Promoting the value and dignity of persons with Trisomy 21.

From My Heart

Sharing a window into the heart of a family with a child with special needs. Faced with new challenges, disappointments, and triumphs – here is my heart…-Adrienne Walsh

Hearing Him

Posted by on Dec 5, 2008 in From My Heart | 0 comments

Hearing Him

Christmas is here! For the first time in forever – we have our lights and tree up by December 1!  Hooray! With the kids grown, though, I can only go to the Toy section to shop for Operation Christmas Child OR our soon-to-be granddaughter expected in March!  We still do an Advent Calendar, opening each door, one day at a time, waiting for Christmas to finally arrive!  Although I enjoy Elf and Home Alone to stir some Christmas Cheer – “His” Story is still the one nearest my heart. One Father, One Son – an earthly Mom and an earthly Dad with a plan to bring Peace to all nations.  Immanuel – translated – “God with us.”  Jesus – “for He will save His people from their sins.” (Luke 1: 21-23).  One man – saving people from sins – a novel concept in a world that required blood sacrifices for atonement – mutilations – ritual,repetitive “prayers”, etc.  Has the world really changed that much?  The plan seemed simple enough – accept His love and saving grace – Heaven’s gates open wide for you….  The final sacrifice, there on the cross. Mary yet unaware of the sorrow that would one day tear at her heart — as joy-filled she held this new life to her breast.  Just an ordinary girl…

Max Lucado says this about being a Christian…. “In essence Christianity is nothing more and nothing less than a desire and an effort to see Jesus!… trying to glimpse a man – not a religious doctrine.” Peter (the fisherman turned apostle) says that they were “eyewitnesses of His majesty”!   Oh to glimpse Him…

One Sunday morning, Havilah ran into the room – “Mom, that’s my dream I had last night! This song, #5 – it was my dream!” I asked her to tell me about her dream and wrote as she did…the following is an excerpt from that dream:

 

She was there at the cross and it was dark. She was there by herself. An angel came and brought her up to heaven and asked her to sign God’s wing. She did. A lot of angels came around her, then God came up and said, “Did you sign my wing?” She said, “Yes, I did!” (Exodus 19: 4.. talking to the children of Israel .’I bore you on eagles’ wings and brought you to Myself.) He told her how He fights the devil for her. Later, He got a little closer to her and whispered, “I will never leave your side. I am always with you. … Keep listening to that love song, I am there with you!  – and that thunder and lightening – that’s me –  you’re not to be afraid..,”

 

She turned to her Dad and I and said – “And now I have 2 Dads – one here, and one always with me!  Oh and that light in her room last night – well, that was when she came back from heaven – the room was so bright!” (And I’m thinking … I SLEPT thru the bright light in her room from when she came back from Heaven’s visit!!) She said when she woke up then, she was kneeling by the side of her bed, with her hands raised and head lifted heavenward!

We went to church that morning – unaware that her cousin received word that one of his friends, a youth worship leader, was killed the night before in a tragic car accident in another state. We shared her dream, then played “Number 5″ on Chris Tomlin’s Hello Love CD. It’s a song about entering Heaven – leaving all sorrow behind -” I will arise…. ”  Heaven brought a message to earth – just an ordinary girl from an earthly Mom and Dad…

Immanuel – God with us….

love and blessings this Christmas and always,

Adrienne

Band of Angels

Posted by on Oct 31, 2008 in From My Heart | 0 comments

Band of Angels

Band of Angels carries a line of T-shirts proclaiming “01 in 800” – the number of children born with Down Syndrome!  Knowing that 90% of our children are aborted before birth – Where are the voices of the other thousands of unborn children with Trisomy 21 to be heard?  The genocide of this population of people, under other circumstances would be an outcry on Oprah or the Today Show!  When did somebody decide that a “syndrome” is not treatable or worthy of further research? When did somebody decide to give medical attention to our children, but the millions raised for research to cure other diseases would never be spent finding ways to stop the degeneration of our children’s brains?   Could a Vice-President of the United States have a child with Down Syndrome, and change the tide of this massive genocide? We remain hopeful – and watchful…..

