Sunday, November 8, 2009

Celebration Weekend!

We have had a fabulous weekend. Chappy leaves for Africa on Monday morning, very early. To celebrate his mission trip, he and I enjoyed an overnight "get-away" stay at the Opryland Hotel on Friday. The hotel has already decorated for the holiday season, so there are beautiful lights and decor everywhere. It was so much fun, and a wonderful opportunity for me to honor my husband. I made a concerted effort to make it all about him! So much of the time, Chappy has to share me with our five little "gremlins", and he often gets the leftovers after I have had a long day of meeting their needs. He is such a great husband and father; it was nice to remind him how much he is appreciated for just being him.


Saturday night, Chappy and I took our older three out for a "date night"; we try to take them out at least once or twice a month while leaving Charlie and Hopey with a sitter. Caleb, Lydia, and Natalie are good to help with our two little ones daily; to reward them, we plan "Big Kid Date Night" and do some things they enjoy. A local church raises money for missions by having a swing dance two weekends a month. The church offers a live big band, a good size dance floor, and dancing lessons, too! We attended last evening and danced from 7pm until 10pm and had a blast! Several students from the homeschool tutorial we are a part of attended the dance, so our kids had friends to dance with (and Chappy and I danced with each other). On the way home, Caleb asked: "Mom, where did you and dad learn all of those dance moves?"......Chappy and I laughed and laughed.....we've still got it!!!

"Live life joyfully with the wife whom thou lovest all the days of thy life....."
(Ecc. 9:9)

P.S. Thank you to all who have signed the map below....I love showing Hope her "Prayer Dots".

Friday, November 6, 2009

Regarding Natalie....


I received a few comments regarding my post on Fetal Alcohol Syndrome yesterday and several emails. First, I want to make sure everyone knows I received Natalie's permission (and encouragement) before writing yesterday's post. Now, I want to tell you "why" she wants people to know about her disability; I believe you will find this extremely fascinating:
***
Hope and Charlie have Down Syndrome and the DS physical features make them readily recognizable as disabled children. Upon seeing them, immediately, a certain expectation is automatically placed upon them by others. Natalie, on the other hand, has FAS and has no physical features that would cause people to 'size her up' and form an opinion before getting to know her.
***
Many might think that a blessing, but actually it has become a curse to Natalie. On many occasions, she has noticed people roll their eyes at her unintentional behavior and has wished she had a physical marker like Hope and Charlie do, or like a child in a wheelchair has. As a result, she watches the reactions of people closely and strives to live within their "approval range" which is terribly difficult for her.
***
Put yourself in Natalie's shoes for a moment with me: You are with your family in a restaurant and meet a new family (The Jones') for the first time. Your family decides to join the Jones' for dinner, and you realize they do not know about your FAS. To avoid being embarrassed, you decide you are going to work very hard throughout the meal to act normal, and the way you will gauge your "normalcy" will be through watching the reactions of everyone at the table. Beforehand, you ask your mom to give a certain look (cue) that will help you know you are either doing good or need to slow down. In addition, you plan to watch the Jones' facial expressions closely to make sure they are approving of the words you speak and the way you speak them.
***
Stressful, huh? Before taking off Natalie's shoes, stop to realize that you have not been born with the mental ability to know staring at a person who has a gigantic mole on his nose is offensive, so you stare without realizing it until someone reminds you to stop.....and Mr. Jones has a HUGE mole on his nose. You haven't been born with the ability to know it is not socially acceptable to go to the restroom four times during a meal just because the soap in the bathroom smells fresh after you use it, so during the meal with the Jones' you are up and down like a jackrabbit going to the restroom and returning to ask everyone at the table to smell your hands. Mrs. Jones has a magnificent purse decorated with shiny beads. She puts her purse down right beside you. Throughout the meal, you look at it from time to time and finally decide to touch it. You start playing with the beads, then you wonder how the beads move when the zipper on the purse is pulled back and forth, so you try that too. When the zipper is open, you notice a mirror and wonder if your teeth are still looking clean, so you pull out Mrs. Jones' mirror and start looking at your teeth. Finally, your mother coughs, you look to her and she motions for you to return Mrs. Jones' purse, you promptly obey and then realize going through Mrs. Jones' purse must have been wrong....and you feel sorry. You try to make it up with the Jones', but don't know after turning eleven it is no longer proper to ask people: "Do you want to be friends?", and before the meal with the Jones' is over, you have asked every single member of the Jones family if they want to be your friend. By the end of the meal, although you have watched cues from your mom and facial expressions of the Jones family, you realize your new dinner buddies are avoiding conversation with you and turning away when they see you are about to speak. You get in the car with your family and ask: "What did I do wrong?"
***
Now put yourself in our shoes for a moment. We try to explain rules of acceptable behavior to Natalie, what is deemed appropriate and what is not. But we know, through experience with her, the "rules" she tries to remember and tries to incorporate into her life, just will not stick. Not for lack of effort or lack of work, but lack of ability. It makes us sad for her. However, in the van, after having dinner with the Jones', we would never let Natalie see our sorrow for her. Instead, we would recount the evening in hysterical laughter, telling her how funny she is. Before long, Natalie would be joining in laughing at herself too.
***
To close, the visibally handicapped have problems people expect since their handicap can be seen outwardly. At one time, when I wore one of my Down Syndrome tshirts, Natalie mentioned she would like to have her own tshirt that reads: "I Have Fetal Alcohol Syndrome and I Can't Help It". While I am not as familiar with autism, I would assume autistic children encounter the same problem. Many of them look completely "normal" and some act fairly typical until you spend a lot of time with them.
***
Please use this post to open your hearts even more to the disabled. My hope is you will count your blessings today (and every day), giving thanks to the Father. Natalie was fortunate to escape a Russian orphanage and find a place in our home----we love her (and will continue to love her) no matter what. However, there are an estimated one million orphans still in Russia, living day to day with no hope of escape. Statistics show the majority suffer physical and sexual abuse from the age of four until being released into the unknown "real world" at age seventeen. Upon being turned out of the orphanage, they have little education and no social network of friends. Half commit suicide the first year, and the others are taken into drug/prostitution enterprises.
***
"I lift up my eyes to the hills.....where does my help come from?" Psalm 121:1
If you haven't taken a minute to put a dot on the map below, please do! A good friend gave that to Hope as a gift so we could "show her" all of the prayer dots!

