Getting Real

Let's get real for a second, K?  If you don't hear from me for a week, or all I seem to post about is crafting and gardening, prepare for the "after the freak out" blog post.  I know I've mentioned before that blogging and crafting is my "therapy" but seriously, it's not cutting it.  Let me explain with some random thoughts I've had in the past few days/weeks.

* Everything food related makes me think about PWS.  Grocery shopping, eating, cooking, watching people eat, smelling food, thinking about food, reading about food, seeing food on T.V., you get the point.

This sucks.  I'm not really a fan of dwelling on depressing thoughts and honestly, thinking about the food issues that Lillian is facing in the future really freaking stresses me out.  Every time I put her in the grocery cart to do my grocery shopping I wonder when it will be the last time.  One day I'm going to have to decide it's time to stop taking her.  When should that start?  I have no freaking idea. Do I do it soon? Do I wait until she has food seeking issues?  Is there even a *right* way to go about this?  Am I over thinking it? ugh.

* I have way too many responsibilities.  I'm with Lillian for all 5 of her therapies every week.  Around 20 per month.  That's not including the doctor appointments I take her to and the countless emails I send to various medical professionals just to keep things on track.  I pick up her prescriptions, decide what supplements to start, when, and how much.  Struggle to get her to eat enough by mouth every single day without feeling like I'm forcing her to eat when she doesn't want to (we still use her g-tube but we've got her to take almost all feedings by mouth each day this week). 

She's making amazing progress and I see how much she wants to get stronger and do more.  It gets me through each day... but at some point towards the end of the week I'm near a nervous breakdown. This past week I was so exhausted and tired of taking care of Lillian by myself (Phil had night meetings, softball games, and went to the gym several nights on top of working full time) I nearly went crazy.  For real.  I told Phil I was going to leave him and Lillian and let him figure out how to do everything by himself just so he would know how I felt. And I was SO serious.  I'm not talking about *leaving* him.  I'm not that crazy, but I was really thinking about getting in the car, driving until I felt like stopping, and not coming back for a week.  Thankfully after a much needed day on the lake Sunday with my best friend and a few margaritas (which was suggested by my husband) I was feeling like myself again.  But it still freaks me out to know I was *thisclose* to walking out.  I just want him to realize how stressful it is to have everything resting on my shoulders.  I would never leave him or Lillian, but I would sure leave him WITH her to figure things out because I'm so sick of being the one to always keep track of everything.

*Which leads me to - I nearly have an anxiety attack if Lillian is with anyone other than myself or Phil for more than a couple hours.  The nursery at church was ok because I was there, but Friday we left Lillian with Phil's parents and allowed them to take her out to dinner.  I've left her with his mom before, but that was in the comfort of their home.  She's never been in the car with someone other than the two of us and the entire time we were gone I was terrified that they would get in a wreck, or they would let strangers say mean things to her (I hate comments like "my she's chubby"), or they would let her put dirty stuff in her mouth or God forbid feed her something other than the food we gave them.  I'm stressing out again just thinking about it and this was 5 days ago.

* I'm starting to wonder if I really need therapy or medication.  Just typing that makes me cringe.  Not that there's anything wrong with those two things, but I really thought I could handle all of this.  For the past 9 months I've been against medication because this is my LIFE.  This isn't a bad break up or a traumatizing experience that I'll get over one day.  This is my life. Every day.  So the thought was I would just have to figure out how to deal with it.  Based on this blog post you can see I'm not doing a great job of "dealing with it".  I don't want to be medicated forever and I wonder how I'll ever learn to cope with life if I try to put a band aid on it by using medication.... but I'm at the end of my rope and rather than go crazy out of my mind I'm really starting to think medication is not such a bad idea.  And therapy.  I contacted a therapist yesterday and when she told me she wasn't accepting new clients.... let's just say I convinced her she needed to.  So we start next Thursday.  I'm not sure how this is supposed to help, because it's not like she can come over and clean my house and cook dinner (which would be the help I need), but I'm hoping she can at least offer some advice on ways to cope and maybe avoid medication, or prescribe the right kind of medication so I don't lose who I am while I'm taking it.

So um, there it is.  My post-freak-out-blog-post. Did I mention that over the next 3 weeks we're traveling with my in-laws on THREE different vacations?  Be prepared to see a lot of crafting and gardening posts ;-).

