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adopting a child with hydrocephalus

April 1, 2015 by nohandsbutours 0 Comments

I’ve had this conversation with prospective adoptive parents at least six times in six months, after they hear that my sweet two-year-old girl has Spina Bifida (but before they realize she has hydrocephalus).

Me: Oh, so, you have Spina Bifida on your medical checklist?

Them: Yep!

Me:  Do you have hydrocephalus too?

Them:  No…it’s scary.

I usually continue that conversation by saying, “You know, I thought it would be too, but it’s not that scary…” but that sentence isn’t quite right.  To be honest, I really didn’t think that I would find hydrocephalus scary – but sometimes it is scary. 

For those who may not know, hydrocephalus is a build up of cerebrospinal fluid (CSF) in the ventricular system of the brain, which can cause potentially damaging pressure increases in the brain if it goes untreated.  It is very common in kiddos with Spina Bifida, particularly the type my daughter has (myelomeningocele). However, hydrocephalus can also occur due to brain injuries or malformations. 

Everyday life with hydrocephalus is not very different than everyday life with any kid.  We have made it through our first round of testing, our first round of unscheduled tests (shunt is still fine), our first illness, a couple of run-of-the-mill viruses, and six months of getting to know one another.


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Hydrocephalus is a condition that likely will require lifelong management.  It can lead to learning disabilities, particularly in the area of math, and difficulties with higher level processing. At times children with hydrocephalus may exhibit higher social skills and abilities than they actually possess (a language phenomenon often called “cocktail chatter”); this can mask problems and can lead to people misunderstanding the child’s ability level.  Shunt revisions are common with kids with hydrocephalus, particularly as children grow. 

All of that sounds really scary on paper.  However, this is what I have figured out (as a first-time mom – you’re welcome world for my unsolicited parenting advice!):

Motherhood is scary.


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Putting your heart and soul into another person and loving them more than you love yourself is scary.  And if I wasn’t afraid that her shunt was malfunctioning (note to self: it’s not) I would be afraid that her leg looked funny or she wasn’t sleeping enough or she was sleeping too much or she ate too much cheese with lunch.  So I can’t really say that hydrocephalus isn’t a scary special need, because it is.  But so is childhood. 

What’s scariest about hydrocephalus is it gives a name to a fear.  It gives you something specific to worry about as a mother.  It doesn’t change the child you love.  It doesn’t make them more or less fragile (okay, technically, she can’t do flips or jump on the trampoline and there has been discussion about no horseback riding, but other than that – and she wants to, and I’ve told her to take it up with her neurosurgeon… so at least with hydrocephalus you have someone to blame for your neurotic helicopter parenting?).  It’s not any less manageable than any other special need that might require surgery at some point in time.  


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And what hydrocephalus is?  It’s just part of my daughter.  It’s just one tiny piece of who she is.  Without it she wouldn’t have her perfectly round head and her amazingly chubby cheeks (okay, maybe those are unrelated).

Without hydrocephalus, I would be missing out.  I’d be missing out on the joys and thrills and yes, the scary parts, of parenting my daughter.  She’s the most amazing kid I know – and I know a LOT of amazing kids.  I’d challenge you to not shy away from the “scary.” 

~ guest post by Kimberly

…………………………..

Children Who Wait With Hydrocephalus

Heidi is 3 years old and designated to Lifeline Children’s Services. She is post-op for congenital hydrocephalus, brain dysplasia. It is stated that Heidi is outgoing and cute, her mouth is so sweet, and she is adored. She is social, can learn new things (slowly), but she insists on it until she can master it completely. Heidi can say hello to others and pronounce clearly, but her vocabulary is poor and compared to her peers, her intelligence is delayed. This sweet one needs to find her family so that she can reach her fullest potential. Please keep in mind that several families may be reviewing this child’s file at one time. At any given time, this child’s file can go on hold or be taken back to the Shared List by the CCCWA. Please contact Lisa Kelly for more information.

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Amaris with Small World Adoption was born February of 2013 and still waits for a family of her own. Her special needs are listed as Hydrocephalus (already has shunt) and spina bifida (already had corrective surgery). She currently resides in a great foster home in Beijing. Contact Small World for more information on adopting this precious girl!

