What I want vs what I have

Let me first say that every person who has a special needs child has a different walk.  So what may be an issue/concern/wish in our walk can be very different from someone else's.  I realize all of the things I have to be grateful for.  My daughter walks unassisted, yes clumsily at times, but walks.  I know this is a blessing.  It is however, sometimes frightening, at how easily her balance fails...how many times she falls and the injuries she sustains.  When you have a tiny, unpadded body, that's rough on a girl. I also HATE when she takes a blow to the head in a fall.  It is always very nasty and when you know your child is seizure prone and has some things in her brain that aren't normal anyway, you just don't want to see that happen.

I often wonder if there will come a day when we can go to a playground and I don't have to stand guard over the equipment bc of the drops or the other kids that just brush by her can cause her to go down one of those drops.

I want there to be a day when I don't have to explain to a restaurant cashier why my child doesn't/can't eat and that look of pity they give me when they feel so awkward after hearing why.

I want there to be a day when I'm not consumed by sanitizing carts and highchairs...and wondering if it's safe to put her in the midst of other children who may be sick.  Because you all know sick is not good for this girl.

I so clearly remember sitting in a a developmental pediatric doctor's office and her telling me that our world should not revolve around Lillian.  I have to just laugh out loud at such a ridiculous statement.  So much of my life has to be governed by what is best for her health. (especially when the pulmonary doctors are telling you to go into hiding OCT thru May bc of flu season)

You know she's never been to the zoo or the Children's museum?  You know why?  She's terrified of animals and the Children's museum, hello, talk about  kid germs.  I mean seriously these are things I have to consider. Even family functions cause me some level of stress just due to the possibility of sickness.

I'm ok with all of these things....she won't suffer from not spending time on a playground, she is able to be sat in a highchair and a cart...she enjoys food in her mouth even if she can't swallow it.  She's never been to a zoo or museum, and her life is not going to be altered bc of it.   This I know.

There are just times when the walk is hard.  I'm glad I don't carry the burdens alone.  Even though at times it seems lonely.
Today's thoughts from a crazy Mom, walking through life with my special girl.

What a week

Good grief, poor Lillian has had such a rough week going on a week and half.  A week ago friday, I spent the weekend doing round the clock treatments and she battled a stomach bug on top of that.  It seemed by Wednesday she was over the hump and I took her to therapy.  By that evening she seemed to decline, laying around...very whiney, SO not her norm.  I kept her home from school and therapy the next day hoping some extra sleep would do her good.  By Thursday night, she'd been asleep about an hour and projectile vomiting ensued along with a raging fever that nothing I gave her would break.  She spent the entire night vomiting roughly every 20-25 minutes and I had her on ice and was doing anything I could think of to keep her fever down.  I took her in to the pediatrician Friday and he thought it was likely viral.  She continued to run a fever and vomit most of the day Friday and on into Saturday. She had a small window Saturday of looking/acting better, but it quickly closed and she began to puke and be puny again.  Today, she seems much better.  I'm hoping she is over it.  I'm praying I don't get whatever it was...as I did get what she had earlier that week.  I have felt pretty well exhausted and generally bleck....but it has been a rough week.

Joyful Noises

Lillian is battling her "normal" sick issues.  I spent the weekend doing treatments around the clock. She is super duper winey today which is not at all in her character.  Antibiotics on board, so I hope she soon gets relief.

It was so fun to have her in the room as we had our last ultrasound.  She thoroughly enjoyed watching.    

So, why do I find myself here at this late hour typing away?  My mind refuses to rest as I linger on my thoughts earlier this evening.  We have had two choir concerts for the bigger girls this past week and they were quite enjoyable.  As I sat there, though, tonight in the audience.  I began to get very sobered as I thought of my youngest child...I wondered if I would someday enjoy the privelege of seeing her perform and sing her little heart out on the stage. I then fight the tears back and try to remember to be grateful for the sounds she IS making.  She does do some type of "singing".  Just not something I can understand because there aren't really any words.  But she is using a singing voice.  The tune is non recognizable, to me anyway.  It's strange the emotions I continue to experience as I walk through this life with my angel.


Maybe now, that I've shared my heart, my mind can find rest.  Good night.

Playing in the tub

I'm sitting here, feet propped on the tub, while Lillian "plays" with her big sister's mermaid in the bathtub.  Looks more like she's trying to drown the poor doll, but playing nevertheless.  LOL.  I'm reflecting on the simple pleasure of "playing" in the tub.  This is something that you start early with your children...but that has not been Lillian's experience.  Baths were nightmarish having a trach and open stoma for a total of 4 years.  It took her forever to not be scared of water because we had to be so careful while bathing.  It's so funny what you take for granted.  She is sitting there "talking" and singing and thoroughly enjoying herself.  Makes me not want to get her out, but alas, she does get pruny very fast and that water just doesn't stay warm for long.

