Thursday, October 20, 2011

Angel Blessings

After the phone call on Monday, I have gone through a range of emotions. And I still am. I think writing them is therapeutic for me, even if no one reads my words. But I know that we have so many friends and family members that we love but have not had a chance to speak to, so I think this helps them know what is going on and how we are, too.

Happy Girl!
We had a neuro-surgical appointment at Arkansas Children's Hospital today, to talk about Ava's MRI results. She has slightly enlarged ventricles in her brain, but the Neurosurgeon didn't seem concerned. We are going to do a CT Scan and go back in 4 months for a follow-up. But he said that they were only very slightly on the high end of the chart, and were really almost on the high side of normal. Which is positive news! We see a neurologist next month about her EEG and seizure possibilities. Please be in prayer for that visit, as well as the GI and Genetics appointments that we have coming up.

I have had such a range of emotions since Monday. One minute I am just fine, and the next I am sobbing uncontrollably! I have moments of shear and utter panic and desperation, and moments of complete calm. I guess that is all normal and part of the journey to acceptance of such a diagnosis. Cole has been at work in Louisiana the last two weeks, and I am so ready for him to be home tonight. I know that he is ready too. This is hard for any family, but being apart has been excruciating for me. Plus, I am so exhausted, I can hardly function. I am not sleeping well at night, and just feel drained during the day. Cole is my key to a good nights sleep! I never sleep well when he isn't in bed next to me!

Ava's first Halloween
I know that soon, we will get back up to full speed and back to our "normal" life. It is just a process. But in the midst of the first few days of this journey, I can already see so many blessings that we have. I was telling Cole that there are so many mercies in Angelmans, that I am just so thankful for so much!

Love that smile!

 A lot of people call me "strong" and talk about what a positive outlook I have. I am trying. It doesn't come naturally or easily, I assure you. But I think you have a choice. In fact, that is what another angel mom said to me. She said you have a choice on how to handle it, but it is your reality and you have to find the good in it, because that is all there is to do.

So I thought I would share with you the blessings that the Lord has given us with this diagnosis...
Seeing Daddy for the first time in many months, Kosovo Deployment 2010

  • First and foremost, of course, is our Angel Ava. I cannot express to you how much of a blessing she is to my heart and life. She lights up a room with her smile, and when I am just so tired and not sure how to keep going, she looks at me with those big blue eyes (her daddy's eyes) and gives me a hug and a kiss, and my strength is renewed!
  • My faith in the LORD! I have always wondered how people go through life without knowing the Lord, but my gosh! Never in my life have I needed to rely on my faith so much, and it is continuously amazing to me how big our GOD is! He can take anything we give him, even this!
  • Family and Friends. My goodness! The outpouring of love and support has been amazing! We thank you all so much for your kind words and prayers- they really mean more than you could ever know! I am especially amazed at the people that I have known for a long time that will email or call and say "I have seizures, how can I help prepare you?" or "My child has special needs, what can I do to give  you advice?" It is simply amazing.
  • Dr. Steven Thompson, and Little Rock Children's Clinic. WOW. Dr. Thompson calls me (personally) all the time to talk about Ava, see how she is doing, ask how Cole and I are, ask if he can do anything to help us. He is so good about listening to me and what I think about AS and Ava. He always makes me feel like we are in this together, not that he is the doctor and so he knows best. In fact yesterday when he called me, he said "Rachel, this isn't going to be easy. But you as her mother and me as her doctor are going to do everything in our power to make her the best she can be. I know you would go to the ends of the earth for her, and I want you to know that I would too." I mean really?! Not many pediatricians would say that!!!
  • Arkansas Children's Hospital and Dr. Katie Burns. Dr. Burns is the one who actually made Ava's diagnosis. We sat with her last week for about 45 minutes discussing everything Ava! She was so good to answer my questions and listen to my concerns. She and Dr. Thompson are friends, and they had been discussing Ava's case. When she walked in, she said "So this is Ava! I have read all about her!!!" She had *studied* my daughter. Taken an interest in her! That amazed me! And ACH. My goodness! Could we live anywhere better! We live 20 minutes from a world class pediatric hospital that people journey from all over the country and world to visit! I have YET to talk to someone at ACH who isn't just the nicest and most patient individual. They REALLY understand the needs of their patients and their patients parents! You can tell that they CARE about them so much, and I am so thankful for that place!
  • Angelman Syndrome. Yes, Angelman Syndrome! AS is a difficult diagnosis, but not a devastating one!!! I know people who have held their babies as they went to heaven, and while I know that those babies are with our LORD, I also know how much their families miss them and wish they could hold and kiss and love on them again. And my angel gets to live here on earth with me! And on top of that, because of the AS, she may know pain in life, but never sadness or worry! And I cannot tell you how much that makes me feel better. Plus, because of the new research, there is so much HOPE that Angelman can be reversed and that new drugs can regenerate the missing chromosome and suppress the Angelman symptoms! How awesome!!!
  • The doctors that are doing the amazing research mentioned above! Need I say more?!?!
  • Happy baby at a birthday party! Ready for CAKE!
  • Other Angel Families. They have been so supportive and willing to talk to me and guide me as we navigate these first few steps. I am just blown away at the overall positive and encouraging attitude of angel families. They are all so dear to my heart and we will forever share a common bond that no one else understands. As many of you have pointed out, only special people are blessed with special children, and my goodness! I think that that doesn't even start to describe those who have been blessed with raising an ANGEL!!!
I have had so many emails, FB messages, and wall posts. I will try to answer each soon! I am just trying to take things slowly. I am overwhelmed by all of this, but the love and support from everyone has been astounding. THANK YOU!

Ava and Gigi (Cole's mom)


besnini said...

(((Rachel))) I (Dawn FitzRandolph Esparza's mom) read your words :) I am praying for you, Cole and little Ava. I praise God that you know Him and can walk this road with faith that He knows and knows what is best. I praise Him that Ava has one of the best smiles and most beautiful eyes. I really enjoy seeing her smile on facebook. Keep trusting and if there is ever anything you need specific prayer for please let me know.

julieBjoyful said...

I could not help but tear up reading the comment from your pediatrician! What a God send!! I am SO glad you have a doctor that is going to walk down this road with you!! Ava is so blessed.

And you my friend, thank you for being REAL. When people comment on your strength or positive perspective, I know it is the Lord they are seeing working in your life! He is the reason we have hope and like you said, thank goodness He is in the business of carrying our burdens! hugs and love. Julie B

And PS... Like the above person said- I too love seeing Ava's angelic, smiling face on Facebook! Please keep posting her beautiful smiles so we can all praise the Lord for the blessing she is.

Jodi said...

Hi, your daughter is adorable! I fond your blog from the link on the AS list serve... I have a 2 year old daughter with AS DEL + we just got her diagnosis 3 weeks ago. Isn't is amazing how supportive this community is! Welcome to the 'family' and I can't wait to learn more about your angel and all her amazing accomplishments.