It was timely that we watched a program about “Large Families”  that had several adopted children with Down Syndrome. It was wonderful to see children in such a loving and caring family! They took trips and looked after each other…. They also showed a boy with Down Syndrome – in a world of his own – non-verbal, moving about – but in great contrast to a video of him reading flashcards at a very young age!  I turned to my husband and said, “If that ever happened to Havilah – a part of me would just die…”  Shortly after the program, we attended the premier of Changing A Mind from the Changing Minds Foundation. (www.changingmindsfoundation.org).  It was a night that turned the sky black like midnight tho’ only 7PM – rains poured, thunder roared – and it was evident our families are made of true grit, packing the theatre to capacity!  The film included a documentation of  a  24 yr.old young woman that had gone from being fully included in her school settings to being diagnosed with Alzheimer’s. Her mother, in tears,  described it as – “We lost her….we just lost her….”  When her daughter was placed on the protocol, this young woman had “returned” to being socially appropriate again, no longer talking to empty spaces, and was riding her bike again, enjoying life!  It was a remarkable transformation and Mom was happy to have her daughter back!

Having a child with special needs, families often grieve the loss of the child that they thought they would receive…. But we didn’t know – We may have been fearful…timid … angry…confused.   We didn’t know we would grow to treasure this little one placed in our care. They are ours – we are theirs – and that’s that!  But the thought that we could “loose” our child a second time – because the degenerative brain robs them of proper functioning – seems unbearable.  Dr. Teresa Cody and The Stanford Down Syndrome Research Center believe they have found a Protocol to “change a mind” in individuals with Down Syndrome. I hope it’s a door to change the course of history!

Why am I so interested in this program? ‘Cause I’m a Mom and I don’t want to “loose” this precious one while she is still here among us… Heaven will call us each home one day – but until then, she’s our treasure here…

love and blessings,

Adrienne

Hurricane Ike

Posted by on Oct 1, 2008 in From My Heart | 0 comments

Hurricane Ike

We watched the news as long as we could, before turning in for the night when Hurricane Ike arrived in Texas.  Days before, charting Ike’s course – not knowing where it will hit – but certain it would hit somewhere on the Gulf.  “Only” a catagory 2 – maybe 3 hurricane, we decided to stay put, as it would only be the winds we’d have to deal with – and not the flooding.  The winds howled through the night and Havilah, who felt sure we should have left before the storm, managed to sleep on a mattress we set in our hallway.  At dawn, the yard was covered in patches of sticks and leaves, and the top halves of 3 of our large trees. A few shingles needed to be replaced – and water spots to cover in our kitchen ceiling – but no structural damage.

I have met families that have lost considerably more –  3 cars crushed with one tree – a vacation home in Galveston – a rental home of a retiree was swept away in Bolivar Penisula …. Power for some – recently restored – dependent on the ice and water trucks to keep the day’s supply of food from perishing…

But I’ve also seen granddaughters spending time with their Grandmothers while school was still out –  Entergy employees pulling a trailer out of the sand so a retiree hasn’t quite lost all …  kids away in college getting a few home cooked meals while families take unexpected “vacations” waiting for power to be turned on   …. neighbors helping neighbors because that’s what ya do – you come alongside one another and ease the journey…..

The storm passes… flowers bloom again.

An expectant friend of ours has just received the news that her child has a rare Trisomy. (not 21)  There is only a 50% chance she will carry the baby to term, and less chance the baby will live a year…. Their second child, they waited to have children, and may not have a third.  Her face showed the ache in her mother’s heart… and the storm that was just starting to brew…  With everything in me, i wanted to stop this “hurricane” for her.. Words of comfort, care seemed to fall to the ground – “i’m so sorry” – “doctors don’t have the last say …. we’ll be praying for you and the baby..” – “cherish the time you have with your baby boy now..” – “you are young – maybe another child” – “have you considered adoption”….  and i wanted to hug her and cry with her as i am for her now…

But the storm seems certain to come…

If she could see with Havilah’s eyes – she’d know it will be OK.  After Ike rolled through, she shared a dream with us.  She saw two storm clouds up in the sky. When they came together, they made “God’s face”.  She was going to be OK in the storms, (have i mentioned she does not like thunderstorms?) – God was there!

Someone told me that Ike was a shortened version of “Isaac” – which means laughter …He promises in Psalm 31:10 “Weeping my endure for a night, But joy comes in the morning.”

