The kiddos and I are all feeling under the weather. We are still in our pj's, Jakob is glue to the tv, and I just finished reading The Hunger Games. Jason is playing guitar, Ellie is sleeping.
It is raining, and I am having the kind of day where it really doesn't matter if we do nothing at all. One day of tv won't kill Jakob's brain, and right now he is majorly obsessed with the Backyardigans. I

Ellie was really not feeling well. She cried for almost two hours last night, and I was getting close to frantic. Nothing I did helped, until I swaddled her and she gave up and slept all night. Poor nugget. She seems better today.

Today was good, and a little bit bad, but mostly good. I had a session with my therapist. I like him a lot, he's very helpful, and I left feeling even more positive about life, which is great.

Then, Ellie and I had our first massage therapy session. It runs through to the beginning of November, 2 hours every week. She LOVED it, and was alert the whole time, smiling and waving her arms around like she does when she gets really excited. I am so happy we signed up for it.

Then, I came home to find a message from our drug advocate, Kim. She contacted our stupid insurance company, and got a horrible customer service representative. I *just* finished a complaint about how another claim was being handled, and was satisfied with the resolution, and now we're back into the thick of people who don't give a CRAP about our situation. I am very glad that Kim is dealing with them for us. Next step is to get the nurse at the endocrine clinic to write a letter to our insurance. Jason talked to Kim, he said she still sounded optimistic. So, we'll go with that. They've got all the experience dealing with crappy insurance companies.

Sometimes I wish we lived somewhere where all this was covered. But, at least I've got resources to hopefully help us.

It isn't the end of the world if she doesn't start on the GH therapy right away. I am determined to provide enough stimulation and sensory activities for Ellie, that she won't be missing out if she isn't mobile as soon as she might have been on GH. I think the mobility at an earlier age is what helps develop higher IQs. But, what do I really know? I'm just doing the best I can.

This morning we met with Ellie's caseworker for the Infant Development Program (IDP). She was really nice. We talked about the various referrals she was going to put through, for speech therapy (1 year waitlist), occupational therapy (6 month waitlist), and physiotherapy (2 month waitlist). She did an assessment of Ellie.

For a 3 month old, Ellie's doing a lot of things she should be. She's even doing some things a little early (like laughing). She's behind in holding up her massive head, so I was shown some ways of encouraging wee Miss to lift it while she's on her belly. She did great holding the rattle, and she was in a good, and interactive mood, which was great.

I asked about going to a private physio clinic before the referral goes through for the physio through IDP, she thought it would be a good idea. So, going to call them for an appointment hopefully next week.

Ellie's tone is low, but it isn't half as bad as she was expecting, so YAY! She had a great feed while Leora was visiting, and that was fantastic. Always looking for the little things that show what a fighter she is.

We are going to meet again in a month.

I have always loved baking. Seriously loved it. My favourite memories of my grandmother are of the two of us baking up a storm during the holidays.
I always imagined having a daughter, and passing that love on to her.

Well... I don't think that's in the cards. BUT, my little man sure loves to help me out! I even made him his own apron.


Yesterday we baked muffins and bread, and today I did my second round of cake pops! These were round one:And these were round two...



Cute, hey? Almost too cute to eat, except, well, this little guy is already in my belly! YUM!

We've been crafting away the rainy days this week. I made Ellie a mobile, which she loves, and I was happy to use up scraps of fabric! Haven't photographed it yet, been busy with other things!