Thursday, November 5, 2009

Fetal Alcohol


This is Natalie.....isn't she pretty? We adopted Natalie in September of 2001 from Russia, fully aware that her mother drank alcohol the entire time she was pregnant. Consequently, Natalie has Fetal Alcohol Syndrome. FAS causes damage to the basal ganglia of the brain which impacts spatial memory and cognitive processes; it causes a reduced size of the cerebellum, a structure involved in balance, coordination, and cognition; and finally, prenatal alcohol exposure is the major cause of impaired development of the corpus callosum (a band of nerves fibers that forms the major communication link between the left and right brain). In the US, two children from every 1000 births will suffer FAS.....in contrast, in Russia, fifteen children from every 1000 births will suffer FAS. That is a HUGE difference.
***
The most tragic aspect of FAS is it is completely preventable and can be avoided. FAS has a broad spectrum of signs/symptoms, some mild and others severe, as do most "syndromes". Many orphans adopted from Russia suffer some affects of this syndrome, because alcohol consumption among mothers who birth these children is prevalent. Oftentimes, the orphans' mother grew up an orphan herself and has no idea how to care for and carry an unborn child much less parent a child. The cycle perpetuates itself resulting in an estimated one million orphans in Russia.
***
Yesterday, FAS looked like this in our home:
Natalie sometimes suffers from frustration because of her disability. Although she has a mild case compared to most, schoolwork does not come easy for her, she tends to be uncoordinated, she is language impaired, and socially immature for her age. To look at her, as you can see from the picture above, you would thing she is completely "normal". Therefore, others' exectations of her are usually too high. Admittedly, even though I am her mom, sometimes my expectations of her are too high too. All of these things combined together cause her to feel anxious at times. To remedy the situation, she started jogging a few months ago with our little Schnoodle, Trudy. Each day she jogs around the block a few times and loves it.
***
A younger girl that lives down the road from us seems to like Natalie alot. Even though Natalie is eleven years of age, she is developmentally more like an eight or nine year old like this little girl, Julia. Julia asked if she could jog with Natalie; so, yesterday around 3:15pm, Nat took off to meet her little friend to go for a "run". Before leaving, I went step by step with Nat about her run like I always do....."It is 3:15pm, and will take you 5 minutes to get to Julia's house. When you get there, ring the doorbell and tell Julia you are ready to go for your jog and see if she still wants to join you. If she does, then run around the block 2 times, take Julia back home, and come straight home. You should be home in 45 minutes to an hour. When you get back, you need to go up to your room and finish your reading for the day, ok?" Her reply, "Yes, Ma'am".
***
I had been gone most all of the day gathering Chappy's necessities for his trip to Africa. When I returned home, I was bombarded by questions from Lydia and Caleb regarding their school work. Lydia, in particular, needed to go to the store right away to get some poster board for a project that was due at her tutorial today. In the middle of the questions, Natalie was preparing to go on her run and I was giving her instruction. (Chaos is a fairly common event in our home--at this same time, Hope was also hanging onto my leg doing the sign for "drink" and Charlie was fussing because he had just seen me and needed some mommy love).
***
Natalie takes off to jog, and thirty minutes later, Lydia and I go to the nearby CVS Pharmacy to get posterboard, leaving Caleb in charge of watching Hope and Charlie for 20 minutes until I return. When Lydia and I get back home, we immediately sit down at the kitchen table to begin her project, and get lost in it. At 5:30pm (and almost dark outside), I remarked that Natalie was being awfully quiet upstairs. Caleb, who had been busy doing his own homework at the table with us, snapped his head up and said: "Mom, I don't remember Nat coming back." He took off bounding up the stairs, and sure enough, there was no Natalie.