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He was born November of 2011 and his SN is listed as Anemia, Club feet, Hydrocephalus and Meningocele. “He is a sweet little boy who is able to crawl very well and uses a wheelchair. He previously had hydrocephalus, but has a shunt. He is incontinent due to his meningocele and still needs to wear diapers. He does not currently have symptoms of anemia, his diet is normal and he takes an oral liquid form of a multivitamin. He is not currently receiving any rehabilitation training for his condition. He speaks well and in clear sentences.” He is listed with CCAI, contact them for more information.

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For more information and support in regard to this special need feel free to join the Hydrocephalus Adoption Facebook Group.

Fighting for HIV+ Orphans

March 30, 2015 by nohandsbutours 0 Comments

I want to see HIV+ orphans adopted into forever families. I can’t say this was always a goal of mine, but God has a way of getting us to where He wants us to be.

For my wife and I that journey started in January 2011, while we were living in Asia, and friends of ours told us there was a little girl who was in an isolation room of a hospital. She was there because she was HIV+ and misinformation and fear of HIV often led to people being ostracized. This girl had been in the isolation area for 40 days. It was the second time in her young life that she had been abandoned. A year and a half earlier she was left at a train station.


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My wife and I prayed a dangerous prayer: “God if you don’t want us to take this girl in, shut the door.” We prayed this because God has already told us to care for orphans in the Word. Then we gave Him a full evening before making our decision to begin fostering this little girl. A few days later Lily was in our home and little did we know that we were starting a journey that would take us four years of fighting and many moments of pain to see completed.

As I reflect on this journey I’m struck by a few things that I want to share with you:

• HIV isn’t scary. When we were first contemplating taking in Lily we asked our friends, who are doctors and who’ve adopted an HIV+ orphan as well, all about HIV. What we found was that it isn’t as scary as we imagined. Most of us haven’t learned much about HIV, at least not since High School, and that has been a while for some of us;). As parents to an HIV+ child our lives are not spent in a hospital watching our daughter waste away. Instead our days are spent watching our daughter: learn, play, grow, and enjoy life. The only thing we do on a daily basis is give her medicine twice (morning and night), that’s it.

And we often tell people that she is our healthiest child, which she is. HIV is not transferred through casual contact (such as holding hands, body contact in crowded public places, working together, playing together, hugging, kissing on the cheeks or on the lips, through saliva, sneezing, coughing, fecal matter, urine, through mosquitoes and insect bites, food cooked by an HIV+ person, drinking from the same glass or cup, eating from the same plate, sharing the same telephones, bathrooms, toilets, beds, or using the same swimming pool). Our kids run around, play, and share food just like any other kids and I’m not worried. I just had no idea how normal life would be even with a child that is HIV+.


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• It takes courage to do anything worthwhile. There are no perfect circumstances to adopt and there will always be fears, concerns over money, timing, ect. My wife and I are not super heroes; we’re actually quite the opposite. The only thing we did was say “yes” when “no” made more sense and would have been easier. I will forever be grateful that we said “yes”. If you are considering adoption or if you’re considering adopting a child whose HIV+ you will have obstacles. As we find the strength to be courageous, others will also. Don’t let fear pen the story of your life, instead let God write an amazing story of redemption through you.

• She just needed a chance. Over these recent years I’ve come to know my daughter Lily and she is incredible. And let me be clear, she’s not incredible because of my wife or I, but because God made her incredible. All Lily needed was a family to give her a chance (and some medicine), God had already done the rest. Lily will do amazing things with her life; one of the greatest gifts of my life has been that God let me and my wife be part of her story. God has stories that He wants you to be a part of as well!


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This girl, our story, and the love of God are the reasons that I will never stop wanting to see HIV+ orphans adopted into forever families. If you want to get involved, please take a look at ELIM :: a Home for HIV kids in China Facebook page, “like” them, and follow their work as they serve HIV+ orphans in China.


Take a moment to watch our adoption story and learn the truth about HIV and the value, worth and amazing potential these children have.

