Thankfulness Journal - Day 8 - The Gift Of Adoption

Romans 8:15 "For you did not receive the spirit of bondage again to fear, but you received the Spirit of adoption by whom we cry out, “Abba, Father.” 16 The Spirit Himself bears witness with our spirit that we are children of God"

Last year I wrote about "Gotcha Day". 

Thirteen years ago today, after several years of waiting, this beautiful girl was placed in our arms and burrowed herself into our hearts. She has brought this home the kind of joy that can only come from trusting an eternal Savior.

Photo Courtesy: Limelight Images

Very little has been easy but it has been worth every minute. It has given us a picture of our Father God's heart. The way He acts on our behalf. Takes care of every need. It isn't His will that we suffer but He knows that our health and maturity depends on it.

We didn't set out to adopt a child with special needs. No one who gives birth looks to have a child with a disability but we all love our children just the same. We fight for their care, we look our for their needs and we long to know what is going on inside of their minds.

Our God wants that for us. He wants to bless us with His presence. Trusting Him with our thoughts draws us closer to Him in faith. 

We love our Princess. She has brought maturity and faith into our lives. We have naturally drawn closer to our God. The Coffee Guy says "I know Jesus hears us when she is around!"

With her arrival has been laughter and tears but always,



Hope

Something to Smile About

Sweet Feet

Before we met our The Princess, one of the things we had been told besides having a cleft palate, heart murmur and possible deafness was that she had club feet. As it turns out, she didn't. She has a "rocker bottom foot" which just means she doesn't have an arch. From day one we have called her "Sweet Feet" among other nicknames (we are a nickname kind of family).

Ray took this before sending her off to school one day last week. She was having fun with the new socks. Ray is one of our "in-home support" workers. What a deal to be able to hire her to come in daily to get her little sister ready for school. It has helped to cut down on fatigue and avoid burnout. It gives them time together. They adore each other.

Leonidas

This is Mr. and Mrs. Ray's youngest cat. This is the view when Ray woke up one morning. A couple of weeks ago he went missing for two days. You can see why we all panicked.

Saturday Brunch

 Twice last month we were able to have the Mr. and Mrs. Ray over for Saturday brunch. I would do it every week if I could. Finally we decided that we would do it every chance we got rather than an all or nothing kind of deal. Both times it was bliss.

Leonidas and The Cheat

Just threw that in to make you say awwwww.

7th Grader Extraordinaire 

We will end with The Princess on her way to school. I'm pretty sure her sister was missing Disneyland that day. (Yeah, alright, we all were...)

Thought it was time to lighten the mood.

Always,

Hope

My Reaction Just Might Surprise You

I recently ran across this photo posted on Facebook. 

It originated from The International Downs Syndrome Coalition. That child is just beautiful! I love the photo. What might surprise you is that what is says it bothered me deeply.

My beautiful daughter was placed with an infant rescue organization when her birthmother believed that she didn't have the ability to care for her. She was a brave but broken woman who found herself in a situation that she could not handle. This was the only option she saw for this incredible human being who was born with a broken body.

I have no way of knowing what was said to a frightened woman sitting outside of the neonatal intensive care unit as the child she gave birth to clung to life. What kind of grim picture was painted by the doctors who knew very little about the extra chromosome that wreaked havoc on her forming body? What choices did she think she had when she weighed her options?

What I do know is this:

She had no support at home to raise a child with multiple medical and developmental issues.

She had no way of knowing what a beautiful imprint this child would make on the lives of those who know her.

She believed that what she was doing was the right thing for her daughter and she was right. She released her to be someone else's daughter.

She loved her enough to place her for adoption. Not everyone with that choice has the strength to take it that far.

Emphasizing that this child was "abandoned" is throwing considerable pain on a person who has made the most difficult decision in life. To determine that you do not posses the ability to raise your own child is beyond my own comprehension. Since we don't know what the birth parents knew or their abilities to care for any child, can we just extend grace?

Please understand me, the website that posted this has a great objective. They are educating others on the value of individuals born with disabilities. They are advocating the adoption of children with Down Syndrome, I am all over that. Celebrating every life is a joyous thing!

While we are celebrating, let us not forget to show compassion to the birth parent who doesn't have the benefit of education. The frightened family with resources who took the only route they believed they had may have made the tougher choice by walking out. We don't know. There is no benefit in vilifying them for a choice that led to a better life for that child.

We can celebrate the adoption of these children with the reality that it is a difficult task. Adoptive parents aren't heroes any more than any other parent. What we do makes us stronger if we allow it and when we receive the support we desperately need.

