Wednesday, November 25, 2015

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.


Tuesday, November 24, 2015

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.

Monday, November 23, 2015

25 Days of Lillian ( day 23) Things that happen..a day in the life

Well, today has been a bad day in the world of being a special needs mom.  First off, two nights ago in my exhausted stupor, I got up in my sleep and turned off Lillian's feeding. She did not receive over half her volume of nutrition because I for whatever reason turned it off.  Talk about your parent fail.  While I try to let those things go because it happened and I can't do a thing about it, it just feels really, really, bad.

Today, I found myself totally alone.  Noone to call for help...alone and in a pickle.  It was early morning and Ezekiel had been up most of the night wailing complaining of neck pain.  To the point that I was crying because I was becoming scared by what was going on.  At one point, I was sitting in the bed, holding him like a baby while he cried.  At some point Lillian needed attention, breathing treatments, restroom assistance...I was stuck between to babies who both needed me and one of them was going to suffer.  It's not the same when you are dealing with "normal" kids.  A normal 9 year old can help themselves.  Be self sufficient, mine cannot.

I had to make a rush doctor appointment and go in there unshowered and unkempt, because I only had time to get Lillian's needs taken care of in order to be able to care for Ezekiel's.

I can't just run out my door.  I have a feeding that has to be prepared and go.

It's been a bad day for me, as a mom.

Ezekiel needed an xray and looks to have some type of muscle strain.  He's had a rough rough day.

It's been hard day and I'm feeling even more disappointed that I can't do something special for her birthday because we are just too buried in everything else.  Lillian, Ezekiel and I are also try to recoup from sickness.
 bad day, just keepin it real people.

Sunday, November 22, 2015

25 Days of Lillian (day22) Her immunity disorder explained as best as I can

If you previously read my post on Lillian's medical issues, I listed ciliary dyskinesia as her immune disorder.  Basically, the pulmonologist had a suspicion that this was why Lillian was getting ill so frequently and after  biopsies in her nose, sinuses, and lungs it was confirmed.

We have these tiny, tiny hairs in all those cavities that move mucous up and out of our bodies.  That's part of how we stay healthy.  Lillian's happen to be missing and what is present does not function.  This means that all bacteria remains in those areas and her body isn't able to get rid of them.

They have her on respiratory treatments that are the same protocol they use for CF patients.

She gets a nebulized IV antibiotic every other month twice a day.  She has a vest treatment 20  minutes twice a day every day to move junk up to the point where she can cough it out.


Even with all this, Lillian still gets sick.  We have found that minimizing her exposure to large crowds and escpecially groups of kids helps. This actually translates to really not going anywhere much at all..and flu season is even more "bubble time".

I get super stir crazy this time of year and I'm always weighing what I want and even what I need against how it might affect Lillian, because seriously, it's just not worth her getting sick and being hospitalized.

So, there you go...is that clear as mud?  OH- and this is probably  connected to her genetic diagnosis. It's not a primary diagnosis...secondary to her genetics issues more likely.

Saturday, November 21, 2015

25 Days of Lillian ( days 20 and 21)

So, I forgot day 20.  Add it my list of accolades.  I'm sick, the two littles are sick, I haven't slept in over a week and I'm tired.  My stress level is off the charts as we have had SO much happening.  So, yep, I forgot and I didn't even realize i forgot until today.  sorry.

  I have been busy packing today or attempting to do so...packing here, unpacking there...ugh!

I'm just going to share some pics of Lillian opening today's cards.  She is thoroughly enjoying this and especially likes the singing cards.  Thank you to each and every person who is taking the time to send a card and all the love!!







Thursday, November 19, 2015

25 Days of Lillian (day 19) Painting pumpkins

Thank goodness for big sisters who buy pumpkins and paint....a happy day!

Wednesday, November 18, 2015

25 Days of Lillian (day18) A little more medical info

Tube Feedings.  Yeah, let's talk about it. Many people do not realize that Lillian is (for whatever reason) unable or chooses not to swallow most all foods.  She gets three tube feedings through the day and she is on a drip that runs continuously all night.  She has what is called a mic-key button that inflates a balloon inside her stomach, which holds it in place. We have a feeding bag that runs into a feeding pump and feeding tube that attaches to the button and voila...she gets fed.  She does drink pretty good, but not lots of anything and always something with carbonation.  I think it has to do with the way she feels it in her mouth.

We have to carry a replacement button, special syringe, extra bag, ky jelly,  and extension tubings at all times, because yes, her tube gets ripped out of her gut and it is generally very unpleasant for her.  We also have to change it about every other month or when it starts leaking and won't stay inflated. It's not a difficult process except when she is upset she is tense which makes it hard to get the tube reinserted.  

I don't think I ever thought she'd still be tube fed by the age of nine.  Keeping her healthy and just trying to keep food in her gut always took precedence because she had such terrible feeding intolerance.

She's on a metabolic formula and her feeding supplies cost close to three thousand dollars per month. Praise God for insurance.

I'm currently looking into real food tube feedings, I think it would be so much better for her to be getting real food and not a formula based diet.  I think it would help with her bowel problems as well.
When we do eat, we always make her a plate, but she tends to chew up and spit out anything she puts in her mouth.

She chokes quite often on most solids she chews even though she chews it up very thoroughly.

I'm grateful we have the ability to still provide her nutrition thru feedings, but there is a flip side to it as well.  The pumps can be very touchy and tubing gets kinked and ports get popped open...all of which causes mess and stress.  My alarm every morning for the last eight years is the howling beep of a feeding pump signaling it's finished.  It can, on some days, be my total undoing.  Just being honest.  I mean I never really thought we'd still be here and I'd still be mixing formula every single day at age 9.

A sweet friend once reminded me that I also thought she'd never be potty trained. So, when I'm discouraged or when the pump is driving me IN.SANE.  I remember her words.

It sounds strange, but I still get an extreme sense of amazed wonder and gratitude when Ezekiel eats.  AND, just to tell you how crazy I am, I've actually chased him around several times, trying to hook him up to HER feeding.....oh mercy, what a journey.