Lily’s Story from Sharing Dots on Vimeo.


Matt, Heather, and their kids are missionaries. Their work has taken them to North Africa, South America, and Asia where they lived for the past six years. They’re passionate about: missions, adoption, and living a life of reckless faith. You can find Heather on Facebook here.

Interested in adopting a child who is HIV+? Go here to read about two boys who wait to be chosen.

 

Love is Patient

March 29, 2015 by nohandsbutours 6 Comments

“You are such a good mommy,” she whispered in her sweet little voice as her head melted into my shoulder and her fingers delicately twirled my hair.  I could feel in that split second, her guard was completely down, her back was not stiff, she felt my love for her, and was brave enough to tell me she could.  Oh, I had prayed for this moment and secretly wondered if it would ever happen.  This one moment, that happened just for a few seconds and then passed, might seem like a typical mommy and daughter moment for so many, but for us, it was a modern day miracle.  Our relationship as mother and daughter was born out of loss, and this is something I have become so aware of this past year.  A year’s worth of intentionality, patience, pursuit of my little girl’s heart, cocooning, career sacrifices, co-sleeping, prayers pleading with my Father, worry, therapy sessions, and attachment parenting manifested in this breakthrough moment.  Because of the struggle and the pursuit, this moment was all the more precious.  


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“Lydia Grace,” I said.  “Do you know what mommy’s favorite thing is in ALL of the world?”  

“Mommy’s favorite ting in all da world is loving Lydia!” she responded.  She really knows I love her, I thought.  


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If you just read my opening about this precious moment with Lydia, you wouldn’t have the complete picture.  That day still contained really hard, messy, broken moments where I saw the impact of trauma, abandonment, and spending important developmental years in an orphanage.  You wouldn’t know about the months when my daughter wouldn’t let me look at her, touch her, comfort her, feed her, change her diaper, or cuddle her.  (And honestly, can you blame her?  I was a stranger to her). Some well-meaning people told me to cherish these days “because they are the best moments of your entire life.”  The pursuit of my daughter’s heart has been the most challenging season in my life, and one that the Lord has used for so much good for both of us.  Those first few months home though weren’t the best moments of my life, they were the hardest, loneliest and most painful, and even still, are an important part of our family’s story and the precious things the Lord is doing in all of our lives.  

I have learned that in the past year, when we welcome a little one into our family who has trauma in their history, we must enter into it with them and just be present in that hard space. Sometimes, that space can be scary. Sometimes, that space can be lonely and heavy. Sometimes, we see emotions in our child that we have not given ourselves permission to feel before. Sometimes, we don’t know what happened, but we clearly see markers on the heart that something did. And in those moments as a mommy, I invite Jesus to please sit with us, to be present.  Jesus, please be near to us.  

It is in those heavy moments when I feel most alone that I know Jesus is right there with us.  I know My Jesus is most present in pain.  He sits with us in our hurt and disappointment and loss — and none of my emotions or hurts scare Him. None of her hurts or emotions scare Him. I don’t think He rushes us in our pain.  His love is patient. And what a model that is for me as Lydia’s mommy – to be present and near to my daughter in those painful, disappointing, and scary moments. I get to enter into her world as best I can, and what a sacred space that is.  


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But sometimes in my humanness, my expectations discourage me. My daughter doesn’t disappoint me.  My expectations are the root of the problem. At a recent conference, Beth Guckenberger reminded the attendees “Expectations are premeditated resentments.”  I read nearly every attachment book I could before we adopted Lydia, but I still didn’t get it until I was in it.  I imagine it would be like someone researching about what it is like to run a marathon, and then actually running one. Sometimes, what we expect doesn’t match with reality. I expected that after a few months of cocooning, we would resume life. No, we definitely needed to cocoon longer. I expected indiscriminate affection to last just a few months, but my expectations were wrong. I didn’t expect that we would still need to work on attachment and have firm boundaries about my daughter receiving physical affection from our families. But, yes, we still need to.

