Friday, May 18, 2012

Pre-K Graduation 2012

Here's the thing...when your baby starts out in the life without breath in their body, you're never quite sure what you're in for. get to see this....your baby sitting in her prek graduation.
 and you're trying not to cry because
all you can think of is the fact that she made it through all of this....
 and she's happy.  period
and you will find out how much you miss these folks who have been so integral in your baby's life.

It's a wonderful, happy, bittersweet event, because you just never knew what the future would hold. 

Saturday, May 12, 2012


Lillian has just started saying "mom" .  Both "m" sounds, the 'aahh' sound .  For the longest time she signed mom or she has been saying Maaaa for the longest time, short a sound.  Just a few days ago, I actually heard her say "MOM".  It's like her word now to see me and say it over and over again.  It melts me.  Truly.  I can recall the early days of her life worrying that she would not know I was her mom, that I was just another nurse caring for her.  I couldn't cuddle and hold her the way I longed to and she smiled for the first time at Matt.  I cried on his shoulder one night sharing my fear.  At that time it seemed so reasonable, looking back I know better than that, but when you are sleep deprived and starting on this journey your brain takes you bad places.  Her saying 'mom' just makes me think how much words can really affect a person.  I look back on my days as a young mother and there were days, particularly in the car, that all the girls would be babbling away and all I really wanted was for them to just settle down and be quiet for a few minutes.  How much it was driving me crazy not to just have some silence...a year or so after that particular time I began to really regret ever having those thoughts and never ever took the opportunity to try to silence their chatty hearts no matter how crazy I thought I would get.  Today, five plus years of having a little one who works so so hard to speak...and speaks words very seldom, I'm acutely aware of how grateful I am for the words that pour from my childrens' mouths.  Young mothers or even seasoned mothers, enjoy those loud, talkative, inquisitve voices.  Cherish them.  Life is so short and those moments are precious.  You never know what tomorrow holds.  Hide their words in your hearts.
 So many issues have been difficult in this walk with Lillian, but I have to say the nonverbal part is especially hard for me.  I believe there are so many thoughts and words in her mind that just can't find a way out right now.  I try to face the reality that they may not and that's ok. 
Just some thoughts from a Mom who is trying to live and learn and do my best on this 15th year of celebrating  Motherhood.

Monday, May 7, 2012

The Dreaded Case Conference

Well ya'll....I did real good...for ALMOST the whole conference.  I had prayed, I have talked, I have acknowledge things to myself....and I felt confident I was ready to have this meeting.  So, as usual, each discipline (starting with Psych) shared Lillian's IQ, testing, goals, achievements, and further care needed.  She does happen to qualify for the special ed program due to her moderate cognitive delay as a primary reason and speech impairment secondary.  I was doing great until the special ed teacher from the new school she'll be attending started talking.  She was walking me through a "typical" day at school.  She got to recess and lunch and I thought I was going to puke.  All the walls built up in my mind came crashing down.  Recess with multiple classes???  Eating lunch???  (all this in my head, mind you) I felt it was probably better to cry versus puke.  I think all would concur.  So, I did just that.  I started to cry and the ugly cry almost snuck up and bit me.  Of course, everything in the room stops.  The principal from the new school jumped in and kindly asked me to please share what caused my breakdown and just to lay everything out.  I jumped in to all my concerns, her health and safety.  Period.  I told them it was way out of my comfort zone to imagine her on a playground with lots of children.  I don't want to keep her in a bubble, but I know my kid and the needs she has.  Few adults have the grasp of that and other kids...oh my.  Basically, I got myself together in short order and reined in the ugly cry...thankfully.  I just had a moment of sheer panic take over and it passed and we got down to business.  Lillian will attend full days 3 days a week and 2 days half days, those being days she has therapy outside of school.  She will slowly integrate into an art special with her peers after a time of adjustment at school. This is all subject to change as Lillian's abilities dictate how she handles it all.   I will meet with the school nurse to discuss Lillian's health issues in depth and train her on the  feeding pump.  It's funny how you get these plans set up in your mind and then as people discuss issues and needs it becomes clear what decisions need to be made.I opted not to send her to ESY (extended school year) and I hope that is a good choice, if not, well...I guess we can just add that to my MOTY accolades.  Lillian will continue to work with her current therapists in OT and PT at school but we will say good bye to her ST and have someone new stepping.  It's always a little sad for me to change because you go through so much with these folks.  Leaving prek will be hard.  She's been there almost 3 years.  I look forward to her little graduation, but it will be a bittersweet moment.  Lillian's life is moving forward and it's great, but the transitions are not so easy all the time. can it be?

Friday, May 4, 2012

Big shoes to fill

This girl loves shoes.  Just loves them.  She slipped these on and I just had to snap a picture, she was even able to walk a few steps before she took them off. 

She had an interesting week.  I dropped her off for therapy Thursday and just as I arrived at the gym, I was called back because she was kind of hysterical.  Turns out, seems she just wanted me.  She would not tell us anything hurt, just kept saying/signing Mom.  So, I went upstairs with her and we finished therapy.  That whole day seemed a little rough for her. 

Yesterday, her teacher sent home her psych report/test results.  Oh gracious.  Before I began to read, I told myself it would be hard to read.  While I know she is delayed, I know this, it's sometimes hard to read how delayed she is.  As I talk with various people that work with her, they consistently age her around 3 with some skills and 4 in others.  I know they are just numbers...but it's just hard.  Her teacher (and also my fellow warrior mama friend) said to me perhaps they (our girls) are just sometimes tired of all that they must deal with and go through every day and sometimes, crying is the only way to release. I know it all exhausts my Mama heart at times.   How much more exhausting must it be for her. 

Her IEP/case conference for next year is Monday.  My personal goal is to make it through without crying.  I'm glad to have received the report and been able to already know what will be said.  I'm finding peace little by little each day with what is coming.  I KNOW that is just some me not being ready.  I may have said this before, but it is difficult to have watched your child struggle to just live and then have them out of your presence 6-7 hours a day.  Left with people who don't know her "tells" and signs of her distresses.  *deep breaths*  Gonna be a long day Monday.  Instead of shoes, I'm just going to need some super big big girl panties. 

Tuesday, May 1, 2012


I think I share my good stuff here, but just in case, let me share this story.  Monday, I took Lillian in for her therapies.  I was met by both her therapists (a bit odd as usually whoever has her first comes gets her, but since my brain is feeble I can never remember where she goes first...).  After Mrs PT took her away, Mrs. ST stayed and we chat a few moments about her health, and then she says...."did you get the letter from insurance?" Me, "no" According to her, our secondary insurance has cut her speech sessions in half.  No reason, just cut.  It's happening to lots of clients, she tells me.  We seem to be fortunate to only be cut by half.  Of course, our primary insurnace is already exhausted for the year as well.  I ask her if we can appeal and she says she can try.  I don't freak, which quite honestly, is my more frequent reaction.  I get in the car and start, she has so much need in speech therapy, what can they be basing this decision on. I think, I knew this day would come, I just didn't think it would be so soon.   I get to the gym and as I walk on the treadmill I just said a prayer for favor and handed my concern over to God.  Each time my mind would wander back to the subject, I would just close the box.  Nope, I gave it to God and I'm going to leave it there.  I spend my hour and a half in the gym and return to pick her up.  Mrs, ST comes out and says, I spoke to so and so with insurance and it seems I filled out the paperwork wrong.  So they just ammended it and we should have a new approval next week.  Praise the LORD!!  Wow, he took that one down in a hurry!!  I then told her, I just prayed for favor at the gym and we got it!!  Is that awesome or what??