Tuesday, November 17, 2015

25 Days of Lillian (day 17) Just a little photo and update

Lillian is certainly enjoying receiving cards.  I think she's gotten 5 so far and I'm letting her open them as they come.  She has even received some little gifts along with the cards.  Thank you to those that are taking the time to do such a small gesture for my little sweetie! Because we are in the midst of moving and have had some serious and big occasions happening, this post will be pretty much this little blurb and her picture.  Please continue to hold us in prayer...a couple of the older girls are really having a hard time.



Monday, November 16, 2015

25 Days of Lillian ( day 16) A tribute

You might find it strange that I would choose to write a tribute to my mother in law in 25 Days of Lillian.  However, once you read, you will understand how it is very fitting for her blog.

I have been with my husband for 23 years.  We are coming up on 21 years of marriage.  Thursday evening, we lost his mother.  Loving, devoted wife to Matt's dad for over 50 years until his death and then married again a man she called her best friend. He passed away a little less than two years ago.  She was the mother of six children, Three boys, three girls.  Grandmother to many, many more children.  Ruth and I had an interesting relationship.  I believe she loved me.  I certainly loved her. She had very strong opinions and she was never afraid of telling you what she thought. Which, to be honest was sometimes offensive to me.  lol.  I think everyone in the family could attest to that. For example, about 6-8 months ago as she was trying to regain her strength, she asked me to trade her bodies.  I said I would if I could, but she then she added, my body but less fat...  HA!!  We had a good laugh about it.  That was her.   We didn't always see eye to eye and I'm pretty sure she worried that I might never be able to raise the brood we were quickly adding to our quiver.

  We had our struggles.  We even had some periods of estrangement.  These last couple years had found me reclaiming my relationship with her.  She told me on multiple occasions how proud she was of Matt and me and also how sorry she was for past problems.

  The one area we didn't always agree, but definitely were able to share was our faith.  I had the privelege of holding her hands while bowed at her feet crying out to God for healing, whether it was physical or emotional.  She and I could always meet at the feet of the Father.

Upon her death, it had only been made known to three of us, that she wanted to be creamated.  Her sole purpse?  To offer her burial plot to us in case we would need it for Lillian.  The fullness of that decision is just overwhelming me.  I can't even put it into words.  So, in the event that my sweet angel is called home, she will rest beside her papaw and mamaw. . I tell you, Friday night while I lay crying in bed, her voice..her once strong clear voice whispered in my ear, don't cry for me...don't cry for me.  Just like in the same way I hear from the Lord...I heard her.

While I can rejoice that she is no longer suffering physical pain and she is reunited with Alec, and dancing and praising at the feet of Jesus, my heart is grieving what seems like a life gone too soon.

To my husband, my grieving children, brothers and sisters and all extended family gifted to me these last 23 years, I love you all, thank you for loving me into the family all this time. Michelle

Friday, November 13, 2015

25 Days of Lillian (day 13) a time to grieve

I've sat down to write several times today, but my heart is overwhelmed with sadness.  Matt's mother passed away suddenly yesterday evening.  

I've tried to explain it to Lillian a little, but somehow I think she kind of already knows.  I'm not sure how she will handle the funeral as this will be the first time she's really experienced someone she knows dying.  

While I know Ruth is in peace in heaven, I'm fully overwhelmed with grief.  Keep us, our children, especially our kids, and our entire family in your prayers as we walk through the next few difficult days.  

This is my favorite picture I have of her and the only tangible memory our son will have. 

Thursday, November 12, 2015

25 Days of Lillian (day 12) A helper

Lillian enjoys getting into whatever we are doing and helping. We have had trees blow down and she has helped carry limbs.  She just gets right into helping as much as her body will allow.  She enjoys doing housework, emptying the dishwasher, dusting, cleaning glass.  She also does all these things with a smile. (An attitude I need to adopt from time to time)

In the move, we are working hard, scraping wall paper, painting, and other such things.  She spent a really good portion of the night scraping down wall paper in her sister's room. Madeline took a picture of her work and brought it down to show us and Lillian was absolutely ecstatic. She immediately wanted to run back up stairs and keep working.  What a trooper!

 She has attempted painting walls, but that was a short endeavor as she got a little carried away.  ( we kinda had to stop her lest we had blue paint all over windows and trim)

Now, picking up toys is a slightly different story, but she does help with that occasionally. 

We sure our blessed by our sweet little helper!



Wednesday, November 11, 2015

25 Days of Lillian (day 11) She celebrates EVERY thing

Lillian gets very excited about things you wouldn't expect.  When she watches Team Umizoomi and she gets an answer right, she cheers.  I mean, cheers, she yells, throws her arm in the air and whoever is around must be available for a high five.  ( i cheer too when she gets educational stuff right!)

 Buy her some mini pepperonis in the store and there is a celebration in the aisle that draws attention.

She gets excited when we talk about going to Grandma's houses.  She starts cheering when we get close to their homes because she recognizes that we are almost there.(it's always amazed us that she recognized landmarks at such an early age)

Her sheer joy is infectious. Not just to me or our family.  For some reason, I don't know why, she absolutely loves Menards and Home Depot.  Strange, I know.  We were going into Home Depot the other day and she was just giggling with excitement...it was just bursting forth from her tiny body.  There was a greeter at the door and he was smiling from ear to ear.  He handed them suckers and he looked at me, with the biggest grin and said, "boy, I've never seen someone so happy to be at home depot..." and then he said, "a kid, I've never seen a small child be so happy to be here".   Just looking at his face hugged my heart.  My daughter poured her joy out on him and you could tell it changed his day.  I told him I didn't know exactly why she loved it..but she does.  When she sees the Menards building from the parking lot she goes berserk cheering with excitment.  ( now the challenges we face in the store can cause the total opposite affect.  Heaven forbid we run into a fork lift moving something,because then she's freaking out.  the loud beeping and all...)

