Much goings on...

This week will be a fairly busy week and not what I would consider boring. You all know how I cherish my boring times.

Tyler, my 21yrs. old son will be leaving this week. We thought he would be leaving on Thursday and I tried to make all of our plans around this. I wanted to be here if he needed me for anything and also to try to spend anytime possible with him. Tonight we are going over to my parents for some roast,rice and gravy, fried okra, green bean cassarole, deviled eggs, corn and homemade chocolate pie. Yes, after we are done we will all feel like we do after eating a holiday dinner. Everyone will be there tonight except Tara, who went out of town for the holiday weekend.

Tomorrow we will travel to Houston to the Astro game. The soldiers are being honored in a short ceremony prior to the beginning of the game. Annabel will not be attending due to her not feeling so great and the noise level maybe too much.

Annabel has an appointment on Thursday for her ECHOcardiogram. Her pulmonary doctor asked that this be moved up instead of our scheduled time in mid-October. She will them need to wear a halter monitor for the next 24 hours. Our plans are to stay at Michele's (Annabel's milk mommy) Thursday evening and enjoy their beautiful home and wonderful company.

All this is subject to change if I can get the ECHO moved up due to needing to travel to Florida for Brianna's memorial service. When I looked Friday evening the flights were high but by the next day (withing the 7 day period) they had raise 200.00 per person. Yuck!

Annabel's sleep study showed that she needed to be on oxygen all the time she sleeps. There is no answer as to what we will do long term about the bi-pap. She just doesn't tolerate this well with all her secretions. She does well with her levels on oxygen, but last night we did have to raise the oxygen slightly. If I remove her during the nights her levels decrease into the 60's and 70's. She had done so well since the surgery. She is not having the spells during the day only at night, so that is good. She has developed a respiratory/cold so she really doesn't like the canula being placed in her nose. She is so good that if I tell her no-no, she just lays there looking at me pleading, please remove this from my face.

Our hope is that Annabel and I will travel to be with the Botts for their sweet Brianna's memorial service. Please keep this dear family in your prayers. I can't imagine how emotional this week will be leading up to the service.

Brianna receives her Angel Wings...

Brianna Botts has received her Angel wings today at 2:55 p.m. I cannot imagine what her family is feeling as they try to walk this road with arms so empty.

I am speechless. I seem confused, walking in a fog and seem to snap at anyone for no reason these last few days. I know my anger is not for lack of faith, I do believe. I do know she is in a much better place. My problem is just my selfishness and my lack of understanding. Understanding why this Trisomy thing is so ugly. I do know that these little ones are so full of joy, love, goodness and peace. I do know that their gifts are given by our sweet Jesus. I just don't understand why He calls them home so soon????

Alyssa's mom, Trish, wrote this beautiful piece that I have copied with her permission. God has truly given Trish a wonderful gift that shines so bright through her writing. It addresses so clearly the emotions and the journey we now travel with Trisomy 18. Alyssa's blog address is: www.wndrfllymde.blogspot.com

Right now I'm driving down the T18 highway in the backseat of a friends car...Brenda Botts. Gods at the wheel and Brenda along w/Bri (Jerry and Ashley) are alongside in the passenger seat. The view from the back is alittle obstructed but from back here the road feels hilly and narrow and it's hard to see where we're being led.

I'm feeling motion sickness and wondering how I can get comfortable. You can see this isn't the most comfortable ride for them as a family, but they are doing what they can to make the most out it. The Botts family, they are enjoying their togetherness. They are glad to have a trusty car, and a reliable driver. They're happy that they can focus on what's happening in the moment and allow their driver to worry about what is ahead. They aren't even wearing seat beats! Trusting that God will get them to their destination safely.

Me, here in the back.. I want to lean forward and strap them in. I want to ask the driver to slow down, or stop for bit so I can catch my breath. But I'm just along for the ride, a stow away waiting for the rise of the next hill, dreading the decline..wondering if there will be a clear view of what's ahead.

The Botts family have been kind in letting me stow away here in the backseat, they share bits of their front seat treasures with me. They share their morsels of food (encouragement) and fresh water (faith in a living God), even their medicine ( big doses of T18 reality) willingly. Being back here on this trip is helping me to prepare for when it's my(our) turn in the front seat.

How blessed I am that God is sustaining the Botts family so much so that they are willing to share their experience. How blessed are they to have such a loving and compassionate God. Brenda and her family are teaching me, and are examples of how God does work within. God is good. Even when the end is near He is good.

For anyone who wants to visit Brianna's blog, the address is: www.briannagiveshope.blogspot.com