She is battling some something that is making her very whiney and making her eyes look very dark.  This weather is so crazy and she wants to play outside so desperately...which brings on the whiney.  She has 6 days of school left and the other girls will be out by the 23rd.  Yay for summertime.  Time to relish our time together as baby time gets closer.  Lillian has taken to talking or better yet, shouting at my tummy and then giving a kiss.  If you ask her about the baby, though, she makes a gagging noise/face.  Well, she has opened the drain and wanting out so I'm out for now.

How to truly melt a Mom's heart

It has been a habit of mine to pray with Lillian at night.  I start and pray for each member of the family..health, good day at school..safety.  I say amen and then Lillian tries to close her eyes and mumbles...not ever saying words, just grunting essentially. ( I have I ever mentioned that she isn't able to voluntarily close her eyes?)  I have to admit, I fell out of the habit and this week she reached for my hand and kept squenching her eyes shut and it finally dawned on me that she wanted to pray.  I started saying my prayer and finished.  ( I never mention myself in prayer).  She began mumbling as she always does...and then she said "mom" in the midst of her "words".  She knew and recognized that I did not pray for myself and there she was, in her way whispering a prayer for "mom".  I was on a cloud.  It has always been sweet to listen to her offer her prayers even though I do not understand it.  But to actually hear her insert my name hit me on so many levels I cannot even describe it.  Blessed.  Nothing but blessed.

The news

Lillian had a routine visit with Dr Lungs on Thursday and it went very well.  He said it was the most clear he'd ever seen her.  I bragged about how healthy she had been.  Bring on Friday.  All day friday she was abnormally whining.  I mean crying off and on all day.  I don't think she even knew what was wrong, but it was clear by 7 last night that all was not well.  She had started the day with a little bit of gagging, but that it not totally unusual for her, so we didn't pay much attention.  Lillian can see a doctor in the morning and by the afternoon be sick with something they said looked great.  That's how she rolls.  So, 7pm,  vomiting ensued and did not and has not ceased.  I spent the nighttime hours giving slow pushes of ibuprofen, tylenol suppositories and zofran.  She was wretching and gagging with nothing even going in.  As soon as I attempted to start pedialyte, I pushed the button, she started wretching.  She begged me all through the night for drinks, which further made her wretch.  She ran a fever all night long which keeps me on a vigil because she spikes so quickly it causes her to seize.  I sat beside her mopping her with a cold wash cloth, catching her puke with towel after towel, wiping the tears being forced from her eyes.  At some point, I had that overwhelming blessed feeling that I had the privelege of wiping those tiny tears away.  It was an oddly precious moment.
At 3 pm today,  I started a 15cc/hr drip of pediatlyte which we let run for a few hours.  and she slept much of the latter hours, still wretching all the day long.  She spiked a temp again while sleeping.  I have brought her to bed and medicated her hoping she may get some rest tonight.

I have to share,late this afternoon I found myself in one pathetic pity party.  The family had been gone all day participating in activities at our church and all I could think of is that Lillian could not be a part of that...how drastically our life has changed.  How life just seemed to stop.  It brings me to tears as I remember.  Sleep deprivation and early pregnancy probably not the best combination.

So, I'll pray for healing, respite and good rest tonight.  We will spend resurrection Sunday, me and my girl, being thankful for Jesus and tears.  Happy Easter.

A Big sister

If you haven't seen it on facebook, or perhaps you don't know us personally, you may not know that Little Miss Lillian is going to be charting some new waters as a big sister.  I'm due around October 10th.  If you don't know...this will be our sixth child.  We are thrilled and Lillian is basically not real clear on what is going on.  I had an ultrasound today and she has giddily carried the pictures around showing them to Daddy.  We keep telling her the baby is in my belly, but she doesn't quite get it.  I'm hoping as my body changes she will have a better understanding.  She does LOVE babies, so I'm hopeful that the transition will be pretty good.  She flip flops back and forth about whether she'd like a boy or girl.  Today happens to be boy.  LOL.  So that is the news here.  She is doing very well, sickness is being held back by meds though she routinely has green drainage.  I have been able to pull her off her albuterol which thrills me.  She has missed school this week due to bad weather here.  School was actually cancelled for all students here today.  The kids were thrilled, but it cuts into our slightly extended spring break.  I am so looking forward to nicer weather.  I'm ready to get us back to church and large functions that we have avoided with Miss Lillian, you know though, the sacrifice is nothing in comparison to having her health be so much better.  PRaise the Lord.