Here are some of those things :
A felt leave garland! Jakob helped cut out the leaves, and I sewed them all together. Fun and perfect for fall.
A mail-sorter. Love this so much!
Magic milk painting. Google it, it's amazing.
People ask me all.the.time how I manage to "get so much done". I don't know that I really do get that much done, but I seem to have things in order, and I don't like to be bored, so here is a rundown of a typical day in our household. I'll use an example of when DH is working, because that is more often than not, and we get more crafting done on those days!
Today looks like it's going to be a typical day.
I got up with Ellie at 6:30am. She sleeps in our bed. I don't care what people have to say about that, I don't care what you do, what you don't do, this is what works for us. She doesn't usually cry, but her little kicks and snuffles let me know it's time to get up. I pump, and then change her, usually at the same time (thank you hands-free bra). After she's clean, I feed her, then get myself washed and dressed. If Jakob isn't up yet, I fall back into bed for as long as he sleeps. Usually we are all up and going by 8am.
Little man is a lot like his mama, he doesn't want to do anything until he's had his breakfast. So, we go downstairs, and I fix him his breakfast. These days, he likes cereal and fruit with a glass of milk. Easy peasy. I make myself coffee, and something to eat, and I put away the dishes that washed overnight. I load in the dirty dishes from breakfast, and we chat about what craft to do.
When we've decided - usually that involves scouring the internet or Pinterest for ideas, we set up the craft, and he gets started. Meanwhile, I start on whatever chore it is I've decided to attempt to do. Today, it was clearing out my fridge. My goodness, there was a lot of junk in there! I saved all the glass bottles, and loaded them in the dishwasher. Always happy to have more glass to etch!
When my fridge was clean, Jakob was bored of cutting things up. So, I had him clean up everything, and turned on an episode of Dora the Explorer. I am not pro-tv, but it's raining cats and dogs today, and he's feeling a little under the weather. Besides, Jakob now knows more Spanish then I do, and chooses to use it on me when he is feeling clever. Thank you, Dora.
With him happy for a half hour, I decided to make a batch of caramel sauce that I found here. It is DIVINE! Took me just under half an hour, so I had time to do the dishes before Dora was over.
Then Jakob came bounding into the kitchen, and somehow convinced me to make vanilla ice cream. We did, just easy homemade vanilla ice cream, in our old crank-style maker. He started going around the house collecting things, I'm not sure what, in a little basket. He's happy, I'm happy.
I put Ellie in the sling (up until now she's been either in the bouncy chair staring at her mobile in wonder, or lying on her play mat, staring at herself in the mirror). I make homemade mac&cheese muffins from this recipe. They're pretty great, with the addition of some extra spices, and a substitute of cream for milk. Mmmmm...
I wake up Jason, so he can get ready for work (it's about 1 at this point). Feed Jakob, feed Ellie, and remember that I forgot to pump. Feel boobs, they can wait a little longer. Jason eats the mac & cheese like it is going out of style. Will have to make that one again for him. Jakob wasn't all that impressed. All he wanted was ice cream. I force feed Jakob the rest of his lunch, and we all have ice cream. It is GOOD.
My Skype starts ringing, it's my parents in the UK. We talk every day. I miss them.
After lunch, I clear up the dishes, and look at the laundry waiting to be folded and put away. Not in the mood. We visit with Daddy before he has to leave for work, send him off with coffee in his travel mug, and Jakob and I watch the rain for 10 minutes, before we both get a little chilled.
Jakob says he is tired. I am tired too, so now we're contemplating napping, although naps usually happen around 4pm. Only an hour early, I guess that's not bad.
The dishwasher is drying, I am going to unload it, and then check on my thawing chicken. Not sure what I'm going to make for dinner. Not so fun to cook when it's only Jakob and I.
I call my mother-in-law. No answer. Would be nice to have somewhere to go this afternoon, but they must not be home yet.
Jakob asks to play with his train set. I get that out for him.
Then, I go online, and check things out. Check my email, FB, FF, and find a minute to blog :)
The rest of the day is going to be pretty slow. I have to put the laundry away, or it's going to get out of hand. I'll probably set up another craft for Jakob while I make dinner. He's been asking to paint. He really liked glue painting (add food coloring to different bottles of white glue, and "paint" on white paper), so maybe we'll do that. He's also been asking for Halloween crafts... too soon, maybe? Going to play with glowsticks and balloons when it gets dark.
Both kids are due for a bath tonight, so Ellie will go first, and then Jakob. I put her baby bath in the big tub, and then reuse the water for Jakob, provided she doesn't poop. We try to save water where we can. Then, the three of us will probably snuggle on the couch and watch a Disney movie. Jake will go to bed.
I'll unload and reload the dishwasher, shine my sink. Ellie will usually keep me company in the kitchen while I'm working. Then I check the lights are out, the door is locked, set out the clothes I want to wear for tomorrow, check my calendar, and go to sleep!
Busy, but time enough to spend with my kiddos, and paced so that every day I go to bed feeling accomplished and ready for tomorrow.

I have been trying to improve on my patience. I've been bothered by the little things that get to me, and I know it's because of the stress of everything that's going on with Ellie, nonetheless, I don't feel right snapping at Jakob and Jason about little things that really shouldn't matter.

