Today was the Buddy Walk in St. Paul, MN. Now referred to as Step Up for Down Syndrome. We were so glad to see RR there handing out brochures. I made this guy give it back to her and re-hand it to her. She handed out tons of them!!! Yay! It is just too overwhelming being there with all of those cute people in one place!!! I met her son from Serbia. What a doll. This was Stas' first walk...even if we didn't walk and stay back to feed the two boys....oops...I just realized I forgot pictures of Stas and Ricky at the walk. That was foolish. Oh well!
When we were in Zap, you may recall we met Valentyna...let's call her Val because I am sure I mess up her name. I call her Valya too, but that is confusing with Halya.....
Val lives in Wisconsin, is from Zap. Her family lives in Zap. She is there through November giving/taking Medjugorie tours/pilgrimages. I am hoping my friend who is there gets to meet her since they will stay at the same place! Anyway, while we were over there, one day she was talking about her friend in Wisconsin who has this organization for Down syndrome awareness...Footprints...and talked about the symbol of the footprint and we knew just what she was talking about as we had these shirts with us in country for just that purpose! That was fun.
So today, we saw her friend at the walk. Here is a message for Val, Valya, Valentyna from her Wisconsin friends :-) I will have Fr. show it to her..... Goodbye for now!
unblemished---adj. not blemished or tarnished in any way.
That is my Stas. He is such a pure soul. I don't know how many times a day we say how innocent he is. All of these kids have a special nature, but, oh, you know, stubbornness and attitude have a way of creeping in. While Stas' first three years of his life weren't all that they could or should have been...he was preserved in a certain way too. Now that my kids have a hold of him, I suppose that should change real quickly. Darn.
Unplugged--adj. (of a performer or performance of popular music) using acoustic rather than electric instruments.
Ricky loves music. Especially his guitar. In this case, he scored. He got down to the music room and got the big boy guitars, not his little Woody guitar. I think he does a darn good job.
Unmedicated---adj. My family after they have finished treating 6 people for h. pylori and really tired of it!!!
Okay, truth be told at any given time someone is taking a medication, right? But, we are finished with the antibiotics anyway....still have to continue with the Prilosec. We retest in 8 weeks to see if it is gone for good . Another reminder...have you kids checked (not the blood test!) for this right away when you get home and watch out for the gooey, oh so wonderful kisses until then. They are way too irresistible however!Those in the bowl we are finished with...yay!!!
This POST is from a family's blog that is in EE right now to bring their son home. It has been a long journey to adopt a boy from an institution that has never let a child go before. They pursued...and should be bringing home their son very soon. It is beautiful. See their blog here (Micah Six Eight) and please pray for them! A Woman's World by Rob (Aaron's dad!)
I have said it before: the world of special needs adoption is a woman’s world. If you don’t believe me, try reading some adoption blogs. Take just one cautious step into this marshy bog of sentiment, and suddenly you’ll find yourself thigh-deep in a muck of chatter about breast pumps, toddler fashions and the contents of dirty diapers. There isn’t a man alive who wouldn’t rather hang himself to death with his prison sheets than read these womanish adoption blogs.
On the other hand, these children need families, and that usually means two parents. How do we men come on board? I only know how I came on board: My wife talked me into it. I carefully weighed the options, then firmly and decisively led my family down the road toward adoption.
To explain, I have to relate a bit about how I feel about women: I love women. In my opinion, there isn’t a single woman on earth who doesn’t have at least some God-given beauty-- although a few hide theirs most effectively. And I especially love my wife. I find her endlessly fascinating. Every good thing I have in my life, I have because of her. Everything that matters to me matters more because of her. I love life only because of my love for her and my love for my children. No other earthly thing signifies-- no accomplishment, no amount of wealth, no pleasure or diversion. I knew God before I was married, but I understood God’s father heart (a little) only after I became a husband and a father.
When my wife became interested in special needs adoption around last Christmas, I resisted. The pictures and the stories on the many blogs she followed didn’t move me in the same way they moved her. I’ve always given liberally to church and charity, but I was very reluctant to bring a stranger into our home, our only refuge from work and the world. When I’m home, which is little enough, I want to rest. And I already had bookkeeping, editing and business chores chewing away my home time, plus my home schooling duties. Besides all of that, we both knew that we were in no financial shape to undertake a hideously expensive international adoption.
Yet only a few weeks after all of this came up, I found myself agreeing to pursue Aaron’s adoption. I told Julia that I would “follow her heart.” I said that after I realized that every good thing we’ve ever done has come from following her heart, her good woman’s heart. I couldn’t let myself be the fool who stood in her way and prevented her from doing what I was sure the Lord was leading her to do.
If the path of our lives together was left to me, I would do nothing but work. I would work for twelve hours every day, six days a week, thinking about little but work all the while, and go home exhausted. I would come to view my time off as unproductive, wasted time, and I would begin to work half days on Sundays, too. I’m already a long way down that path. My work is tiring, but satisfying. I don’t have the energy for much else.
