Saturday, November 28, 2009

Black Friday

A long, good day.  We headed out about 9:30 this morning...I know...not serious Black Friday shoppers.  There just weren't any deals that I thought warranted getting up at the crack of dawn.  First, there were four of us, me and all three kids.  We found Evan a pair of jeans pretty quickly and my nephew came and rescued him from the mall.  He only went with me because the boy did not own one pair of jeans.  He was wearing shorts every week day and khakis to church on Sunday.  The only thing that will likely change is he will wear jeans on Sunday....once in a while he will otherwise wear his jeans. He definitely has his father's thermostat and not his mother's.

Jessie did amazingly well for how long we shopped.  Got to the mall at 10:00 and didn't leave till 6:40.  Thankfully, we had borrowed a stroller.  She had gotten too big for the one we had and we haven't yet gotten a special needs stroller, which I think we will break down and do hopefully very soon.  She just doesn't have endurance for a lot of walking or standing.  She gets in and out every couple of minutes.  Takes a little rest, gets out a while.  The main shopping we did today was to let Jordan pick out some clothes for me to get her for Christmas.  I really wish I could surprise her but truly it works best to let her pick out and try on most of her clothes.  We did that last year for the first time....she's been asking me for days if we could do that again this year, that it was one of her favorite gifts last year.  We don't buy bunches of clothes, we are pretty thrifty, so we don't usually shop for and buy several pieces at once, so this was a real treat.  I enjoyed it too. 

Jessie of course likes to think it's all about her (which it usually is, but today wasn't) so she had to try on a lot of clothes Jordan took in the dressing room.  She'd tell me, "I need a medium" or "I need large"!  Truly, what made the day such a success in Jessie's eyes was getting to eat Chick-Fil-A twice in one day. 

We went to the movies straight from the mall to see THE BLIND SIDE.  We were meeting friends there, we were inside looking for seats while they were in line to get tickets.  It sold out just before they could get tickets so we traded our tickets for the 9:00 showing.  This confused Jessie; we had some serious talking to do to get her to believe we were coming back to the movies, this same day, that we were gonna come back so we could get to sit with Joshua.  Whew! So we went to Atlanta Bread and got something to eat till time for the movie.  It's been a while since I've seen a movie I loved that much.  I hadn't known anything about the story till the movie came out but now I want to read the book.  I've said before that I always like to know everybody's "story", why they do what they do.  So, I want to read the book and get "the rest of the story".  When the movie ended and we stood up, Jessie wasn't ready to leave and was saying something I couldn't understand at first.  Then, I realized she said she wanted to clap.  Guess she was telling me cause she didn't want to be the only one. We clapped together and she said, "Michael got to play football".  For a minute, I was a little embarrassed that we were the the only two people there clapping.  I quickly got over it, the feeling of embarrassment was replaced with, "Wow, Jessie has a way of taking the simplest, most ordinary thing and making it extraordinary".  From almost the very beginning, she has brought me outside of myself in a way that otherwise probably would  never have happened.  Just one of the ways she has grown me. 

On a regular basis I continue to thank God that in giving us Jessie, He met His expectations, and not ours.  As I say at bedtime when we pray together, "Thank you God for Jessie, I love her so much.........."

Tuesday, November 24, 2009

Jessie and Gracey, a sweet friendship

Jessie has a friend from church, Gracey, that she dearly, dearly loves and nothing in the world makes a day better for Jessie, than to get to play with her.  They really only started to play together during the summer and since school started they haven't been able to play but a couple of times.  Yesterday, Gracey and her twin brother Grady were here with us all day while their mom was at work.  They are both very sweet children that you enjoy having around. Grady entertained himself with cars and our old Super Nintendo Donkey Kong (we still love that old game!).  Jessie and Gracey played Barbies; often Ken was in the "hopsital" and one of the Barbies were taking care of him. They played Dr., Jessie was upset that I wouldn't let her have the oral thermometer, that she had to play with the one that came with her Dr. set that goes in your ear.  She doesn't like to "pretend" anything that isn't just like the real.  They strung bead bracelets and made art with glitter and glue (that was a mess!) and they really had fun with that. They danced and twirled and took turns twirling each other.  For 7 hours, Jessie was absolutely in heaven.

Jessie is 8, Gracey is 7.  Gracey can understand much but not all of what Jessie says, but like us, she has learned to keep going on with the game if she doesn't understand every word.  She truly loves Jessie.  I know that for several more days (and they are out of town now for several days) many times a day Jessie is going to request Gracey's presence.  "Gracey come to my house and play?", "I go to Gracey's house and play?" and be aggravated each time she is told that Gracey is on a trip. Lately, every paper Jessie writes or colors on usually has Gracey's name somewhere on it.  She has learned to spell Gracey's name.  Gracey draws Jessie pictures and writes sweet messages on them, that she loves her and that she's her best friend. 

Jessie is such a social little girl and wants to go somewhere and be with people every day.  She hasn't had a lot of true friendships.  When she was younger I went through a terrible time; she would be friendly with other children, and they didn't want to play with her.  As Jessie has gotten more verbal that has gotten much better. 