The big issue is, I wish I didn't know ANYTHING about Prader-Willi. I wish we could rewind to before we got the diagnosis. I wish I just didn't know. I think I was happier thinking she might be diagnosed with benign infantile hypotonia. That I could have dealt with.
Don't get me wrong, I can deal with PWS, I just don't want to have to.
My lovely, amazing new friend Mandy, and her daughter Sophie, who also has PWS, was over yesterday. We were talking about how the PWS clinic went the other week. Both of us left with our heads spinning at everything bad that is supposedly in our future. Because I know what is allegedly going to happen, I look at Ellie, and I am so fucking conflicted.

I see a girl who already defies the odds. Fucking odds. She has defied so many. Two miscarriages in a row before we got pregnant with her. All my pregnancy issues, all the times they told us "I'm sorry, but it appears you've had a miscarriage". All the times my heart dropped to the floor and shattered, only to have her fight her way through everything. She made it to 32 weeks, and she came out screaming. Prader-Willi babies don't cry at birth, they're supposed to be silent. She screamed, which made me cry, because I was so sure, so sure that she was going to die. The moments before her birth were the most frightening of my life. I didn't want to push her out, because I was so sure she wasn't going to live. But she came out screaming, and I cried.
She was here, and she made it known.
I don't need to recount the time in the NICU. She was on her own timeline. Thinking back to leaving her there, every day, for 63 days makes me feel sick to my stomach. I can't believe how much time I missed with her, how little she was held, how no one that truly loved her was with her around the clock.
I know it doesn't help to dwell on things passed, but if I had to do it over again, I would have asked so much sooner to have her come home with her ng tube. She spent so long there, and when she came home, she started doing so well. She's been off the ng tube for 46 days, they told us in the NICU that it would likely be TWO YEARS before she ate on her own.
I know she has PWS, I've seen the stupid piece of paper. 46xx.ish del(15)(q11.2q11.2)(SNRPN-). I have it committed to memory. The stupid deletion that makes her different.
If I didn't know, I wouldn't look to the future with dread. I would just look at her, NOW, and see how far she's come from being a tiny nugget attached to tubes and monitors, to the most beautiful baby girl I have ever seen in my life, giggling, smiling, in love with her reflection, and absolutely in love with her family. It's hard though, the unknown is hard. The thought of her turning into what the other parents say she will - that kills me.



I've read about people giving up their toddlers for adoption. I've read of kids being shipped off to group homes at 13. I've heard about parents that just can't handle everything the disorder encompasses. The food, the hunger, that pales in light of the *other* things that rules these kids lives, and make them, the most of them, very difficult to handle.
I am terrified.
And yet, I have this little fighter, who has already proven so many people wrong. When she cried in the middle of the PWS clinic presentation, I could feel everyone staring at us, their babies don't cry.
I won't be going to another PWS presentation. I am going to stop my own personal researching. I will start Ellie on the growth hormone, if that's what the endocrinologist wants, but I am not going to kill myself stressing about things I can't change.
Ellie is going to be fine. SHE IS GOING TO BE PERFECT.
Hear me universe?!?! SHE IS GOING TO PROVE YOU FUCKING WRONG.

God, I hate the internet, and yet, I can't tear myself away from it.

Here's what it says on the Eli Lilly website (the makers of Humatrope/somatropin):

There have been reports of sleep apnea and fatalities after initiating therapy with somatropin in pediatric patients with Prader-Willi syndrome who had one or more of the following risk factors:
-severe obesity,
-history of upper airway obstruction or sleep apnea, or
-unidentified respiratory infection.
Male patients with one or more of these factors may be at greater risk than females.

Patients with PWS should be evaluated for signs of upper airway obstruction and sleep apnea before initiation of treatment with somatropin. If during treatment with somatropin, patients show signs of upper airway obstruction (including onset of or increased snoring) and/or new onset of sleep apnea, treatment should be interrupted. All patients with PWS treated with somatropin should also have effective weight control and be monitored for signs of respiratory infection, which should be diagnosed as early as possible and treated aggressively.
Unless patients with PWS also have a diagnosis of growth hormone deficiency, HUMATROPE is not indicated for the long-term treatment of pediatric patients who have growth failure due to genetically confirmed PWS.

After a little more reading, this time through links provided on the endocrinology department's website, I think I understand a little more.

