When I moved to GA the summer of 2009, I had Tmobile and was very happy.

Unfortunately, our house was built REALLY close to cell phone tower, so the signal literally goes OVER my house.

LIKE THIS

When we moved into this house over two years ago we ran into this bad signal issue.

I went to Tmobile and instead of saying how we could get a better signal, they just released us from our contract because they couldn’t provide us service.

Fast forward two years, my medical aide Jackie moves in.

She had Tmobile service.

I couldn’t reach her…when that was the purpose of her moving in FOR THE FIRST PLACE!

Her teenage daughter called for a ride from work and had to call me because she couldn’t reach her mom.

Jackie had to switch service (we had to go with At&T to get a Microcell because we STILL couldn’t get decent service).

We went to the Tmobile store to explain the situation and they were very understanding. We just needed to pay them $200 to cancel the contract.

WHAT?!

This wasn’t the agreement two years ago, this wasn’t what Jackie was told when she agreed to Tmobile service six months ago and it sure wasn’t what she TOLD TWO MONTHS AGO:  if she had connection problems she could stop the cell service.

We were told they had changed policy.

Jackie went up the chain of command asking to *gasp* ACTUALLY SPEAK TO PEOPLE.

She finally spoke to a person named MELVIN BROWN, who told us there was nothing he could do. THEN HE HUNG UP.

Mid-sentence. Without warning.

HE.HUNG.UP.ON.HER.

After much tweeting and this

They did nothing.  They STILL did nothing.

So if you see me annoying @Tmobile and expecting better of their treatment of customers than to be hung up on and be expected to pay for a non-service,  please bear with me.

In Florida.

The first one Peter and I ever owned.

The one we brought our babies homes to.

Back when we never had a thought to what the future had in store.

We had to leave that house to make that future in Georgia. Leaving people we trusted to take care of the place that we’d always think of as “home”.

Then we found the unexpected can always happen.

At a time our lives were thrown in confusion. Uncertainty. Chaos.

Then we found trust didn’t go very far.

While I was in the hospital fighting to come back we were too busy to realize that those people had decided that since I wasn’t calling them each month, they just wouldn’t pay.

It has taken months of acceptance.

Months of getting over the selfish behavior of those people who STILL live in our house.

It isn’t going to be our house very much longer.

I hope the regret of the choice they made eats them up.

But you know what matters?

There’s a house.

In Georgia.

This falls into that WAY TMI category, but I have to tell the tmi for it all to make sense.

Sorry.

Not sex, Mom.

Months ago I asked my therapists a questions I figured they would have a solution for.

“When you only have one arm to hold you, how do you pull you pull your pants down so you can go to the bathroom?”

Lots of answers, right?

None.

Nada.

Zip.

Zero.

I was floored that there was no solution.

But I was even MORE amazed that in all their combined years of therapy, no one had asked about a basic function.

This was a fundamental part of independence.

Something EVERYONE does.

I had to come up with my own solution.

I tried several types of underwear. Then found the ones that pulled to the side.

Then I did what was know (in my world) as the Bathing Suit Method.

I wore dresses.

Skirts that could be tucked into my bra.

This worked for a long time.

Then I started practicing standing on two feet.

Balancing on two legs.

And the I did this….

Ok.

This picture is important for a few reasons.

*The picture of the floor shows my shadow and the fact that I was standing

*I f I took a picture with my cell phone camera while standing then I wasn’t holding onto ANYTHING

*That was the longest I had stood, without support, since November 2009

**Those two odd tiles are where they widened the doorway!!! (which is totally off-topic, but cool!)**

Since I make this breakthrough of trusting my right leg to hold me, and gave my left arm some freedom I’ve done something major.

I can take my underwear OFF.

I’ve started wearing pants again.

When summer comes this year, I will pull on my own shorts.

Maybe I’ll take a picture of them.

It told of my frustration and anger at Locks of Love.

I’m still angry with them for letting people believe lies for financial gain.

Read it. Share it.  Don’t forget it.

(damn, I used a lot of words!)

Ok, fasten your seat belts because this is a letter that I’m sending RIGHT.THIS.SECOND.

Dear Locks Of Love,

HOW dare you?

After hearing that multiple requests for wigs from your organization were rejected because you “prefer” to give your products to kids with long-term hair loss ONLY, I am not only angry, but frustrated and hurt and truly shocked.