She is absolutely full of love and joy and I daresay everyone that gets to know her falls in love with her.  How could they not?Listen, you can't be around her tiny, little self and not have some of that rub off on you.  AND, as her mother, when I see someone take time to sit and play with her and enjoy her, it fills me with love and joy too.





Tuesday, November 10, 2015

25 Days of Lillian (day 10) the future

 This is a difficult post to write. (This is your kleenex warning)

The Bible tells us not to worry about tomorrow because God is already there.  So I'm not talking about worry.  I'm talking about planning.  Planning for a future.  When I consider Lillian's future, I'm fairly certain she will always be with us.  She will not grow up, go to college or likely even be able to hold down a job.  That is a future I see.  I also wonder what will happen if there's a day when I or her Dad will not be here or able to care for her. No parent wants to out live their children. As I consider all of this,the lump in my throat is causing me pain because who can love her as much as I do????

I hope, that her siblings and the spouses they choose will have a heart to take over Lillian's care if ever the need arises. I also pray that they will not be bitter in making the choice to care for her.  I don't know if it's fair to expect them to assume the resposibility.  Seriously, there are days when I feel very bogged down by the weight of the day to day, but I'm so grateful for the ability to continue to do so.  She's my child and there's nothing I wouldn't do for her.  Will a sibling feel the same?


Give Me Breath

As long as she is living, give me breath
As long as she is living, give me strength
As long as she is living give me health
As long as she is living, give me grace
As long as she is living, give me hope
As long as she is living, give me peace
As long as she is living, give me endureance
As long as she is living, help me to breathe
As long as she is living, let me give care
Lord, as long as you give her life...
Give me breath


Monday, November 9, 2015

25 Days of Lillian (day 9) Good Morning Friends

Day nine!  Only16 more days unitl this little girl turns 9...hard to believe.  I really, really, really wanted to have a birthday party for her this year and invite a few "friends". However, being in the midst of a move is not ideal for partying. My baby doesn't really have "friends".  She has siblings that she adores, but friends are another story.  Younger kids don't "get" her and kids her age, her peers, for 99% of them they pretty much ignore her.

It nearly brings me to tears when I see a child her age actually try to engage with her.  We have one family friend, Karly, that actually plays with Lillian.  She pays attention to her...she engages with her and it is absolutely overwhelming for me to watch.  One of my nephews also takes a bit of a shine to Lillian and tries to play with her from time to time as well.  I try to tell their Mom's how special they are because their hearts see something that other kids don't.  That's how we are though, right, all different with differing gifts. For me...as a mom, they are not seeing a disabled, delayed little girl, they just see a friend. Oh geez...how did this turn into a crying post...??? sheesh...

Example: We have a neighbor girl that is five or six.  She wants to come over every time we are outside.  When she does come over, she plays with Lillian a little, but soon is just wanting to hang with the older girls.  Lillian just doesn't have the stamina to keep up with playing physical games very long.  Then, before I know it, Lillian is sitting alone, watching the little girl play around our yard.  It's hard to describe... yes, even though Lillian is delayed, she's not completely on the level of younger children, just as she's not on the complete level of her peers. She recognizes that younger kids are younger than her.

It's kind of one of those things that break my heart, but really it's not something I focus on because it's just not that important in the grand scheme of things.  Just one of those "normalcies" that causes me a slight twinge of pain occasionally.

Anyhoo, perhaps we will party just to party when warmer weather arrives and try out a "friend" party and see how it goes.

So, since no party will happen and we will likely be celebrating together as a family, how about a card shower for Lillian?  She loves to get mail and you'd be surprised how much she loves to carry around magazines and cards and things?   If you'd like to send her a card, please email me and I'll send you our address qltlvr5@comcast.net.  Note; If you are a crazyinternetstalkergoingtotrackusdownwherewelive kinda person...please don't ask.  HA!

I leave you with a morning selfie...

Sunday, November 8, 2015

25 Days of Lillian (Day 8) A new home

We have been in prayer for well over a year in regards to finding a home for our family.  One that will suit Lillian's needs well.  We have found a place and we are working evenings over there trying to prepare for moving in.

So what do you do when the house is empty, everyone is working inside,and there is wet paint?  You go outside and "race" your little brother in your soon to be yard!

FYI- Running is not something Lillian is able to do a lot, but we were told she would need assistance to even walk unitl she was 8 or 9 years old.  It never gets old seeing her run.

PS- Q&;A time...if anyone has specific questions they'd like me to answer in a blog, post post them in a comment on my facebook post  and I'll make a post answering them. Apparently, people aren't able to comment here even though it's open posting.
video
Bj

Saturday, November 7, 2015

25 Days of Lillian (Day7) How her life changed mine

How can I even put into words how I've changed?  I hope this doesn't come across in the wrong way.  I have joy.  I have happiness.  My faith is where these things are found.  BUT, a small piece of me is changed and will never be the same.  There is a seriousness about me that did not exist before and the  care free-ness that I once felt no longer exists.  

I have melt downs over feeding bags, missed appointments, and wet beds.  Things that really don't matter, but I think sometimes the heaviness of the load I carry comes out in those "little" things.  

I'm constantly praying to remain unjaded.  I have to remember that because I've dealt with more than the norm, that others struggle with the norm.  My compassion gets skewed sometimes.

Well meaning people with their well meaning thoughts, who don't have a clue what our life is like, give them grace  They just don't know..they don't live it.

Grace...giving people grace. I feel isolated.  A lot.  I've felt and been let down by friends and family. Give them grace and let go of the bitterness.  

I've learned to humbly accept the kindess and generosity of strangers, friends, and family and be incredibly grateful.

Confrontation has never been my strong suit, but living a life of fighting for so much for my child has made me fierce.  

I've learned that waiting grows patience. I've done a lot of waiting, friends...lots and lots of waiting.  Uncountable hours. Doesn't even bother my anymore...except sometimes in the drive thru. :)

Harsh as it may sound, it's true that my life is my life and people that I come to have to depend on are just doing a job.  There doesn't seem to be a whole lot of excellence in service anymore or even common courtesy. Professionals and nonprofessionals alike. This is something I experience almost daily.  I believe many other SN mothers could agree with me on this point.