And whoever offered the advice about my etsy shop and the photos with the "busy" backgrounds, thanks!  I appreciate the advice.  I'm hoping Lillian might let me use her beautiful head as a model sometime... but since she's become so mobile (squeeee) it's getting harder these days. 

That girl really is the best thing that's ever happened to me.  I know I just wrote an entire blog post about how stressful life is, but she makes everything worth it.  She has made my life better than it's ever been and I love to watch her discover the world around her every day. 

This week she finally made sounds other than vowels.  We got some N's, D's, M's and G's.  All in one week!!!!

Today we were without electricity due to the nasty storms that have blown through here the last 2 days (it's back on now), so we went to get some coffee and walked across the street from the cafe to the library.  She loved it. (sorry for the crappy cell phone pics)

And this is how mommy gets her therapy without involving office visits....

Hope you all have a great week!



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New Hair Clippies!

The 4th of July is right around the corner and I'm super busy making red white and blue hair bows and clips.  Check them out at my etsy store - http://www.lilbloomies.etsy.com/ .  Mention this blog in a convo (before purchasing) and get FREE SHIPPING!

Great deal, right?  Also, keep checking this weekend because I'm adding more navy blue and red bows bows (larger sizes) and some medium sized blue on red bows.

Enjoy!

(I love custom orders, so feel free to request something specific to match your little ones outfit)



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I've Been Replaced

OK, well... not quite.

This week I'm helping out at our church's vacation bible school.  I requested to be placed with any special needs kids that signed up and today they placed me with a little girl that has Fetal Alcohol Syndrome.  She's in 2nd grade and doing very well.  I honestly wouldn't have known she was different with the exception of a little speech delay issues, but what kid is perfect? None of them are.  (Sorry if this is the first time you've heard your child is NOT perfect... reality sucks right)

I teared up a bit when they told me I would be her buddy.  First because I just feel sympathy for any child that has special needs, and second because what she has is completely preventable. My heart just aches for her that she has a "label" because of her careless mother.  The child is adopted (thank God, because obviously her birth mother was careless) and her adoptive parents seem to have done a great job.  She was so smart and happy and when snack time came she was quick to tell us she couldn't have cheese, because her doctor said so.  Such a sweet girl.

So since I was volunteering for VBS, Lillian spent the morning in the nursery.  That's right, you heard me.  The NURSERY.  For the first time ever she was left in the care of someone other than a medical professional or a family member.  And she L-O-V-E-D it.  So much that when I came in to make her a bottle she didn't even notice me.  And when I came to pick her up she was all smiles for the nursery volunteers and didn't even look at me or acknowledge the fact that we had been separated for 3 hours.  I was really hoping for a big grin for mama, or maybe a reach, but I got nothing.  Just the left over smiles and cues for the sweet ladies in the nursery that took care of her and the other babies.  ::sigh::  I was replaced in about .2 seconds for new toys and new faces.

Tonight when Phil put Lillian to bed she wouldn't go to sleep and ended up crying.  Now I know this is ridiculous but I was SO relieved because it meant she still needed me.  This child very rarely ever cries when we put her down, so I soaked up every minute of the snuggles and read Fox in Sox while I held her and she helped me with the pages and occasionally reached up to twirl my earrings between her fingers.  She went to sleep after I laid her back down and told her goodnight.  It's like she knew I needed that. 

I'll admit, even though I have a passion for helping kids, the main reason I volunteered for VBS was to give Lillian this opportunity.  For the rest of the week she'll be in the nursery from 9am-noon watching other kids her age do their "thing".  She absolutely loves seeing other babies.  As soon as she sees them she gets the biggest smile on her face and says a quick "AHH" and waits for them to respond.  This girl is a social butterfly.

Day one most certainly paid off.  When we got home tonight she CRAWLED.  It was backwards... but so what?!  Lillan used her arms to push off, put her knees underneath her body, and crawled backwards.  It was like a scoot-crawl, but a very good scoot-crawl.  She made it about 4 feet before backing into the chair in the living room. This is coming from a baby who for the first time sat straight up without using her arms just this past Sunday.  She's making progress my friends.  Big progress.

And just because, here are some fun pictures from the past few days...

Hanging out at the Farmer's Market Fountain

Swinging in the yard

Hanging out at her dad's work place.

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RFL blog is up!

