Take nothing for granted

I'm sure my sister will have something to say again about my entry not being about something fun and happy (I love you anyway!), but I have found this is a good way for me to express some of my feelings because I normally don't talk about things that bother me. But just to keep Mae Mae happy, Rhae is SO close to rolling over, and I can't wait for it to happen and be able to share it through video with all of you. Unfortunately, Rhae has run a fever for the last 24 hours and really is not feeling good even when the fever breaks, so there's not much other fun happy stuff going on right now.
Many of you already know of my struggle over the last few days. I mentioned in an earlier post about the adorable Fancher family we met. Mary Clayton has done so well over the last few weeks. Her mom has been email me daily and telling me of the progress she was making. It was slow, but still progress, and it thrilled me. Well, Tuesday morning, I woke up to an email stating she was not doing good. That night, I got another email again talking of how she had taken a turn for the worst and they were not expecting much. I cried all night. I am amazed at how quickly I have become attached to this baby and her parents. I'm usually very skeptical of new people and don't always connect right away. Strangely, that has not been the situation with Robert and Stephanie. I felt an immediate connection and I guess that's why this is so hard. I have taken care of very, very sick children in my nursing career, and have actually had to watch a 4 year old with brain cancer die after coding her for 4 hours, and have also watched a 9 month old baby boy code and die. As a nurse, I am supposed to be able to handle these things. This situation has really hit too close to home though. Though our situations are totally different ( I can't imagine what they are going through), I remember thinking Rhae wasn't going to live after birth. I remember thinking if she did, we would be in the same situation the Fancher's are. That could have been us, and that makes it a little more real.
I look at both my children and realize how lucky I am they are both here, and how I have taken their health for granted. Aidan is not sick much, and I don't think too much about how easy it would be for him to be as sick as some of the children I have taken care of. Rhae is doing great, and sometimes I forget how fragile and delicate she is, because she tries so hard. I know I have taken for granted the fact that she is here and we could be so much worse off than we are. PLEASE take a minute to reflect on your own children, neices, nephews, any children in your life, and how lucky you are to have them in your life. Things can change dramatically in a blink of an eye. Please keep Mary Clayton, Robert, and Stephanie in your daily prayers. We serve an amazing God. He hears our cries and still performs miracles everyday, and that is exactly what this family needs right now.

31 things you may not know about Rhae

1. Rhae loves her mommy!
2. Rhae loves hands and ceiling fans.
3. Rhae is mesmerized by her big brother.
4. Rhae is a fighter.
5. Rhae loves any song with the syllables La-la in it, i.e. Minnie Ripperton’s “Loving You”
and Elmo’s theme song.
6. Rhae moves constantly.
7. Rhae will fight sleep for 3 hours straight.
8. Rhae is trying hard to roll over.
9. Rhae has had over 20 broken bones.
10. Rhae has the cutest laugh.
11. Rhae loves to touch things and hold them using both hands.
12. Rhae’s hair is turning light brown.
13. Rhae will lay in her room for quite some time watching her mobile.
14. Rhae also likes to look at her name on her wall.
15. Rhae will NOT take a pacifier.
16. Rhae is the strongest person I know.
17. Rhae loves to hear her cousin Halle’s name.
18. Rhae likes to shake her rattle.
19. Rhae likes to watch The Ellen Show to see Ellen dance.
20. Rhae loves to take a bath.
21. Rhae can roll up like a rollie pollie.
22. Rhae will not eat food, but loves her Momma’s cornbread.
23. Rhae can hold her head up for more than 2 minutes at a time.
24. Rhae does not like to be wet.
25. Rhae tries so hard to make everyone else happy, even when she is in pain.
26. Rhae likes to be scared.
27. Rhae is a McCain fan.
28. Rhae only takes two 20-30 minute naps a day.
29. Rhae has finally graduated to 0-3 month old clothes, though they are still a little big.
30. Rhae will watch Sesame Street long enough for me to take a shower.
31. Rhae is an answered prayer and the best gift I have ever received.

What's your financial status?