I know as mothers we all have those moments where we feel like the day was a fail.  I experience that exponentially more when something happens with Lillian that could be prevented.

  I struggle with feeling the need for the everyday people in my life to understand, to truly understand.  Does that make sense?  There are several people I've only met through reading their blogs and I feel so close to them becuase I know they get it.  I think I have one IRL person that when I talk to her, I know she gets it.  Our tears speak in harmony.  

I have learned to never take anything for granted.  I can marvel and find joy in the smallest of things. 
I have found depth in the my walk with God that continually grows.  I see how he uses all these things to hopefully make me a better person.  More loving, more giving, more forgiving.   

I've learned that sometimes my life must be lived one moment at a time.  Minute by minute, hour by hour.  And that is ok.  Laundry will get done, floors will get mopped, dishes will be washed...eventually.  (not to say not getting those things done doesn't drive me crazy at times I'm just sometimes totally and completely overwhelmed)

I could likely go on and on.  So instead, I 'll share this picture, because I love her expression.  True essence of Lillian : JOY

Friday, November 6, 2015

25 Days of Lillian ( day 6) A little bit of her "medical" picture

CLD Chronic Lung Disease
CHD Congenital Heart Defect
PDA Hole in the heart
VSD hole in the heart
PFO hole in the heart
Coarc of the aorta
Trisomy 2p
Terminal deletion 4q - chromosome anomalies, that are entertwined
VUR vesicoureteral reflux (reflux in kidneys)
GERD (stomach reflux)
BPP brachial plexus palsy
CD ciliary dyskinesia
FTT failure to thrive
Feeding intolerance
asthma
PE tubes
T tubes
DD developemental delay
hydronephrosis (fluid around kidneys)
pulmonary hypertension (high blood pressure in the lungs)
cleft palate
thinning white matter in the brain
hypotonic (low tone)
seizure
blood transfusions
constipation/diarrhea
sensory issues

This is a list of most of the things Lillian is or has been diagnosed with.  Some of them are resolved, but most of them are what we deal with in her life. You know when you take your child for their well child visits and that giant list of things you get to say no to?   I get to mark yes on most all of them.

Surgeries

Trach
heart
PEG tube
multiple sets of ear tubes
multiple bronchoscopies..too many to give you a number
adenoids removed
chest tubes
3 ostomy closures
cleft palate repair
2nd palate surgery
She has been in surgery so many times I don't keep track of the number. I never have any type of comfort level when leaving my child in the hands of a surgeon. All I can do is pray.

Hopsitalized
Twice for pneumonia, once including pleural effusion and requiring a chest tube
4 times for severe respiratory viruses plus add in some strep pneumo and cdiff
mulitple times after operations

Procedures outside of surgery...tests upon tests, CT's, MRI's, XRAYS, ultrasounds, echos, ekgs, PFTS, again, things I can't even list because they are too numerous.

I've met more than my fair share of doctors.


Thursday, November 5, 2015

25 Days of Lillian (day 5) A day in the life

I thought I might share what a typical day in the life for Lillian is. (Note, this ditl changes dramatically if she is sick...)

Her feeding pump goes off  some time between 4 and 6 am. If I wake up right away, the chances are it doesn't disturb her.

She wakes up between 7 and 8 crying for me because she's afraid. She is strapped to her feeding bag which is plugged in so she can't get to me.  (note, when we move we will be in a home with our bedrooms on the main floor! woohoo)

She gets an albuterol nebulized, pulmicort, nebulized, and IV antibitotic nebulized.

Come down stairs, potty again in prep for the vest machine.  To which she's terrified if I'm not sitting right beside her.  So 20 minutes later....that event is over.

She plays for a bit while I prep her formula and new feeding bag.  By 11 she's hooked up to the feeding bag for 40 minutes (i've gotten her down from an hour just recently) She get's tube feedings at 11, 3, and 7, then on a night drip for the entire night.

She mostly spends the day playing with her kitchen, a little bit with the mini ipad and some educcation sprinkled through out the day.  I attempt trying to get her to eat at each meal.  We try to build in therapy type activites throughout the day as well.

If the weather is nice, we spend a little time outside where she is likely to be found in her playhouse daddy built for her.

By 5pm we are back to the vest for 20 minutes.

By 9 she's headed back up to bed for breathing treatment and sleep comes eventually.

 Due to her medical fragility and immunity disorder she can't spend time around other kids.  She can't attend school or be in groups with other kids because she ALWAYS gets sick when we do it.  We stay away from playgrounds due to her low tone and small stature.  She's not able to keep herself from getting knocked around or off of play ground equipment. Our home is Lillian's refuge and this is what a day in her life looks like.


Wednesday, November 4, 2015

25 Days of Lillian (day 4) This girl loves....

Lillian has a few things that she really really really loves.  (me of course...LOL) Seriously, though, I thought I'd share a few of her favorite things.

1. This girl loves her toy kitchen.  If I had my way,  I'd have her a whole organized play center with a bigger toy oven and cabinets...like a play center.  She LOVES to "cook" and organize her foods and dishes. She even loves watching cooking shows, her favorite is Pioneer Woman.  It cracks me up that she will watch her from start to finish.

2.  She LOVES wearing dresses and skirts.  It is so difficult to find things that fit her well in that arena...but we recently found some tiny maxi skirts at Target and she LOVES them.  we got 4/5 and they still fall off her waist, but she adores them.  She loves shoes and would love to wear heels. She told me the other day she liked some business woman's high heels...what a hoot.

3.  She loves babies.  She doesn't play with babies a ton, but she loves to interact with  younger kiddos, especially babies.

4. Mountain dew addict.  Go ahead and judge me.  It's ok

5. She's obsessed with bags and purses, she probably gets that from me. :)

6. Her siblings.  That's a given.  She loves them whole heartedly and it is precious. Her little brother might now be her fave...they are best friends and arch enemies at times too.

Here she is in one of her beloved skirts.  Look at that smile.

