The truth as I know it:

We witness a miracle every time a child enters into life. But those who make their journey home across time & miles, growing within the hearts of those who wait to love them, are carried on the wings of destiny and placed among us by God's very own hands. ~~~ Kristi Larson

Saturday, September 26, 2009

A big thank you....

I just wanted to say a big thank you for all my friends who have added Hope's button to your blog, prayed, left comments for Melanie on her blog, and otherwise just lifted up this precious family. I talked to Melanie yesterday and each and every person who says they will pray is another drop of hope for her. Friends, this sweet mother shared with me that every time Hope has had an open heart surgery, the doctors have told these sweet parents to go ahead and plan for what they will do when she dies, because the odds are so against her. I can't even IMAGINE having that kind of discussion with a doctor. So many times when friends are sharing troubles with me, I say, "I can only imagine." But the truth is, I CAN'T even imagine. In my wildest dreams, I can't imagine the emotions and fear that would take up residence in my heart if I were being told to make plans to bury one of my children.

Melanie and Chappy are not making plans to bury Hope. They are making plans to live! They know that God may decide to take her home, but they are praying for rain and carrying an umbrella, as they say. They are fully expecting a miracle. And they know that His miraculous plan for Hope may involve her preceding them into heaven, but they appreciate every single prayer that is being lifted for this little one.

It certainly makes the minor troubles and inconveniences of my life seem pale in comparison. And I personally am humbled that God has chosen me to stand beside this precious friend as she walks this holy path. God brought us together and formed a friendship in a time when both our lives were vastly different. He has expanded both our hearts and He has seen fit to allow me to share the lives of this precious family and the blessing is completely mine. And I am completely blown away that He has given me an outlet where I could have friends in other countries that I commune with every day, who are also praying for this sweet child. I'm amazed at the Provisions to raise an army of praying warriors for the life of this child. He knew before the sun was formed that He would walk a treacherous road with His beloved Hope, and He knew that she would need voices lifted on her behalf. Every single one of you who have prayed, blogged, commented, ministered, and loved on Hope have played a specific role that the Father predestined before time began. He knew that you would be a player in this battle and I thank you from the bottom of my heart, truly, for joining this journey with the Hollis family. My heart is absolutely breaking for these friends, I'm hopeful and broken at the same time and I just wish so badly that every one of you could meet Hope and be touched by her because she is the most special and gorgeous child you can imagine. She reminds me of a little pixie, dancing around in her pigtails and glasses. For some reason, I always picture Hope in dogears and her little pink glasses with her pajamas on, dancing around in their living room. That is the way I think of Hope the most and it's probably a glimpse of how the angels spend their "spare" time.

If you will bare with me, I want to share with you a little bit about a conversation that had with a friend of mine yesterday. I shared this with Melanie too and she thought maybe it was correct, so I wanted to pass it on. I have a friend who has twins. According to the statistics on Melanie's blog, twins occur in nature about 1 in every 100 pregnancies (if you take out the fertility drug phenomenon and mortality rates, etc. etc.) They just naturally occur about every 100 conceptions. Guess what, SO DOES DOWN SYNDROME!!!! Stop for just a minute and think about this.... our culture celebrates twins. The parents of twins are considered to have been befallen by good fortune. Everyone knows at least one set of twins in their lives, too, I bet. Most people probably have a set of twins somewhere in their family, maybe not a close relative, but someone who shares your DNA structure probably has twins, statistically speaking anyway. But honestly, I feel incredibly humbled and privileged to know someone with Down Syndrome. Not many people have a close friend or family member with Down Syndrome. Why is that? Because Down Syndrome occurs at the same rate in nature as twins, so why wouldn't we all be as familiar with Down Syndrome as we are with twins? Because early pregnancy testing and abortion have made it possible to cut the incidence of Down's to 1 in every 750 births. That's right, there should be another 650 babies with Down's born for every 1 that is. But our culture and the Jerk (a.k.a. Satan) have tricked us into believing that Down Syndrome is a curse, a defect, something to be avoided, a difficulty, and a burden. And we bought into it, and we've perpetuated the fear by decreasing the number of children born with Down Syndrome so that none of us have the opportunity to love a child with Down's very often. We don't get the privilege to see the blessing that a child with Down Syndrome can be, so we continue to fear and consider it misfortune when someone is born with this "birth defect". Melanie told me that they would choose to take away Hope's heart trouble, but never to take away her Down Syndrome, because that would take away who Hope is. That's a powerful testament to the how precious these children can be in your life. Hope is not a burden to her family, but an unbelievable blessing!