I know that Gracey is going to outgrow the things that Jessie will continue to enjoy for longer.  In some ways it is even hard for me to enjoy, for worrying it will end tomorrow.  For today, I am very thankful for this special friendship.  It means so much to Jessie and to me.

The healing power of love...and thoughts of redemption. A lesson we learned from our dog, Boo.

No, you aren't on the wrong blog.  You won't often read a post by me about our animals, but our dog, Boo, has a story worth telling.

We had a small dog (Short Stuff) that was dearly loved by both Jordan and Evan, but was Jordan's constant companion.  When Short Stuff died after being hit by a car, we waited several months to get another dog.  By the time we went to the Humane Society my kids were really wanting to have another dog...another dog that would fill that empty place in their hearts left by Short Stuff.  Jordan had decided that she wanted to adopt an ugly dog, a dog that otherwise wouldn't have a home.  That's my tenderhearted girl. I wanted our new dog not to be too terribly large, as it would be an inside dog, and hopefully not to shed too terribly as I'm allergic to dogs...all that extra hair every where causes me problems.  We had called the Humane Society and asked if they had any "not too big" dogs.  They told us about Boo, and we decided go see her and see if she seemed a good fit for our family.  Boo is an Italian Greyhound, or at least she looks exactly like the pictures of them in a book.  What we were told about Boo was that she needed a special home, someone who would be patient with her, who wouldn't expect too much right away.  She'd already been adopted one time and had been brought back!  She had been one of 15 dogs at a breeders and while we don't know if she was ever abused, she was most certainly neglected.  When the Human Society got her she was over a year old, but had no name, she was puppy #2.  After the first owners brought her back, someone from the HS fostered her, took her home for about a month, just to be sure what they could tell prospective families about her.  Thus...we were told she was very timid, afaid, not to expect too much too soon...but that she did not bite out of fear.   When we came to her part of the kennel, she was through a little door to the outside, and when we bent over to try to look at her, she started walking in circles it made her so nervous.   A volunteer at the HS went outside to get her for us and when we held and petted her she became so nervous she pooped all over.  Well, she wasn't ugly, but she was a sad case.  Just what Jordan was looking for!

When we brought her home, it was VERY slow going.  In fact for several months my kids felt a little jipped like they didn't have a "real dog".  For the first week we allowed her to hide a lot.  She would go in closets/secluded places and didn't want to come out.  When we took her outside, we quickly figured out we would have to use a leash...after Evan had to crawl under the deck to the farthest corner to pull her out when she hid there when we put her out to go to the bathroom.  She hunched over so when she walked, that when she later began to walk upright, we couldn't believe how long legged and tall she was.  She slept in the bed with the kids but that was the only time she sought specifically to be near any of us.  After several days to a week we started closing the closet doors and making it where she had to come out amongst us. She picked one spot on the couch she liked, that she thought was worth coming around for.  If someone was sitting there she would walk around and around until they'd move over.  She would allow us to pet her, but she didn't seek it out and didn't express in any way that she enjoyed it or wanted more.  There was no rolling over to get a belly rub, no licking us or rubbing against your hand as if she wanted more.  It was really strange.  She had no "expression" on her face if you know what I mean.  When we bought her a rawhide bone she didn't lick it or acknowledge that she knew what it was...same things with other treats and toys. The expression we used was that she wasn't a "real dog". 

Little by little, and I truly do mean little by tiny, little steps, we began to win her over.  It is unbelievable the lengths we went to show this dog love.  Let me preface all this by saying...ever since we had kids I have just not felt that I had time to spend with a dog..or any affection left over for them.  My kids keep me so busy, there was just nothing left over for a pet.  I always loved pets before, but when kids came along, they really took a backseat.  Well in all the winning over of Boo, she won me over.  I love that silly little dog.  We have had Boo now for eleven months.  There are some things we are still waiting for, but the progress she has made ever so slowly is so amazing to us now.  When I let her back in the house when she's been outside, she's jumping all around on my legs with excitement.  She LOVES for us to rub this certain spot on her back so when she comes up to us she turns immediately around to back up to us.  She licks us some now, we feel so special when she does!  We have taught her to play!  We will tease her with a sock and she loves to play with us with it.  The other night when we stopped, she went to a clothes basket of unmatched socks and pulled one out to play with.  Early on Boo never seemed completely relaxed, and while I think she still feels a little vulnerable if you push her over to rub her belly, she enjoys it enough now that she tries to lay there for a minute before hopping up.  She has the softest expression on her face now when we pet her, there is no mistaking that she enjoys it and keeps coming back for more if we stop.

When we 1st came home with Boo, we got online to read about her breed.  We read that Italian greyhounds are timid by nature and tend to be a little "catlike" in their personality.  We were really worried that she would never become the loving companion of a dog that our family had been looking for. For several months Jordan and Evan wanted to go back and get another dog, one that loved them back.  Even though we didn't expect immediate change and were willing to be patient, she took all the patience we had.  Now, almost every day it seems, Jordan and I talk about the difference in her, and are amazed the more and more she seems like a "real dog".

