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.

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."

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.

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!

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.

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.