And, if I am really honest, I expected God to speed things up and to perform miracles right now or yesterday, actually. Everyone says, “Attachment isn’t a sprint, it is a marathon.”  I knew this saying, but now I really know it deep in my gut. I expected more progress sooner. I expected it to hurt less. I know our family expected us to relax our boundaries sooner, and even if they did not mean to, added pressure when they communicated the expectation that they just wanted the typical relationship with their granddaughter or niece or cousin or so on and so on. And suddenly, because I knew others’ expectations weren’t fulfilled, I felt pressure to sprint. Why aren’t you sprinting? You should be going faster, I imagined they were thinking. I could feel that disappointment though.

I began to feel like something was wrong with me, with us. My daughter isn’t the problem, my expectations are. I bet my daughter felt that my expectations weren’t being met too, and that makes me so sad. She doesn’t need to carry that burden or feel that pressure. And maybe Lydia, Bryson and I aren’t the problem, but others’ expectations need to change too, no matter how hard it is to grieve the loss of the imagined. Lydia needs me to extend grace to her. Lydia needs me to extend patience and unconditional love (or love without conditions). My husband and I need the same from others too. After all, marathons are the hardest and most painful, not at the beginning but later on in the run. Here we are later in our marathon, we have traveled miles, but sometimes, it is hard and we need patience, grace, and encouragement. Lydia needs for me to be patient, full of grace, and encouraging.

About a year ago, I sought out additional training in a therapeutic parenting technique. While at the training, a therapist who was also attending the session sat down next to me. At some point, she could discern that I was sad, that I expected something different. “Hmmm…” she said, “it is kind of like you got on an airplane and thought you were headed for Hawaii. I mean…you have always wanted to go to Hawaii. You fantasized what it would be like, feel like, smell like, and look like. Your friends are all in Hawaii. But when you landed, the captain told you that you actually landed in Boca Raton, Florida. It is okay to acknowledge your disappointment that you aren’t in Hawaii.  But soon, if you adjust your expectations, you will see all of the wonderful things about being in Boca Raton and you will cherish Boca Raton for what it is.”  And even though I resisted her comparison last year, there is a lot of truth to it.  My family might not ever get to Hawaii, and that is okay.  Boca Raton is precious.


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Before I adjusted my expectations, I couldn’t see the miracles the Lord was performing in my family, I only saw my disappointment. I have noticed that once I started to adjust my expectations, I could see some of the miracles and the blossoming that was happening in my home.

That first time Lydia held eye contact for three seconds. MIRACLE.

That first time she reached her sweet arms out for me to hold her and said, “Hold you.”  MIRACLE.  

That time she used words instead of hurts to express her frustration and grief.  MIRACLE.  

That time we rocked in the rocking chair together.  MIRACLE.  

That first time she cuddled me on the couch.  MIRACLE.  

That time she said, “I love you,” and really meant it.  MIRACLE.  

That time she trusted me enough to say, “Mommy help.  Dat toy scares me.”  MIRACLE.  

That first time she let me soothe her hurts.  MIRACLE.  

The first time we went to the post office and she didn’t reach out to the stranger and call her “mommy.”  MIRACLE.  

Even last night, when my daughter told our new pet, “This is a safe house.  We always have food here.” And this afternoon she said to our new pet, “My mommy’s arms are always safe.”  MIRACLE.  

Yes, oh my goodness yes, we still have really hard moments and sometimes broken days.  We are still running a marathon.  Yes.  But, my goodness, we have glimpses of what He is doing too, and it is breathtakingly beautiful. It is slow. Sometimes, it hurts. It is one step forward and two steps back, but it is ours and it is beautiful and we are present in the race. My God doesn’t write fairy tales. Adoption is not a fairy tale. But my God writes stories of Hope in a messed up and broken world that is full of pain, trauma, and suffering. He is present in our pain, He is patient in our grief, and He invites us to love in the same way.  

In the book, Kisses from Katie, Katie reminds us “…What the Bible does not mention, but what must be true is that, years later, Lazarus still died. The people Jesus healed were inevitably sick again at some point in their lives. The people Jesus fed miraculously were hungry again a few days later. More important than the very obvious might and power shown by Jesus’ miracles is His love. He loved these people enough to do everything in His power to ‘make it better.’ He entered into their suffering and loved them right there.”