***
Lydia called the neighbor to ask if Natalie was still there, I jumped into the minivan to go find her, and Caleb ran out to help me. We found her and brought her home. Caleb, Lydia and I were in a panic.....not Natalie. She couldn't figure out why we were so upset. It turns out, she had been jogging all over the neighborhood, not just around the block, they had even gone running on the trails behind the neighborhood. When I sat down with Natalie and explained my fear and panic to her, she reduced to a pile of tears. She felt awful. She had gotten caught up in her fun time with Julia and had never thought a single moment about home. Calling me never entered her mind.
***
FAS children are not predictable and do not comprehend cause and effect. What happened yesterday is not a "lesson learned" for Natalie, but a lesson learned for mom. Natalie, if given the opportunity, would unintentionally repeat the same action again today and would be just as surprised at my panic as she was last night. (Ever seen the movie, "Groundhog Day"?) The only way to "fix" the problem is to not let Natalie run with her friend anymore OR for me to join in the jog with she and her friend (have I mentioned I hate running???)
***
To give another example of how "cause and effect" is missing with FAS children, each time I go into a parking lot with Nat, I have to verbally say: "Stay with me and watch for cars." If we make a quick stop into a store, I say it when we get out of the car. Five minutes later, when we exit the store, I say it again. In those short five minutes, Natalie lost the reminder. In addition, when walking next to a large truck, I have to say, "Watch out for the mirror". If I don't, she will bang her head right into the mirror sticking out from the large SUV trucks, because she is busy looking everywhere else except where she is walking. It has happened more times than I can count----and Natalie gets into the car with a big blue pump knot on the front of her head---- And on many more occasions, she has come scary close to walking out in front of moving cars as well, when I have been distracted with another child and have forgotten to remind her of parking lot safety. If you were with our family for very long and didn't know about Natalie's disability, you would think I am a nagging mom. These are some of the things you'd hear me say to Natalie several times throughout the day:
***
"Hold onto the rail when you are going up and down the stairs" (EVERY time she takes the stairs)....."Don't leave your pencil close to the edge of the table, because Hope could get it and put it in her mouth" (EVERY time she uses a pencil)......"Don't get your face so close to Hope's face, because you'll cause her to fall down" (EVERY time she plays with Hope)....."Make sure your seatbelt is buckled" (EVERY time we get into the car).....etc. You get the picture. Chappy and I laugh about it; he is married to a broken record.
***
As Natalie gets older, her symptoms become more and more evident. What used to be passed off as: "Well, she is just a little child" can't be passed off any longer. Her peers are beginning to catch on and treat her differently. It is sad, because Natalie is one of the sweetest girls you will ever meet and works harder than anyone in our family. Her determination to overcome her disability is amazing.
***
There are not a lot of resources available to families who are dealing with FAS, because the range of symptoms/severity is so wide. To remedy, a parent has to learn what works for their child through trial and error giving the child only the freedom she has proven she can handle. If you know a family who has adopted a child from Russia, be aware the child will likely show some sign of FAS and be a support to them, be forgiving of their adopted child's behavior, and an encouragement to the family. We should always be reminded, EVERY child deserves a family!
***
This is National Adoption Awareness Month, so I will post about our adopted ones on occasion throughout the month. Adoption is a beautiful picture of our salvation. As believers, we are all adopted through Christ.....before accepting Him, we are needy orphans, full of defects and disorders called "Sin-Syndrome". But lovingly, our Father has made the biggest sacrifice of all. He died for us, taking our "Sin-Syndrome"away, upon Himself. No longer orphans, He makes us new and calls us His own.
***
"He predestined us to adoption as sons through Jesus Christ to Himself, according to the kind intention of His will...." (Ephesians 1:5)
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Don't Forget to Add Yourself To the Map Below!!!

Wednesday, November 4, 2009

Duct Tape Anyone???