I truly believe we have learned an important lesson about life by loving Boo.  For so long we had to love her, getting little in return.  I looked in the online dictionary for the word redeem: to make up for; make amends for; buy back.  Finally, bit by bit we see a dog healed by love, a real dog.

For me this lesson is about a whole lot more than just one, particular dog.

1) Boo is who her genes "made her to be" and yet she is different than she might have been, because of the particular family she lives in.   Her experience in a loving family changed who she otherwise would have been.  This is true for all of us I believe.

2) There are a whole lot of people in this world that bear a great resemblance to Boo; they've been hurt and are hard to get close to.  They need the love of Jesus through us...there is no telling how that will affect them....


Wednesday, November 18, 2009

Check up at the dentist, the :) and the :(

The :(     Jessie went for a check up and cleaning at the dentist on Monday.  When she was younger (and I was certainly less diligent about brushing!) Jessie never had any cavities.  For the last couple years, bam! She has had 3 ( I think) filled and Monday they saw 2 that are minor and said they may remineralize? Never heard that before but I'm hoping for it! They also said she has two baby teeth that may need to be removed by an oral surgeon, to make room for the permanent teeth, that on xray are ready to come in.  We are going to be seen by an orthodontist (thankfully all set up with one as Jordan has already had braces, and her Daddy had braces there too) who will make the final decision.  Last, but not least, mentioned how small her palate is and that she might benefit from an expander like Jordan had, if she will tolerate having it done.  Not looking forward to any of the above possibilities!!

The :)    On a more positive note-Jessie LOVES going to the dentist, the weird kid! She went for a while just watching Jordan and Evan get their teeth cleaned and felt honored (even though she was scared) when she finally got a turn.  This dentist doesn't specialize in children with special needs (or see a lot of them) and I could tell initially they were a little nervous about the whole business, but agreed to see her, mentioning that they see a few that have siblings that are patients. The first time they didn't do a full cleaning but by the second time she let them.  By the third time she was a pro.  Although they prefer the parent not to go back with the patient, they never had a problem with me going back with Jessie, which is good, cause when she was younger I would never have let her go alone.  When she had the fillings done, they sedated her (oral not IV) and she had nitrous gas. Again, they especially don't like parents back there for all that, they said it sometimes upsets the parents and the kids do better without them.  No way would Jessie have done it without me to hold her hand and explain things to her and keep her a bit distracted, but even with the fillings she did beautifully. 

The last two visits, (she'd been there many times at this point!) Jessie has gone back without me.  When she did that for the first time, that was really an odd feeling.  She's the baby in our family, but she's the baby who wants to be a big girl.  When younger I didn't feel she communicated well enough and I didn't want any chance of anything getting off on the wrong foot unnecessarily.  Now, she talks well enough that if something bothered her or if she wanted me, she would be able to let them know.  Michelle, an especially sweet, very special hygienist is THE reason she was able to go back without me.  She really "gets" Jessie if you know what I mean.  And, I had absolute confidence that if Jessie wanted me she would come and get me.  She has been the one to clean Jessie's teeth for a while now and has told me she requests Jessie because Jessie makes her day.  THAT makes my day!

We love Dick and Jane!

I keep a journal of sorts as a record of what we are doing in our homeschooling.  DO NOT think this is a normal day's entry! I normally have abbreviations/acronyms for the things we do and things aren't written in full sentences but try to write enough to keep me out of trouble in case someone were to check to see if we are actually schooling.  Since I hadn't written in this journal for the entire week about what we'd done in reading, I wrote the following paragraph as a summary for the weeks' work. Hope you can feel the excitement!

This week we started reading "Dick and Jane Fun With Our Family".  She LOVES it!  I can't believe what a breakthrough this is for us.  She read 52 pages the first day!!!  When reading I would immediately supply the word she didn't know/recognize, so she would not experience frustration.  I read several more stories to her when she could read no more.  Today, (Friday), she read 40 pages then she begged me to read till I finished the book! 143 pages!  This book is giving her a lot of repetition/repeating the same words.  She gets confused sometimes if the beginning is varied with uppercase/lowercase.  This is the transition we have been looking for from reading cards to reading books.  Praise the Lord! And thank you God for Beth (who suggested the books to me)!

Okay, I realize all those exclamation points don't make for good writing...but you can't write what I wrote without using them.  It is nearly impossible to convey the excitement I have felt.  Jessie has been reading sight words for a long time, not sure how many words, over 100 I'm sure.  We just hadn't been able to find just the right books to transition to real books.  I had made her one book, using a scrapbook, but we needed more materials to choose from.  The Dick and Jane books repeat over and over the same words, varying the beginnings (upper and lowercase) and consists of mostly words she knew on cards.  We had tried some simple books from the library, each page having 1 sentence, such as I like______ or I see______.  Even though they had pictures, they weren't terribly interesting to her because there was no real story.  She has a bit of a fascination with names, and there are plenty of names in the book to suit her, and the stories, while simple, are sweet and funny.  Although they use the same words over and over somehow in this one book they manage to make many, many stories.  The pictures TELL the story, and she really enjoys that too. Hurray for having found Dick and Jane!

