Okay!!

Our life at this moment is...changing! We completed the nerve-racking process of being approved for home-health nursing. I got the call yesterday from the home health agency that we had been approved. I had been waiting on pins and needles, and I knew I would be emotional when I got the decision (approved or denied) but when she told me we were approved I literally fell to my knees right in the living room and began to weep. I couldn't even hear her talking anymore. I just thanked her and said goodbye. Ha. (I called her a little while later to have her repeat everything she said after "you've been approved!") Olivia wasn't quite sure what was going on. She doesn't really understand emotions other than the happy, loving ones. She generally laughs or just stares if someone gets angry, sad or scared, etc. Although, I do have to say, she is sloooowly starting to develop a bit in this area and that is very exciting for me. She responded to me crying by coming over and patting me on the back and even asked me, "Okay?". She kept switching sides, too. Patting me on one side then walking to my other side and patting me on that side. Then I gathered myself enough to realize I needed to help her process this moment more than I needed to experience the moment. So, I turned to her and smiled big and said happily that Mommy was VERY ok. And, Mommy was crying very happy tears. Then, I added some clapping and Yays, things that tell Olivia it's a happy thing. She immediately smiled great big and threw herself onto me in big, tight hug. So, we sat there hugging and laughing and me still weeping and Olivia still patting me and saying, "Okay!" Yes, Olivia, Mommy is SO very Okay!

And, now with this amazing turn of events, the nursing, Mommy will get to be even more Okay. I can't believe I am not going to have to do this alone anymore. I am in shock. I have had to push my body and mind so far in the past year that I thought surely both would snap, but they did NOT. Praise God, they did NOT. There is so much work to be done with and for Olivia and really tough days ahead. This nursing service seems to be coming at a really perfect time.

My mind is just swimming with all the things going on, but as usual, I can only seem to handle tiny updates at a time. I'm sorry about that!

I do want to ask for some specific prayers for sweet Olivia. She will most likely be having 2 more procedures/surgeries within the next 60 days or even less. Her hearing is still very, very low, so she will almost surely be getting tubes placed in her ears. Right now, she hears everything like she is underwater. Pretty awful and extra awful when you're trying to learn a language, so we will be taking care of that sooner than later. The other issue is far more complex. She suffers from sleep apnea, both obstructive (something literally obstructing the airway and stopping breathing) and central (the brain is "forgetting" to breathe). There is nothing you can do to fix the central apnea, but there are possible fixes to obstructive apnea. That is, IF you know what the obstruction is. Our problem is we don't know what exactly is causing her obstruction. We (the docs and I--not me, myself and I--ha) believe it is ultimately tied to her low muscle tone issue--just like SO many of her other problems. She will need to have an exploratory procedure done where they watch her throat in action while she sleeps. Please pray that all goes smoothly and that we find the proper direction for her care in this matter. Olivia having a compromised airway is a huge source of worry for me.

Well, I did say this was going to be short, didn't I?? I guess I got a second wind or something. :o)

I hope this moment finds each of you doing/feeling well, and I hope you can feel Olivia giving you a virtual pat on the back and hug around the neck.

All my love,
-H

PS  I am waaaay too tired to edit this, so forgive all spelling errors and missing words. Just use your imagination. :o)

Mother's Day!

To my Olivia: Today is Mother's Day, sweet girl, and I am so incredibly lucky to be YOUR mother. I feel that way every single day. I absolutely love it when you give me hugs and pat me on the back while we embrace. I love your sweet little voice, especially when say such words of kindness like "thank you" and "good day!" but extra-specially when you say Mommeeeee! :) I cherish your laugh!! And, you are SO funny. I never knew you would have such a sense of humor so young. You genuinely crack me up. We certainly need our laughs, because it's true, sometimes our days are pretty tough. But, you are tougher; stronger than anyone I've ever known. You have shown me what real strength is. You are teaching me what it means to persevere. 

My dear, sweet Olivia, to be your mother and get to love and guide you every day is the greatest gift I have or ever will be given. I cherish every moment up to this point, and I promise to continue to linger in our hugs and in our bouts of the giggles, because all I have is our life.....at this moment.

All my love forever and ever,

Mommy