Thursday, March 22, 2012

personal encounter/surgery

In October, 2011, Ethan (youngest son), went to a birthday party at a nearby church. Months before this, I had painted a picture of Jesus (see at this church and they had it out still for the congregation to see. this past January, i got a phone call from a woman who attended that birthday party that Ethan went to. She had seen the painting and wondered if i still painted for groups. to make a long story short, i did a palm painting for her church this past week. it was a wonderful experience sharing at her church. i must say, even months prior to this event, God ordained that i run into her and we have a conversation that would give me hope, insight, and the confidence i needed for Brooke. a few days before i painted at her church, we met (for the first time) and went over the events of the day. before leaving her that evening, in the parking lot, we talked about our families, our lives, and what the Lord was doing in each of our worlds. i shared with her about Brooke and the news concerning her scoliosis, the surgery she needed, and my fears of it all. she asked me, "dani, who is her doctor?" i said, "Dr. Nimits." She responded with, "i work for Dr. Nimits!" what?!! are you kidding me?! the timing was impeccable. God alone was capable of ordaining this meeting, a God who reaches into the depths of our souls, hears our cries, and meets our needs. This is my God...setting up a very personal encounter.
i walked away that day with more confidence than i did when i drove up to that church that night. i know that the Lord is not only personal to me, but, as brooke's mom, He is a compassionate Father who gives direction and peace to me so i can help/care for Brooke when she is not able to do so for herself.
we met with her GP yesterday, looking at the X-ray showing the curvature and observing Brooke, and know that we need to go ahead with the surgery. from my understanding, the surgery (although complex involving screws/rods) is fairly common. Surgery is about 4-5 hours long and she will stay in the hospital 4-7 days (depending on how her body responds). i do know that post-surgery she will be out of it for the most part, but after that she will be able to sit up in bed, and walk by the time she leaves. my concern is, of course, brooke's pain tolerance. she is not able to express when she is hurting or if she needs anything. however, i think the Lord gives us moms a discerning spirit and i'll be trusting that He will give me the insight i need to take care of her.
If we do not do the surgery, we are certain that the curvature will continue to increase and will impede her health in several possible ways. scoliosis can cause several problems involving the heart, digestion, breathing, and her walking ability.
the surgery date is tentative at the moment but may be as soon as May 25. up until then, i'll be posting updates on her health and of course other "raw moments" between daughter and mother and autism.
i am thankful for your prayers.

Sunday, March 11, 2012

health update:the Instrument

"there are some things that are too numerous to me right now, " i wrote in my book a few years ago...and this week i could have penned in that same line.

If you read previously, Brooke's coordination has been causing falls, stumbling into things, etc.. and we have been seeking to find out the meaning behind this. this past Thursday was her orthopedic appointment and after her X-Ray it showed the scoliosis in her back had increased 13% in less than a year to 43%. the doctor firmly and clearly stated, "surgery is needed." WOW. just like that i was picturing that day for brooke...asking questions in my head repetitively like a auctioneer.

leaving the doctor's office brooke had no idea we had tentively set surgery for her, she had no idea of the whys/whats/hows. watching her, i wondered if she was in pain and if she could say anything at all....i wanted her to tell me. something. that moment.

as i watched the doctor measure the % of her curve on the X-Ray, i couldn't help but remember a story i had heard several months prior. we have a dear friend, John Pack, USCG (retired) that was our Sunday School teacher while at WMBC in our area. As a pilot, John would go on rescue missions after rescue missions....and as our teacher, he would come in and share some of his experiences. One day he shared a story that has obviously left a mark on me. He shared as he flew into bad weather...seeing nothing in front of him, having not to trust in his emotions, feelings, or even gut but to trust in the plane he was flying. (a bit freaky to me). however, he said this, "in that moment, you have to trust your instruments." those instruments don't lie..and in the midst of a crazy moment when you can't see the hand in front of your've gotta trust in the instruments. The Instrument (God). wow.

