What I notice is that EVERYTHING is fast approaching! Fall is just around the corner and there are many new family events on the horizon not just for me but you as well. I sympathize as we just try to figure out when to time the changing over from summer to not so summer clothing in the wardrobes! I wanted to take a minute and post our fundraising page for the local chapter of Family Connection who does an amazing job of unifying our community for those with special needs. Somehow I think we ALL fall into that special needs category but their criteria for membership is generally genetic so they have not expanded it to the world just yet...probably waiting on further information:) Anyhow I created a link to her fundraising page and if you can spare a fancy cup of coffee in her name I assure you Family Connection does a fab job of managing those funds here in the community. Buddy walk is a nationally recognized day of celebration for those who have Down syndrome to be recognized as VERY giving members of society. I could not agree more. Thanks for ALL the support that has come through for Marina and Caylyn over the years. None of it has been in vain and I am utterly grateful.
Marina's Buddy Walk 2012
or you can visit our widget link in the column to the right->
Tuesday, September 18, 2012
Friday, September 14, 2012
I am always amazed when I open this blog and realized how much time goes by between posts. I used to post all the time when I was waiting for Marina to come here. Now life is so busy I let too much time get between posts. I am thinking perhaps I need my tonsils and adenoids out too. At least my ears cleaned out from being impacted with wax...because it has changed Marina's life once again. She struggled to heal and her throat was very tender for more than two weeks. She lost about 5 pounds (another reason I may want this done). But school has started and this child can HEAR better. This child can SLEEP better at night so her days are beautiful and not fraught with exhaustion. She has not had one runny nose since the surgery, which for Marina is a huge change...the child was green from day one. But that is gone now. We have a sleep study on monday but I think they will see a marked improvement, though some of the apnea is still present. Anyhow all of this amounts to the fact that it makes her happy to feel better and to hear. She has taken the high dive to learning and is in a perfect swan formation. She loves school so much that on Sunday she lays her clothes out after questioning me that she is indeed wanting "more" and will she be riding the bus on Monday? She has learned her alphabet, her colors and her numbers. Last night she was in need of something to do and wanted to play on the computer. I found a websight to a California public school math program for kids pre-k to 12th grade--Evan often does the second grade link so it was already on the "list" of things we can do. I decided to pull up the pre-k level for Marina since she was not having much luck with the game of solitaire she had started over and over. I thought it would be entertaining. I did not expect her to play for an hour with such amazing success! She followed the avatar instructions and listened to the rules, then played through every problem on three different levels of achievement. Wow! Wednesday she was honored at school as a Kiwanis Club Terrific Kid, today she brought home a note that she was in a fight on the playground....yep! That's my girl! It is so encouraging, no, a better word would be blessed. I am blessed beyond words to see her so happy. She is learning, and growing and "getting it"! Life is coming to her and at her and she is catching it and loving it. She is free to be Marina with only small obstacles such as reality and gravity. Each day I get notes from her teacher. So far they have been all about how great Marina is doing in school. I bet! Marina is putting in another 2 to 3 hours practicing writing when she gets home! She can tell me which word says mom and dad, Evan and Kiki and Sashi (the dogs). The other day Marina painstakingly wrote the letter K and came running to me to alert me that she had Kiki's name all figured out~I thought it was a house fire at first but once she calmed down we figured out the story. Her speech is still a struggle for her but she is getting more clarity in some of her words. She can say dinosaur but school still starts with P, like pool. Still, we are getting there. The animation she displays in her descriptive arm waving is hugely helpful and we rarely miss the point:) Evan is enjoying home-school this year. He is doing much better now but that first week had me questioning my judgement. After about 15 minutes of work in the morning he would ask if we were done. HA! But I have learned if a kid wants to be done, then even if you keep talking, well, they are done. So we break it up. Sometimes I just ask him to go ride three laps around the house on his bike or go find a rock with mica in it. It is as much for me as him. He is learning to cook a meal by himself using the stove and involving more than peanut butter and bread. Nutrition and manners are actually on the front burner as well even if knowledge and implementation are not always connected yet. He is happy to be home. I know he really struggled after Marina came because he lost some ground for his very existence in his eyes. I get that. So he gets this year to re-bond and realize that he is so very important to me and that God has a purpose that was only designed with Evan in mind. Evan won't be little much longer. I already see where he wants to be big but he is too little, and then he wants to do something little and he is too big. He is really smart but I think his confidence is shaken somehow and that is the primary goal to address. Tully brought home a plastic pellet bb gun as a surprise gift and Evan is LOVING that! It comes with a ton of responsibility and Evan has done exceptionally well rising to the occasion. I have a couple field trips planned--day trips to the Franklin Mint in Philadelphia and the monuments in DC...the airline job is a bonus when you home school:) I have two amazing opportunities coming up in October. I was chosen out of a lottery to attend the Captivating "boot camp" at a ranch in Colorado for 4 days. Since reading the book Captivating nearly ten years ago or so (can't remember exactly) I have been a fan of the written works of John and Staci Eldridge. The way they write and present just really speaks to me. Anyhow I have always wanted to go. And now I am. After signing up for that I took some time and filled out a scholarship application for a writer's conference in Albuquerque at another ranch. The conference is a really big deal and a really big opportunity for me. The scholarship was made available by Cecil Murphy who was the ghost writer for Don Piper's 90 minutes in Heaven, loads of other books and several dozen of his own. I was just notified that I was one of the recipients of a full scholarship and so I will be taking my rough draft book and hauling it to New Mexico on the wings of prayers and hope and apprehension. Those things usually go together I find. All I know is that I am going to have to dig out my boots for this next month of off road journeys since I keep being reappointed for the cowboy section of the country. It is an exciting time for me. I had a feeling October would be about "change" for months now. Seems it is coming to fruition. I have been in a "freelance" bible study where we bring no agenda to the table but a core group of 7 women meet once a week and find that we are generally on the same path of discovery so we share what we have learned for the week. It makes for a really amazing picture of how church can truly be--not the building but the total fellowship involved. Not to mention that when God speaks to a person uniquely it is a part of the whole picture/puzzle and we are to share what we know with each other. We have been through the Lord's prayer one verse at a time, who the Houses of Judah and Israel are, how we got grafted into God's story and how RELEVANT the Feasts of the Lord are. The old testament is a story of how the new testament is "played out" so really there are no uber surprises in there other than the way everything fits together. Turns out angels and their counterparts are real, and the entire time of meeting reiterates that God is anything but boring and stiff-necked. This is a time for Harvest and a time for knowledge gained. Having given this some effort and I have found that off-roading through the bible is one serious Indiana Jones type event. SO very much to be discovered and it is just flat out amazing. SO overall everyone is ok. OK is a good place to be. I challenged God 4 years ago that He would allow me to see joy again and I doubted I would. I am happy I was wrong.