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

Rhyder, Brianna and Annabel...

I have talke with a precious family who live fairly close by. Yesterday another miracle was born. His name is Rhyder and he is the son of Michele and Dave. They don't have a blog but I have seen pictures on facebook and he is so cute!! He does have trisomy 18, like Brianna and Annabel. At this point he seems to be doing well and he is going home with his mommy and daddy tomorrow. They have two other sons who are very young. Their hands will be full with all there is to do, the stress of having a lil one with trisomy 18. Please keep them in your prayers and I will surely be the first to let you know when they have a blog.

Brianna continues to have some spells, blue, high heart rate, low sats...They are in the midst of this time of appreciating each and every moment but also knowing that their moments maybe limited. Please continue to be with them in your thoughts and prayers. I find myself admitting more and more this is a tough road.

As far as my family we are getting back into the school routine. I love summers with no schedules. I do have to say that school is such a blessing to me where Annabel is concerned. She is safe, loved and sooooo stimulated. She comes home so happy, ready for some lovin' and ready to got to bed out of sheer exhaustion. This week has been an emotional week for my twins, Carly and Colette. We woke to an early call this past Sunday morning, from the asst. principal telling of their friends horrific head on collision the night before. I have always loved the fact that they go to a Catholic school where they can openly share their faith. This week we all got to see their faith in action. They all came together at school Sunday afternoon for a prayer service. Another Mass said at school on Monday. Since the visitation and the funeral were a few days away, the students just met at families homes to be together. Many time spending the night and all going to school together. Last night was the visitation and today the funeral. It has been an emotional time for these seniors. My prayer is that they will turn this horrible tragedy into something to honor their friend Ashley LaBiche. Her family is hurting so, but they are a family of strong faith. We will all pray for them as they accept this loss.

We are also getting ready for my son's deployment. We attended another yellow ribbon weekend as a family. It was a good time had by all. This is our first family member so we are learning so many new things. I think I am beginning to realize this is going to happen, that he will be leaving my son and returning as a soldier.

Annabel continues to struggle with her UTI's. She did great after the surgery for three weeks. Since then she has not been free or off antibiotics for more than a week. Our pediatrician is wonderful and without her I don't know what I would do. Our urologist doesn't expect her to ever be negative of bacteria again. He also doesn't want us to treat her. This has been my fight since mid-July and I am worn out. If you ever hear us moms talking about having to fight for our childs right to treatment, this is it. It is way too much to explain and too confusing to try to make reason of his reasons.... She will be having some more test on her kidneys (nuclear med scan, renal ultrasounds) and then making a decision on another dilation or something more permanent, such as a vesicostomy. These test are not until Oct 6 and 7th. After this frustrating appt. we went to visit her surgeon. Over the weekend while out of town Annabel's g-button malfunctioned. The top of the valve came out so it needed to be replaced. She had the mini-one and this is what we replace it with but with a shorter size. She had a 2.0 and now is sport a 1.7. Because she had lost the top valve it made removing the button very difficult. Normally they just take the instrument that comes in the kit and locks it in the valve and with some pressure they remove it. Well, not for us. After realizing they couldn't do it this way, the nurse ask me if she had bowel issues....???? HELLO!!! I said yes and then she replied well that won't work. I ask what she meant by this and she said, "well when we can remove them easily we just cut the top part of the button off, push the rest through into their tummy and just let nature take its course!" OUCH! Annabel struggles so much just to get the soft stuff through, can imagine her trying to pass this silicone/latex type button without something happening. Anyway they did use some other instrument that they used to remove a Bard type button. Long story, but didn't know if this has happened to anyone else.

Then our last appt. of the day was our long awaited sleep study. Because she had to go to sleep with the c-pap/bi-pap mask her night was much more of a struggle. A little history, we have not been using the bi-pap due to it causing her episode of choking while sleeping. She has trouble managing her secretions and with the bi-pap blowing it back down she is fighting the machine. So the sleep study was done with the c-pap and she did good as far as apnea episode in the beginning. The new is that Annabel is still experiencing the central apnea and will probably need another study done with the bi-pap machine. We have to wait for the doctor to review and give us a call to know our next step. I had truly hoped that with the surgery it somehow had cleared this problem. I do know removing the bowel has significantly reduced her need for oxygen on a regular basis. Also, she is so much more comfortable with her tummy issues.

Annabel seems to be growing longer. She is now 23lbs. 2 oz. and about 34" long. People comment on her face not being so babyish any longer. Due to her not feeling as chipper the pictures are not as smiley, but will post a couple anyway.

Brianna Botts...

Again, I come to you asking for prayers for Brianna and her family. They have been on a roller coaster lately and it still continues. Things are not sounding so great any longer and some very important choices/decisions are having to be made. Pray that God will hold this family in the palm of His precious hand as they find professionals to help and guide them. Pray that Brianna will not suffer if He chooses to carry her home. But with that said, we pray that more time will be given her family who was chosen to be her family a long time ago...

You can read more about Brianna and their journey at briannagiveshope.blogspot.com