First, if she had qualified, ie. failed the test, she would be covered under PharmaCare, and we would have asked our insurance to cover the deductible, and cost of supplies (needles, syringes, etc...). But, since she didn't fail that effing test, we might get lucky and qualify for the Compassionate Supply program. Created by the pharmaceutical company, they contact our insurance for coverage, and then assess what will be covered, and usually ask you to contribute a monthly amount.

Because it's run by the pharmaceutical company, the program can end anytime. No guarantees.

But, that's our only hope :(

I just finally got all the information together to register for Fair Pharmacare, to find out that I'm already registered...? I am POSITIVE I never registered, which is bizarre. But, we already are registered. I guess that is good.

Our deductible for coverage is $1200. TWELVE HUNDRED DOLLARS!! And they only cover 70%. That's ridiculous. Who just randomly has that much money?!

So, Somatropin, the growth hormome therapy is a Special Authority drug. Off the PharmaCare website it says:

Drugs requiring "Special Authority" coverage

A Special Authority grants full benefit status to a medication that would otherwise be a partial benefit or a limited coverage drug. All requests for Special Authority coverage must be submitted by your health care practitioner.

Special Authorities are normally granted for a specific drug for an individual patient. In some cases, a Special Authority exemption may be granted to a physician or a physician specialty group Exemptions provide coverage of a specific drug for all patients of a physician or specialty group.

Actual coverage is based on your usual PharmaCare plan rules, including any deductible requirement. If you receive Special Authority coverage for a drug, it may still be subject to the rules of the Low Cost Alternative Drug Program, Reference Drug Program and the PharmaCare Maximum Days' Supply and Maximum Pricing Policy still apply.

Special Authority coverage begins the day the information is entered into PharmaNet, the B.C. computer network that links all BC pharmacies to a central set of databases. Depending on the individual drug, Special Authority coverage may be for a limited time (for example, six months) or be indefinite.

To be eligible for coverage, Special Authority must be in place before you purchase a drug. Coverage cannot be provided retroactively.

The following categories of drugs require Special Authority approval before the prescription is purchased.

• Limited Coverage Drugs All Limited Coverage Drugs require Special Authority approval.
• Reference Drugs If you cannot take the reference product, your health care practitioner can request coverage of another drug.
• Low Cost Alternatives If you cannot take a lower cost alternative, your health practitioner can request coverage of another drug for you.
• No-Charge Psychiatric Medication Plan Some medications require Special Authority approval to be covered under this plan.
• Alzheimer's Drug Therapy Initiative PharmaCare is accepting requests for coverage of certain medications used to treat mild to moderate dementia.

» To find out if your drug requires Special Authority, use our online Formulary Search.

So... Then I looked up Special Authority on Health Canada. Read carefully:

Limited Coverage Drugs - Special Authority Criteria

Generic Name / Strength / Form

somatropin

Criteria	Approval Period
For children 20 years of age and under, when prescribed by an endocrinologist at the British Columbia Children's Hospital for true growth hormone deficiency or chronic renal insufficiency.	One Year

Practitioner Exemptions

• No practitioner exemptions

Special Notes

• Not a benefit for the treatment of adults or for the treatment of children with Turner's Syndrome, Prader-Willi Syndrome or Noonan's Syndrome.

Fan-freaking-tastic. NOT A BENEFIT.... The girl NEEDS growth hormone, and it's not a fucking benefit.

So now what? Ellie still needs to pass her sleep study. And, part of me is wondering if I can ask for her to be re-tested, because I don't understand how she can possibly produce enough GH, when she's dropped from 10th %ile to 0.1%ile in length. I don't understand.

Soooo, Ellie turns five months this week. FIVE MONTHS!!!! What the?! How the??!

She's amazing. I seem to have misplaced my camera, when I find it (if I didn't actually leave it at Costco, like I think I may have...) I will upload pictures!

Her head control is great, she's just starting to be able to lift her head off the ground, which is quite the feat, since it's in the normal range for her gestation, while the rest of her is teeny tiny. She's very vocal, and crying is normal now! She will cry several times a day, usually because she wants to eat, and most of the time it's in the middle of the night, when I would rather be sleeping!

She is 100% bottle fed now, which is absolutely incredible. She won't take feeds by cup anymore, if she can't suck, she cries. Love that!!