Saturday, November 14, 2009


I've had in my mind for several days that I wanted to post about Jessie's breakthrough in reading and how excited I am about that...I will...but at the moment my mind is completely overwhelmed with thoughts of other children with Down syndrome. Children that don't have a mother that thinks they are beautiful and smart.  They don't have a mother to kiss their toes, celebrate their birthday, and rejoice over every accomplishment..they don't have a mother at all.  This obsession that I now have all started a couple of months ago.  A family in our Down syndrome group had already adopted two boys with DS and were in the process of adopting two more, through Reece's Rainbow.  Our F.R.I.E.N.D.S. group gave $3,000. from our Buddy Walk proceeds to help with their international adoption of the 2 boys they are in process of adopting now.  Being a part of doing that...there truly aren't words to describe how good that felt.  The way all that came to be was a spiritual marker in my life, something I'll never forget.

Since talking to them and visiting the Reece's Rainbow website, I can not stop thinking about these children.  All day today (not only today) every time I looked at Jessie, with her round, full face and her chunky body, I kept thinking of children who were bony and thin and didn't have a mother to see about their every need.  I am sure it is the same for every mom that reads this, I give Jessie a full, appreciative inspection pretty much every day.  I love her slanted eyes, her round face, chubby fingers, her upper thighs we call ham hocks, the spacing of her toes, her shiny hair, her sense of humor, and the quirks that make her Jessie.  That's the abbreviated list!  I adore her, and constantly tell her she is pretty and smart and that I love her "the most" (it's a game we play).   Last night on Reece's Rainbow there was a child desperately needing a home, a family, she weighs 21 lbs. at 6 years old.  Every time I appreciate something (all throughout the day!) about Jessie, my mind automatically makes a comparison.  Jessie is funny and happy, this child is lonely. Jessie is chubby and healthy, this child is malnourished and lonely.  Jessie is busy and wants our attention, this child lies in a bed and doesn't walk yet at 6 years old.  I don't know what my part is in this yet, but my heart is heavy and it seems I'm on the verge of tears all the time.  It isn't really even this one particular child, but her weight made her stick in my mind.  There are tons of little cross eyed children; they need some glasses and maybe surgery.  The ones that have similar hair coloring and eyes as Jessie, or have strabismus (crossing eyes) or have that look that Jessie had before her heart was repaired...just can't get those precious babies out of my mind.

When our  FRIENDS group made the donation for the family in our group that is adopting, as wonderful as that felt, it is such a drop in the bucket.  I feel overwhelmed by the number of children's pictures that I looked at that don't have homes.  I want to ask every person I know, "Don't you want to adopt a kid with Down syndrome that really needs a home?"  I am praying for God to give me clarity about my part in all of this.  I know I will pray, I know we (my family) will give, I feel that FRIENDS will continue to give each year....I am not ready to give a voice to any of the other thoughts I've had...just praying.  I am asking God to give very clear direction and wisdom.

Tonight it feels really good to be able to share my burden and know that someone is listening, thank you. I know many of you reading already have a child with DS, and feel blessed by it, and feel that your plate is FULL.  I feel the same way, and wonder how people truly do it that have more than one of these little blessings.  If you're reading this and you DON"T yet have a kid with DS.... Don't you want to adopt a kid with Down syndrome? I'll help fundraise!!

Tuesday, November 10, 2009

A Good Coop Day

Today our day at coop (our homeschool coop) started a little later than usual.  Jordan had gotten a haircut on Friday that we both weren't very happy with, so we had to miss our first class to go get a haircut redo.  Jessie wasn't happy about missing her music class.  This semester of coop has been the best fit we've ever had for Jessie.   The difference is a combination of that the classes we chose are on her level (always hard to tell in advance if they will be a good fit) and we don't have time to kill in between.  One semester we had 3 hours when her siblings had class that she didn't.  That was really difficult.  This semester she has 1) Preschool Music - the teacher dresses as Miss Patty Cake and they sing the songs, have a color sheet with Bible verse to take home and have a snack 2)Preschool Art - she has taken art classes with this same art teacher before and really enjoyed them, but has liked this one the very best.  The other classes she learned from and enjoyed but had to wait more, listen more (much of which was over her head) so this class has just been the perfect fit.  Also, her teacher, Mrs. Denise is just THE BOMB.  She is so entertaining, engaging and fun while keeping amazing order in her class, even when it's preschoolers. 3) Preschool Playtime - the other kids are 3-5 year olds and most weeks we take the class to the soft play area in the church. 

Her classes end at 12:30, she is always mildly irritated that Jordan and Evan stay for the afternoon with the highschoolers who do volunteer projects in the afternoon.  She only doesn't pitch a fit because she knows we will go somewhere for lunch together and she loves to go out to eat, whether it is fast food or one of her other favorites.  For this semester, she has really enjoyed that we go out together, usually just the two of us.  We colored together while we waited for our food.

