Sunday, April 27, 2008

Crazy Emotions...

First of all...

Thank you mom and dad for staying with Ava and giving me a chance to spend some time at home. I really appreciate it. I love you guys.


I made it back up to KC tonight. Leaving Kaden, Nate, and home was so hard. My emotions right now are indescribable. I feel like I am just crying constantly or trying to hold back the tears. I want to be here for Ava but I also really want to be there for Kaden, too. I really want things to get better for all of us. I want to be a family. I want to go out together as a family. I want to sit at home as a family. I want to us to be able to live our lives without the worry of what tomorrow might bring. Is that too many wants???

It really got to me tonight when I came in and the baby that Ava shared a room with was gone. She had the same heart condition as Ava, but was a little younger. I am not really sure what exactly happened, but I am pretty sure that she didn't make it. I feel so sad for her family. Her mom just left two days ago to go home for awhile (out of state) and then this happened. It really gets to me, especially right now with Ava and how she is . I wish I could just make everything better and have no worries. It just made me realize, again, that things can happen. I kind of get into these modes where I think to myself that things like this wouldn't happen to my family...but sitting in this room with just Ava makes me remember that it can. It makes me sick to my stomach just thinking about it. I know the saying..."live like there is no tomorrow," but it is hard to "live" in a hospital room. I want to know that my baby is going home with us, I want to know that both of my babies are going to grow old and live a happy, fullfilled life, and I just don't know that. I guess nobody knows that...but it makes me sad to know that I have to face the reality of it all, every day.

I have been so worried about how Kaden is handling everything right now. It really gets to me knowing that he can not tell me how he feels. When I said bye to him tonight and explained to him that I am going back to the hospital and RMH he signed "yes" that I need to be with sissy but he wouldn't look at me when I was talking to him about it, he just kind of stared away. It makes me sad to know that I am missing things that are going on in his life and that I am physically not there for him all of the time. But if I wasn't here I would be sad knowing that Ava would be here by herself and that she wouldn't have us to love on her and speak up for her. It is one of the most aching feelings, being torn between my two babies. I can't explain it. I wish there was an easy answer for everything.

I also feel like we will be here through her next surgery. We aren't anywhere close to being home, and her next surgery is 3-5 months away. That may seem like a long time to others...but we have been here for 3 months and like I said, are no where close to being home. I just feel like she is not making any progress. We are just stuck.

I know I have talked to some people about this, but staying in the hospital makes it seem like your life is on hold, all the while others are still living theirs. I kind of experienced that when I went home this weekend. I was able to get out and "live life" with Kaden and Nate, although Ava was stuck in the hospital still fighting. She was constantly on my mind, but getting out and doing things with my family kind of gave me back a piece of my heart...I know that probably sounds stupid but I don't know how else to explain it.

I know that this is probably all jumbled up and doesn't make all that much sense...but that is how my brain is "working" right now. It actually has become sort of a joke for Nate. He thinks I am going crazy...um, hello, what do you expect? My brain is turning in to mush. So I am sorry if I didn't make much sense...but I am telling you the truth when I say that I do not make much sense to myself either. Please continue to pray for Ava's recovery and family's strength. Thank you so much.

12 comments:

Isabella said...

Amy it breaks my heart into a thousand pieces to know that you are going through this. I wish I had great words of wisdom but I don't. So I will leave you with love and prayers. I will be by tomorrow to give you big hug!!
Love
Megan

Heather said...

I check on you and your precious family everyday and I pray everyday that your pain will be eased and your heart healed. Your journey has been difficult and totally unfair and as one mommy to another I want to tell you how incredibly strong you are and your strength is a gift to so many others. I know if you could, you would have not chosen to have been an inspiration or an example but unfortunately that too comes with this hand we have been dealt. A possible purpose to this road we have traveled. I will continue to pray and when you feel you cannot pray there are countless others, strangers like myself, doing it for you.

crackerjacksMO said...

I am sorry that you have so much to deal with. I've never been in your situation, but as a mother I know that being away from your children is a very hard thing to do.

Everything is going to work out. It's taking precious time to do so, but Ava is going to get better and Kaden is going to understand that Ava needed a little extra attention.

