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.