You are not alone. Morning will come – And you’ll be able to see the blooms with their vibrant colors again…

love and blessings,

Adrienne

School is Back

Posted by on Sep 2, 2008 in From My Heart | 0 comments

School is Back

School is back and all the cute ways that teachers attempt to get to know their students… Havilah was asked to label seven events of her life and put it on a timeline. With a start from school that included her birth and the most recent news that she would soon be an aunt – her homework was to find 5 more events. When I attempted to draw events out of her – she could only come up with recent events – like “I spent the night at my cousins.” – or “I went to my sister’s apartment in San Marcos.”  Still trying to inspire her to remember earlier times in her life, I thought if she watched a video her brother created celebrating her life, it would trigger an “event.” We watched it together (watch it here) – smiling in spots – and her eye on me to see if it would bring a tear to my eye – which it did! Finally, I asked her if she thought of anything else we could add to the timeline telling about her life.  She said, “Oh Yeah – remember the time Sam made a movie about me!”  I smiled and then gave her specific events we did together as a family  and a few of her accomplishments – including heart surgery!

I love her for so many reasons – but the fact that she lives in the here and now is just one of them! In Hebrews 12:1 …”let us run with endurance (continuance-holding on in a course, to bear without yielding)  the race that is set before us…”  After watching the runners in the Olympics – looking forward seemed to be the best plan of action – looking backwards would have cost them the race- slowed them down – lost the focus of the finish.  I could tell you of MANY times that Havilah asks, “So what are we doing tonight/ tomorrow…?” – but never do I recall her asking. “What did we do yesterday?”  Thankfully we are past the age where she literally RAN away!.. ahead!  among! along! alone! – but take heart – that phase will soon pass for you and your child! Like any pre-teen and teenager, she still likes to be “unyielding” sometimes. However,  she’s learned that we, as parents, are MORE “unyielding” and life goes a little smoother the faster she realizes our will is even stronger than hers! :)  Like all children, her heart is tender, but her will likes to “test the waters” from time to time – like not turning off the TV when it’s time to leave. (Her consequence is that she sits in the back seat instead of up front as we leave to our destination…) I’ve noticed recently that I’ve fallen into the trap of using “snack” to motivate her compliance, but hope to return to a consequence related to the “misdeed” as we work to assure proper social behavior.  And when I grow impatient, or raise my voice – or know I was too hard on her – she is quick to forgive me when I ask and all is well again… (as I am quick to forgive her when she asks – usually after I ask if there is anything she would like to tell me…:)  Like heaven, her memory is short with those who have wronged her. She wears her middle name well… “Grace”

May you glimpse heaven  today…

love and blessings,

Adrienne

From my (Father’s) Heart

Posted by on Jul 5, 2008 in From My Heart | 0 comments

While at a meeting, a young mother stood to share how God had healed their daughter of cerebral palsy. As she ran happily into her mother’s arms, I wondered, … ” well, Lord, if you would do this for her, would you do this for our daughter as well?”  It was just a passing thought…  for we know already that Havilah is a “precious one”, and our love for her is unquestionable, but I couldn’t help and  wonder, ‘What if….?”  And here my story might end, except that my son shared a story that he had heard of two individuals who were healed of mental retardation! He said that when they questioned one of the young people, recently healed, about what it was like before, they said it was like “living in a cloud.”

So, with my creative thoughts, I  tried to imagine what would it be like for Havilah to be healed.  No more problems with her weight – a heart fully restored – 2 chromosomes on #21 instead of 3 – she could read on a 7th grade level, learn level math problems – she would include all the little pronouns and articles she tends to leave off  when speaking.And she would remember who was a “her”, and who was a “him”. When, Where, What, Ask and Tell would have their proper meaning. (I’m smiling as I write these things!) Perhaps she wouldn’t tell the same stories about things that have happened over and over again!  She could better understand the “no” part of “no”, and not ask for something more than once. We wouldn’t be going back to the orthodontist to find a way to make space in her tiny upper mouth, pulling out the baby teeth that are perfectly happy still being there!  When peers come to play, they wouldn’t say, “… kids at school make fun of Havilah, but I tell them to stop!”  I am thankful for her friends. I thought of all these things – and more – of driving license, freedoms to choose  whatever she wanted to do with her special gifts – of weddings and grandchildren… of a transformed mind and the body she will one day possess in heaven. Imagine if it was here on earth – now, completely whole!  Honestly, haven’t you ever wondered….?

