Let go of what is!

Let go of what is!

I don't know maybe it only makes sense to me. I have been thinking and I am very grateful that Leah has been doing pretty good lately. When I struggle to find answers and wondering why Leah has to suffer and why she got this life. I am so grateful for what comes to me...from God... let it all go! Let go of your feelings of sadness, let go of what life I thought Leah was going to have, let go of the why's. Be okay with what it is... even though I don't understand any of it. My answer is to be okay with what it is. When I get these answers and have a feeling of total peace. I feel better than I have ever felt in my entire life.

I strive every day to let go of what is.

I am so blessed!

I hope everyone had a great Thanksgiving with their family and friends.

I am so blessed! I have a little angel as my companion every single day. She doesn't leave my side almost 24/7. I tell her every day "I didn't know I was going to be given an angel". Why me I ask myself? How did I deserve to care for this precious little girl. I tell her every day "thank you for coming to me...thank you for choosing me". We have a connection that's undescribable. It's a heavenly connection, I feel it every day. I know others feel it too. People can't get enough of her- they crave her presence. Many people say "I love the way Leah looks at you".

Leah has a very wise soul. I learn from her every day. We don't need to communicate with each other-we already understand each other. I am constantly amazed by her strength. I have learned that life is precious and beautiful. I am so grateful that this little girl has taught me that all the little problems that I thought were problems really aren't problems at all. I appreciate all the small things in life. All my relationships with the people in my life have changed for the better. My life has forever changed because of her. Even though the days are hard and she still doesn't have a diagnosis there is one thing that will never be taken away from us and that is...the love I have for her!
I love you Leah!

X-men quote

I love the X-men movies! We watched the latest one again today! I love this quote when the old Charles talks to the young Charles. I really felt something while I watched it. I relate this to our experience with Leah. To sum it up he says:

"As frightening as it may be, the pain will make you stronger. If you allow yourself to feel it. Embrace it. It will make you more powerful than you imagined. It's the greatest gift we have- to bear the pain without breaking. It's born from the human power- HOPE!!!"

A Hockey game with Angel Hands.

We were lucky to go to a hockey game last night with the Angel hands foundation. Chad's family came with us and we had such a great time!I knew it was going to be very cold last night and very loud at the hockey game so I left Leah with my friend Melinda. Those two things are not a good combination for Leah, it's best that she stays home in a cozy house. When we are at these events I really miss her because I see all of the beautiful special needs children with their families and I wish that Leah could be with us. The foundation gave our children noisemakers, a T-shirt, a voucher for a treat and silly string to spray the mascot with. My kids had such a blast! I am really grateful for these events and this wonderful foundation. Because of the circumstances of Leah we don't go out a lot. So it's fun for us to be involved with these events. It feels so good to be with people who are experiencing the same trial in their life. It is very therapeutic for me to be with these wonderful families and I think very therapeutic for my children to see other siblings and know that they are experiencing the same thing as them.

Leah did great with my friend last night. She didn't have any seizures and she was very aware and alert. Actually, she didn't have any seizures all day! It was a great day for all of us!

Morning smiles!

I used to dread mornings with Leah. The minute I woke up and went to check on her in her room I held my breath every morning hoping she made it through another night. The first thing I would do when I opened the door and peaked over her crib is check to see if she blinked her eye and if she did I knew she made it through another night. This is not a way for her mother to live. But ultimately, Leah has had very very sick days. Horrible nights full of seizures and most the time vomiting. And with the vomiting comes a huge risk of aspiration.

But things have changed! She has done quite a bit better with her nights. The seizures have been better and the vomiting has been better. I have noticed a change in me when I wake up. I can't wait to walk into her room. Yes, I still get slightly anxious but it's different now I have gotten a different morning scenario. Yes, I do check to make sure she made it through the night still slightly holding my breath but also I find myself kind of running to her crib to say hi to her. Before these last couple of weeks she always had a blank stare on her face and gave me no reaction when she saw me and at times I never really knew if she knew I was there because she never looks at me or reacts to me. Now, when I walk in her room something is different she turned slightly to look at me and the look on her face changes, she gives me full eye contact and she holds her gaze at me. Her facial expression is of pure happiness! Leah is happy to see me! It's still seems so not real! I can't believe it! She gives me smiles in the morning and she never stops looking at me with a happy look on her face. Please understand I never thought this day would come. It's truly amazing! I couldn't be happier!

Keeping it real!

I really struggle with my feelings! I bottle up a lot inside. I would also say that I am more of a private person. But, I've been thinking a lot lately about my true feelings and my life with Leah. I don't write on her blog very much. Mostly, because I am crazy busy. But also, because I have a lot of hard days and I don't want to share the hard times. Why? really because I always want to give good news and uplift people. In reality, there's not always going to be good news and that's okay. That's life! I follow some blogs and FB pages for sick and special needs children and I love hearing everything. I love hearing the good but I also like hearing the bad. It doesn't bring me down. It actually helps me realize everyone has bad days. So here I go! You all get to hear the Good, the bad and the ugly. But mostly the good! haha! I had to throw that in ;)

A perfect moment for a mother.

I can't believe I am going to type these words...Leah giggled! Yes that's right, my little girl who doesn't even make a sound giggled last week. I was tickling her and making my crazy mom sounds to her and she let out a giggle. I stopped in my tracks and said to myself "No, that didn't just happen". I immediately grabbed my phone to record a second giggle. She didn't do it. I was a little disappointed because I really wanted to share the giggle with everyone. I soon realized it was a moment between me and her that I will cherish...until the next giggle. This giggle I am sharing was when she was one years old and doing very well on the ketogenic diet. This was the one and only giggle I got after she got sick. Through out these past two years I have listened to it well over a hundred times. It's the most beautiful sound to a mother's ears. 
P.S I apologize for my obnoxious cackle in the video. It's totally embarrassing!
http://youtu.be/amamBO7EVWI