Tuesday, November 3, 2015

25 Days of Lillian (day 3)

This girl...she's so funny...and sweet...and loving.  Many times I share the difficulties of her being delayed or not age appropriate.  It doesn't strike me so much until I'm around a child her age and the delay is very profound. BUT...let me share a more age appropriate story with you...

I needed a few, specific items from Walmart and I thought I could manage to run in and grab them with the two of them.  (the littles I call them).  As soon as we got in the store, she "nee foo".  Which means she wants to look at the toy food.  So, I think, a quick trip through the toys and I can get what I need after and everyone is happy.  Note, we do not buy toy food at walmart as it is pretty junky.  She knows that, we go through it every time we go.  She looks at everything and I decide it is time to move on.  We get back to the craft section and she slouches her shoulders and starts telling me "I boor" translation, "I"m bored".  Followed by, "thi booin" translation "this is boring".  SO, through the rest of the store, all I hear is big sighs followed by "i boor" and "thi booin"

All I could think was, well this is great followed by wow, this is so age appropriate.  That in turn allows me to not be annoyed and slightly entertained.

Side note to this story, what wasn't so entertaining...her little brother had gotten spooked in the store and between her "bein boor" he was crying pitifully and saying "i rea-eee" "no" "no" "no" " i rea--eey"

Did not get all my specified items in walmart that day.  Just sayin'.

And this is what I get when she is making cute poses and I ask her to take a picture...not cute poses.. But oh so age appropriate I'm thinking...


Monday, November 2, 2015

25 Days of Lillian (Day 2) When they tell you she will die

So many decisions had to made about Lillian's care.  Prior to her trach surgery, I asked the team if that was the only option.  I don't think I'll forget his response, he said, " well, yes, the other option is to do nothing...as in let her go".  Some of those days haunt me.  As I think about the amount she has suffered physically and what she's been subjected to, I use to beat myself up wondering if I had selfishly chosen a life of struggle for her.  We were told she would die by age one or two.  That first year, I was in total survival mode, Matt was working long, long hours, I was up around the clock taking care of her, and I really don't know how I managed to get my then small children fed and out the door to school.  I don't remember a lot about that first year.  It makes me sad.  Madeline was only four and I remember so little.  I literally did not get any sleep.    Her first return visit to the hospital she was in severe respiratory distress, I was scared.  That happened two months before her first birthday.
 When they told us she would be mentally retarded and die, all I kept thinking about was, what have we done to our kids?  what will we tell the kids?  how can we prepare our kids?

Oddly, it seems like it  gets harder for me each time she gets sick.  It's difficult, when in the back of my mind I wonder if this sickness will be "it".  How much can a tiny body take and still keep going?

This little girl, though?  She gets weak, she gets very weak, but she bounces back.  It takes her a while, but she does.

I wonder when I hear about people who lose their babies, their normal, healthy babies, why??  Why has our daughter been spared and theirs have not and I have guilt.  Which is CUH-RAY-ZAY.

I mourn deeply for people who lose their children, their special babies.  Their sick babies.
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People, in their need to comfort you, tell you, "none of us is guaranteed tomorrow".  Let me just set you straight from my perspecive...that DON"T help. period.

I love all my children the same, but I have fought like nothing I can describe for my Lillian.  Because that's why what you do when they tell you she will die. You fight, you love, you cry, repeat repeat repeat. infinity. That's me anyway.

Sunday, November 1, 2015

25 Days of Lillian, Day 1, (the FIRST 25 days)

As Lillian approaches her birthday, I thought it would be fun to share her life with you.  I know I do that in bits and pieces and much of her life's battles are documented in this blog, but - for those that may just be stopping by or haven't had the time to read almost nine years of life maybe I can do some brief overviewing.

The day before she was born, we celebrated Thanksgiving with Matt's sister Rita.  She, along with her daughter, had made dinner for us.  We had recently lost our home, I was on bedrest, and we had moved into a new place.  The next morning I was going to the hospital to have some procedures done.  All of that threw me into labor, and she was born in the evening on the 25th of November. Most people know, once somewhat stable, she was whisked away to the Children's hospital.  In that early morning, I a wakened in a hospital room, alone, no husband, no baby.  Emptiness crushed my chest.  The nurse happened in the room and asked about my tears, she placed the phone in my bed and dialed the NICU number for me.  I think.

Within 25 days, our daughter, our Lillian went through more in her life than most people face in a lifetime.

She had to be on a ventilator just to continue to live for the first two months of her life.  Pulmonary hypertension was making her very sick.  Multiple defects kept emerging in major organs, aside from breathing being a major issue.

On Dec 5th, we were given a "plan of action"  the team had made their findings and were giving us the sit down.  Trach, heart surgery, chromosome anomalies, mental retardation, death.

On December 8th,  a tracheostomy was performed.  10 days later, her ribs were spread to remove a portion of her aorta and to close a whole in her heart.

My life stopped.  Everything I knew as a parent went out the window.  All I can tell you, is I faced on day at a time.  Crying my eyes out each night, alone,  in prayer.

Welcome.  This is just the beginning.

Wednesday, October 14, 2015

Suffering

As I had my quiet time today with the Lord, I was reading in Psalms, and I read verses about God hearing and helping his people who call out to them.  I thought of a particular friend that I thought might be encouraged and I shared those scriptures with her.  As my day continued, I happened upon an article about a couple who were struggling with infertility, and I have obviously not struggled with that, however, some of the feelings she wrote about began to work on me.  She talked about how she felt God had left her at times and wasn't there when she was so desperate to conceive.  I began to cry a little, ( her article was very emotional)

It got me to thinking about suffering.  About why people struggle with certain things. I realize suffering is a part of life.  Some suffer more and some suffer less.  This then led me to thinking of my sweet Lillian.  How much I've prayed for healing, yet tried to be content with her having life today.
We were told she would not live this long.  We were the ones who decided we would continue life saving measures for her although we could have made the opposite choice.  I began to wonder if I truly had faith that God would heal her.  I believe that he can. But have my prayers been faithless words?

