I am not ready.

Tomorrow is graduation day for my second child.  As I visited open houses today for other grads, I became emotional.   As I've been preparing for this day with picture printing, party planning, and gearing up for the week ahead, I find my mind going back.  Like an old school film projector...going back over the years.  All the way back to birth of that amazing young woman we've raised.  And, I'm not ready.

Full of energy, full of will she has pushed me in my parenting skills and just like that I blinked and she's all grown up.

This is also time of pondering the future.  It's bitter sweet in more ways than one.  While I am joyful for the future, it's so hard to let that baby go and fly. No longer under my wings. I'm not ready.

Then my mind looks to the next child who will, before I can catch my breath, be right on her heels and I'll be back here again... not ready.

Then, I look at my Lillian who will always be under my wings and that's just a whole different level of emotions.

I'm not ready...but Rebecca is.  I'll try to let go and continue to put my prayers where my worries are.  In the hands of God.  I'll continue to trust that she is STILL and always under his wings.  So much mightier than mine.

Tomorrow is the end of one journey and the beginning of another, I'm not ready,

our family photos circa 2000. Rebecca just  2 years old.

"sigh"

Feeling so discouraged at the moment...it's so discouraging to me to realize I spend my entire days more days than not trying to correct inappropiate behaviors.  Of course, these issues are a result of sensory problems. but I'm telling you it's DISCOURAGING. I'm constantly, constantly saying two particular phrases all day, almost every day.

It's the same as when I'm "teaching".  Trying to teach her the same things over and over again that she never seems to grasp.  I'm tired.  I'm just tired and feeling sad and discouraged. There are nights when I just feel like I have nothing left...nothing left to give my husband, my kids or even myself.  exhausting.

Day in the life...

Dr Pulmonary gets a visit

Today we had a routime visit with Lillian's pulmonologist.  All went well.  Her sats were slightly better, but still not that magical 100 I was hoping for she kind of bounced around between 93 and 96.  I did ask him if he felt moving her to a year round warm climate would help her at all and his first response was, "are you moving?" My response was that it is not imminent.  That being said,  we've experienced a lot of untimely death recently and all my mind can think about is how can I improve Lillian's quality of life....we are, for the most part, house bound...and I thought a warm climate year round would at least offer the ability to be outside daily more often.  I still think it's a worth while thought.  Health wise, probably wouldn't matter much.  Initially, we would see improvement, but that would not likely continue.  He did recommend a dry heat climate if we actually did move.  Anyway.....I do find if she is off her pulmicort even one day she starts to cough immediately.  She absolutely needs that daily steroid.  It's kind of scary.  OH, OH, OHHHH, the biggest news, she weighed in at.....get ready now....a whopping 41 pounds.  I swear I never thought this tiny girl would break the 30's.  woo to the hoo.  I mean, it doesn't put her on any charts or anything, but hey, I'll take it!

I have been able to increase the rate of her feedings, almost getting her feeds in in about thirty minutes.  Maybe more like 40 but that's a big jump from an hour.

I think that's about it for today.  Kids are about to come home and I need to get on to making dinner.

Here's our doctor's office selfie.

Acceptance doesn't always mean painless

Lillian is doing very well currently.  She is on her month of gentamycin nebs right now and I have continued to keep her on albuterol once a day since her last asthma event.  I give it prior to her pulmicort which helps to open the airways to allow the steroid to go as deep as possible.

We recently had a Chic-fil-a open in a nearby town and it is so much closer than any other CFA around...like all the others were at least an hour away and this new one is about 25-30 minutes.  Well, I had errands to run and I thought I would take the little kids inside and eat.  I don't often do this on my own because it's just a lot to handle.  It's like having twins.  seriously.  two toddlers.  As we walked in Ezekiel just kept right on walking before I could get a hold on him and Lillian just went right on behind him. (mind you it was pouring rain outside and I'm carrying a diaper bag and feeding bag and my purse) I got them gathered up and we waited in line all the while me explaining that we just don't walk away from Mommy.  Anyway, we discovered prior to ordering a friend from church was there as well and we immediately chose to eat together.  As I attempted to wrangle a high chair (which an employee kindly fetched for me) I began to remember why I don't take the kids places alone.  That friend I mentioned, well she was just a God send...and I mean for real a GOD send.  Various issues took place requiring me to leave the table a few times and thanks to her I was able to do so without dragging both kids along.  I kept thinking to myself, as I was feeling frazzled, what would I do if she wasn't there and how much more difficult it would have been.