So, what I said to Melanie was that I think we have gotten it wrong. I think when we get to heaven, God will hang his head in sorrow and tell us that Down Syndrome was meant to be a blessing. It was a special gift bestowed on a few angels that He intended to set among us to remind us of how it is supposed to look. I think He is gravely disappointed that we have rejected these special ones who were to stand as our road guides and our reminders. What does Hope remind me of, you might ask? She's only four and she can't speak a word. She reminds me that you should greet each person on their own merit, regardless of skin color, social standing, economic status, or belief. (Hope never met a stranger, not ever an enemy.) She reminds me to laugh and smile when I'm happy, cry when I'm hurt, and not hold on to it for too long... move on! She reminds me that when we see someone who is different from us, we shouldn't ignore them and look away, but we shouldn't gawk either. We should treat them with dignity and respect and a genuine interest in knowing them as a sister or brother, not as voyeurs into their lives or as a carnival side show. All the things that Hope reminds me of are just things that our Lord wanted from us all along. So I think He sent the little angels with Down Syndrome as examples to us and reminders of what we were supposed to learn from Him, but couldn't seem to grasp. And we've treated this anomaly much like we treat other Commandments He has given us, we've ignored, we've shunned, we've disregarded, and we've generally wiped our hands of it.

I'm sorry, this post did not set out to be a lecture or a sermon. I truly only set out to thank each of you for praying for my friend and tell you that each and every person who has commented on her blog or offered to pray has truly been another grain of hope for her. But I get so angry when I hear the way they have had to fight for Hope, not just for her life, but for her dignity and respect as well. I'm screaming out to the Father not to ask my friend to give her up after such a valiant fight. I'm aching for my friend in the hurt she has endured at the hands of so many "well meaning" Christians. I'm ashamed of the hurt I've inflicted, unbeknownst, when I thought I was doing good, which I undoubtedly have said some really ridiculous things to others over the years! But most of all, I'm rejoicing in knowing Hope and I'm marveling at the grace and beauty with which her family has embraced this journey.

Thanks for listening to me complain and ramble. I love you for it, I truly do!

I don't have a Bible verse to share with you today as much as I have a verse I have turned into a prayer. I am praying this verse from Isaiah for all of us.

from Isaiah 50:4
"Sovereign Lord, give me an instructed tongue, give me words to sustain the weary. Awaken me each morning with ears to listen like a student to his Master."

7 comments:

Eight Isn't Enough said...

Thank you for this powerful post. You brought tears to my eyes because we have a daughter with Sotos Syndrome..aka cerebral gigantism....she is 6'4 and very large masculine features..she wears a mens 15 shoe. Most people look at her and assume she is a boy...Sotos is very similar to Downs but different chromosones split and went missing:-)

Anyway, I would be lying if I said that there are many days where I wish she was just "normal"...but I also know that God has a special purpose for her life (not sure what that is)...her life is very difficult lots of surgery's...no friends...quite a lonely life. She is home 23 now and we have lived with people staring...gawking...whispering...telling her that the men's washroom is over there...having to explain that "really, she is a girl". But to change her would go against everything that God has planned...she really is a "gentle giant"...but watch out when she gets mad (LOL)...she could knock you out with one blow. She also has autism so tht makes for some very interesting days...actually, most days:-)

I guess I just get so tired of everybody constantly staring and whispering...you would think after 23 years of this, I would get use to it...but a mother's heart never gets use to that, at least this mama! I had a lady (very pretty) woman staring at us and whispering to her daughter...I was so angry because she had this disgusting look on her face like Stephanie was gross or poisen while whispering...that I lost it and asked her if she would like a picture to have framed so she could stare at it in the privacy of her home because her staring was really ticking me off. Wow, was she embarassed...It was just one of those days and I snapped (doesn't happen often)...but you are so right about the staring. I think it's one thing to look and maybe in your mind figure out something but it's a whole other thing when you make a disgusting face while looking...

Sorry, this went on so long....just venting and pouring out my heart...you sure understand and I thank you for this.

Have a blessed weekend!

Barb said...

Sweetie,you don't have to thank me for praying for Hopey . . . I consider it a privilege to get to know the Hollis family and to be down on my knees asking God to heal her heart.

Lindsay said...

One of the most memorable moments of my school years was when a mother of a Down's Syndrome chid came to talk to my class at school. I was 16 at the time. From their I ended up volunteering with the Scottish Downs association, working with Riding for the Disabled and in a home for profoundly disabled children.

It taught me a lot I didn't even realise I was being taught. It opened my heart to special needs adoption.

We walk many roads in life because of those who cross our path. And sometimes those who stand at the crossroad to guide us are those so wrongly labelled "the least of us."

Kristine said...

Ditto exactly what Barb said. It is an honor.

Kristine said...

Oh..and I am copying and pasting this post into my blog for others to read...just in case they don't click over.

hthr said...

Praying & believing for a miracle!!!

Jewels of My Heart said...

Thank you again so much for your bracelet order and for helping our daughter come home...
Your family is just beautiful as is your heart.
I am so sorry that your friends little one is going through so much. I will be lifting Hope up in prayer and her family....
God's peace...
Daleea