If you want to support the choice of adoption, support the birthparent as well as the adoptive parent. Try to understand that choosing to leave their own flesh and blood at the hospital may have been the most loving gift that birthparent could have given that child.

Always,

Hope

Pure In Heart

My Beautiful Girl

You are evidence that life is full of blessings we don't deserve.

My precious daughter, the world may never understand your beauty.

That's okay, I can't begin to understand the world.

So much in it doesn't make sense.

You, beautiful child, you make sense

You are the essence of beauty

You exude joy, purity, peace, endurance

That day you were placed in my arms, I was speechless

It was no different from the night your sister was placed on my chest

You were no less mine and I was fully yours

You weren't created in me, you were created for me

You saved me

The Creator of the Universe made us for each other
You and I are "wonderfully made"


I lost track of how many nights we have spent
with medical equipment as our soundtrack

Do you know how many times we have driven to the children's hospital?
Me neither, I stopped counting years ago
I am grateful that has finally slowed down
(We were all getting tired of it)


I know what the world sees

A little girl whose body doesn't work right
They don't hear you talk or walk
You don't learn the way others do
Your liquid food is pumped through a tube in your stomach
Let's not discuss too much about the diapers
Some people are a afraid of you
They see a broken little girl

They are wrong
So very, very wrong

You are so much more than your body
You have a twinkle in your eye
A contagious laugh that exudes joy
You are brave, strong and smart
and so very innocent

Your soul is pure

You have added depth to my story
My faith is deeper and even stronger
We have met beautiful people because of you
So many lessons we've learned
The lives you have touched
Those are your ministry my darling

You are a minister

You teach grace
You teach mercy
You teach compassion
You know peace

You are a miracle

I am so grateful you're mine

The Current Cover Girl for Chromosome 22 Central

Always,

Hope

I have added this post to the Parenthood link up!

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Teaching Our Children to Seek What Matters

I want to be Sarah when I grow up.


There, I said it! I want to be a thirtysomething, fiery redhead, living in Canada, raising three tinies and passionately loving Jesus with every fiber of my soul. Ok, not really, I am so blessed with what God is doing in me here and now with my 40something life in the States where I am learning everyday about His grace.

