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.

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

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...

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.

Bj

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

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.

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.