Over the last few days, I've really been thinking about our new financial status. For those of you who don't know, we made the decision for me to put my nursing career on hold in order for me to be able to stay at home with Rhae and provide her with the best care possible. We've always lived comfortably and never thought this might happen, but then who plans to have a disabled child? Well, as you can imagine, our monthly income has dramatically declined. I've been worried about the bills, about birthdays, about Christmas, heck, about just going to the grocery store! I started my own little pity party the other night, wishing I was one of the rich people instead of the poor. All of a sudden it dawned on me--I'm richer than I've ever been in my life!! No, the money is definitely not there, but money isn't everything. We went through a traumatic pregnancy, only to have my daughter prove everyone wrong--she fought all odds and made it. I'd say that's pretty rich! I have an amazing son who is kind, loving, and smart as a whip! I'd say that's pretty rich! I have a roof over my head, clothes on my body (as old as they may be!), and don't have to walk anywhere. I'd say that's pretty rich! I have an amazing family who has been so supportive of me all my life, and love me unconditionally. I have a husband who doesn't cheat on me and doesn't run the roads. I'd say that's pretty rich! I have a Heavenly Father who loves me enough to allow me to be here everyday and somehow continue to muddle through what I sometimes feel are impossible situations. Again, pretty rich, wouldn't you say? So, while my bank account is perpetually almost empty, my life is full of things and people that make me rich beyond my wildest dreams! How rich are you?

Our new friends

Wow, time is really flying by! My sweetie is 6 months old already! We went to the doctor the other day and she was 10# 2oz!! BIG GIRL!! She has been doing so well lately, other than the stomach virus she's finally caught from the rest of us. Like always, though, it's not slowing her down much. She is still all smiles! She is still trying desperately to roll over, she just can't get her lower body to work with her upper body. She's intent though, and will be rolling over before I know it. She is beginning to recognize faces, and she really lights up when she sees people she knows! It has begun to hit me lately just how lucky we are to have her here. I don't know if I've been in shock for 6 months, or what, but in the last few weeks, I have caught myself looking at her and just crying knowing things could have gone another way. I still don't know why we were chosen for this journey but I sure am loving it.
We really haven't had a lot going on recently, but I have had another prayer answered! I keep wondering when I'm going to reach my cut-off point! :) Thank goodness we serve a Lord who doesn't impose limits! Don't get me wrong, I LOVE my OI family on our web group, but several members actually live close enough to each other to visit and I've been stuck down here in the middle of nowhere wanting that commraderie (sp?). Several months ago, I began praying for God to introduce me to another OI family close by...I knew we couldn't be the only ones in the South! Well, what I really expected was to be lead to someone in possibly Birmingham who had an older child with type I or something... somebody that could be a good supporter as well as a teacher. Well, God had different plans and I'm so glad He did! He lead me to a new OI baby, just shy of 2 months old, and with the SAME rare type II diagnosis that Rhae was given. On top of that, they live in SELMA!! That's only about 45 miles from me, for those of you who don't know our territory. Imagine my surprise! Well, even though I felt like I needed somebody that had already been through everything I would go through, I realized I already had that in the web group. This is even better! Rhae and Mary Clayton are only 4 months apart, and will be able to grow up together. I've worried about how cruel children can be, and her eventually developing a complex because she wouldn't know anyone like her. Well, now she will! I met her parents, Stephanie and Robert last week, and it was like running into long-lost friends! There was an immediate connection we all felt, and we both know God brought us to each other! On top of that, Stephanie and I realized how much we strangely have in common! God works in mysterious ways, and we are so glad to have these new friends. Mary Clayton is still in the hospital because she was also born prematurely. She is improving daily and hopefully will be receiving her first PAM treatment soon. She has a head full of black hair like Rhae did and is a pretty little girl! I've seen a picture and can't wait for our time to come when we meet. I feel so attached to her already. As you read this, please send up a little prayer for her and her parents. We are ready for this baby to come home!
My mom is here now and I think everyone has really enjoyed visiting...her with the grandkids, them with her, us and her, etc. Aidan has really missed her and has been glad to have her here for a while! She was really surprised at how much both Halle and Rhae have changed. I've added some new pictures recently so you all can see as well! I don't have much else to say for now, so I will leave you with this...