She giggles, she smiles, she coos. She's totally my girl, and gets SO excited when I come into the room, it's adorable. I love her more than words could ever say! I can't believe she was conceived a year ago tomorrow. That's crazy, the year has gone by in a blink!

Haven't had her weighed in a while, or measured. Not since the week she got shots, so almost 3 weeks, I guess. I need to find that camera! Will post more later :)

Sigh... I am frustrated, and feeling discouraged.

I've been looking at our insurance information, and at fair pharmacare. Pharmacare apparently doesn't cover gh treatment for kids with PWS. There might be a chance of getting coverage if we go through Medicum. They have a program, supported by the pharmaceutical company, to cover the cost, but even that isn't a guarantee. Our insurance covers maybe 80% of the cost, but that is unlikely to include the cost of needles, and 80% of like $10000-30000 still leaves a LOT extra. I guess we won't know until we get there, but I am not at all looking forward to this :(

One of the moms today was talking about compassionate coverage. Looking for information on that, but I have a feeling we won't qualify. We barely make enough to cover our mortgage and bills, I don't quite know how we can come up with that much extra every month. Guess we will see.

I know it will all work out. It has to. It always does.

Kids with PWS can have temperature regulation issues. While she was in the NICU, Ellie did really well. Today, though, on the first real Fall day, I guess I didn't dress her enough. Poor nugget, her hands and feet turned purple, in her socks, and under a blanket. I added extra layers, but she kept getting colder, so I stripped her down, and she's tucked under my shirt, skin to skin.

:(

Yesterday, I met with Mandy and her daughter, Sophie, who also has PWS, and is a month older than Ellie. Thank God for her! She's local, she's real, I already know we're going to be close. I am beyond grateful to have someone to go on the journey with. I know I have lots of support online, but it's nice to have someone who sees all the same people as us. It's good.

Tomorrow, we have the PWS clinic day, and Jason is going to come with me to the presentations. I'm looking forward to hearing what is going on, and looking forward to seeing what our next steps are.

I saw one of Ellie's nurses from St. Paul's today, I made her some blankets for her new baby, and she marveled at how Ellie has changed. I think I'm going to go downtown next week for a visit!

Dr. Stewart just called. Ellie passed her growth hormone stimulation test. I don't understand.

She's so small, so very much smaller than the rest of her peers, but apparently her pituitary gland works just fine. I can't believe it. I thought for sure that this part would be easy. She would fail, they'd put her case through to the board, she'd get approved and we'd start treatment.

Now... we have to fight for it. Our insurance plan SUCKS. I remember when we first met with the endocrinologist, she said that most insurance companies cover the cost, but I know ours only covers 80% of things.

I'm too tired to process all of this.

Finally, we have a home visit scheduled with the Infant Development Program director. She's coming over in two weeks. Originally, our referrals went through based on Ellie's prematurity alone. I told the lady about Ellie's diagnosis, and she said that bumped her priority in line, although there is still a substantial wait list. So much waiting, it seems we are always, perpetually waiting for something.

After our visit, she will arrange for the various therapies that Ellie needs. If I had more time, I would have already called around to different places that don't need a referral, but life is a smidgen busy.

Looking forward to our first play date, tomorrow, with a little girl who is a month older than Ellie, who also has Prader-Willi. I am excited to meet someone who is going through everything we're going through, on the same time line. That's pretty huge!

Friday is the PWS clinic at the hospital, so we will have the chance to catch up with the families we met at the walk. I'm eager to attend the presentation put on in the morning, that should be interesting.

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." - Christopher Reeves

Today was the first time I've been out with Ellie, where someone knew she had PWS, and said something to me about it. It was someone I haven't seen in a few months, and when she saw me, she got this sad look on her face, and gave me a huge hug, while whispering in my ear "I'm so sorry to hear about all you've been going through, I can't imagine what it must feel like".

Now, in all honesty, I thought she had the wrong person, because she sounded so sad for me. I thought she meant someone had died, or something, and then it clicked. She was talking about Ellie's diagnosis. Oh... right. That. So, I made small talk about it.

But something rattled me to my core about that. Please, please never, EVER feel sorry for us. That's the worst thing you can do. I went into the bathroom, and had a little cry, and pulled myself together.

I am SO happy I have Ellie. I don't like PWS, but it DOES NOT define her, or us, and we DO NOT feel sorry for ourselves. We rejoice in every moment we get with her.

