Saturday, August 20, 2016

New Seasons

Boy, this life of mine just keep shifting and it's a lot to adjust to.  Wednesday, we took daughter number 2 to college.  Matt planned to take thursday and friday off, which turned out to be a very wise decision...more on that later. Anyway, this trip was so much easier then when we took daughter number one.  We had no babies/toddlers with us which meant fewer stops and less drama.  (when we took Bethany, Ezekiel was a baby, hated the car seat, and was breast feeding, did not make for a fun trip) The down side to not having babies, less distraction.  So, I cried a bit on the way there and cried a lot on the way home.  It's that last hug...breaks me.  As I felt her hair blow across my face, I'm wondering how in the world did her life go by so quickly.  My mind is transported to her birth and the last 18 years of her life.  I know, this is how it should be.  I am proud that she is where she is but it does break my tender heart at times.  That being said, I woke up that morning with searing pain in my the time we arrived home not only was I full blown miserable, Matt was also running a fever and aching all over.  These last three days have left us sick, in bed, doing the bare minimum to get through each day.  Today, daughter number one left to head back to school and it is strangely quieter here as we all adjust to less in the house.  It's funny, Lillian and Ezekiel don't seem to notice a difference, but Isabelle and Madeline are missing their sisters.  I pray tomorrow leaves us both feeling much better and that the littles don't get sick/sicker than they are.  Ezekiel has swollen lymph nodes all up his neck and head and Lillian has been coughing and dripping since Monday I think.

Thursday, August 4, 2016

Graduation, Summer, and a New Year....

We got through another graduation, now we just have to get through another college drop off...UGH...not looking forward to that.  Summer seems to have flown by and I didn't do ANY of the things I wanted to do.  I wanted to go do things with my kids...take them on day trips...even just to the beach. With a spouse that works ALL the time and band commitments and teenagers wtih jobs, my great ideas remain just that...ideas. Oh and let's not forget vehicle break downs, financial limitations, OH and this very special girl of's just not easy.

I'm enjoying, as always, all the back to school pictures and it seems SO many of my friends have children going into the same grade Lillian is and the underlying sadness is there.  There is a sadness watching your child fall further and further behind.  I've mentiond it before.  I don't dwell on it..but it is a fact.  Recently, I attended an open house for a family member and she has a daughter that is a little younger than Lillian.  It floored me to see how much of a young lady she has turned into.  While Lillian has grown, thank the Lord, she still very much looks and behaves like a young child.  Seeing my cousin's little girl or rather very grown up girl, hurt my soul in a deep place.

I also had the pleasure of meeting, in person, a friend whose daughter had some similar medical issues as Lillian and it was wonderful to hug her and talk with her and see her little girl.)( her entire family is beautiful as well)  What a sweet personality and precious grin.  She shared some of her journey with blenderized diets and it has spurred me to step out of my fear zone and give it a go.  

In other news, our dog of 12 years died, pretty unexpectedly a couple of weeks ago and it has broken my heart.  She was my dog and she was a part of my every day.  I still see her and hear her and think about her as if she is still here.  Lillian did not seem to realize or be affected that she is gone, however, in my grieving, she wasn't able to see mommy so sad. I truly believe she was grieving for me.  So not only was I feeling heart broken, it was so pitiful to see her weeping for me that I just couldn't do it in front of her.  Strange, because she's seen my cry before.  (because anyone who knows me knows I'm a crier..i know you're all thinking it would be impossible for her to have not seen me cry HA!)

Speaking of dogs, we are going to be looking into a service dog for her, perhaps.  I'm really going to be leaning on the folks who train them to decide if it's something Lillian could really benefit from.  More details to come as I know them.

Of course, you know we conquered, I use that term very loosely, her first dental appointment.  Yay rah, can't wait for next month's.  

Lillian's schooling will not change this year...we have actually schooled all through the summer, so really we have never stopped.  I have been discouraged with her seeming lack of progress, BUT, I brought home some write and wipe boards from the dollar spot at target and I handed it to her and said, go write your name.  She came back a little bit later and, people, she had written her name..NO example, no instructions...she just wrote her name.  I'm telling you, the Lord knows just when to send a big blessing.  The fact that she did that burrowed into my depths and left me feeling light and joyful the rest of the night. Now, she has refused to do it since, but hey...I know it surfaced and it can and will again.  The smallest things, friends...just full of grattitude.

I leave you with this, a few weeks ago I had set aside 500.00 I'd been saving to buy school clothes.  The very day I pulled the money from the bank, our vehicle broke down.  That was almost half the amount I had pulled for the clothes and THEN, I realized I was going to have to pay a sizable portion to the school for Madeline entering into high school band. So you get the picture right?  Bye bye clothes money.    The older girls have jobs and I decided well, i could surely muster enough money to get our new highschooler into a few things Two weeks after all this occurred, I got a phone call from a church member, (who by the way knew nothing of what happened) and said she needed to give me something, could she come over.  I said sure.  Short story, she said the Lord had been telling her to give us 500.00 dollars and she did.  I was overwhelmed and crying, of course, like a crazy person.  

God is good, friends.  I know or feel like a lot of what I post here might come across in negative ways, it's how I vent.  There are times when I feel so alone and isolated and even feel far away from the Lord, even though I know He's with me every moment.  But knowing and feeling are two different things.  SO, I hold on to KNOWING and then He shows me HE is.  He always is.  I just want to be faithful and give honor and glory to him.  So, if you're reaidng sometime my words and wonder how does she do it?  My's not my own.  