I don't know.

Then a pain welled out of my chest as I wept and prayed for the suffering of my child.  I've yet to experience a greater pain.   I prayed for her to be covered in protection for the illnesses that will come.  Because they will come.  We've been living them these past nine years.  Oh, how I LONG for my daughter to be healthy.  To speak.  To learn.  To EAT.  TO be HEALTHY above all.  I know, I KNOW there are children that suffer so much more, I know there are people who lose their children.  It breaks my heart.  I've been unable to clear the lump in my throat most of the day.

The pain that I buried unleashed in my physical body today and I'm still aching from it. I didn't realize I had that much pain still buried.  I feel like I'm bleeding today. Literally.  This whole experience is difficult even to put into words.

So, those words that I shared with my friend, those scriptures I quoted her, I keep telling myself.  I'm clinging to them.  Are you hurting too?  I get it.  I do.  So I'll share these words and may the be healing to your pain.

Psalms 34:17-20 NLT
"The Lord hears his people when they call to him for help.  He rescues them from all their troubles The Lord is close to the brokenhearted; He rescues those whose spirits are crushed. The righteous person faces many troubles, but the Lord comes to the rescue each time., For the Lord protects teh bones fo the righteous;not one of them is broken."

Thursday, October 1, 2015

Dirty Toilets and grattitude

Sorry it's been so long, you know life just happens and my laptop is busy doing homework and other such things...I'm sure there are so many people waiting with anticipation for my next blog post...anyway. Today a sweet Momma that I met in the NICU posted about her little girl with Spina bifida and how she prayed for poop.  She wondered if anyone prayed for poop as much as she did.  I giggled a little bit, but Lillian struggles with this very same issue.  She deals with constipation, diarrhea, and bloating.  All which majorly affects her feeds and well, everything.  This topic led me to thinking about how frustrated I get because my toilet is dirty ALL. THE. TIME.  in a very weird place because of the constant "pooping" issue.( Because we have to give medication to keep poop flowing and there is just no happy medium with that med. ) I scrub and I scrub but to no avail, toilet is always dirty.  As I sit there, bent over, steam rolling out my ears because I'm cleaning the toilet for the billionth ( spelling, is that even a word?) time, I find myself chided.  My inner voice says HEY! that dirty toilet is a constant sign of answered prayer and then I'm in tears as I'm so so grateful that my daughter was able to achieve potty training.  She was almost 8 years old, but she did it.  And for all that scrubbing...well....I could be changing her dirty diapers.  (although I'm still doing that too, but on my son...tee hee)

That, my friends, is how you find grattitude in a dirty toilet.

Monday, August 17, 2015

Dr Lungs Checks in

Hello Friends!  Today Lillian had an IOS test at the hospital and then we went over to the dr and had her appointment and got the results.  This test is some sort of pulmonary function test that is done on kids who are typically much younger I think.  Anyway, last night I started to get that dreaded feeling of getting a test result that may be bad news.  This morning,  I began to pray for a good report.

She did the test with minimal upset.  There were still tears and anxiety, but once she realized it wasn't terrible she seemed ok.  She didn't perform it totally correctly, but you get what you get.

Since there were NO places in walking distance to go eat so we ate in this tiny little cafe in the medical office building while we burned time for her appointment. ( I didn't want to leave the garage because the hospital validated my parking.

His first words were "it's not as bad as I thought it would be considering what we've been through, I thought it would be a lot worse" (I found it a tad funny that he said we) One test was mildly out of range and the other was way below out of range.  He said the below one was likely due to the way she performed during the test which was supposed to be normal breathing, but she just couldn't understand that concept.  He said the tests were indicative of her diagnoses, lung disease, asthma...etc...her tests were improved after administration of albuterol.  (a breathing treament) He said this test didn't really give them a picture of lung capacity though.

He want us to start her on benadryl a couple times of day to help with her drainage.  Her allergy testing was negative but he believes she still is having reaction to environmental elements.

Then,.well, then...I had to tell him about the sleep apnea spells I've been witnessing and his countenance changed immensely.  He went from relaxed, happy face, to stern, solemn, serious face.  So I am supposed to start a journal of episodes that I witness.  He said we may need to do another sleep study soon.  I told him I was afraid of finding out where all that might lead.  Scary.

We go back in January.  Now we just need to stay healthy.

On another note, if you visit her blog here from your phone (and that's the only way you've ever looked at) just want you to know if you view the web version I have other content on the blog that I've written.

Thanks for your prayers!


Wednesday, June 17, 2015

Back to school blues

Many of my friends have been posting pictures on facebook of their children heading back to school.  I love seeing the kids.  Watching them grow and move forward.....

But sadness follows immediately and pain squeezes my heart.

My friends, friends I've had since childhood...posting pictures of their second grade kids.  The grade my Lillian is technically in.   I see them and I'm happy...but each time I think of it I reflect on my little angel who is so very far from her peers...and I just feel sad.  Sad to see the milestones that continue to get farther and farther away from her.  Falling farther and farther apart from her "peers".

I told Matt tonight I didn't understand why it made me so sad.  I had to hold back my tears.  There is just heartbreak I can't explain.

Everyone...most everyone...looks at Lillian and usually the response is "oh I think she's just doing great".  Well, she is doing great.  BUT... can you understand the pain of watching her grunt to nonexistent people playing in her own little world where I can't understand a thing that's happening.  The daily frustration I feel when she's desperately trying to tell me things in grunts that I never know what she's saying and she just gives up.....or when she gets sad and I have no idea why because she can't communicate it to me.

I'm thrilled that she is relatively healthy right now.

She's full full full of love and she is happy most of the time.  Thankfully.

But there are daily reminders of things that will never be for her.  That's our reality.  And right now, it just makes me sad.

 Tomorrow's a new day.
Written in august 2014

How a bathing suit brought me to tears

So, you heard someone weeping in the dressing rooms?  That could've been me.  You thought to yourself, well, gosh I know bathing suits are not my favorite thing to try on either...but crying???