Today, after lunch, I had a dentist appointment.  Ordinarily I wouldn't schedule one when Jordan or Evan couldn't keep her at home, but I'd had a tooth bothering me that I felt desperate to be seen for and this was when they could fit me in.  She had a blast!  After they saw about the issue I'd been having, they said they could fit me in for a cleaning if I wanted to go ahead with that while I was there.  See, the truth is (and I'm sure some of you can identify) my kids go to the dentist faithfully every 6 months, while I might go 2 years if I'm not having a problem.  I think she knew if they didn't do it today....might be a while.  I was a little worried about Jessie sitting that long, but decided to go ahead.  The hygienist has a nephew with special needs and was so wonderful with Jessie.  She let her hold the "straw" to suck the water out of my mouth and turn it on and off.  A little bit, she even let her help hold the toothbrush/polisher, but Jessie knew she wasn't really in control of that the way she was with the straw, so she preferred the straw.  All the other hygienists kept coming by (the doorways are open, no real door there) commenting on what a good helper Jessie was.  When we left she had on gloves and a mask in hand so she could check her babies teeth when we got home.

After the dentist, we went back to the church to pick up J & E, and she really enjoys socializing with the teenagers there.  She thinks those are her people too.  A couple of years ago we seemed to be struggling so, trying to find places to fit, it was an agonizing time for me.   Right now we are in a better place.  All the teens  when we go in there are not only kind to her but when she initiates dancing with them (she loves to watch So You Think You Can Dance) they feel less self conscious now and dance with her or talk to her.  She never wants to leave there, but is persuaded because our next stop is dance.

This is Jessie's second year in the Special Steppers.  A free (!!) dance class for special needs kids.  It is funded by donations and fundraisers.  Jessie enjoyed it at first last year then started not wanting to go.  She has a new teacher this year, the owner of the dance studio, and is doing much better.  The class although simple in some ways, is excellent physical  therapy and after 30 minutes, Jessie is tired.  Jessie doesn't have great endurance and most of that time they are at least standing/moving.  She is learning to skip (not well yet!) and is, after a few weeks of working on it, walking on her toes.  At first she just couldn't walk on those toes for more than a couple steps.

We came home where she nagged us all about wanting to be our dentist and check our teeth.  She ate supper and stretched out side to side in the recliner (that is her spot) and watched TV.  When I sent her to the bathroom to get ready for bed, walking through my bedroom she flicked on the light (knowing her Daddy wouldn't like it!), when he said "huh uh" with an irritated sound, she said, "Gotcha"!! That's my funny girl.

In bed, we played the kissing game, this time she picked where she wanted her kisses. She REALLY enjoys the negotiations.  After I got way more kisses than she said I could have, she kissed me a few times, counting them.  A great way to end a good day.

Monday, November 9, 2009

Down Syndrome Awareness Excites Me!

I hope you all will be patient with me. My blog may look different every time you visit for a while. I'm just not very tech savvy and it takes me a while to make it's definitely a work in progress.

Just this morning 2 boxes from Woodbine House (publisher of lots of special needs books) were delivered and left on my front porch. These boxes contain a total of 54 books!! Some of these will be given to several local libaries, some are for our FRIENDS library, and others for our new parent packets that we are putting together. It is exciting to me to be able to be a part of helping others have a more positive (accurate!) view of Down syndrome. For those that have the patience to read the long story, I'd like to tell you how we got to this point.  I so well remember the time that being able to do things such as this was just an idea, a dream.

I mentioned in a previous post that when Jessie was born there wasn't a Down syndrome group in our area, there had been and the people organizing and running it had moved away and it had just kind of dissolved.  At the time Jessie was born,  there was no system in place for making sure every new parent had good information and a way to make connections with other families.  Our pediatrician gave us the book, "Babies with Down Syndrome" but others who used the same practice, but different doctor, didn't receive one. The nurse who was with me in recovery after my c-section knew someone who had a child with DS, and asked if I would like to have her number. It was just hit and miss as to what information new parents got or whether they knew how to get in touch with other families.  If you've read my new parent story, you know that I knew very little, really nothing, about Down syndrome when Jessie was born.  I wanted to read everything available to try to get some idea of what to expect. I especially wanted to read real family stories of what their life with was like with a child with Down syndrome and I pored over every picture.

I had an advantage over a lot of other new parents....When I was pregnant with Jessie, I became friends with Heather who was also pregnant.  We had daughters the same age, had sons the same age (we met because they were on the same tball team) and delivered babies with Down syndrome within three weeks of each other, Jessie first.  Neither of us knew our babies had Down syndrome before they were born.  When a mutual friend called me to tell me Heather had delivered and that her baby had was a really weird feeling...I said, "Robin, I know you wouldn't joke about something like that!".  I had never personally known anyone with Down syndrome, and even having been around anyone with DS seemed very vague to me, so for my new friend that I already had so much in common with to now have a baby three weeks after me with DS.....could only be a God thing. Right away I always had someone in the same boat, that really understood..period. That alone is worth so much.  We have both always been very thankful that God put our families together, and it wasn't long before we began to feel that there was a responsibility that came along with that blessing.

