Busy, busy, busy

Lillian has been doing pretty well. She has battled a small fever recently but it passed quickly and her health is good overall. She resumed speech therapy Monday and did well for her new therapist. We have started homeschooling and I have been negligent on keeping up on my blog family...I will promise to do better, just know I'm trying to catch up on everyone, but may not be commenting.

I continue to have ups and downs with Lillian's life as I'm sure I will always. It has been great to take her to the pool even though she is a WILD child. Her granulation tissue on her stoma site is larger than a pencil eraser, but the doctor doesn't want to do anything to it right now. She will see her in two months and we go from there. We have to continue to watch for signs for respiratory distress in case the same tissue is growing on the inside.

We are settling into a routine here at home and although it is challenging to be homeschooling, I love having the girls here and teaching them. Lillian likes to also sit at the table and "write" in a notebook as we work. She also has taken to ending our prayer time with a resounding AMEN. Precious.

I came across this poem during one of our lessons, and I struggled to hold back tears as I read it. It is so relevant to my life....

The Things God Has Planned

It's sometimes very difficult
For us to understand
The wisdom and the love behind
The things that God has planned.

But we wouldn't have the rainbow
If we didn't have the rain;
We wouldn't know the pleasure
If we never tasted pain.

We wouldn't love the sunrise
If we hadn't felt the night;
And we wouldn't know our weakness
If we handn't sensed God's might.

We couldn't have the springtime
Or the yellow daffodil
IF we hadn't first experienced
The winter's frosty chill.

And though the brilliant sunshine
Is something God had made
He knew too much could parch our souls
So He created shade.

So God's given us a balance:
Enough joys to keep us glad,
Enough tears to keep us humble
Enough good to balance bad.

And if you'll trust in Him you'll see
Though yesterday brought sorrow,
The clouds will part and dawn will bring
A happier tomorrow.

Author unknown

Pool Time again

Lillian got her first ride down the slide at the pool today. It was a dry slide until you got to the bottom. I was just too fearful for her to go it alone, I just think she'd fly right off the end. She just LOVED it. She came down with Bethany and started yelling immediately mo-mo-mo---she was so excited. There is a special kind of joy seeing her enjoy such simple things. After five "rides" down, I was afraid she was going to drown and we got ready to leave. It was such a fun day.

The only bad side to the day, for some reason, I'm burnt...crispy. I'm not sure I will function well tomorrow. OUCH!

Cousin IT- not..lol

Funny or what? She was begging them to do that with their hair and glasses, what a goofy girl....

Just Trust.

Lillian's little granulation tissue is changing,not sure it I'll go so far as to say it's gone, but the ciprodex is making some change. I hesitate to say how great she is doing...she is doing so well. If we could just figure out the balance on this poop thing, it would be perfect. It just dawned on me tonight that my child no longer has a hole in her neck. It almost makes me want to cry. I am so thankful. I look back and cannot hardly fathom how much she has come through.

It is amazing.

I attended a church service Sunday at a friend's home and the pastor said in his sermon...I'm paraphrasing...'wouldn't it be great if we knew the outcome of situations that arise when we are being joyful because we know that is what we are supposed to do, not because we are really joyful? Won't it be wonderful when we sit at Jesus' feet and understand why things happen and we are TRULY joyful' WOW! Like a ton of bricks. Hit me right in the heart. I cried as he prayed the final prayer.

How much of the time I'm really grinning and bearing it bc I know that's what He wants, not bc it's how I really feel. I know there is a purpose...

I also had a conversation with a new friend and she was sharing a difficult situation she was going through and she said to me, "I know He just wants me to trust him" "I just have to trust Him"

I have said to myself and others, many times, I must be missing something..it seems that I'm just not learning the lesson God is trying to teach me.

My friend, Deb, made a necklace for me some time ago and the words she stamped in it were TRUST.

I think it will be a while before I can truthfully say I'm joyful for EVERYTHING that is going on. Hey, I'm human and sinful and selfish. But I think I'm finally fully trusting.

I know these thoughts of mine are scattered, but it's the best I can come up with at the moment.

First time in the POOL

Today I took the kids to Ceraland to swim. We only got to stay an hour, unfortunately, as a thunderstorm rolled in. But we got some good pics, and once Lillian got used to it, she was a maniac, I could hardly keep hold of her, even after she fell head first, all the way in, (I almost had a heart attack, but had to remain calm on the outside) She did really well. Didn't even sputter. First time since birth she has ever been submerged. She finally got to waving at everyone and making friends, but I tell you, she was NOT letting that water slow her down. This alone caused me to have to be with her constantly. The water came all the way up to her chest, I think I will need some back up next time...whooped.

I think

Right now is the healthiest you have ever been. I look back at old pictures and see this tiny frail baby, struggling to survive. While you are still very pale, and still trying to learn how to move that tiny body of yours, you look so much better. I remember that first year, expecting at any moment you would die. There, said it. Now it rarely crosses my mind. Perhaps it is a protection mechanism. Just don't go there. Tonight I was impatient with you, I was tired and feeling like I needed a "break", but then you do the smallest things that make me smile and I instantly let that feeling fade away. You are such a blessing and a joy to me...my heart aches it is so full of love for you. You have brought something even more special to my life and each one of our lives. I think it is difficult for anyone to be around you and not be in love. I still struggle with the unknown, but.... I think I've begun to let go of some of the things I grieve you may miss out on...because it is ok. You are special, you are different, and that is OK. It is not bad or worse, as some might see it. You will always find joy in life where others will not. I love you. My life may not have turned out the way I thought...but I would not change it. Not a moment. Love, Mommy

A little bit of prayer

Get this image imprinted in your mind....now, close your eyes and imagine her in a high chair. We sit down to do our evening of family Bible study, and I ask, "who would like to pray tonight?"

I survey the room only to see my tiny tiny girl slowly raise her arm in the air. I say, "oh you do? you want to pray?" She nods. I say, "ok, say what I say" . She clasps her tiny hands together and bows her head into them. I say "Dear Jesus", she says, "uh uh", me, "be with us tonight", her, "uh-uh-uh", me, "thank you for this day" her, "babble babble", me, "AMEN", her, "a-ME". No better "words"... and Jesus smiled.