Sarah knows I love her. I have told her more than once. I will keep telling her. I am so blessed by what God is doing in her and through her. She has wisdom that would seem to be beyond her years but this is coming from an older woman who longingly looks back to those years, wondering "what if" I was that wise back in those days.

~~~~~~

My friend Sarah wrote this morning about how her almost six year old daughter mentioned that she wants to lose weight. In her usual form, she handled it with intelligence, eloquence, passion and love. Sarah spoke my heart about our value in God's eyes. She guided her daughter in a beautiful discussion on the path of focusing on what is really important.

I have shared my feelings about true beauty in women. As I read her piece this morning, my mind immediately went to my own Princess. The one born with a rare genetic disorder that caused multiple birth defects. My little girl will always wear diapers, is learning to walk at the age of 12, does not have the ability to speak and would seem to be locked in a body that will never be considered the world's standard of "beauty" and it makes me sad.

Taken by Shae Steffensen
A true artist who knows about true beauty

Don't get me wrong, I am not sad for my girl. She has an intimacy with her Creator. You know, the one who says she is "fearfully and wonderfully made". She is strong, gentle, kind, spunky, funny and so beautiful that sometimes I stare at her. It is society that is missing out. People who are not the "right" height, weight, race, intelligence or "socio economic group" to be considered as valuable. Yet, the God who made us, sees our everything in us. He sees our past, present, future and loves us with "an everlasting love". He sees our follies, our focus with our imperfect hearts and still adores us.

Yesterday a friend voiced frustration about her son's stature always being pointed out. I have seen this same discussion about individuals who are taller than most as well. I wonder, at what height does someone get to avoid the comments? At what weight do we become acceptable? When I was young it was the MetLife Weight charts, then it went to BMI and now that is being abolished! How can we hold people to a standard when the standard keeps changing?


My goal is God's standard for me. You can't find that on a weight chart or in a size standard. Besides, what good would being thin be if I lacked grace, mercy, kindness and devotion for God? How about, like Sarah, teaching our children the value of truly accepting what is unique about each one of us. If we allow our focus to simply be to what Jesus said in Matthew 22:37 “‘You shall love the Lord your God with all your heart, with all your soul, and with all your mind.’ 38 This is the first and great commandment. 39 And the second is like it: ‘You shall love your neighbor as yourself.’


Always,




Hope

50 Days to 50 - The Unexpected

Day 3

One of the best things I could have ever
taught my older daughter was a lesson only God could teach.

We didn't set out to rescue anyone.

There wasn't a desire to seem noble or heroic.

The path was full of detours that felt like dead ends.

But they were just detours.

The rough roads were part of our journey.

They prepared us in some ways for what was ahead.

Some see children like her, children with disabilities as a burden.

We don't.

We see blessings.

I have been told that she needed us.

No she didn't.

We needed her.

Always,

Hope

(NOTE: This is my Jubilee year. Scripture speaks of this year as a time for restoration and debts to be cancelled. I see it as a time to reflect and to count my blessings. Knowing how precious life is and how miraculous it is, I want to write about His goodness.)

The Sixth Grade In My Dreams

(Note: I started this on the first day of school but things have been hectic. I decided to finish and publish it anyway.)
No matter if your sixth grader attends the last year of elementary or the first year of middle school, sixth grade is a big deal. There are so many changes, expectations of a new level of maturity and relationships with classmates begin to change throughout the year. Well, that is for typical students, not for The Princess and this morning, I am having a hard time with it.
This is the first year she won't advance with her class. The typical sixth graders are at the middle school this year. She will to attend the Complex Needs Classroom for at least another year and truly, I am grateful that we have that resource. I was very glad when I heard the news in May that we would be staying, but today I felt the tinge of sadness that although this is "our normal", this wasn't our dream. This is our stark reality as well as hers.
I know I'm not alone (though sometimes it feels like it).
Even with that, I still like the "back to school" season. I like the newness, the crispness in the air and the over all feel of the activity. I do better with structure and I know The Princess is happy to be busier. She is working hard on learning to stand and the communication exercises seem to be helping. Someday I may really get to know what she is thinking. Will she care that she doesn't "fit in"? Will she notice that she isn't typical? Will she stay blissfully unaware? (I have to admit I hope so.)
So this is where we are for now. This is our life. We trade worrying about boys, mean girls and the pitfalls of middle school for timing her g-tube feedings, getting her incontinence supplies delivered and making sure her services at school allow her to go as far as she can in her life. In the meantime, we enjoy the smallest of moments and the biggest triumphs. We will continue to experience the treasure the God has placed in our lives.
Always,




HOPE

Yes, I Really Am Her Voice

Who knew that advocating for your child could get messier than changing a eleven year old's diapers? It goes to show you, I always have something to learn.
In the current battle over words and an effort to bring attention to how the media handles hurtful "jokes", I found myself defending my position to folks who I thought were on the same side of the issue as I am. I guess even in the community of people that are defending the rights of those with disabilities there is an us against them mentality that I really don't get. Doing the semantics dance with self proclaimed "self advocates" isn't  irritating, it is aggravating. No parent wants to be accused of mistreating their child but to be accused of "placing focus on yourself rather than on the person it should be about" and the fact that I presume to speak for The Princess is so "offensive it makes me want to cry." Unfortunately when I tried to reply, it had become very ugly. It became so bad that the original poster shut down comments making it impossible to respond and leaving whatever was said last hanging in the air. 