One at a time, through various connections we found other families further down the road than we were and were always so grateful every time.  How helpful and healing it was for us to see how, overall, their families functioned in very normal ways, and that they were thankful, yes thankful, for their children that had Down syndrome.  When our babies were 10 and 11 months old we had the opportunity to go together to the NDSS conference.  Another God thing...we received assistance through our local Early Intervention to be able to go, and since that year it has never been near enough again to be within driving distance.  It was a vague idea at the time, but there was birthed the idea of our FRIENDS group.
F.R.I.E.N.D.S. That stands for quite a mouthful: Families Reaching, Influencing, Educating and Networking for Down Syndrome. Whew! I still remember the visit to IHOP, with Katherine (our babies' Special Instructor who helped us get FRIENDS started) where we ate, drank lots of coffee, laughed and spent hours trying to come up with the name that that we felt represented who we wanted to be. If you are interested in visting our website, it is  There are still some typos on the front page, that too is a work in progress. 
That late night, early morning was about 6 years ago. The progress has been slow, but steady.  A little over 5 years ago God brought our way, Anne, who contacted us when she had a prenatal diagnosis of DS.  Anne has become a dear and precious friend, and a much needed (critical!) asset to our group .  She has a very needed and different skill set than Heather or I possess. Things really took off for us two years ago, when we had our first Buddy Walk. Another God thing! The nearest Down syndrome group to us is about 2 hours away and we had gone to their Buddy Walk.  Having one of our own, we had no idea how to make that happen.  I'm not sure where all Knology is located, but in this district, every branch of Knology supports a Buddy Walk in their area.  Knology contacted us about having a Buddy Walk here.  What are the chances, really, of a corporation contacting you to help raise awareness and funds for your very hearts desire?! God is too good. We just had our 2nd annual Buddy Walk and because of the Buddy Walk there are 54 books on my kitchen table waiting to be distributed. We had a very successful Buddy Walk and will be able to do many more good things as well.

It is my great hope that because of these books, some high school student will have good information for the report they prepare, and that anyone who wants to know about Down syndrome will be able to access GIFTS, and Babies with Down Syndrome. Every new parent in our area will have a lovingly prepared (by Brenda, another Godsend) new parent packet which includes:  Babies with Down syndrome, a devotional book,a burp cloth that says "I am wonderfully made" and a notebook of our family stories and contact information in a bag embroidered with our logo.  We are currently working on making connections to have in place a system where new parents receive our packets at the hospital or when they receive a prenatal diagnosis. I clearly remember when all these things were just good ideas and we wondered if we could ever make them happen. We've come a long way, baby!

Friday, November 6, 2009

Our first two babies had been conceived with the help of Clomid, a fertility drug, after much heartache and longing for a baby. When we found out we were pregnant with Jessie without the help of modern medicine, we were truly shocked. Just a month or so before, we’d been taking a walk and discussing whether we were certain if we were ready to take a more permanent step about not having any more children. We were getting older (I was 35) and knew our risk of having a child with Down syndrome was higher at our age. That, combined with the fact that my husband wasn’t certain he wanted to start over with the baby stage again….our children were 4 and 6 years old, finally past the sleepless nights and colicky baby stage. While we walked and talked trying to reach a decision, what we didn’t know was at that moment I was already pregnant! Before our 1st baby was born I’d had 2 miscarriages; I had gestational diabetes with our 1st baby, and some late pregnancy bleeding problems with our second baby. So, although we were surprised and worried, we were amazed at what a miracle this baby was.

With this pregnancy, we chose not to have the AFP test just as we had done with our first two babies. With each pregnancy I asked my doctor if there was anything life threatening that would be detected that we wouldn’t find with ultrasound. Each time after discussing it I felt reassured that anything life threatening (a severe case of spina bifida) that could be prepared for at birth would likely be discovered on ultrasound. Other than that, what the test would look for was Down syndrome. We had talked about that if the AFP results were abnormal, an amniocentesis would be recommended, which has a 1% risk of miscarriage. Even that small risk we didn’t want to take. I don’t at all regret our decision not to know beforehand. It was the right decision for us. For some the knowledge beforehand enables them to prepare mentally for the task that is to come. I, on the other hand, am a worrier. Although my heart desires to always trust God, I know that the rest of the pregnancy would have been overshadowed with worry of all the possible things we might or might not have to face in the future. I am thankful that when we were trying to adjust to the knowledge that she had Down syndrome, and all the health issues that could come with it, that I was able to hold my baby that I already loved.

