorrow morning... :-)

Off to bed soon, but want to tell you what a cool opportunity we have tomorrow.

Long story short, about 1-2 months ago a family from Louisville, KY got in touch with us because their 3 month old baby girl was diagnosed with the condition that Hannah was born with. This is such a RARE disease, that I don't know ANYONE with Hannah's condition. The eye disease that Hannah was born with is known as FEVR (Familial Exudative Vitreoretinopathy).

To make it easy to understand, lets break it up...

Familial - This means that it runs in the "family" (i.e. a genetic disease)

Exudative - Refers to the whitish fluid exuded from abnormal blood vessels.

Vitreo - Refers to a disease of the vitreous humor, the transparent gel like substance filling the eye.

Retinopathy - Refers to abnormal changes in the blood vessels of the eye which feed the retina. The retina is the thin layer in the back of the eye which changes light into electrical signals which are then sent to the brain and decoded, giving us an image when we open our eye(s).

There is only one sight that I know that is really dedicated to FEVR: That is how rare it is. So, the sister of the mom found this sight and found this post that I wrote years ago.

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Hi, I am not sure who this message will reach, but I hope that it is an encouragement to all of you. I had a normal pregnancy and great delivery. Hannah was born a healthy 9lbs. 2oz. The day after she was born, they told us that she might have congenital cataracts; bilaterally. We went down to Riley Children's Hospital in Indianapolis when she was three days old. We were then told that she either had FEVR or Coat's Disease. Her Retinas were totally detached bilaterally. At 3 weeks old we flew to Duke University to see Dr. Cynthia Toth. We were hoping to have her retinas reattached. Dr. Toth said that even if she did the most perfect surgery, she was not sure that it would give her any sight, because her retinas were not fully developed. We were told to go home and start raising her like any other child. Since Hannah was our first, we did not know any different anyway. God gave me a promise in that hospital: "Even though Hannah is blind, her body is totally healthy! Nothing is wrong with her, she is not going to die." Those words have always brought me a peace of mind. We also went out to Philadelphia when Hannah was six months old to see Dr. Tazman at the Will's Eye Institute. He too, said that there was nothing that they could do for her vision, but that her eyes looked stable. I told you all of that, to tell you where we are today. Hannah is diagnosed with FEVR, but they are not 100% sure that is what she has. Regardless of her diagnosis, she is 100% blind. She is now 4 yrs. old and doing awesome. This is her second year of pre-school, and she can recognize 1/2 of the alphabet in Braille. She is very independent, and loves life. I will not lie; raising a child with a vision loss requires a lot of time and patience. But, the reward of your hard work is watching your child blossom. Hannah loves to swim and play at the park, and she loves amusement parks. The more thrilling the ride the better. If you are parent of a child losing their sight, I know that it must be frightening. But, be so thankful for the time that your child got to see. Being a parent of a totally blind child since birth; teaching her things would have been so much easier if she had had some sight. You would not believe how a little sight can help in mobility and orientation. Be thankful that your child got to "see" who you are. So many times we focus on the negatives going on around us, and we forget to treasure what they still have. Sight, for any amount of time, is a gift from God! I wish that Hannah could see, but she does not know any different. I have to remind myself that we can not feel sorry for her, because that will only handicap her. Someone once asked a blind girl if she wished she could see. Her response has always stuck with me. She said, "The only reason I wish that I could see, is so that my mom would not be sad anymore." What a lesson that is for us as parents of blind children!!!! We need to empower our children, and not handicap them with pity. If you have ever stayed at a Ronald McDonald House, or been in the Hospital with your child: you know that our children are the lucky ones!!! They will be living a totally happy and fulfilled life. A great book to read is : "If you could see what I hear" by: Tim Sullivan What an uplifting story he has. I saw him on Oprah when Hannah was just a baby. Do everything with your visually impaired child, that you do with every other sighted child. We took Hannah snow skiing for her 4th birthday and she loved it!!!!!!!!!!! There is a great place in Michigan called Challenge Mountain, and they teach any person with any dissability to ski--for free. I hope that I have encouraged someone today, or even gave you a new perspective on things. It is not always easy, but God will never give you more than you can handle. Phillipians 4:13 reads: "I can do all things through Christ who strengthens me." Have a great day, and I would love to keep in contact- Rebekah Hubley--Hannah's mom ------------------------------------------- Well, to say all of this: We are meeting the Talbott family tomorrow. Pray that it is an encouraging day for them to meet Hannah and realize that their little girl will too be doing amazing things, even without sight. I am so excited that God is giving us this opportunity to encourage another family. I would have loved to meet a little girl when Hannah was a baby. It was very lonely and isolating sometimes being the only person around raising a child that was blind. I hope to have a lot of pics of the kids at the museum and lots of stories and a new friendship.

Like Summer...

(Do you like my new 'do' and bikini??? he,he... That really is my body after carrying 3 over 9lb. babies.. Isn't this what you look like too??? :-)

Hearing the most beautiful bird chirping outside, (Hannah would know what kind of bird, because she just knows things like this :-), wearing a tank top, my favorite summer jeans, and being barefoot, makes me feel like summer is just around the corner. It is 75 right now and I am in heaven!!! ;-) Now, I live in Indiana and have to be realistic... It could possibly snow next week; it has been known to snow in April.. YUCK!!! BUTTTTTTTT, I am thinking positively and BELIEVING that summer is almost here. I LOVE not wearing layers, putting coats on EVERYBODY, and just being barefoot. I love the simple things in summer. Makes me feel like a kid! I am really a kid, just my b-day says that I am 32. Who cares right??? I am not counting!!! ;-)

Have a great Easter weekend and we will be enjoying spring break here next week. I am so excited that the weather will be cooperating!