Well, if I told you that there was this gift for your child, would you want to see what it is? If I knew of a gift, and didn’t tell you, would you be disappointed that I didn’t?  As families, we share information that we believe will benefit each other. There have been so many phone calls and emails inquiring about the state funding for our children – we will probably run those contacts several times a year now, in the newsletter.  – Getting back to the “Gift” — Psalm 77:13 & 14 states, ” Who is so great a God as our God? You are the God who does wonders…”  Noah Webster says wonder is …”that emotion excited by the presentation to the sight or mind, of something new, unusual, strange, great, extraordinary, or not well understood – INEXPLICABLE!

At a church called “Morning Star”, Prophetic words (words God speaks to people through people) were given for 2007. Bob Jones (he’s been to heaven and back a few times!) and Robin McMillan were sharing these words during a service. They stated that there would be “hidden things, and surprises this year.” Included in those “surprises” was “.. a release of miracle healing power for Down Syndrome children … to heal people with Down Syndrome… Let’s believe God for these great people!”  WOW!!!!  Imagine what a wonder that would be!

Would you like to hear this for yourself?  If you go to myspace.com, @ the banner at the top, click on VIDEOS tab. In search field, type in BobJones2007. “Prophetic words for 2007” will pop up. Click to view the service. The specific words for our children are about 2/3 into the message…

In I Samuel 16:7 – The Lord reminds us, “… for the Lord does not see as man sees; for man looks at the outward appearance, but the Lord looks at the heart.”  So, the God who looks at the heart, sees the heart of our children, and their parents, too, and says, “See, I have this gift for you… I know all,  and I’m a God of wonders – and I’m not finished yet…!  Is anything too difficult for Me?  Only believe. If you believe this child is my gift to you, will you not also believe I have more for you as well?”

Tonight, Havilah will probably pray again …..”And God, send your angels to sing to me again, and when morning comes, they can stop.” (I’ve never told her to pray this way -)  Psalm 42:8 – “The Lord will command His lovingkindness in the daytime, And in the night His song shall be with me….”     And I will thank Him for His wonderful ways! I love you.

from my heart,

Adrienne

Fantasy Meets Reality

Posted by on Jun 16, 2008 in From My Heart | 0 comments

If you can – visit the land of Narnia again with Prince Caspian! It was there that Lucy, the youngest,  could first see Aslan! Others said they wanted to, “but perhaps they weren’t really looking.”  Narnia was in turmoil and they couldn’t understand why Aslan would not prove Himself to them!

After seeing an empty tomb, 2,000 years ago, three women were sent back to tell the disciples with a promise that they would see the Lord. One woman saw Him and tried to tell the disciples she had seen Him!  Like Lucy, the others did not believe she had seen the Lord! Soon, two other followers saw Him as well, but the group of close-knit disciples still did not believe it was so! They could not imagine that he could really be seen alive again!

But God, in His mercy,  would come into their midst!  There in that moment of their weakest “faith hour” – the time they experienced the most unbelief — He appears to the eleven now faithless followers. These were the same who walked and talked with Him! They ate meals – watched miracles – rode out storms – It was these 11 that DOUBTED! ( — Don’t feel so bad – if you, too, doubt …. that the pain of loss will go away  …. if that sick child will be whole again …. if the wayward one will find his way home again. You see, if the ones we would have longed to be – those disciples that were at His side every day, who looked into those eyes of Love – did not believe when they were told Jesus is alive again – there is hope for us who cannot see…)

In His mercy – He appears! He gently corrects those followers for their unbelief and goes on to tell them of wonderful gifts and signs to follow all who DO believe! (Mark 14:17-19)

In Narnia, Aslan is not concerned with proving Himself, but rather “that we might prove ourselves to Him!”

So – In the storm – Hang on!

Through the darkest hours – Morning will soon be here!

Wonder if you are alone? – He is with you. He worked with the eleven (vs. 20) – Do you think you are more of a doubter than they were?! :)

Need inspiration? Watch Martian Child with John Cuzak, based on a true story of an amazing Dad and his unending love for his adopted son!  The author is advocating for the 100,000 special needs children that will probably never get adopted! The Dad comes to realize that “maybe the ones(parents) finding it easy are missing all the adventure!”  He says that “sometimes we just reach out and expect nothing in return!”  Welcome to our planet!  Priceless!