We did have a good visit and chatted and enjoyed each other's company, but parts of our conversation reminded me of the "abnormalcy" of my family life.  I think, in a different world, we would have sat there, our kids would have gone off to the indoor playground and it would have been different.  We would have planned an outing at another location she mentioned and we would have done that and enjoyed another time of fellowship together. But, that outing is likely never to happen.

 As I drove home, my mind began to ponder on how badly I want Lillian to be able to enjoy the things that her siblings did and what every other child does.  We know, though, through these last years and have learned that those moments are fun, but in the end always detrimental to her health.  Honestly, on the drive to the restaurant I was thinking, I should let Lillian play on the playground...it wouldn't hurt....my heart wants that, but my brain knows better.

I guess what I'm getting at is I accept our life the way it is, yet there is still pain.  There is a yearning for her to have "normal" experiences.  Maybe I can't even explain it unless you experience it yourself. Then I have to fight the urge to not feel so lonely or awkward.  It's craziness I tell you.  Just crazy.  So I pray and accept that that pain may always exist somewhere deep inside and i choose to be grateful that she is still here and thankful for friends that God puts in my path.

A pulmonary update and then some.

Lillian had a routine pulmonary visit today.  Her sats were only 95.  Now I know that isn't a terrible number, but she used to always sat 100. He said anything 93 and below is not good...that's not too far off, know what I mean? She has been in the midst of a significant asthma flare up for the last month and a half, so maybe that's the culprit, but the Momma sure would love to see 100 again.  He also upped her pulmicort and gentamycin for the next two weeks in hopes of knocking down the asthma flare.

We have made a pretty good transition with the move.  The kids are doing well sleeping in their room but the don't sleep through the night and I think that's what may be contributing to Lillian not being too healthy.  Along with the fact that her brother doesn't think she should be sleeping if he is awake.  

Life seems to be settling down, now that holidays have passed and the house is almost totally unpacked.

I have been on the search for a pair of high boots for Lillian because she L.O.V.E. loves the maxi skirts.  I found one pair before her birthday but they were fifty bucks. Luckily, while shopping with Isabelle for her 16th birthday, I came across a cute pair for 20 dollars and Papa's birthday money bought Lillian her boots.

This is a picture of her in the office after her visit with the dr today/

25 Days of Lillian (HAPPY BIRTHDAY LILLIAN) Day 25

Happy Birthday to Lillian.  I hope you've enjoyed these "25 Days of Lillian posts".

I wanted to do a little photo montage of her each year on her birthday, alas, it's taking me way too long to find pictures, which is pitiful considering the digital age we live in.  Anywho...

She enjoyed coming down to her peppa pig decorations.  There were tiny gasps and giggles as she saw each thing. (thanks again friend!)

Tonight we will celebrate by going to Taco Bell as that is what the princess has requested.

It has been made known to me, my sneaky daughters took it upon themselves to plan a birthday party for her on Sunday afternoon and while we are way to busy with other things, we will pause and take the time to gather with a few friends and family to really celebrate her.

Thank you again for the cards and gifts arriving by mail, Lillian has enjoyed that immensely and truth be told, we all have.

I cherish each of my children, but that goes to a whole new level when you face losing one.  We will celebrate and be grateful because you just never know what tomorrow holds.

Happy ninth birthday, my angel.  I love you more than my heart can tell.

25 Days of Lillian ( Day 24)

Hey everybody, thanks for praying, I know you were because I woke up feeling so much more refreshed today.  I've still cried today, but hey, it only lasted a few moments this time :)

ONE MORE DAY!!!  How have almost 9 years come and gone?  It hasn't passed by quickly by any means, but at the same time it doesn't really seem possible.

Today, a sweet friend came by and dropped off supplies for a little party set up for her tomorrow morning....I'm so overwhelmed with grattitude.  While I know Lillian won't really know the difference, I know the difference.

Her life is a miracle and I don't want the day tlo pass without celebration and thanks to Maggie, we will have a special morning with her.

This is not an easy walk and there are hard days, BUT we are BLESSED be-yond measure.

I'm grateful for you friends! I'm grateful for you family! I'm grateful for those who have been there that have never been made known.  Your prayers and generosity mean more than you will ever know.