Jessie continued to be in the breech position in the last weeks before my due date, so we had a C-section scheduled for 39 weeks. The night before Jessie was scheduled to be born my other two children wrote Baby Jessie a note in her baby book about how they couldn’t wait to meet her and how they had gone to the doctor with me during pregnancy and to a sibling class to learn how to help take care of her. They were so excited about having a baby sister. The morning of the c-section my husband and I added our notes to Jessie that we couldn’t wait to meet her and how we loved her so much already.
When Jessie was born I only got to see her for a second before they whisked her away to check her out. In that second I noticed something about Jessie’s eyes, but I couldn’t place what it was that was bothering me. It seemed as if they kept her over there for such a long time compared to how it had been with my other two babies. I thought maybe it was because she was a c-section baby. My husband followed them to the nursery snapping pictures right and left while they took me to recovery. Some time later, I heard my husband’s voice outside of my room and when I called him in I could tell that he’d been crying. I was overcome with fear that our baby had died. When I was told, “We think your baby may have Down syndrome”, as scary as that sounded to me, I felt such a relief because seeing my husband upset I had thought something worse. I think the way we each learned about Jessie having Down syndrome greatly affected how we dealt with it in those early weeks. I was relieved that although she could be found to have some serious health problems later, for now she was alive and seemed o.k. For Julian, he had been happily taking pictures and had no suspicion of anything wrong when they told him; he was so taken by surprise he felt as though he’d been punched in the gut. (His words!) We all have our own way and time table of grieving and learning to accept the way things are. I had really grown in my relationship with God in the couple of years before Jessie was born, learning to trust Him more, and I know now in many ways he was preparing me for things to come. In those first days I held on to what we had known from the beginning, that the way this baby came to be was such a miracle for us, that she was meant to be here exactly as she was.

Our pediatricians had immediately told us our greatest concerns in the first days were to watch for any signs of heart or intestinal problems. We could hardly close our eyes those first few days for fear she might stop breathing while we were sleeping. I was never so relieved to see baby poop, so we could know there wasn’t intestinal blockage.

While we were in the hospital we began reading the book “Babies with Down Syndrome” that our pediatricians had given us. For me the greatest fear is always the unknown. I wanted all the information I could get. There were aspects of reading it that were comforting to me and others that scared me to death. There were many serious, and some not so serious, health problems that our daughter could face. We were so scared, wondering in those early days and weeks what this really meant for all of us. I knew it was kind of like the information sheet you get from the pharmacy with all the possible side effects, that they wouldn’t ALL apply to us, but all the possibilities of what could felt pretty overwhelming. When I read about all the therapies, etc. that could be helpful I thought how are we ever going to pay for all that?!

It seems odd now, the fears that were so all consuming when Jessie was born. I can remember when Jessie was a newborn wondering what does “some mental retardation” really mean? Would she be able to feed herself? Would we be able to go out to eat as a family in a restaurant? Our other children were doing t-ball and dance lessons. How would this new baby with special needs affect our ability to continue with those activities? How would we ever know how to discipline Jessie – how could we know what she understood? As Jordan and Evan got older, how would they feel about having a sister with Down syndrome? In general, would life EVER resemble normal again?! When Jessie was still just a baby we met some other families who had children with Down syndrome and that was such a huge help! I can’t tell you how much that helped us and put many fears to rest.

When Jessie was 2 weeks old our pediatrician heard a heart murmur and the next day the cardiologist found that she had two holes in her heart called ASD and VSD. We learned she would need to have open heart surgery by the time she was 6 months old. Although as heart defects go we were told this was a better one to have, more easily repaired, it was a scary time until surgery was behind us. Suddenly, any more distant future concerns took a back seat and we concentrated on getting Jessie to gain enough weight to be ready for surgery. Our lives seemed to revolve around getting Jessie to take in enough calories to gain weight. Eating burned up more calories than she took in a feeding. Jessie had open heart surgery when she was 3 months old, sooner than expected. She did so well with surgery and we couldn’t believe how well and quickly she recovered.

Jessie started in early intervention when she was just a few weeks old. All of the therapies (physical, occupational and speech therapy) were time consuming and in our every day lives that was the biggest adjustment. While our other babies went through each stage so quickly you almost missed it, with Jessie, we had to learn how to teach her new things. Sometimes we’d seem to work on the same thing forever; then suddenly she could do that thing and 2 or 3 other things as well. I can remember every step of teaching her to pull up to stand, and how she worked so determinedly to do it. When Jessie learns something new it’s like a party at our house! We all enjoy her every accomplishment so much. Jordan and Evan used to argue over who got to call Daddy at work to tell him what new thing Jessie did! Now that Jessie is 7 and loves to talk on the phone she insists on calling Daddy herself. Just this week she called Daddy to recite every word of John 3:16, making her Daddy quite proud.

When Jessie was a baby and toddler most of the time I was fine with the fact that she did things on a slower schedule than other kids. There were days though, where it was so obvious that other children did things effortlessly that she had to work very hard to do. I would have a little reality check and cry for a day or two and feel sorry for the both of us. After a day or two I was usually able to shake it off and get back to the business of life. This would usually happen after I took a turn in the nursery at church or our homeschool coop. It truly wasn’t about the delays, it was the realization that she would always have to work harder at things.
At seven Jessie is learning to sight read before learning to read with phonics. She is a very visual learner and has an excellent memory for things she sees. For her AWANA class at church she has been learning Bible verses. She is learning to write her letters, can write her first and last name, recognizes most #’s to 100, counting to 10. She can swim short distances under water, is taking gymnastics and just started a “Special Steppers” tap dance class. It was a very difficult decision initially for us to decide whether to homeschool Jessie or for her to go to school. Although our 1st two children have always been homeschooled, I felt very intimidated by the challenge of being her only teacher. Although it is challenging, it is equally rewarding, as I see all that she can learn when it is presented in a way that works for her. I only mention the specific things that she can do because it was so encouraging to me when she was young to read the accomplishments of other children with Down syndrome.