So Happy Father’s Day! May this be the year of your greatest adventure! And may you see Him as never before!

love and blessings,

Adrienne

A Dear Friend

Posted by on May 1, 2008 in From My Heart | 0 comments

Today, I got a hug from a dear friend. We’ve known each other for years, and our paths intersect from time to time. There were 4 of “us” pregnant at the time. I think I was the first to be surprised by the news of my pregnancy- and one by one, each of us in our mid-to-late thirties found out about our bundles – to – be! Havilah was born first, then 2 girls and 1 boy born within a year of each other. Their journey was to go one way, and well, you know where my journey has taken me…. I am ashamed to think that when we lost our premature twins 26 years ago – that I was almost “relieved” , because I thought – “Lord, you know I just couldn’t handle having a child with such severe physical and mental handicaps” (that was all I knew to call the disabilities our child would have…)  I’m speaking from heart to you- being honest with what the struggle that shames me now… But I wonder if each of those friends, felt that same relief.  I hear it every time a woman speaks about the birth of their child – “as long as the baby’s healthy…. then I’ll be happy”

When she hugged me, today, her words were simple and few. “You’ve done a wonderful job with her!” Noah Webster defines job as, “a piece of work”. In Havilah she saw 14 years worth of an “astonishing, exciting surprise” piece of work! I smiled, and told her it was God’s grace. I’m thinking – 14 years being carried by God’s grace in helping Him to fashion this beautiful person – isn’t that all that what  ALL Mothers do….?

Yes, I wonder if we’ve done enough speech, gone to enough therapies, taught her the right reading program, gave her enough chores, taught her enough lessons for piano/ art/ horse, etc.  ..

but the bottom line is that she has been wonderfully made – wonderful are His works! (Psalm 139:14) and in that I am most thankful!

Happy Mother’s Day to all!

You’ve done wonders!

Helen Keller & Inclusion

Posted by on Mar 11, 2008 in From My Heart | 0 comments

Well, I’ve returned from my second Inclusion Works conference. The Arc of Texas graciously presented their 15th conference…”Everyone belongs. Everyone contributes. Everyone is treasured. Everyone.”  Stacks of material lay waiting to be re-read, re-examined so that I might remember all that inspired me for those 4 days. Wonderful stories that Inclusion really does work- mixed with humor and tears and hope.  As a child, I was fascinated with Helen Keller and her “Teacher” – Annie Sullivan. Amazed that one woman, who came from an “asylum” or “poorhouse” – nearly loosing her sight herself, could reach Helen and transform her life.  Imagine the impact that Helen Keller had on society’s view of individuals with special needs and what they could achieve! Of Annie, she said, “She was unaware of my limitations.” Helen Keller became a poet, an author, scholar, feminist, political activist, advocate, lecturer, teacher… So – What are the possibilities for our children – seen without limitations? What dreams do our children hold that as a community, we can give flight to their wings?

When we first enrolled Havilah in public school for the second time, during open house, an “educator” took one look at Havilah and said there must be some mistake why she was placed in a general ed. classroom!!   When IDEA was introduced over 30 years ago, “special education” was not intended to be a place but a service!  Everyone belongs with everyone. Grocery stores aren’t segregated.  Why are the schools? And here I am – nearly ten years from the day our oldest daughter pleaded with us not to let

Havilah go to the high school she graduated from because she saw how the kids from Special Education were treated. She couldn’t bear the thought that her sister would suffer the same.  So what has changed? Will there come a day when we won’t need Inclusion Works conferences? – The conference speakers won’t mind a bit! Like a steady drum beat, the voice of Inclusion keeps sure and strong – won’t you pass it along?

Love and blessings,

Adrienne

Magnificent Creatures

Posted by on Feb 1, 2008 in From My Heart | 0 comments

February 1, 2008

This past Christmas I must have told everyone that I would really enjoy a new bird feeder — as even the  birds weren’t visiting the one I’ve had up for 20+ years. It was definitely showing its age! I’m happy to say that I now have 4 feeders to attract a variety of feathered friends!