Please, be happy for us, we have the most beautiful, tiny, perfect daughter anyone could ever wish for.

We did it. We're home, I didn't cry, didn't faint, stayed strong. Ellie was brave, very brave. She is completely wiped, has absolutely no tone left, is white as a ghost and sleeeeeepy. I think it might take a few days to get over this ordeal. Please, please, please let the results show she failed.

The nurses, Anne and Susan (easy to remember when your name is Susanne), were amazing. Susan used to live in the unit directly beside us, 15 years ago. Funny how it is a small world. Anne, well she was master iv-inserter. It took several tries, and she ended up putting it in Ellie's head, but given she had next to nothing to work with, I was very impressed.

I watched the Brave Little Toaster, and Wall-E, some tv, and music videos. Every half hour they drew blood, and also checked her sugar levels. I'm dying to hear the results.

I thought my days of pumping in a hospital were long over, apparently not. The smell of the pump room put a lump in my throat. I hate that smell, so many memories of the NICU are tied up in that smell... but, now we're moving forward, things are going to be okay.

I have no idea how in the world I am going to learn to give Ellie a shot everyday.

So many people called to check on us, texted me for updates. Someone did not. Didn't even call this morning to wish us luck, didn't text me, did shit fuck all. He is in humongous shit when he comes home tonight, if I let him come home...

grrrr.....

Poor baby. All I can do to help is let her hold my hand. She is so small. Three more hours...

First draw was good. Two more at 30min intervals, then a three hour interval. They put her in trendelenberg to get the blood flowing, poor wee nugget.
Our dietician came by to see us for an update, love that! There really is a good group approach to her care. Not a lot of repeating having to be done.
Everyone hope Ellie fails this test. Come on, fail!!

Too many tries, and she now has red hair, but they started the iv in her head. Watching the brave little toaster.

Hello. I've been meaning to keep up with this blog, for me it is an important way of keeping track of everything we've been through, it's just hard to find the time to sit down and write.

More often than not, I begin a post, only to have to leave in the middle to do something, and I can never seem to find the time to finish the post at a later point.

Ellie is amazing. She's beautiful, she's everything.

Tomorrow, she's finally going in for her growth hormone stimulation test, thryoid function test, as well as a test for adrenal insufficiency. A lot of testing, but all of it is so important.

In October, we're going in for her sleep study, and then hopefully everything falls into place, and we can get her started on growth hormone treatment as soon as possible.

I have so much hope for the treatments. I was watching a couple videos from the 2009 FPWRC conference, where they discussed growth hormone treatment and all its benefits. The one that strikes me the most, is the impact it has on intellectual quotient numbers. Historically, adults with PWS had iqs in the mid-60s, now, if started prior to a year, and also in combination with a healthy lifestyle and maintaining a normal body mass index, iqs average 95!! A "normal" individual falls in the range of 85-115. That is undeniably exciting.

so, tomorrow is a big day. I'm tired, and need to clean the kitchen. Just Ellie and I tonight at the apartment, have to be at the hospital before 8am!

It is hard for me to be alone. Years ago, no, even just one year ago, being alone was something I cherished. Little moments of peace and solitude. Back then I didn't realise just how lucky I was to have worries no greater than wondering if we could afford to eat out more than once a week. In those quiet moments, like now, for instance, in the wee hours of the night, I have nothing to bide my time with, but the slowly ticking clock, and my thoughts and worries.
Outside, I can hear a group of teenage boys, drinking in the church parking lot. They don't know how lucky they are.
You see, in these moments I am faced with reality.
I used to write, gosh, I could write for hours. I used to draw, doodle, fill page upon page, book upon book with ideas, hopes, dreams. Now, I am afraid to let the pen go free across the page, afraid to let my subconscious take over, afraid that I might be horrified by what appears across the pages. Instead, I force myself, limit myself, to lists about topics to research about Prader-Willi. Life expectancy? Fertility? IQ? Will she be able to speak more languages (here, I just resisted the urge to write "will she be a poliglot?"), God, will she be able to write?? Not letters on a page, but do what I did for so long, to pour out your inner most secrets to a book of blank pages, that soon becomes YOU?
And then my mind races to all she is going to have to face, all that we all take for granted, all that most are so lucky to have come with ease, and my eyes sting, and my throat burns, and before I know it, tears spill onto the pages of stupid lists, and I feel broken.