My wife is different. Her heart is more like God’s heart. She is more in tune with the Holy Spirit. She naturally cares about the things God cares about. She loves what God loves, and hates what God hates. Where I overlook people and their needs, she cares for them and frets over them. Where I assume that people are beyond help, she finds ways to help. Our family leads a much more fruitful life when we follow her heart than when we follow mine. We lead a more Godly life, a life more pleasing to God, when we follow her heart. And we experience more of the love that God has to offer when we follow her heart.
I picture it in this way (I may be borrowing this illustration, I don’t remember): imagine that all of God’s people are swimmers in a broad, swift stream. The stream is God’s will, and it flows toward the accomplishment of God’s purposes. People like me tend to stay close to the banks, where the water doesn’t move too fast. We hang on to the edge to keep the raging will of God from pulling us faster than we have the courage to go. Sometimes we even try to swim upstream, against God’s will. People like my wife, on the other hand, are always pushing away from the banks, out into the center of the stream. They want to be where the action is, to see God moving in the world and move with Him. We’re all going downstream to the same place, because God’s will cannot be denied. But if we want to experience more of God, we have to move out into the center of the stream.
That’s how I see this adoption: we’ve pushed out nearer to the center of the stream of God’s will. With God’s help I followed my wife’s heart, I took a step in faith, because I wanted to experience more of what God has to offer. I was curious to see what God would do. And God has not disappointed me: He has aroused compassion in the hearts of hundreds of people who have helped to bring Aaron home. Through them, He has raised all of the money that we needed. He has saved a precious little boy from being Lost forever. He has moved the heart of our skeptical judge.
And before any of that, he chose the perfect little boy for us. This was the thing that worried me the most before we got here: who was this little boy? We committed to adopt Aaron based on one smiling photograph and a short description that turned out to be about 75% right. All of our efforts to learn more about him before we got here came to nearly nothing. I even doubted that we’d be able to find him when we got here, because there seemed to be so little information available on him. When we finally found him, though, it took us only a few minutes to discover that God had not steered us wrong. On the second day we knew him, we were already making plans for his care, plotting his life with us as if he were one of our own. Now that we’ve been with him for several weeks, we smile fondly at him and admire his features, just as we do with our own sons. We take pride in his little eccentricities. We couldn’t have wanted any other child this much. God made the perfect choice for us.
Yes, our adoption has been hard, harder than it had to be. Maybe that makes it even better in the end. No matter what happens from here on, I think I shall always consider Aaron’s adoption the best good deed of our lives.
Off to the first day of school...for Ricky...not Stas. Stas and Ricky will be in the same class together, but we figured we should finish the h. pylori treatment first. Ricky did well and was as happy as could be when I picked him up. It is funny....but he does more after being at school. It is amazing because heaven knows there is plenty of stimuli and interaction at home, but school must do something different for him. That is great.
Ricky checking out his locker
I was very weepy bringing Ricky and seeing where it is that Stas will go. It really broke my heart. First, Stas is very oral so all I could think is GERMS! He will get everything there is to get, right?? On the other hand, he needs the opportunity to learn. Seeing what it has done for Ricky, I want him to have a variety of experiences. He is like a 6-10 month old in many ways, and maybe at best an 12 month old in others. The teachers said don't worry...I'm worried.
I was weepy all day. I mourned what he missed the first 3 years of his life.....really badly. I really think they cared for him the best they could. He was in a high need group. He was not hearing and it was never detected and it probably wouldn't have mattered if it was detected b/c I don't know if they would have done anything different. I would guess that they would say he acts the way he acts (tapping or banging on things and putting his ear to it, or speaking nothing but mamama, bababa, geegeegee and dadada) because he has DS and isn't capable of anything else. That isn't so. I can hope with tubes his world opens up...hopefully a lot....but if not, at least a little.
Anyway...I can't help but think, ALL DAY, about the other kiddos over there across the sea that are still there and will still be there a long time from now without a family to love them. I know God loves them but I ache at the lack of appreciation for their goodness.
Stas checking out Ricky's locker
Working together....that is pretty good!
On a happy note....look who is taking steps...ever since his tubes!!!!!
Finally, in person, I met my friend Jodi last night. It was an exciting moment. Boy did we have some exciting things to talk about!!!! I wish all of you blogging lady-friends could have been there ;-)
We had a benefit at our house with Glen Phillips from Toad the Wet Sprocket. The money was raised to support Healing Haiti. Awesome organization and very good friends of Haiti orphans. One more reason to love them. We raised $19,000+ just for last night and are so pleased. Ricky was a riot with Glen. He LOVES to sing Glen's songs (Walk on the Ocean, All I Want and Somethings Always Wrong) ...okay, he signs the last word of every sentence and dances around like a nut!!! We do this every evening when we are washing dishes and cleaning the kitchen. Ricky plays his guitar and sings into anything resembling a mic. Last night, he sat in his private lounge chair and watched the concert....as timid as could be. When Glen came in we brought him into the activity room and showed him Ricky's dancing. So there was Glen watching Ricky sing Glen's songs....funny moment. When Glen would join in the singing live Ricky would drop to the ground in either a moment of amazement or utter humility....I don't know!
THEN....today we heard Five for Fighting's John Ondrasik in person in Minneapolis. We are trying to get him for next year!
