Wednesday, October 27, 2010

Day 57

Wednesday October 13, 2010

For the first time in a really long time, Nina slept in. Not only did she sleep in, she didn't wake up in the middle of the night. Since we started fading the steroids we've noticed that Nina has been eating less and is more easily satiated during mealtimes. Additionally, she's asking for smaller meals during her midnight feast :) Now that we don't have to fast after midnight, we are no longer doing the midnight meals and she hasn't asked for them! Overall, it seems like she is sleeping better and is most definitely waking up in a better mood! I am so grateful because this means that she is resting more soundly!

The strange thing is that ever since we returned from Cedars, I spend very little time upstairs. Prior to all of this, the kids shared a room upstairs. The downstairs room (which is now Nina's) was a guest room/playroom. Now I practically live downstairs 24/7. The only time I go upstairs is to get clothes for myself or put laundry away.  What I miss the most is our bedtime routine. I am really trying to make sure that we equally take care of that he doesn't feel like he is being left out and resent his sister. I am very aware of how he could feel abandoned. I've seen it for years with the siblings of the kids with autism that I work with. The reality is that the siblings of the child with autism don't understand that all of the adults coming into to home to "play" with their brother or sister is not a good thing....they just see it as brother or sister always getting the attention. In my supervision groups, I have always encouraged our staff to incorporate the siblings into the therapy and even reserve a few minutes of special one-on-one time with the sibling at the end of the session. I used to do the majority of the care-taking for Teddy and now Todd is. I see how much Teddy is adoring all of the extra Dada attention but I am also keenly aware of how my absence, albeit it necessary and as minimal as possible, could impact his little heart! I just pray that God will protect his heart and shield it from building up too much anger!

After Nina woke up, we leisurely had breakfast...oatmeal with brown sugar:) It was a gorgeous day so I suggested that we go out shopping. We arrived at the La Cumbre shopping center around 11 am. For the next two hours we meandered from shop to shop. I had decided that we should take advantage of Nina feeling better and continue with our "Gifts for Teddy" quest. By this point, I have collected about 10 gifts. My goal is that by the beginning of November I have collected about 30 gifts, mainly for birthdays and then some for special milestones like high school and college graduation and then wedding. We had a wonderful time going through Pottery Barn and Nina picked some really cool gifts for her brother. The neat thing is that she doesn't ask why we are picking so many gifts. It is his birthday month and we have been talking about Christmas shopping (which she has always loved to do!) so maybe it all just makes perfect sense to her.

Irrespective, I am so happy we are doing this. It is incredibly painful but it also brings me happiness to know that for at least a couple of decades Teddy will always get a gift from his sister on his birthday. With each gift she picks, I either take a video of her picking it out or take a photo of her with the item. This way, Teddy will get the actual gift plus the photo every year. I've had some people question why I am doing this...and I understand that it is a bit morbid, but I desperately don't want Teddy to forget his sister, forget how much she loved him, adored him, worshiped him! I am very aware that he is 8 years old and that if Nina has to go to Heaven that he will carry a tremendous amount of pain for the rest of his life. Nonetheless, he is 8 years old and his memory of her will fade, that is what happens with childhood memories....they fade until they are just blurry images. I don't want Nina to become a blurry image in Teddy's mind! Above all else, the potential of Teddy losing his sister is what kills me the most! I could care less about my own pain or the pain of any other adult....but Teddy's pain is unbearable! I look at his freckled little face and how his beautiful blue eyes deepen with sadness when he asks how she is doing and if she is going to be okay. Watching your child be in pain and not being able to do much about it is a living hell!!!!

We spent the majority of the afternoon shopping and picked up another 12 gifts. It was amazing! We had lunch at Miss Nina's favorite hot spot....Panda Express! She ate a ton of broccoli and green beans this time and very little orange chicken. Personally, I prefer it that way:) Then it was time to pick up Teddy. We drove to Kellogg. Originally, Teddy was suppose to have a playdate but his buddy had to go to the dentist so I decided to meet him at the entrance of the school yard. When he saw me he shot me the stink-eye! Both of my children are Ph.D.s in shooting me the stink-eye!! Funny thing is that it didn't bother me that he had done so; previously I would have been totally mad and how disrespectful he was being. But now....I was just happy that it was a normal little boy behavior. Normal little boy behavior (regardless of how annoying it was/is) is still normal and I crave normalcy for Teddy! If Nina has to go to Heaven his life will never be normal again so I will take as many normal moments now as I can have for him!!

After Todd got home, I decided to run a few last minute errands. As I wandered through Paseo Neuvo picking up a few birthday gifts for Todd and Teddy (we were going to celebrate their birthdays at the beach house) I suddenly started feeling extremely overwhelmed! In essence, I had spent the day shopping with Nina for gifts that she may never be able to personally give to Teddy. I actually started feeling dizzy! A million different thoughts started pouring through my mind...I was angry all over again with the situation....why should I have to be buying for my dying child to give to her brother!! My life was not suppose to be this way!!! But God is never distant....once again He threw me a small life line.

At that precise moment, I felt my cell phone vibrate in my back pant pocket. I took it out and it was my friend and colleague Mario. He had some supervision questions and wanted to know if I could briefly meet. Luckily he was in the neighborhood and within a few minutes we were meeting at the Coffee Bean & Tea Leaf. I was so happy to see Mario! And so relieved to be distracted from my mind! Sometimes, I feel that my mind is my own worst enemy! With Mario I laughed and momentarily (just a moment!) was able to concentrate on something else, helping the Latino families we serve. At least while I met with Mario I felt like I could give someone their child with Autism...but then again I quickly fell into sadness because I deeply lamented that in spite of all my training and hard work, there was nothing I could for my own sick baby! All I could do was pray and pray I did!

As I sat there and chatted with Mario, I started to smile. I smiled because as Mario spoke I could see how God was reaching out to him through left me in awe! I have never purported to know why this is happening to Nina or to understand what the purpose is. I know that there is a purpose and I submit myself to the fact that I may never know that purpose until I meet my Maker but God is working in people's hearts through Nina. I know God is working in my heart, He is working in my family and friend's hearts, and He is working in complete stranger's hearts...all because of a perfectly beautiful little girl named Nina!

After I met with Mario, I got a call from Gordy that the stove and oven at the beach were not fixed therefore we were going to have to improvise our regular menu. Finally...a task :) I immediately went to the grocery store and grabbed several roasts and some chicken. I do best when I have things to accomplish. As silly as it sounded, not having the oven or stove work was a great gave me and Nina an important objective....prepare a bunch of meals ahead of time :) So...prepare is what we did. We made four roasts, a ham, and peanut butter cookie dough that evening! At one point, all four of us were in the kitchen dancing to Dynamite by Taio Cruz!! Nina was just in complete hysterics as her Dada sang (perfectly because Todd has an incredible voice), her Mama danced (ridiculously!!), and her brother bounced off the walls (one second break-dancing and the next belting out some tune). All in was a comical scene and we loved it!

Mama and Nina making our favorite peanut butter cookies!

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