One bird I saw on a recent TV documentary, I will never see at our feeder.  It was filmed for the very first time in its jungle type habitat! During mating time, this plain black bird transformed into a magnificent creature that the narrator could only describe as “other worldly.”  It became the most “non-bird” looking creation one could ever describe! In fact, if I hadn’t seen it happen, I would not recognize/believe  that it was a bird! I’ve never seen anything like it!

The birds at my feeder are of a more humble kind. – chickadees, goldfinches, sparrows… In our bird book, the house sparrow is the only bird whose range of habitat completely covers North America. It is and was such a common bird that two sold for 1 cent in Biblical days(Matt. 10:29-31).  Noah Webster defines a sparrow as a bird “named from its smallness-frequently seen about houses.”  There haven’t been any documentaries about sparrows lately. To our natural eyes, there seems to be nothing “other worldly” about the sparrow. Their song is described as “a long series of monotonous musical chirps.”

Yet the sparrow was one of the few birds mentioned in the Bible, and the elaborate bird from the jungle was not! There are three things that are clear about the sparrow that the Father wants you to know…

1. Not one falls to the “earth” apart from His will. (Matt. 10:29)

2. Not one of them is forgotten before God. (Luke 12:6)

3. Even the sparrow has found a home. (Psalm 84:3)

Now none of us ever planned on that sparrow finding our home, but here they are… Perhaps we were looking for that one with the splendid color, or unique melody, or something other than a bird that would sell 5 for 2 cents…. (Luke 12:6).  Oh but to Him – He is ever mindful and has seen to it that every sparrow has found a home – with a family – full of warmth and love.  Thank you for letting Him find a home in you…. one that He could trust His sparrow to….

Elizabeth Cheney wrote this poem:

“Said the Robin to the Sparrow:

‘I should really like to know

Why these anxious human beings

Rush about and worry so.’

 

Said the Sparrow to the Robin,

‘Friend, I think that it must be,

That they have no heavenly Father,

Such as cares for you and me.”

 

As you care for His sparrows, may you know He cares for you…

love and blessings.

Christmas

Posted by on Dec 25, 2007 in From My Heart | 0 comments

In her 14 years of life, our daughter has brought to us –

havilah_down_syndrome

1 surprise beginning!
2 calls to 911 when we thought she ran down the street. (1.she fell asleep behind a couch and 2. she hid behind a sheet drying on the line!)
3 years old when she began therapeutic horseback riding – and still is!
4 talents discovered so far – swimming, dance, piano, and choir!
5 years in public education/ 4 years homeschooling… will there be more?
6 siblings, including our son-in-law, with more compassion than they would have had without you in their world!
7 years in Girl Scouts – friendships, puppets, camps, Bronze Award, S.P.U.R.S., Studio 2B, badges, crafts and baking!
8 trips across this continent… California, Yosemite, Las Vegas, Grand Canyon, Massachusetts, New York City, Cozumel, Florida… and more to come..
9 times everyday you ask, “What are we doing next? What are we doing tomorrow? What are we doing tonight? after school? on Friday?…”
10 years before you needed open heart surgery, tho’ our hearts were transformed by you many years ago… who knew?
11 miles you’ve probably ridden on your 2 wheeled bicycle …. even tho’ for 9 months I’ve asked you if you would like to go for a bike ride with me?
12 months, year after year, — kindness, challenges, jr. high worries, hugs, movie nights out, help in the kitchen, knock knock jokes, inspiration, whispers to heaven, proud-of-you moments, did I mention hugs?, and love undeserved.

This was inspired by an article about a book Where’s Molly? or Finding Molly, written by a brother who lost his sister in the 50’s to an institution. During that time in America, nearly 60,000 children under the age of 14 were sent to institutions due to physical or mental disabilities! Today, according to the article, only 164 are in institutions! (With the new pre-natal screenings we could only hope thousands weren’t aborted!) I wish that I could give back the years he and his family lost not knowing Molly, but he has found her, and they are together again. If his courage was measured by the smile on her face in the picture – then he has more courage than the Lion from OZ!
Count your blessings one by one, and then count them for someone else, too. We don’t always understand what challenges other families face, but we are here together for the journey… Every life valuable. Every life counts!
Merry Christmas and Happy Holidays!