Looking at the X-Ray in the moment, i knew something was obviously wrong...and trusting in the doctor and the x-ray at the time seemed pre-mature for my questioning and wondering mind.

at the moment, we would appreciate your prayers, as yes, we look into this. we still need to talk to her Rett specialist and her GP. it is a bit unnerving wondering how brooke (non-verbal) will do post-operation. i understand that this is a big surgery for her, but will improve her quality of life.

we are trusting in the instrument Himself, Jesus and His lead us and guide us as we care for Brooke.

(For those that don't know brooke has Rett Syndrome and most children do suffer from scoliosis. Most of the falling/stumbling is caused by this neurological disorder.)

Wednesday, March 07, 2012

brooke's day

brooke turned "15" yesterday. it was a beautiful day...the weather was perfect, sunny, slight wind, and after picking up brooke at the school, it was all smiles. previously, i had picked up cupcakes at a local bakery, made lasagna (her personal fav), had gotten 15 colorful balloons for her to release into the sky, and had gotten her a few gifts i knew she would enjoy. it was going to be a wonderful day! i was determined!
i had to take her back early because she was exhibiting behaviors too much for the boys at the children's home to observe. it was a difficult choice, but nevertheless, it had to happen. upon leaving the house to her group home, we also left the lasagna cooking in the oven, her gifts still waiting for her to see, and a box of cupcakes ready to attacked. right before she left we did manage for her to release the balloons. (the pics are on facebook if interested in seeing).
to be honest, i was disappointed. once a year we celebrate someones birthday, the day they were created by the Almighty God...and i had wanted this day to be special for her. i had wanted each moment to be all smiles, to express to her we loved her and that she was indeed special and precious.
i got home from that drop-off just thinking about my day with her, and even 15 years ago, what my day was like with her. then....ever had one of those moments when someone says something to you in a moment when you need it the most? well, i that moment this is what my dear friend said...."you KNOW that this is why we celebrate birthdays on odd days, and holidays on the day after, etc...because we have to. AND BECAUSE WE CAN. we are accepting enough to know that it's about the love all year long-not just on the designated day. tomorrow is another day. cupcakes are always around somewhere. and so is your love."
after i read this, i wept...and thought several things..

she was correct. life itself is a gift and we should celebrate it daily...for we do not know when that life will be taken from us. on another note, autism is crazy...the things you have planned for just one day MAY NOT happen at all because the circumstances surrounding are JUST NOT in our control. birthdays are great and i love celebrating in them, but it made me reconsider that TODAY is a moment to celebrate the lives that are around us. i may have looked at this a bit to serious (i do "think" a lot though)....but i do like the perspective i have now. Today, i'm looking around to see who i need to celebrate. For, tomorrow, i may not get that chance.

in taking brooke back to her group home....over and over and over again she repeated something i've heard for a really long time. she said, "it's ok." each time she said it i was reminding myself that, yeah, brooke, it is ok. then, there was a long pause in the speech. when she spoke again, she said, "I'M ok." now, i've never heard her say that...but it was as if she was reassuring me that she was ok. She didn't know it was birthday, per say, but what i think she did know is that i love her dearly, and i'd do anything in the world for her. what i think she knew is that she was in the midst of an Almighty God that formed and made her and loved her......and she was OK.

Sunday, March 04, 2012


when she walks into a room you know it. she can make you smile...just like that.
her laughter can ignite a downward soul. her words are few but real. her eyes can read you like a book. her tears will drive you to seek answers. she can make you dream, dare, discern the truth. if you'll watch carefully she can allure you to her Maker. if you listen...she'll tell you things only God Himself would whisper in your ear. she craves for dependence on her God...You can see His protection...hear the angel wings whisk by her side. if you risk getting to know...just for a moment...she'll allow you to see things in yourself you would dare to change...and in turn, you'll be blessed.
i know...i'm one.