Monday, January 31, 2011

A New Baby.....Not Mine!

this weekend we had the awesome privilege of meeting a family who is expecting a baby girl with Down syndrome in a couple of months.   my ob/gyn friend had asked me if i was willing to meet this young mom a couple of months ago, and i was thrilled to do so!  we've only talked on the phone up until this past weekend.   their baby, ashlynn, is due in early april. 

we met at a local pizza place, and really enjoyed our time together.  we met baby ashlynn's mom (noel) and dad (paul), dad's son from a previous marriage, mom's mom and little sister....whew!  quite a crew!  noel had told me that they wanted the kids to see wyatt, and know a little more of what to expect.   i think they were all relieved to meet us, especially to meet wyatt, and see that he's just a typical, cute baby boy!     paul's son, who is 11, said, "he's the cutest baby i've ever seen!"   noel's mom thanked us so much for meeting, she said noel had been so nervous about their baby, and she was thrilled to see such a happy family with a baby who has Ds!  

i am so glad that we were able to bring the "new parent basket" that our local organization provides.  there's so much good information in there that i know will be helpful to them even before ashlynn arrives!  i'm a HUGE fan of Babies With Down Syndrome: A New Parents Guide, i think it's such an awesome resource!   i also love the national down syndrome congress free resource, Down Syndrome: A New Parents Guide!   it has such great information, and a terrific step by step guideline for medical tests, etc.  i am of the "the more information i have, the better off i am" mentality!   tim just encouraged them to read the books in little bits and pieces, so as not to be overwhelmed!   

it was a great meeting, and i hope that we can continue to encourage them in their unexpected journey.  we have been blessed with such tremendous encouragers since wyatt's birth, and want to pass along that same friendship!   may God bless them as they welcome their baby girl in a couple of months!  peace....

Tuesday, January 25, 2011

Wow! Look at What Wyatt's Doing!

today was a great therapy day!  wyatt had not seen his speech therapist, kenalyn, since before Christmas, and she was AMAZED at his progress!   he did so much today..... he identified at least 5 body parts....eye, ear, nose, mouth and feet.... he made a good (recognizable) attempt at "glasses", he said dog, duck, ball, elmo, and i know there are more he said, i just can't think of them right now!    he helped me do the motions (him leading) to "wheels on the bus" !  he spent a lot of time "reading" with kenalyn, as well as alone, while we talked.  it was a great speech day!   it's nice that she could see the huge strides that he has made since she last saw him! 

after a quick break, his developmentalist, vicki, arrived for his therapy with her.   she heard lots of good words, some while using his picture cards.   she worked on sorting with him, and was VERY HAPPY with the sorting that he accomplished, when given 2 different objects to sort (ducks and rings).   he also did some great puzzle work and some fun object permanence work...which led into a little bit of "peek-a-boo!"  that he initiated!   we worked on a little bit of signing, as well as handing objects on request....which he did several times!   as she said, "he was really 'on' today!", he was so responsive and attentive!   

both therapists remarked on how focussed he stayed throughout their sessions!   i just didn't realize what a big deal that was.  often he really likes to play with one thing for quite some time!  especially his fisher price laugh and learn learning puppy, as well as his books and balls!   praising God for awesome progress and the encouragement that we received today!    it's just what i needed!   peace......

Saturday, January 22, 2011

Please Pray for These Orphans.....

another of my fb friends, ashley, who is also in the process of adopting a child with Down syndrome from an eastern european country, is in need of urgent prayer for their adoption.   baby J (see sidebar) lives in a region that has never allowed children with Ds to be adopted....never, ever.   there are two other families who are also in the process of trying to adopt children with Ds from this region. 

ashley received word today that the judge in that region is not going to issue a travel date for ashley's family to proceed with their adoption until the other adoptions are successfully completed.  as ashley said in her blog post (our adoption journey) "We have known that our adoptions carried the torch for all of the children with Down syndrome in this region. On the shoulders of our three children rests the fate of so many others. God, we have been confident, is using them to open the doors for the rest."

i'm asking that you please take the time to pray specifically for these children whose futures are so bleak without the opportunity to be adopted.   as ashley says, "This is a battle. I have written before of spiritual warfare, of the intense battle being played out all around us. For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places, EPH 6:12.  I have written that the enemy does not easily surrender long-held territory. We are advancing on the enemy lines. On the shoulders of these children rests the fate of those who still wait, and those who will come after. These doors will either open before them, or lock behind them."   

ashley's request is this: "Would you please join us in prayer? We will be praying and fasting Tuesday (1/ 25) and staying up Tuesday night to pray over the meeting between our facilitator and the judge. Please pray that God will bring these children home to the parents who love them so fiercely."   we know that He is in control, and that He has placed these children on the hearts of their adoptive parents....ashley and her family have been waiting on baby j for over 16 months now....pray that the heart of this judge will be pierced and he will be open to allowing these children a chance for a life filled with love and hope!   may God receive all the glory.....