Follow the journey of Lillian, Vanessa and Beth as we raise money for Foundation for Prader-Willi Research.

http://www.runningforlillian.blogspot.com/

XP: The Diagnosis

When we first brought Lillian home after 2 weeks in the NICU at Riley Children's Hospital, we were praying for her to have Unexplained Hypotonia.  I just wanted to take my baby home and get back the chance to have the new mom experience that the doctors robbed me from having.  My dreams of having those adorable newborn photos were crushed by the doctors instructions not to take Lillian anywhere but home.  The feeding tube she had taped to her face and pushed down her nose into her stomach was a constant reminder that nothing was going as "planned."   The baby we planned for from day one became the baby that none of our plans mattered to.  The dozens of newborn and parenting books I read during the 40 weeks that I carried her in my body meant nothing.  Nothing applied.

When Lillian was around 6 weeks old we got a phone call from our local pediatrician telling us the news of her diagnosis.  She has Prader-Willi Syndrome.  I'll never forget the sinking feeling in my body.  Everything went numb.  At that moment I felt like I lost her.  I lost the child I had carried for 40 weeks.  The baby that I wanted so desperately to be perfectly healthy.  She was gone.  I felt like I was given someone elses baby to care for.  Like God was saying, no Sarah, this is the baby you get to take care of.  All of those dreams you had of her breastfeeding, baking cookies, going to prom, high school and college graduation, her wedding, grandchildren... you're going to have to let go of them right now.  This is different and you need to start over.  Stop trying to plan the future because it's all changed now.

For weeks it felt like I was walking around with an open wound.  I kept going back and forth in my mind with the situation we found ourselves in.  She seemed so perfect and innocent, but in my mind it was so hard to accept our future.   I felt like the doctors painted her as a monster, and that our future was going to be hell.  But the tiny baby that I was caring for was so sweet.  She hardly cried, and as high maintenance as she was health-wise, she had the most easy going personality.  She was completely reliant on us for her survival and I had to choose to either face the challenges ahead of us or pull the covers over my head and pray for it to all be over.  So we took things one day at a time.  Sometimes it was more like one hour or minute at a time, but we did our best to show her she was loved. 

Weekly physical and occupational therapy started sometime around 8 weeks.  She couldn't lift her head while on her belly and could hardly move her head on her back to track a toy or light.  But man did she have great eye contact.  She would study anyone that came to see her and follow the conversation going on around her.  Week after week we watched her improve.  She has always amazed me with her determination and ability to learn quickly what she "should" be doing.  She tries so hard to train her muscles to do the simple things we all take for granted.  It's still a lot of work, but she's progressing so well. I would guess that at 8 months she's physically doing what a 5 month old should be doing.  She still gets about half of her meals through a G-tube that was surgically placed in her stomach, but we know it will only get easier for her to eat by mouth.  Sometimes I wonder if that's really something to celebrate... but the more muscle tone she gets in her mouth the easier it will be for her to talk - which will also be delayed.  She's getting weekly speech therapy now to help.

Having Lillian in my life no longer feels like a loss.  The love she brings to our lives is greater than anything I've ever experienced or thought I would experience.  The plans we had for her future are now much different than what we originally expected before she was born, but it's all worth it.  It feels so selfish when I think about the "troubles" of adjusting our lives to meet her special needs.  She's the one who has an uphill mountain to climb every day.  She's the one who will have to fight her instincts daily to do what is right for her body.  She's the one who has the troubles of adjusting to our lives.

Every day we work with Lillian to make her life a happy place.  To build her strength and show her love while establishing a routine she can hopefully benefit from for the rest of her life.  Every day we soak her up and all of her joy in experiencing new things while also meeting new obstacles.  Every day we look PWS in the face and say "you are not taking her from us today."  One day she's going to look back and be hungry.  Unless SOMETHING changes.  We NEED to find a cure for the insatiable hunger.  Research NEEDS to happen to find this cure.

Please donate to Foundation for Prader-Willi Research.  No parent should have to fear the future for their child.  No child should have to fear their own lives.

Vanessa and Beth are running this 10K because they believe in Lillian's future and the many other babies, children, and adults with PWS.  They believe that research can find a cure.  They believe that it all starts with one person doing SOMETHING to raise money. 

If you also believe in research and increasing the quality of life for Lillian and others like her, please donate to FPWR. 

Sarah

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