I spent a many days at CMH last week with Izabel and I should have come up and introduced myself. We go back to get her cast off in the middle of May so maybe I can stop by then.

Have a good week!

Rob said...

You are an amazing family! Our prayers are with you, and especially little AVA. Your words make perfect sense, nothing you say or feel is stupid. Thanks for sharing your heart with us. Hugs. Robyn

Mary B. said...

I'm so glad you got to spend some time in real life! I have heard other parents voice the feelings that you are having now. You're not going crazy. If there's anything I can do for you, please let me know.

Anonymous said...

Amy, I'm so glad you got to spend the weekend with your boys! I wish I was with you to give you a great big hug right now! Things will get better. Ava just needs her time to get strong and then you'll be home living as a complete family! I can't tell you how much i anticipate that day! Please please feel free to call me if you just want to chat! I'll come hang out with you and Ava any chance i can if you'd like! I LOVE seeing you all! Just know that there are SO many people praying for Ava and your family! We love you so much! Hang in there!
Jen
(p.s. i could always bring my massage table to RMH with me!!! :)

Anonymous said...

My heart goes out to you! You are such an amazing person and inspiration to many people!I am so glad you were able to have some of your heart back and "live" a little ! You derserve that and much more. You are so incredibly strong and it is okay to be frustreatd have a mushed brain and want answers and to jsut WANT TO GO HOME! You keep beliveing and I will keep praying-God works miralcles and this journey will soon be able to continue un your own home with your family.. I believe in that!You and Nate have raised two amazing little angels and look what an amazing mother and fatehr they have to look up to !! I luv ya girly and I pray for you! I do not "know" what you are going through and to imagine it BRINGS ME TO TEARS but I do know what an amazing person you are-and God chose you-XOXOluv ya Whitney

Anonymous said...

Hey amy sorry about that last post it was from Whitney I didnt put my name to it!!

Anonymous said...

I got your "blog address" from my son's website, you posted a message on it. Thank you for taking the time to read about Jack's journey. I know things are tough for you right now and you feel like you will NEVER get out of the hospital, but remember that this is a marathon run, not a sprint race. Take pride in each small accomplishment (each med that is weaned, vent settings lowered, etc.). My family will continue to pray for Ava's complete recovery. Keep the faith, it is a tough job being a mom, let alone a mom to a heart baby. You are not alone in your journey. Let others help you out, including me. I am local to KC, if I can do anything, please let me know. Sending you big heart hugs and positive thoughts, Bridget Robertson, mom to Jack (HLHS) and Will (HH), bridgetconway1967@yahoo.com

Bridget said...

I got your "blog address" from my son's website, you posted a message on it. Thank you for taking the time to read about Jack's journey. I know things are tough for you right now and you feel like you will NEVER get out of the hospital, but remember that this is a marathon run, not a sprint race. Take pride in each small accomplishment (each med that is weaned, vent settings lowered, etc.). My family will continue to pray for Ava's complete recovery. Keep the faith, it is a tough job being a mom, let alone a mom to a heart baby. You are not alone in your journey. Let others help you out, including me. I am local to KC, if I can do anything, please let me know. Sending you big heart hugs and positive thoughts, Bridget Robertson, mom to Jack (HLHS) and Will (HH), bridgetconway1967@yahoo.com

Carey said...

I'm so sorry Amy, I know that feeling of frustration, but I don't know how you do it months on end. We'll be back next Wed. If you're interested we need to start getting out together, maybe just walk while the kids nap, or I'd be happy to take you to Jazzercise with me. That's always a very nice break for me! Let me know if you'd be interested!

Shelly in Topeka said...

Just a line to let you know that we are still praying for you and your family. Keep the faith, remember you are an inspiration to moms everywhere, and keep on sharing your love and strength with Nate and those babies of yours! Our youngest who will be 4 soon is currently in double non-weight-bearing casts following corrective surgery (@ CMH) in March for clubfeet and our 6 year old son has a phonological speech disorder that we continue to work on. I know that we are blessed that their challenges are correctable but still get frustrated sometimes... you and the many women whose stories I have read because of your blog are my inspiration to always appreciate our boys and to thank God for our many blessings, no matter the bumps in the road. God Bless You All!