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1 Corinthians 13 The Message (MSG)

The Way of Love

If I speak with human eloquence and angelic ecstasy but don’t love, I’m nothing but the creaking of a rusty gate.

2 If I speak God’s Word with power, revealing all his mysteries and making everything plain as day, and if I have faith that says to a mountain, “Jump,” and it jumps, but I don’t love, I’m nothing.

3-7 If I give everything I own to the poor and even go to the stake to be burned as a martyr, but I don’t love, I’ve gotten nowhere. So, no matter what I say, what I believe, and what I do, I’m bankrupt without love.

Love never gives up.

Love cares more for others than for self.

Love doesn’t want what it doesn’t have.

Love doesn’t strut,

Doesn’t have a swelled head,

Doesn’t force itself on others,

Isn’t always “me first,”

Doesn’t fly off the handle,

Doesn’t keep score of the sins of others,

Doesn’t revel when others grovel,

Takes pleasure in the flowering of truth,

Puts up with anything,

Trusts God always,

Always looks for the best,

Never looks back,

But keeps going to the end.

8-10 Love never dies. Inspired speech will be over some day; praying in tongues will end; understanding will reach its limit. We know only a portion of the truth, and what we say about God is always incomplete. But when the Complete arrives, our incompletes will be canceled.

11 When I was an infant at my mother’s breast, I gurgled and cooed like any infant. When I grew up, I left those infant ways for good.

12 We don’t yet see things clearly. We’re squinting in a fog, peering through a mist. But it won’t be long before the weather clears and the sun shines bright! We’ll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us!

13 But for right now, until that completeness, we have three things to do to lead us toward that consummation: Trust steadily in God, hope unswervingly, love extravagantly. And the best of the three is love.

“Your Daughter Has Autism”

March 28, 2015 by nohandsbutours 2 Comments

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My husband and I were high school sweethearts. We met young, married quickly while in college, and had plans for our life together from the start. Our plans included chasing the American dream and one child. Years went by and we were doing fine! We had our one child, a few advanced degrees, stable jobs, …Read More

burst into bloom

March 27, 2015 by nohandsbutours 1 Comments

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The waste-land and the dry land will be glad. The desert will be full of joy and become like a rose.  Many flowers will grow in it, and it will be filled with joy and singing. The greatness of Lebanon will be given to it, and the beauty of Carmel and Sharon. They will see …Read More

disruption: 3 things for parents to consider

March 26, 2015 by nohandsbutours 3 Comments

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Today we finish out our month-long series on disruption with a post by Amy Eldridge of Love Without Boundaries Foundation. We are so grateful to include her voice of experience here, as she has spent years working on behalf of orphans in China and has witnessed the wake of disruption on families and children – …Read More

find my family: William

March 26, 2015 by nohandsbutours 0 Comments

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Adorable 6.5 year old William is newly listed with Madison Adoption Associates. William is diagnosed as having hydrocephalus and spina bifida- tethered cord syndrome. He had surgery for both conditions. William is outgoing and active. He is talkative and quick to laugh. He gets along well with his friends when playing games. He is energetic …Read More

Caring for her heart

March 25, 2015 by nohandsbutours 6 Comments

Lydia March 3

I rarely seem to get the significant conversations when I try to start them. But, I try anyway. I don’t try everyday; neither of us need it everyday. In fact, there have been weeks that go by with no real attempts on my part to open those doors. But, every once in a while, when …Read More

Yes.

March 24, 2015 by nohandsbutours 37 Comments

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We say yes.  We say yes to adoption.  Not because we are ready, gutsy, extra loving, secure, or financially capable. We say yes to adopting children with special needs.  Not because we are strong, capable, patient, knowledgeable, or prepared. We say yes to adopting children with developmental delays. Not because we are competent, gentle, even …Read More

four families found

March 24, 2015 by nohandsbutours 0 Comments

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Advocating for Children Who Wait is an important part of what we do here on No Hands But Ours. We celebrate with great joy every time we learn that there is a Family Found for one of these children. Today we would like to share four children who were highlighted on NHBO who now have …Read More