How does this happen? How do people who are fighting for the same thing (presumably dignity for people with disabilities) end up fighting eachother instead? If my daughter cannot self advocate, does that give permission for "self advocates" to exclude her or myself from the disability community? Since when does it change me from a tenacious caregiver to an offensive, selfish person? Why is the pain of watching my daughter being mistreated suddenly not appropriate? If I write and speak in defense of her dignity I am harming her in some way?
At this point in time, The Princess cannot communicate in either written or spoken word. She cries when she is in pain, she screams when she is mad, she laughs when she is happy and she giggles when she goes fast or sees people dancing. The best comparison would be to say that her expressive ability is about the same level as a 4-5 month old and her receptive ability is around 3-4 years but that is extremely difficult to judge. So it is up to me, The Coffee Guy and any other caretaker to tune in and listen to what she wants or needs. It is at that point that one of us will use our voice to be her "voice".
Dictionary.com defines voice:
noun
1. the sound or sounds uttered through the mouth of living creatures, especially of human beings in speaking, shouting, singing, etc.

There are times when we all need someone to speak up for us. All children need this at birth, some will need it longer than others. Some folks will "tune into her frequency" but most of those providing therapies, services and education don't have that kind of time to tune in, so I speak for her. I am her voice, not her mind, not her emotions and certainly not in this to be "coddled" or have the attention focused my way. I am in it because I was given the gift of a daughter who completely changed my perspective on parenting, friendships, faith, community and value.
Sadly, these "self advocates" are only able to see their own struggles from their own perspective. Not one has admitted to being a parent. I am not in any way (nor have I read where any other parents who were advocating) saying that my struggle equals that of my daughter. What I am saying is that I know her struggle up close. I walk with her (figuratively) through her struggle daily and speaking for her is not something I take lightly.
This type of thing is not just in the realm of families or persons with disabilities, I could list many groups that should be better at working out their differences in pursue the common good. Sadly, some aren't able to let go of their own perspective in order to understand someone else's. We let our tainted view or preconceived notions determine how we perceive others instead of opening ourselves to new possibilities. The irony is that this is what so many of us in the disabilities community fight for continually. We want ourselves, our children or loved ones to be seen as more than their diagnosis or their thought process or even their equipment.
We are all on the same side. We may be standing in different places with our own perspectives but we are fighting the same enemy so we owe it to ourselves and those we are advocating for to join forces with respect and compassion to those who really are on our side. After all, I value the perspective of someone who is able to use their own voice!
Always,


Hope

The Battle Over Words

Last week I found myself actively fighting a war that usually just takes place in my head. The whole conversation about words and the power behind them has had my brain engaged in this battle all week long. Some very thoughtful posts have caught my attention but the comment follow-up has captivated me. As I mentioned in my previous post, the words themselves are not as worrisome as the attitudes that we attach to those words. Many have spoken out on the writings of others with almost a righteous indignation about their "freedom of speech" or about how the parents of exceptional children are being too sensitive. Julia Roberts, the author of this article, points out, "Their “right” to use terminology that offends, even in the face of being educated that it’s hurtful and perpetuates hate and discrimination, is what they want to use, just because to them it doesn’t really mean anything. To them, a joke. They defend with great passion." Like I have said before, if it means nothing to you than why do you spend so much time vehemently arguing to prove your point. 

Here is my point, as a parent to a child who may or may not understand what you are saying, it really matters. We know that speaking encouraging words to our typical children helps shape and mold them. So what about our children who have physical, medical, emotional and intellectual differences? If they already need extra help, doesn't it make sense that taking extra care about what we say to and about them makes a difference?

I read a beautiful blogpost over the weekend regarding what we say to little girls when we meet them. As adults, how we engage our young people is so very important as they grow. After soaking in this well written and quick read, it brought to mind the awkward conversations I have had over the past 12 years when well meaning strangers have approached The Princess for the first time. Funny enough, Julia references a conversation in her article that spun off of another post where parents shared some of the uncomfortable things they have heard over the years. I found myself cringing at the audacity of those who argued that we were all being "too sensitive". Obviously that is how others become callous towards other human beings that they share this planet with.
I'm okay with it though. I grew up being told I was too sensitive because I'm a "major weeper". I'll admit it, I cry a lot. I have come to grips with this horrible character flaw by reminding myself, I would rather be a tender, compassionate human being who passionately enjoys life, than one who can't feel and abhors others who can. I am passionate so I feel deeply, I hurt deeply and I love deeply. In the past 11 years I have been taught by a priceless human being what it really means to trust, to have faith, find joy in the simplest of things and carry no malice. She has endured countless surgeries, procedures and indignities. Her intellectual disability has been used as a slur by political figures, as entertainment in movies and thrown around in public more times than I can count. Yet, if any of those insensitive and proud of it individuals were to meet her in person, she would lean forward in her chair, look them in the eye and give the most beautiful crooked tooth grin imaginable. I still have so much to learn.