I thought a lot before writing this about what I really wanted to know when Jessie was a newborn, what was helpful to me. You of course know, that there will be difficulties and challenges, and I don’t want to gloss over or minimize that they are real. There are things that are different, and in some ways more difficult, about raising a child with Down syndrome. What I want you to know is that even though that is true we wouldn’t change Jessie if we could. Of course we would change the health issues if we could, but the core of who Jessie is, is in part due to Down syndrome. It is not all of who she is but is part of what makes her who she is. Many, many times I have thanked God, that in giving us Jessie, He met His expectations and not ours. We wouldn’t have chosen to have a child with Down syndrome and in not having her we would have been cheated of an incredible blessing. One of the biggest blessings that Jessie has brought to our life is the way our whole family looks at things differently now. Having her has caused us to reevaluate and remember what is really important in life. At 13 and 15, Evan and Jordan are her biggest advocates. They both have tender hearts for all children with special needs. They each were “Buddies” in our Miracle League season this past spring and helped at Camp Smile the past 2 summers. Whether it is a career choice or volunteering, I know they will always be involved with people with special needs. We are richer as a family because of Jessie and the experiences she has brought into our life. Whereas in the beginning, I wondered would our life ever be “normal” again, now I am so thankful it is not.

Thursday, November 5, 2009

Our Crazy Life

I had just put on my Facebook status update that I enjoyed visiting with my homeschool peeps tonight.  My daughter, Jordan (I had asked her if it was peeps or peops)  laughed so hard she was snorting and informed me that people my age didn't say peeps and I obviously hadn't seen it a lot if I didn't know how to spell it. Hmmm...

Tonight we had a homeschool meeting where we had a choice of 4 workshops you could attend, I went to one about homeschooling high schoolers and since my two teens (that feels weird to say!) were with me they went to a talk about Courtship, which I have been eager for all of us to learn more about.  Jessie went out to eat with Daddy at Things N Wings, one of our favorite places.  

This is the time of year when every week, I hope the next week will have a slower pace, then it never does! Sunday we went to the fair, the kids LOVED it and we SURVIVED it. I love how much they enjoy it. Jessie would have stayed there all night riding and eating corn dogs. Seven hours was more than enough for Jay and me.  Tuesday is our homeschool coop day, Jessie has a preschool music class, an art class, and a playtime hour where we usually get to go to the soft play area.  Jordan and Evan have their own classes and participate in a volunteer program on Tues. afternoons. When I pick them up from there, we go straight to Jessie's Special Steppers (dance class for kids with special needs). This Wednesday, we went to Special Citizens Day at the Fair then Wednesday night church (I teach the Youth).  Thursday nights Jessie has Gymnastics and this night the homeschool meeting after gym, tomorrow Jordan gets a hair cut and we have errands to run.  I desperately need to make a trip to the grocery store.....still hoping next week has a slower pace. Proofreading that paragraph makes me tired.

Our computer has very little space available so I haven't been able to upload pictures. I've been taking pictures a lot lately though and everytime Jessie tells me, "put it on your blog", or "you gonna put it on facebook?" She is rotten.

Monday, November 2, 2009

Jessie Can Spell!!

Wow! We had a sweet moment tonight.  For about a year I guess, I'd been thinking about how to move Jessie to learning to spell, but knowing that she just wasn't quite there.  Jessie has a couple of ways of letting me know when I introduce something new, that it's just more effort than she's willing to give.  Sometimes I can (with those Mama Super Power Tactics) get her motivated and other times just have to give it up for a while.  She'd been showing interest in spelling...but only if it was what she wanted to spell. She can spell a few names: her own (first and last), and a few friend's names at church that she always wants to make notes for. She has copied their names over a few times until she can spell them. I was quite impressed that 2 of them have 6 letters each.  She is close to being able to spell her brother and sister's names; and can spell our dog's name, Boo.  So, the last week or so, as part of her handwriting practice I gave her 5 words: love, my, girl, dog, name.  I chose these words because they are words she reads, understands and they have meaning to her.  Mind you, I've tried this before but at that point she wasn't quite ready, so I dropped it for a while.  We always read the words that she writes for handwriting, so we just changed it up a little. Pointing to love, I ask her if she can spell love, then say with her, moving my finger across the letters L, O, V, E, that spells love.  You get the idea.  Tonight at time to brush her teeth, I decided to review her spelling words with her....and discovered that she can spell love, my, dog, and is close to having girl and name. Woo hoo!! I clapped, squealed and carried on....she loved watching me make a fool of myself, she laughed too.