Tuesday, August 2, 2016

First dentist appointment

Yes, my daughter is almost 10 and she's never been to the dentist.  Judge's ok,  For those not following along, Lillian has had LOTS of negative stimulus to her mouth, multiple surgeries....not to mention ALL her medical problems, dentist was just not at the top of the priority list. Of course, today, looking back I think not a great decision, but hey I'm doing the best I can.

First off, I really liked the dentist, she was very sweet and really wonderful.  Secondly, she was very accomodating to Lillian's needs.  They are allowing us to come in during winter hours on a day when she doesn't see patients so we can avoid germs. Woo hoo for that.  Today, the ONLY thing she was able to accomplish was to count her teeth and let me tell you, it was stressful.  Screaming bloody murder from the time they called her name back.  PS- you wouldn't believe by looking at Lillian how strong she can be when being held down.  When all was said and done I was left trembling myself.

So, we are going to go back next month and see if they can brush her teeth.  There were no real concerns as far as cavities go and she has some overlapping teeth, but she says not to worry about them.

We're home now, I'm still feeling a little ick...I just hate that she is so terrified and I don't even know what to do to help her get past it.  Bleck.  We go back in september for another visit..

Friday, July 1, 2016

How about an update

Be forewarned, this post is going to perhaps sound complain-y...not my's just the day in an day out life I lead.  Is it frusrtrating? yes. Does it reduce me to tears a lot?  Yes.  Do I still have perspective?  Yes.  Is God still good and in control?  YES YES YES.  So, here I go...

Feeding bag drama: about a year ago our homecare company started sending newly designed feeding bags. Almost right out the gate we found that they were defective.  They leaked...A LOT.  A TON actually, ruining the first mattress Matt and I have bought in our marriage.  (which we saved for and paid for a quality mattress and covered with a very expensive mattress protector) Now, mattress protectors don't cover sides of your bed...which is where the leaking lands as well tas the flooring.  I, of course called the HCC and stated the problem...repeatedly I made these calls until their solution was to send us an entirely different pump and bag system...FYI--- did not fly ( and I won't even tell you what they are telling me now in regards to that decision)  In case you aren't following along, Lillian is on a feeding ALL night.  So constant dripping ALL night and if she moves in her sleep, guess what?  the tubing moves so there's an attempt to catch the mess, but you can only do what you can do.  So basically, the homecare company reports the issue to the manufacturer.  Three months ago they start sending the old bags again.  The ones that do NOT leak.  I'm ecsatic.  Last month we got the defective bags again and her bed gets soaked and nasty. just about did me in.  I called, I cried...I asked politely for some it turns out, the maufacturer stopped making the bags and the homecare company sent what was left in stock.  Home care company blames manufacturer, manufacturer blames HCC, and we are left holding the bag, literally, with two runined mattresses.  No accuntability...and us with NO choices.  Now, we are not independently wealthy....we have a budget we follow and stick to it for the most part...I don't budget for new mattresses and we don't ahve the ability just to run out and replace 1500.00 + in new mattresses.  I'm frustrated.  The manufacturer told me to file a claim with my homeowners insurance...and I should have reported this issue sooner.  I DID!  They took my name and number and I have not heard one word back.  3 weeks ago.  I reported all this to the HCC, they say they will make sure someone contacts us.  We pay thousands of dollars for those bags.  Need I say more and when I said that the HCC rep said "well, insurance pays that" HELLO???  WHo is paying the insurance rates???  US.  There are SO many more details in this story, but you get the gist I hope.

It's a vicious circle in my mind.  Rough things happen, we don't have money to fix them, and a whole circle of self loathing starts in my mind.

We have been *trying* to get new glasses for Lillian since February.  Long story short, multiple trips in to look at frames that have been ordered in, finally pick a pair I'm not happy with that are too big for her in every way. Sit crooked on her face because  the anatomy of her ears is very unlevel and over a houndred dollars later plus what insurance pays this is what I'm left with.  I just don't think it should be that hard people.  And it makes me SAD and frustrated and now sitting here in tears.  Our eye doctor is a fantastic guy...but his office operates so poorly...I just don't think I can keep going there.  We've been there for over 11 years. I'm done in.  Done.

The other girls have had a new dentist here in town and as the appointments drew near I foumd myself dreading it. Like, actually feeling anxiety over going. Couldn't figure out why except I think in general, I'm just tired of doctor's offices and the bad experiences or outcomes we have in them.  The appointments did go fine and noone had cavities..HOORAH!

I have found my legs back on my bike at night which does help alleviate some stress. It's good to have friends to ride with most nights as my own thoughts and prayers generally lead to tears which makes it hard to see while mantra, don't cry and ride. HA!

  Our 16 year old is driving and we just had her "heart interest aka teenage boy" to dinner last night.  I'm just not ready for her to date yet.  Time is slipping through my hands.  Two off to college in the fall, two in highschool...*shaking my head*

Lillian is doing well, although today I see she has a bit of a runny nose.  So pray that doesn't manifest into anything.  She and Ezekiel are bossom buddies for the most part, but some days are me putting out lots of fires.  A friend recently gave us a weighted lap belt to see if that will help with some of her sensory issues and it seems to be helping, thank the Lord and Rachel too for lending it.  Am thinking purchasing a blanket woudl be a benefit but something we will need to save for as they are very expensive.

 I think that about wraps things up for now. ( if you  have managed to stay with this rambling update) Life goes on and we are attempting to enjoy the summer.  Hope you are as well.  Wrap your arms around your babies and hold on a little longer. Be thankful for their excellent health and remember, if today is hard,  tomorrow is a gift and not something we are promised. Be blessed.


Saturday, June 4, 2016

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.

Tuesday, May 17, 2016


Feeling so discouraged at the'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...

Monday, May 9, 2016

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.