You see, I was in there with my 8 year old daughter.  She's only 35 pounds or so.  Since her body doesn't grow in the way that it should, her body just doesn't fit into clothing properly.  Of course, seeing her undressed always tugs at my heart, as I can see almost every bone protruding through her skin.  It causes me to wonder what keeps her from having broken bones every time she falls? Anyway, as I put one bathing suit on her and it was too big, I moved on to the next which was too small.  No matter the size, nothing seemed to fit on her.  One pieces, bikinis, tankinis...it was just becoming crazy. We tried EVERY single style of suit they had on the rack  I felt the tears coming on.  I tried to hold them back...as I hollered out to my husband, "I don't know what we're going to do...nothing fits her"

And then, a moment of clarity...well, maybe I can buy two sizes of the same two piece suit.  Of course, the most expensive one is the only one that semi- worked.  The bottoms were fours, but they still gape around her tiny thighs.

Clothes have always been an issue for our Lillian, but for some reason, the bathing suit drama just got the best of me.

So, half an hour later, two swim suits in hand, roughly thirty dollars poorer...(LOL) we left with a semi-fitted bathing suit.

And that's how a bathing suit brought me to tears.   Things are not always as they seem.

Monday, June 15, 2015

Did you know?

There are easier, kinder ways to let people know you miss them.  (let me just say I'm sure I've been guilty of this very thing, but it's been so long I can scarce remember)  I've written of my experiences recently of missing church on Sundays.  ***Listen, I know this life is not all about me and my little world...I get that...but this little blog here is a place for me to release things from my mind or maybe touch someone else on a similar path...or enlighten people who may be in the dark***

We, as a family, have been living through some very difficult situations in the last seven months.  All of it revolving around the health of a few of our kids.  It has been HARD.  I have landed in pits and struggled with my parenting.  I have never stopped praying or seeking God in all of these days.  While there may be some who view my lack of attendance at church as that...it is not.  I have been told as much.  Me and Jesus have talked about it.  I have struggled will feeling offended by my friends and church family. Every time, I realize, it's about Him.  It doesn't matter what other people think or say.

Did you know that your exaggerated, surprise appearance to my walking in the church was funny once, but after the third time it was difficult for me not to feel shamed.  Did you know when you "re-introduced"yourself to me for the third time, it ceased to feel like a joke.  Did you know when you asked me about my "annual church visit" for the second time I had trouble keeping a smile on my face and feeling loved?

Did you know that morning was only the second time this year I've gotten my husband to come to church.  Did you know we were late because we couldn't get our child's feeding pump working properly and it took nearly twenty minutes to fix it?  Did you know I was worried my medically fragile child might get sick just by bringing her into church?  Did you know I battled tears as I felt there was no place for her during children's time eventually leaving her in the preschool room with three and four year olds?  Did you realize I felt there was little connection with God because I was monitoring my toddler because I don't want him in the nursery for fear he will bring something home to his medically fragile child?  Did you know we pulled our child out of church and school and large gatherings and she stopped being sick ALL THE TIME?  Did you know I do trust God, and I believe He's given us discernment in all of this?

I'm an honest, fairly forthright, not too too private kinda girl.  If you know me at all, you know this.

Did you know you could say, "oh how I've missed you Michelle"  "oh how I've missed your sweet baby we've little seen" "Is everything alright? " "I must have missed you in passing, so good to see you today"   Did you know how much that would hug my heart?

I guess my pastor would probably say, "waaaah waaah waaah" , so whining time is over.  Just some thoughts from a special needs mom trying to do the best she can.

Sunday, May 17, 2015

Difficult days

Well, with near miss of the PICU, Lillian survived another round of pneumonia.  It is so difficult to watch her suffer.  As soon as I enter the room, my eyes are on monitor watch and I don't know about other moms, but for some reason I just can't peel my eyes off that monitor.  Heart rate, breaths per minute, pulse ox....and when you are sitting in the room alone with a child that is nonverbal and quite honestly, too sick to care to interact, you are fixed on the monitor.

On top of hospitals being uncomfortable for your child, it is also uncomfortable for parents.  It's isolating and depressing, escpecially when she is getting worse instead of better. Not to mention I'm already sleep deprived and going on x amount of days of worry. I kept telling myself that I knew, I knew there were multitudes of people praying for my sweet girl...I prayed.  You know what I wished?  I wish  I could take even an ounce of my strength and pour it into her.

I'm so thankful my Mom was able to come a couple afternoons and sit with me and Matt came down a couple hours with the help of some friends.  And if ever again someone offers to come sit with me and pray, I will NEVER turn it down.  It is so hard to be alone in the hospital, maybe some people prefer it that way, but I'm telling you, I could have used some prayer intersessors with me.  In body, not just in spirit.

So we came home after our six days and I knew it was probably wise to talk with the girls about how they were feeling.  We had just finished dinner and I went around the table and asked them each what they worried about when Lillian got sick. One of the girls wouldn't even speak.  One of them said what they were all thinking...they are afraid she will die.  One girl said she worried about money and my stress.  I sat here struggling with tears in my eyes trying to speak over the lump in my throat.  I told them I knew without a shadow of a doubt we would never go hungry or be homeless.  All I could say about the death part, is that it would be so difficult to walk through.  I encouraged them to talk with us when they need to and if they didn't feel they could talk to one of us to talk to someone else.  I told them, that in truth, each of us are the only ones that know what our life is and what our walk is like with Lillian.  I told them that we loved them and each of them is just as important as the next one and we needed to make sure everyone got through these times relying on each other.

There are no easy paths on this walk, but this IS our path.

We had a week with Lillian trying to rebuild her stamina and then this past Monday Ezekiel woke up with croup.  We are praying she does not succumb to anything as a result of this or anything she may have encountered while in the hospital.

Monday, April 20, 2015

Dr Lungs checks in

Yesterday I just started dreading our trip to Louisville today.  I knew there was lots of road construction...I didn't want to make the drive and honestly I was dreading what he might say.  Well...as it turned out, God gave us merciful travel...we didn't have ANY delays or waits on the road.  I mean I was thanking God all the way home for giving us such easy travel.  We left two and half hours early just to make sure we made it on time.  We made a quick stop for lunch and got to the office without incident.