Thursday, January 20, 2011

"Don't Worry About Tomorrow...."

tonight i was able to attend the "prayer and share group for parents of children with special needs" meeting.  this group was started by the leaders of a special needs ministry of a local church.   they are a precious couple who i've come to love and admire in a very short time!  their son has cerebral palsy, and he is 27 years old, living independently with in-home support.  

tonight we had a small group, about 14 parents....whose children have varying disabilities; Down syndrome, cerebral palsy, epilepsy with developmental delays, and autism.  these folks are a great group of Christians, for the most part, who love their children dearly and are looking for support and encouragement!   i'm thankful for the heart of this couple who started the group.  they are amazing!

as much as i love being around people....i'm a people person....i sometimes leave there feeling a little discouraged and overwhelmed.   it's still hard for me to see those older teens/young adults who are so developmentally delayed, so lacking in social and communication needy.   there, i said it.    i just cannot picture our precious wyatt like these young people.  right or denial or not....that's the way i'm feeling right now...tonight!   but i must remind myself that i need only focus on today....not tomorrow or 18 years from God's Word tells me...."Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." (Mark 6:34)

but i am encouraged by the love and devotion these parents have for their children.   their commitment to doing the best for their children is amazing!   for the most part, they each firmly believe that God had a plan in blessing them with a child with special needs.....praise God!   i'm thankful for the opportunity to learn from these parents and walk this unexpected journey with them.....

Wednesday, January 19, 2011

Help Bring Melanie Home!

i'm sure that many of you remember beautiful melanie, who my friends rob and deanna (and ragen) sader are in the process of adopting!   

Beautiful Melanie...patiently waiting for her forever family!

their family has made some tremendous progress in their fundraising efforts to be able to bring melanie home!  they are actually within about $7,000 of an estimated $26,000 goal!   i praise God with them for His provision through so many different people!  they were even blessed around new year's eve with an anonymous $5,000 donation!  wow!  

several of us facebook and in real life friends are currently holding an online fundraiser for their family.....please check it out over at my friend cathy's blog, a walk in lily's garden.   we have currently raised about $700, and the fundraiser ends this saturday, january 22nd!   we have each donated a variety of things, from a handmade afghan, to jewelry, and the list goes on....   for every $1 you donate to the sader's adoption fund, you "cast" one chance for the item that you choose..... it's all explained much better over there!   but please, go check it out and help this precious family fulfill their dream of bringing melanie home soon! 

Tuesday, January 11, 2011

Always More To Do....

do you ever feel like you don't do enough?  or is it just me?  i always feel like there is something else that needs to be done.....whether it's in the house, at church, or with the family......

especially with wyatt. there's always something else to do!  i was with a friend today whose child with Ds is 4 months younger than wyatt, and she's always on top of things.....i feel like she does so much more than i do!  i feel kind of like a lazy bum when i talk to her..... but i learn a lot from her as well!  she always has good ideas that i can use with wyatt!   i love her and i love her enthusiasm, her dedication and the time she spends therapeutically playing with him!   she's wonderful!    and a terrific example and friend to me.  

so what do i need to do with wyatt....well, after our developmental therapy today, i have this list to work on:   exclamatory phrases (uh-oh, wow!); saying "no" meaningfully; naming 1-2 familiar objects; pointing to communicate; giving a toy spontaneously or on request "give me..."; and "t" and "n" words.....   of course, that's just the developmental therapy list!   we're still working on WALKING for physical therapy.  we're working on EATING and DRINKING, placing objects in containers, opening and closing things, all the "using hands" stuff in occupational therapy.  and then there's TALKING in speech therapy!   you would think that he would have this one down by now, with me for his example of talking!  

our developmentalist was very encouraging today, though.  as she went through her list of achievements, she was happy to mark off many of them!   don't you just love marking things off of lists?  i know i do!   it was a fun day.   we've been having that therapy at my mom's house on fridays, when i'm over there cleaning, but our therapist's schedule changed and we were at home today.  he does more here among his own toys!  so it was a great therapy!   she's very happy with his progress and i enjoy our time together as she plays with wyatt and teaches me so much!  

we are so blessed with the guidance, teaching, encouragement and friendships that we have through our therapists!   we have an awesome team who loves wyatt and wants only the best for him!

