Oh, The Beautiful Faces of Down Syndrome....

as i sat in one of the general sessions of the national down syndrome congress national convention, i was struck by how beautiful all those faces were. it was breathtaking, actually! those beautiful babies, children, teens and adults who share that same extra chromosome....the "extra beautiful" one! the innocent, loving, trusting chromosome! to watch them dance without embarrassment, with no fear of what others might think of them. to clap and rejoice freely over the accomplishments of others. to witness the pure joy of little girls and boys meeting cinderella and mickey mouse for the first time! it was incredibly encouraging!

it was an amazing weekend, and i'm so glad that we were able to go. i actually can't wait to go again! it was fantastic to meet facebook friends who i've come to cherish dearly over the past year. to meet new friends that i know God brought specifically into my life for a reason! to reconnect with wyatt's first friend with Ds, benjy... and to be able to deepen the relationships with have with families from our local group, acton up with downs. it was an awesome weekend!

i heard over and over again how very blessed we all are to have been given a child with down syndrome (so true!). with as much encouragement as i received, i was reminded of the hard road ahead for each of us. the therapies, school decisions, ifsps, ieps, financial decisions...the list goes on and on....all to insure that our children have the best lives they can have! it's exhausting!

it was also great to hear the end result of that hard work, as i heard self advocates (adults with down syndrome) share about their lives...lives they love....lives they live independently; working, serving, worshiping....living their lives to the fullest....just like everyone else!

because we are more alike than different.........

Heading to NDSC National Conference!

what was i thinking? and why am i on the computer? we are leaving in 1 1/2 hours to drive to tampa for tim's work meetings, then over to orlando for the national down syndrome congress national conference! with forrest and wyatt....driving all that way this afternoon! yikes! in the heat of summer! to top it all off, we're going to disney world....in july! how crazy are we? anyway, i know that we are going to learn so much from this conference, and i can't wait to meet all my cyber facebook friends! how exciting! i feel so close to so many of you that i just can't wait to actually meet you in person! yay! and so i'm off....i'll report back next week!

Wyatt's 1st Birthday!

well, it's hard to believe that in a mere twenty four hours, wyatt will be 1 year old. sure, at 12 am on july 6th he's officially 1, but i know that it was right about 10:15 pm when he made his grand entrance! i'd been trying to have him for at least two days, really wanted a 4th of july baby, but he wasn't quite ready yet! (maybe God was still giving him that little something extra he was born with? =)?)

but when he arrived, he was quick! we got to the hospital about 45 minutes before he was born! i was just glad that our doctor made it....glad that she encouraged me to head to the hospital when i called her at about 8:45 that night! i remember i was having some pretty good contractions when we pulled up to the hospital, and i told tim that i didn't think i could do this.....i was too old! he just laughed and told me "no, you're not too old, and we're going to have a baby!" when the nurse checked my progress to make sure i was in real labor she laughed at me too (which i did not find funny) when she told me i was dilated to 8 cm already! i even think my doctor might have laughed at me when i told her i could not do this, i could not push him out....she just said "okay...you don't have to...." riiiiigggghhhhhtttt! what an exciting and fast night that was! i praise God for such a fast delivery!

i, of course, had no idea how our lives would change after that night....the surprise of his "little something extra"....that extra 21st chromosome that God gave him. i'd never known such joy and sorrow (at the same time) as i knew those first few weeks....how could this beautiful "perfect" baby have down syndrome? i knew that our lives had changed forever! as much as i knew that God was in control, it still hurt so very much....the unknown, the misperceptions, my lack of knowledge about down syndrome....and only God knew the new friendships that we would be blessed with simply through that little extra chromosome!

but oh what a difference a year makes. there was no sorrow as we celebrated his birthday yesterday. he has brought such joy to our lives and the lives of so many...our extended family, our church family and friends far and wide. he has blessed our lives in so many ways. he has brought people together with a love for him! we've been brought together through his first buddy walk...there were over 50 people on team wyatt last year....and through his open heart surgery in february....over 800 people praying through his facebook group, wyatt's prayer warriors! wow! what a difference his young life has made!

and i am so thankful that God chose me to be his mom; entrusted me with this precious child of His.....peace....