When we finally got called back to a room, the first thing they check is her O2 sats.  She as only satting 93/94..friends...that is NOT a good number.  She always sats 98-100.  I know you're thinking that's not a big difference, but in our world it is.  That being said, she has been sick for about a month now.  and her asthma has been flared to the point of retractions and that is also NOT good.

The doctor said her lungs sounded good, and he said her sinuses were badly swollen.  So her ordered her a systemic antibiotic to hopefully get her over her sinus/ear/ upper airway infection.

They tried to get her to do a PFT.  To do a PFT you have to be able to blow.  Lillian can barely blow bubbles...so that test was out.  So, he ordered another test called an IOS that is done on 3-7 year olds and it will be done at Kosair prior to her next appointment to check her pulmonary function.

We have noticed a marked difference in her level of activity so that gives us a bit of cause for concern.  At this point he didn't think we needed to do a CT but it's likely coming as she hasn't had one since 2012.  But hey, HOLLA...she hasn't had a CT since 2012!!  WHOOP WHOOP!

So the day I dreaded so badly turned out very nicely and I'm so thankful  It still makes for an awful long day and is for whatever reason extra exhausting...it doesn't help that Ezekiel cried and whined all the way home instead of napping which he did shortly after getting home.

On another note, I finally started her on the probiotic our kidney dr wanted her on and she's been taking it less than a month.  She weighed two pounds less than when I had her at teh dr in January.  Her stomach has also looked far less bloated and much more normal...something I was starting to grow very concerned about.  (the bloated part..lol) So good news all around today, minus the fact that she's still struggling with sick/asthma junk.

Saturday, March 28, 2015

Scars

I see the marks left behind
Reminders of pain, physical for you
Emotional for me, harsh reminders  of 
the past...

It used to grieve me when I would see all those small puncture wounds in your groin.  It reminded of the marks a sewing maching leaves behind in material.  How did you endure so much?  I'm sure I'll never understand it.  I can't really comprehend it.

You struggled to breathe yesterday as we moved briskly though the cold and it struck me again how i'd forgotten you sometimes can't breathe. A little bit of panic running through my head.  Asthma attacks scare me a bit.  Even with today's modern medicine, children still die from asthma attacks. 

I, once again, had fallen victim to feeling so normal.  We had your hair cut and I wondered what the gal must have been thinking..maybe she wondered why you didn't speak in words and only in grunts. But I was silent.  I just stood there holding your head when necessary.  I took some pictures after wards and you were so tickled. You had the sweetest smile on your face and I noticed in the picture the scar on your neck.  The forever reminder .I shudder at the recollections of those times.

I see the scars left behind
gentle reminders of hopeful days ahead.  

Tuesday, March 24, 2015

In my dreams

In my dreams, I want a room full of all the things you love...a play set, a full toy kitchen, a little pretend grocery store.  Room for you to run and play.  No limitations in this room.  There are so many ways you are limited in your surroundings. Not even sure about places that are safe or even fun to take you.  I know we have much to be grateful for and I AM...I am so grateful.  There are days, though, days that I ache for what I cannot do...what I cannot give you.  Days when I feel like my best is just never enough.  You don't seem to know, though...which is a blessing..but also brings a bit of pain to my heart.  Love, though, you will never lack for love.  How I long for your life to be easier.  For you to be healthy and healed.

My sleeping dreams are another story...they are filled with sadness and pain.  They are cruel tricks of my subconsience.  They are riddled with pictures of you dying...why do I dream this way??  I long to close my eyes and never again wake to wetness on my cheeks as the tears spill into my waking world.    It is a dream I fear will someday become reality.  Something I will NEVER be prepared for. 

I will try to stay in today.  Not think about my dreams, waking or sleeping.   

Tuesday, March 3, 2015

Balance

Remember those years as a child when you tried to stand in the middle of a teeter totter to keep it balanced and not fall off?

I was trying to remember a time when I felt really carefree...I think it was when my Grandma took me and my sister to the park.  She's is older than me and when I would push her on the swings (the seats made out of wood) I could grab a hold of that seat when she was coming back to me and it would lift me in the air.  I loved that feeling of being weightless.  As long as she wanted to be pushed I could be lifted into the air and feel that way over and over. I preferred that to being pushed on a swing myself.  How ironic it is to me that such a memory brings on a wave of tears. We were little kids then, but even as a child I worried.  My mom dealt with a lot of serious illness that nearly took her life and our home life was a little unstable, to say the least.

Just when I think I'm staying pretty balanced something else comes along and  life gets harder to balance.

It's difficult when your life revolves around keeping your child healthy...and I know every mother does that...but when you have a medically fragile child it all goes to a whole new level..The things you have to do to maintain your child's health.  Every decision you make has to be based on the affect it will have on that little life you've been entrusted with.

Add past mistakes that disable you from even being able to provide a good solid home for said child.

Add to that your concern about what you do choose being judged by everyone you know and don't know for that matter.

Then, you have another child dealing with an illness, and there you are helpless as ever.  Not able to do ANYTHING to help, except to pray.

Prayer moves mountains...prayer changes things.  But, sometimes, it's difficult to wait on those prayers.

It all weighs on you, rather, it all weighs on me.

Transparency...here it is...for the first time in my life as far as I can remember, I don't have the desire to attend church.  I am struggling with being preached to about love and reaching out and helping others and relationship when I have felt abandoned. I learned a long time ago that people with fail me as I have failed others I'm sure.  I try really really hard to reach out to others.    I pray and I worship. I'm tryiing to live in grace, but noone is perfect and it's hard.  Ugh.

Writing became a way for me to heal when Lillian was born, though I didn't know it at the time.  I have started several blog posts and just have been too tied up to write anything that made sense.  This whole blog post itself may be crazy, I don't know.

Balance.  The balance is off and I'm struggling.