How dare you minimize the emotional and social effects on any child with hair loss? Whether that hair loss is life-long or ONLY for months/years, how do you make the choice that one’s child hurt is less than another’s?

From your own website:

The children who receive these hairpieces have lost more than their hair; they suffer from a loss of self. Many children have been teased by classmates and/or embarrassed by the attention they receive because of their hair loss. They often will withdraw from normal childhood activities such as swimming, going to the mall or even playing with their friends. While wearing a hairpiece is certainly not a cure for these children, it can help restore some of the normalcy to their everyday lives that most of us take for granted. It is our goal to help provide a foundation on which they can begin to rebuild their self-esteem.

While I understand that children with alopecia do have a longer-term need, can I just share that as the parent of a child whose hair fell out in clumps, who hurt with every glaring stare and pointed finger, this is a devastating punch in the gut.

So many of our friends and our friends’ children were quick to cut their hair in a show of support and solidarity when my daughter lost her hair. They donated to your organization because they thought they would be helping other girls with cancer better cope with the physical changes and self esteem issues that occur during their treatment.

I am so sad to tell them that it is not so. Your organization doesn’t deem them sufficiently affected by their hair loss, you don’t think that their tears at seeing their beautiful hair shaved off are worthy of your help.

I am outraged on behalf of the many girls who sent in applications only to receive a rejection. REALLY? THIS is how you help? By telling them that their hair loss is only temporary and that it isn’t a big deal, so suck it up?

I hope you never have to hold your child who is sick, fighting a life-threatening disease and whose desire to at least look somewhat “normal” is denied. It’s not something I would wish on anyone.

For future reference, if anyone ever asks me about donating their hair, I will make sure to steer them in the direction of organizations and foundations that take the needs of short-term hair loss sufferers.

Wigs for Kids not only provides hairpieces for children with the short-term hair loss from chemotherapy treatment, they are donated free of charge. (Locks of Love has a significant cost to many families)

**Edited to update (which, at finish, could have been an entire post of its own, but oh well)

Let me start by saying this: I think any organization that helps kids, does its best to benefit children in need, whether its financial, physical or emotional, deserves a huge thank you. I do think Locks of Love is a great organization for what they do, for whom they do it for. I know that for the families and children who benefit from their work, it’s an amazing gift and much deserved.

My biggest issue is the misconceptions that they don’t correct and foster to breed the donations. I know that this information is coming as a shock to many, I was floored to find out that so many of the kids we know had been denied. However, if you say Locks of Love, how many people truly think “what a great alopecia charity”? No, I think because the vast majority of people don’t realize that alopecia is such an issue for children, a half a million kids in the US suffer from one form or another of this disorder, they automatically assume that the hair is being donated for kids with cancer.

I couldn’t count on all the fingers and toes in my household how many people emailed or called or just stopped me to say, “My little girl cut her hair and donated it to Locks of Love in honor of Peyton.” Do you think they would have done that if they’d known that should Peyton have wanted a wig, she would have been denied? Do people realize that when they donate to Locks of Love that they aren’t giving so more wigs can be made, their funds may be used for alopecia research grants? Not that it’s a bad thing by any means, but people need to know. That’s a lot our fault for not researching better into where we’re donating.

The other thing that I learned about them is that some 80% of hair donated is thrown straight into the trash or SOLD, deemed “unusable for the wigs”, yet the hair is sold to wig companies who then turn them into WIGS. There are some really interesting statistics and information about how Locks of Love takes in their hair donations and funding if anyone is interested in learning more.

I certainly did not mean to diminish the suffering of children with alopecia, who make up over 80% of Locks of Love’s donations.

But I also know that these children’s disorders aren’t life-threatening. A child who is old enough to be aware of their hair loss is old enough to be very aware of how sick they are. And if having hair makes it easier to face a day, why can’t Locks of Love get behind that too? Leukemia makes up about 80% of childhood cancer diagnoses and these kids don’t qualify.

Again, I’m just glad to hear of an organization like Wigs for Kids or Little Princesses (which does the same thing for cancer kids in the UK) that fills in the gaps of what Locks of Love doesn’t provide. One more thing is that since Locks of Love is still the big name brand out there for hair donation, the smaller foundations don’t get as many donations, of money or hair. So, if you ever hear someone say they want to donate their hair specifically for cancer kids, make sure to just share with them that the majority of them won’t get it through Locks of Love.