Always,



HOPE

My Daughter Is NOT A Punchline

Does she look like someone who is fair game when it comes to making jokes? Do you find her disabilities to be funny? I know it is hard to look at her and even imagine that someone would use her situation to get laughs but it happens a lot it makes me angry!

Really, look at her. Does that fact that her condition includes "retardation" even stop and make you think when you hear someone utter the r-word as an insult?

Well apparently Universal Pictures thinks it is just fine. Their movie "The Change Up" starring Ryan Reynolds and Jason Bateman pushes past the limit.

Mitch Planko played by Ryan Reynolds about his friend's twin babies:

"Why aren't they talking? Are they retarded? This one looks a little Downsy."

The one thing I am thankful for is that I found a new blog author who put the whole situation in perspective in a way I never could. He exclaims "All those cinema professionals, and none of them, NOT ONE, ever said "You know, we're making fun of purely innocent, absolutely blameless people here." 

I am not a big fan of boycotts but I have no problem warning you about the small collective intellect that was used to put together this movie. The quality of the humor can't be worth the ticket price or the gas to the theater.

So here is the big deal. Here is what I need to say to those who cry foul when they are called on the misuse of these words. I keep hearing "words don't mean anything". If they don't mean anything to you but they are hurtful to others, stop using them. Robert Rummel-Hudson, author of the above mentioned post said "Freedom of speech isn't the same as immunity from reaction. I wish people understood what that phrase really means."

This is something I couldn't let go of today and I asked myself why. Why am I trying so hard to convince a group of people to be nice. What if only one person reads this and decides to stop using the r-word or becomes sensitive to a comment made for laughs? What if it is passed on to one person who speaks up for the most vulnerable of our society? Then maybe, just maybe that will be one less hurt inflicted on another human being. Possibly one child will be spared the humiliation that a "word" (but more accurately an attitude) can bring.

I can Always Hope.

Reese's Ministry to India

It has been over a year and a half since I introduced you to Reese. A sweet little girl who was born with the same genetic disorder as The Princess and lived on this earth exactly one year. She passed from here into eternity on her first birthday but she has left a legacy that cannot be measured. Her ministry still goes on and reaches farther than any of us may ever know.
The last couple of weeks I have attempted to keep everyone updated on the trip that my Coffee Guy has been on for the past two weeks. The Lord has used many lessons, people and experiences to get him there. What I can't leave out is the part that Reese and her beautiful family played in getting us to this point.
As I mentioned in the above linked post, "At the time I found them, I was discouraged. The wife of a former pastor who had no church home. A woman losing hope in the things of faith and especially people who were suppose to help advance the kingdom. I was so parched I was unable to take in the Living Water. I felt that every attempt resulted in a run off with nothing ever soaking in. Then I found her. As I read their updates, their prayers and thoughts began to gently, quietly lead me back towards my loving God. My Savior that has a plan for every life, even mine."
Oh how far we have come from those days of discouragement. Those years where we had not only drifted from our calling but from an intimate relationship with the God we had been serving. Here we are, serving in a healthy, growing church body. Finding a deeper relationship than we had ever imagined possible with a God who at one time seemed so far away.
We still praise God for the life of Reese Renee and the faith of her beautiful parents who chose to share her with the world. Their testimony that every life has meaning and every life serves a deeper purpose has left ripples that are touching lives on the other side of the world. The only regret is that I haven't told them recently. I thought I would start by telling all of you. Who knows who Reese will touch next?
Always,




Hope

Still Thinking About Texas

This will stick with me a long time. What a priceless gift to spend time with these exceptional families! I will be forever grateful for so many precious memories in one weekend. Some memories are unique to our group, some to the host family and the rest to the Dallas area.

Sleepyhead

My Little Snuggler

A good name for her

would be Roomba

Proud Nana

G'Ma Practice

Beautiful Pond

filled with frogs

No need for

a sleep machine

Excellent Food

No shortage of Queso

South Fork Ranch

with the original JR

Proud City

6th Floor Museum

Sobering Experience

The Grassy Knoll

The Holy Grail of Burgers

Caring Host

Gracious Hostess

Indelible Moment

One of the moments I will NEVER forget from the entire weekend. This sweet young man reached out to me. My job was to sing to him as he played this little piano. When the song had no words, the cow would dance. You must know, my singing has never been this appreciated. I felt like a star! Everyone in the room was fortunate that the piano didn't play New York, New York but I didn't grow tired of "Jingle Bells" or "Santa Claus is Coming to Town" either. We laughed, we giggled and we connected. This young man is smart, loving and a treasure. At the age of 18, he has defeated the odds beyond measure. What a precious moment for me. Thank you for letting me share it with you.

Always,
Hope

A Few Things I Learned On My Visit To Texas

Last week I had the privilege to fly with The Princess to meet several other families who share the same genetic disorder, Emanuel Syndrome, as our little girl. I knew it would be fun but I never guessed how much each one of these kiddos would burrow even deeper into my soul and teach me things I think everyone should know. Here are just a few of them.

Life Is Better When...

you smile.

laugh,

 hold hands,

allow others to support you,

surround yourself with love,

allow yourself to be held,

 love others freely, 

take time for a facial, 

 spend time with

quality individuals,

make time for friends

that understand you

and always remember your friends at home.

Always,

Hope