Saturday, January 8, 2011

Two Amazing Women.....

God is so good!   i continue to be amazed at how one woman who is led by God to raise money for others can make such a tremendous impact!   this happens over and over in our Down syndrome community!   i wanted to relay two such stories today....

i posted several weeks ago about my friend patti who has raised money for not one, but two reece's rainbow kids who need forever families!  patti, whose blog is a perfect lily, has raised over $12,000 for olga's grant fund, and over $3,000 for kareen's grant fund!   one ordinary woman, who was burdened by God for these children who need forever families, who did what she could!    and now she is waiting and praying for God to bring their forever families to get them!

my friend deanna, whose blog is the 21st chromosome...a blessing in disguise , has been burdened for a fellow Ds momma whose son is very ill.  rabia and her family live in morocco, where to receive medical care you need to pay with cash.  she does not have the cash needed for her son, saad, to receive the medical care he needs right now to treat his pneumonia.  deanna has selflessly been raising money in our online Ds community to help with his medical expenses.  in less than 48 hours, she has raised over $1,000!   and her goal was $500!  as deanna told me this morning, "She (rabia) never asked for help, but I could read between the lines and didn't hesitate. God just works in me like that. I don't think twice. I really love and appreciate the relationship I have with Him, and He knows that I will move and not sit on and idea. Some people call me impulsive, I just say, I'm a doer! At least I like to think I am. And when you "do", God can do His thing! And what He did yesterday by over doubling the money for Rabia, doesn't surprise me. I hope that others that "sit on the fence" with their faith, will see what happened (and has happened to me) and inspires them to believe, live and act too!"  deanna did what she could to help this family.....while in the process of raising money for the adoption of her own precious melanie from the ukraine!    she didn't hesitate to put aside her need to raise money for their own adoption, in order to help this family!

i know that God is so pleased with these two EXTRAODRINARY women and their obedience to Him!   and there are so many others who are just like them!   may i be more like them.....may i act in immediate obedience when God leads....even when it doesn't make "sense" to me!  

Wednesday, January 5, 2011

Wordless Wednesday: Christmas Reflections.....

Forrest, Megan and Ethan with
their Gingerbread House!

The brothers gift exchange! 

Some serious gift opening!

Our happy little man!

Wyatt signing "eat"....he's holding graham cracker goldfish!

Christmas morning!

Tuesday, January 4, 2011

In Wyatt's Time.....

well, i posted last week about comparisons, how i compared wyatt to his little cousin who could do so much more than he could.   i mentioned that i asked my husband if it made him sad to see the differences, and his response was "no!"   end of story.....

so we've actually had some time to talk since then, and i asked him why it doesn't bother him when he sees other kids who can do so much more than wyatt can, who are younger than wyatt is.   his response was that he has accepted that wyatt has Down syndrome....nothing is going to change that;  he will develop a little slower than other kids, walk and talk a little later, etc.  i know all those things, but it doesn't make it any easier for me.    tim chooses to focus on what wyatt CAN do, not what he can't do!

so what makes it "easier" for tim to accept wyatt's Ds than for me?   i have accepted it, of course, but why does it still make me a little sad?   is it because as a woman, i'm naturally more emotional?   is it because as a stay-at-home mom, my "identity" is more closely tied to my children than a father's identity is?   is it because i'm naturally more "competitive" ..... no, i don't think so....we're both pretty competitive!   is it because i hear more often than he does "is he walking yet?"    i'm sure that it is a combination of all of the above and more!   

i am certainly proud of the accomplishments that he makes everyday!   i guess for the rest of his life we'll all be clapping when he does something....not really... but we sure clap a lot now!    he is such a cutie pie, and he does bring such joy to our lives!   so i'll keep trying to focus more on what he CAN do, not on what he can't; realizing that he will do ALL those his own time!     in wyatt's time.....