Chappy and I are going out for the day to gather supplies for his trip to Africa. In addition to making sure his toiletry items will meet the FAA Guidelines and will also pass through customs when landing in Africa, we will be picking up Duct Tape. I have included video of the Black Mamba snake, because he is the reason for the Duct Tape. There is a chance Chappy and his travel companions will be spending an evening out in the bush near Kruger National Park where the mission organization has an orphanage. If so, they will use duct tape to wrap their clothing securely around their bodies and also tape any openings in the nets that will be used to cover them to prevent the Black Mamba from slithering in and biting them in their sleep. I've got one question: "Who's going to be sleeping?"

P.S. Thanks to a professional blogger friend of mine (Ondrea), I now have a map below. I would love to see where people who are praying for little Hopey live. The gratitude I feel thanks to your many prayers overflows my heart.

Tuesday, November 3, 2009

We Are Back from the Cardiologist Appointment



The first photo is Hope looking away from Dr. Doyle, her cardiologist, in hopes that if she ignores him long enough, he'll go away. The second is Hope's happy, but still a bit apprehensive, face when there are no docs or nurses in the room. She is still very afraid when we pull into the Vanderbilt Children's Hospital, but who can blame her?
The report: Hope has a little backflow issue with her aortic valve and the "Love Balloon" remains an issue as well. We will take her back in six months to evaluate for changes; if there are none, she will not have to be seen for another six months.
On a positive note, we met a terrific family at the hospital this morning who also has a four year old with Down Syndrome. His name is Ben. Ben's father is a Delta Ranger, Special Forces, and has served our country in the military for 24 years. I mentioned the club a parent automatically becomes a part of when he/she has a child with Down Syndrome in a post a few weeks ago. It is amazing, but true. Meeting this family from Kentucky today was like seeing old friends we have known our entire lives. When you have special needs children in common, there is a unique bond that is created.....it is just one of the many perks, I guess.
Thank you for your prayers and thoughts today. We will continue to walk in faith daily for our little girly girl.
"Now faith is the assurance that what we hope for will come about and the certainty that what we cannot see exists" Hebrews 11:1

Monday, November 2, 2009

Cardiology Update after Lunch!

A big day is ahead of us. We meet with Hope's cardiologist at 8:30am to find out how he plans to follow her "Love Balloon". The appointment will take awhile, because I'm sure he will want to do some tests, so I plan for us to return home after lunch.....I'll post results then! To lighten the mood, I have attached a video of our happy red-head, affectionately called "Cha-Cha".

"The Joy of the Lord is our strength!"....expecting a good report.

Sunday, November 1, 2009

Quick Update

This will most likely prove to be a busy week around the Hollis household:

1. Monday, I am sending my book off for publishing (remember all proceeds from the sale of the book will go toward ministry/missions) and I am meeting with Hope's pre-school teacher about arranging homebound speech and occupational therapy for her until she is released from the cardiology team and allowed to return to preschool;
2. Tuesday, Hope has her cardiologist post-op visit where we will learn the cardiac team's plan for following her "love balloon";
3. Wednesday, cousin Amy is coming over to watch the kids so I can go with Chappy to purchase some necessary items for his Africa trip;
4. Thursday, Chappy is out of town on business for the day, so mom's in charge;
5. Friday, Chappy and I have planned a much needed overnight get-away (more details later);
6. Saturday, Chappy and I will be taking our big kids out for a "date" to dinner and for a night of swing dancing at a local church fund-raiser;
7. Sunday, we pack Chappy for his 2 week Africa trip and say our good-byes;
8. Early Monday morning, November 9th, my precious husband travels across the globe for mission work.

Whew, I get tired just thinking about it! And in the middle of all of the things listed above, the regular routine of life must go on too, of course......homeschooling, violin and guitar lessons, Charlie's therapy, housework, etc.

In preparing for Chappy to leave, I want next week to be PERFECT! One of the things I am planning to do is cook some of his favorite meals. One of his favorites is a soup I accidentally threw together one night several years ago, and I simply serve it with cornbread. I am going to make it tomorrow evening, and for all of you cooks looking for an easy crockpot recipe, here's one for you to try:

soak pinto beans overnight (you want enough to fill half of your crockpot, so the amount really depends on the size of your pot)

Add the following to your crockpot and cook on low all day long:
1 lb. of cooked turkey sausage (crumbled)
frozen or fresh corn ( approx. 2 cups)
1 small onion chopped
large can of whole tomatoes
8 oz can of tomato sauce
pinto beans
enough chicken stock to fill the rest of pot
chili powder to taste

Next post will be a Hope cardiologist update. We are praying and believing for GOOD NEWS!!

"I am the Lord that healeth thee". (Exodus 15:26)