Dan's eyes closed!
My eyes closed!
John signing Ricky's guitar.
This is for all my blogging friends...I had to laugh..."have you read my blog today...300 million little USA's"
I'm thinking I'm even missing a couple! Color coding is a must. This is just h. pylori treatment...not our other meds. To clarify...Stas came home with it. I treated it improperly. (...didn't know the Prilosec is a MUST--he threw it up every time I gave it to him---everything in his stomach---I though it was only for symptoms, not treatment, so I stopped it--only 50-60% effective plan to kill h. pylori without Prilosec!) In the meantime, thought we were okay and we kiss and blow raspberries in his mouth, Ricky and Stas and I share food, etc....and we ended up with 6 of us total with it. Doesn't help that I tax my kids food and take a bite of everyone's food---BIG Goverment! Maybe I will lose a few pounds by not stealing my kids food!!
HAVE YOUR CHILD CHECKED RIGHT WHEN THEY GET HOME FROM EE!! You can eliminate the whole family needing to treat. And don't share your saliva until then :-)
One more thing....gross....but, do stool checks not blood tests. My recommendations. They aren't as effective. I had a negative blood work. Not convinced. Stool was positive. (You didn't know stool could be positive, did you?)
Stas had surgery today to have PE tubes put in. We had an early trip to the hospital and he was so pleasant about it.
He had tubes and circ and it all went well. Great doctors. We were unable to get the ABR test done for the hearing but we will wait and see if he needs anything else to be sedated for and do it at that time. The circ isn't bothering him a bit....yay!
Here he is at almost 6pm and we are doing all sorts of "tests" (very official of course!) and he sure hears better. Unfortunately we won't know for a while just how he hears until he starts copying sounds or saying something other than "mama" and "baba." When I rub my fingers together behind his head he turns to see what it is. And, that is with all sorts of dried blood filling his canal. Sounds good huh?? Time will tell but I am somewhat optimistic. Unfortunately, when fluid is there for so long it causes anatomical problems from the prolonged pressure...we will see if that is the case with Stas.
Oh, did I mention that I love him...and I would like 100 more of him? Please pray for hearing...it's an extra challenge to learn without it.
Now if only I could get my voice off of that video...blasting on the cam. Turn your volume down so you don't have to hear me ordering Lizzy around to get in position. Poor Stas was a prop and it was lunch time. I was determined to get that sweetie on video.
This is sweet AnneMarie. I wanted you all to see her in action and see just how beautiful she is. She always had her eyes locked on us. She is very observant. Did I mention I love her?
My sweet Ricky turned 4 today! Yay! Lizzy and Maggie made Cookie Monster and Hopkins (from Signing Time--his sign language video---OBSESSED!) Aren't they cute?? He thought so. I remember waiting in the labor and deliver waiting room for him to be born. I was so excited and so nervous. What would he look like? Would he be sick? How was his heart? How will my life change?
He has enriched our lives (all of us!) in ways that I can't even express. And now Stas...oh wow. Did I mention that I would like 10 of these sweet kids?
Happy Birthday Ricky!!!
And then Stas....he is so cute and he has the hugest mouth!! Check this out. If you zoom in to this picture, you can see his tonsils perfectly. Yes, the ENT would be happy and I see what she means about keeping and eye on those buggers. Please don't be bothered with the playpen. After living in a crib and playpen for 3 years I feel bad putting him in it....but when it's bedtime, and we are all eating cake and ice cream and he has a little mind of his own and can disappear in an instant...we use the playpen. Then again, maybe that is why they did it in the orphanage...minus the cake and ice cream. Look what cute little things I find around my house..aren't they the cutest things ever?
Ricky So...Dan's brother had Down syndrome. He was born in the late 1950's. He died at the age of 18 when Dan was 12. He had a heart condition that these days would be corrected. They didn't do heart surgery on people with Down syndrome back then. Anyway, funny that Molly (my mother-in-law) had 2 very good friends have children with Down syndrome also. Isn't that neat? This is Bill (formerly Billy) who stopped by to meet our newest little guy. His mom was so excited and couldn't get enough of the boys. Bill is so very sweet. He is 40.
This is so exciting. Stas was not able to chew anything when he first came. Everything had to be soft of liquidy enough to swallow without chewing. We have pureed every meal...adding water, applesauce or summer bunnernut squash soup. We have been practicing chewing (via learning from Speech Therapy) to teach him to strengthen his jaw and to chew. Look what happened this afternoon!!!! My superhero! He is so cute....now if we can get rid of the h. pylori we can kiss him again....I have it too. It stinks (no pun intended!). I have to get EVERYONE'S poop today. Wish me well. Jealous?? If you are coming home with a little one from EE, PLEASE have them checked right away for it and don't let it go without aggressive treatment....Enjoy the video! I am.
I am the mom of 8...it just happened! When we felt as though our plate was full, God dished us up some dessert. You know...there is ALWAYS room for dessert....right? Along came Ricky, and nearly 4 years later Stas. I LOVE Down syndrome. If people knew what our family experiences with our kids with DS, they would envy us :-) Not bragging, just saying.