Not Crawling Yet...Whew!

it's hard to believe that our little man is about to turn one in less than a week! i've really been struggling with his development lately. not sure when i haven't struggled with it, to be honest!

i can't remember when i last posted about the crawling questions, but i'm still getting them. "is he crawling yet?"...."scooting?"..."commando crawling?"....the list goes on! and every time i'm at church it's "in my face" more and more. when i'm at home, i don't see other babies his age (or younger) developing more quickly than he is. for that reason, sometimes it's hard to go to church without dreading the questions, etc. it's just hard. and we have such a loving church family who adores wyatt as much as we do... but most of them don't understand that he will develop more slowly.

my friend and i've been talking this week about how hard it is to deal with those questions about developmental milestones. from strangers, from friends, etc. i'm not sure that it will ever be easy. i'm also not sure if i'll ever feel like i do enough for him. i know that others deal with these feelings regularly as well. there's always something else that we should/could be working on. always more research to check out.....way too much to read everything out there. where do you start.....and stop?

i had so hoped that wyatt would be crawling by his birthday. i really thought he would. he's trying really hard. he works really hard. today he had physical and occupational therapy and he did terrific in both sessions! he still stays on his hands and knees and rocks. he scoots forward w/resistance. he can scoot backwards by himself. he's pulling up more. he pivots a lot. yesterday he got himself off his blanket SOMEHOW. we weren't looking, of course! his physical therapist has him walking a lot. he likes to walk with assistance! she keeps saying he may just skip crawling. we'll see.....

as i was thinking about this earlier, though, God reminded me that once he does start crawling and walking, he starts moving away from us. breaking some of those ties of dependence on us! and those movements of independence are just the beginning....who's ready for that? certainly not me! peace...

A Little Quiet Around Here...

my oldest son, ethan, left for his last youth camp early this morning. since he'll be a senior next year, no more youth camp for him! it always makes me a little sad when he leaves....i always miss him! and he never misses us...it's like it's such a bother when i call to check in with him....

i don't know what on earth i'll do when forrest goes to his first children's camp in august....i can't even imagine not having him around for a week! and wyatt....no way will he ever go to camp....laugh out loud! at least i have a few years until that will happen!

forrest has been granted wii privileges while ethan is gone...ethan bought the wii, so forrest always has to beg for permission to play it! he's pretty excited about it, too! right now he's pouring over a star wars visual guide of ethan's (w/permission, of course) so he's a happy camper! and very quiet, which is extremely unusual!

it's just nice to be home today. swim lessons last week took us out every day early, and it was great that we didn't have to leave first thing this morning to jump in the pool! time to catch up on things around here....

Family Cafe Was Great!

my mixed emotions were unfounded! we had a great weekend at the "family cafe" conference this past weekend in orlando. we met so many wonderful new friends. reconnected with a terrific facebook friend of mine, karen. we enjoyed getting to know our friends the walkers better...they live in our area and their baby clayton also has down syndrome. he is 4 months younger than wyatt. we know that they are going to be great friends!

we received lots of great information for wyatt's future needs and planning. tim attended sessions on social security stuff; med waivers, etc. i attended sessions on iep's; family care council; and other stuff. a lot to take in! so much to learn in this new world we've been thrust into!

i saw a lot of parents and caregivers who were eager to take in as much information as they could. everyone is so willing to share what they know with each other to help in any way that they can. i saw parents who sacrifice so much for their kids. i saw many, many tired parents. and as my friend karen said, i learned that down syndrome is "not so bad" when it comes to the vast field of disabilities. there are so many other disabilities out there that require so much more physically of their families. not that down syndrome doesn't, but there are countless parents and caregivers who are exhausted from their resonsibilities, with little or no support.

i am so thankful that God gave us precious wyatt. i am so thankful that He allowed me to see beyond my own little world into a whole other world of needs, hurts, joys....and i am so glad that He is in control! and i'm not......

Mixed Emotions

i'm having mixed emotions. i need to be packing to head to the "family cafe conference" here in florida. it's a conference that is for families whose kids have varying disabilities, from what i understand. it will help us know what services are available for wyatt probably more in the future than now, since we are blessed with such awesome early intervention. i know that i will see kids and adults with various disabilities, and i'm sure it will make me sad to some extent. wondering if it's better to have more exposure and get used to it? hmmmm, not sure! i also know that there will be lots of valuable information that we will attain!

it probably doesn't help that i am going into the trip EXHAUSTED! last week was just really yucky...lots of junk. and this week has been vacation Bible school.....very stressful and busy! but i am praising God for the 13 children who prayed to receive Christ as their Savior at vbs today! yay! that's what it's all about! now i'd really like to just lay down and rest, but i'm off to pack...