Matters of the Heart

February 27, 2010 by nohandsbutours advocacy; complex heart defects, complex heart defect, Wife of the Prez 7 Comments


It is no secret that I advocate for children waiting in China, for children waiting who have unrepaired and complex congenital heart defects.

I do not advocate to ever pressure anyone into considering the adoption of a child out of guilt. I advocate for the child. Period.
I have recently had my heart broken nearly in two as I stepped out to advocate for a child waiting and fell in love with the child in the process. I did not intend for that to happen. I have advocated for many of these children and have felt love for them and an urgency to advocate and pray. I guess it is a chance one takes, but I’m not entirely sure I am willing to take that chance again.
At times, if I am being completely honest, I would like to rewind my life to the place where my eyes where shielded and my heart was guarded. But if I could even truly do that, then I would surely not be the Mommy of an amazing little girl, a little girl who is as typical as the next and happens to have complex congenital heart defects. And I would not be waiting to bring home our son, who also had unrepaired heart disease when we asked Ch*na if we could be his forever family.
Right now, I do feel beaten down and at times beaten up. I wonder why I bother to advocate when it seems so many people who’ve never known what it is like to parent a child with complex CHD want to tell me what it is like. I wonder why I stick my heart on the line as I see the files of these children and try to read between the lines and see that glimmer of courage and God-given strength that most of us don’t have … and then I am reminded why.
I KNOW the blessing of bringing home one of the children who is labeled as unadoptable, too risky, severe special needs … I KNOW because she is my daughter.
I so wish … one of my greatest wishes … is that these children who wait could be seen through the eyes of God … through His lens … by more families. While I often hear the many risks associated with these children … open-heart surgery, shortened life expectancy, undisclosed needs, learning disabilities, too time-consuming, burdensome, syndromes … I wish I heard more of the unique blessings they are … so near to the heart of God, courageous, strong, miraculous, SURVIVORS, and … simply a CHILD who needs to know the love of a family as much as the next child.
We can always come up with many reasons not to take a chance on a child whose condition is serious and severe, but we’ll never know what might be if we don’t take that step. And if we do take that step, we might just come so close to the very heart of God that we will be forever changed.
I don’t know if I’ll continue to advocate for these children. I don’t even know what to do next most days right now. I have known firsthand the unknowns of stepping out: coming to Ch*na and finding our daughter clinging to life in a hospital, finding out that our waiting son had emergency open-heart surgery in December and still feeling like we’ll never get to Ch*na to bring him home, and even allowing myself to dream that just maybe I might be blessed with an unexpected blessing in the process. I don’t know what I’ll do next, but I know that as long as these children wait I will dream and wish and pray and hope. And repeat again and again.


7 Responses to “Matters of the Heart”

  1. Tara Anderson says:

    Please don't stop advocating for these kids!!! I'm just starting out in this…waiting for a little girl that fits into the above criteria right now, but I already have such a heart for these heart kids. Your words and your advocating have been such a blessing to me on my journey…and have even inspired me to check off an "extra" need on our medical checklist (cl/cp). I know you're downtrodden and must feel like you're constantly hitting brick walls, but our God can take a heart of stone and turn it into a heart of flesh…He can use your words to soften the hardest heart toward these kids. And HE is!!! You're not only their voice, but you're God's voice as well. He loves each and every one of these "complex" hearts that HE created and longs to see them all in families. It's a hard call to step up to…I know, I'm scared to death!…but your advocating speaks peace and encouragement to those God is calling. Keep up the good work!!!

  2. Michal says:

    Please know that it was people like you, Advocates ,those of you that stand up and give voice to these children….. It was all of you that helped my husband and I take in a deep breath and mark "cardiac conditions" on our MCC.
    We did not end up with a child that has that special need- our son is cleft affected. But we were ready. We had been affected and changed by reading about the lives of children who have come home with these needs and have thrived.
    In my own way, I have added my voice to all of yours. In my own life. I
    I know that it is an up hill struggle and no one will blame you or think less of you for backing off and protecting your heart and mind. Listen it was and is hard enough for me to educate our extended family about Special Needs Adoption, some days I literally want to pull my hair out- and these are people who have love and joy for our son. I am always educating and having to remind them how very different our situation is from anything that they know. It's maddening, and yet, you are trying to do this with some people who may still be locked in a stance of fear and anxiety- it's tough.
    I just want you to know that you do make a difference. Sometimes it is so small that you can't even see it, but it's there. The change in people's hearts. A slow realization of possibilities. It takes time for people to move through their own fears and preconceived notions to a place where they can see a child that waits- not a condition, not a laundry list of worries- but a child that is there and real and unique.A child that will save you, a child that will bring much more to your life than you can possibly imagine.

  3. Kim K. says:

    You are such an inspiration. Don't stop. We need YOU. They need YOU. Extra (((hugs)))

  4. Karin says:

    Rest your heart for a bit and then pick up the mantle and do what God created you to do…advocate for the little ones who have no voice. I know you are tired and sad right now, but you won't always feel that way. It's a season and it will not last forever. :) You have made a great difference in the lives of some precious little ones and there are others who will need you in the future. Big hugs!!!

  5. redmaryjanes says:

    I know that it is so hard, but you are strong enough to keep doing this. You know that these children exist and that alone will keep you going. The system is flawed but children are finding homes. One of these angels is in our home. So keep talking, keep writing, keep praying and keep believing…you are not alone.

  6. Le Chateau des fleurs says:

    This blog makes me cry. You give so much hope and help to people, to those kids. We all need you.
    I want to adopt from China. I know in my heart. My husband speaks Chinese too. We have special ties to this country. It is normal to go thru a hard time. We just need to stop and find strength and then we continue.
    http://www.lechateaudesfleurs.blogspot.com

  7. Kris says:

    i had spina bifida with a solid "NO" marked on my checklist. the day i "found" Ellis i had been looking at that need again, reading voraciously on the web. told my boyfriend soon to be fiance at the time i wanted us to talk about it. since i'm the nurse, he usually would defer to my judgment on what we were capable of parenting.

    i just saw this tiny picture (which doesn't even do justice to her incredible beauty) and something in me spoke. when i opened the website mini-file, read the long list of her complex needs, i kept pairing it down- "we can do this, as long as she's not…" etc etc. the wheelchair felt like a barrier. i've no idea why now. i love her speedy "legs".

    so often, when i gaze at her absolutely radiant smile that represents the brilliance of the person she so totally is, i think the same thing. i never would have known how extraordinary she is- brave, beautiful, strong, loving, empathetic, happy…

    i will never believe that it's God's will for any child to lose their first parents. i don't believe it was "meant to be" that she lose her family, her country, her culture. but i will always believe that God brought the best that he could to her, through the caregivers in China at New Hope who loved her and taught her to write and speak and attach- all the way to us.

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