Tuesday, September 10, 2013

Vivian's Heart {adopting a "special needs" child}

This week is one we have both dreaded and looked forward to for a long time. 

This week Vivian will undergo  a heart catheterization procedure. 

Let me back up.

When Rob and I first looked into adopting from China, one of the things we learned was that a large majority of the orphans waiting in orphanages in China are labeled "special needs" children.  They are labeled "special needs" because they have a medical need or needs.  If you are willing to adopt a child with a medical need, you go through the "waiting child" program.  When this was first presented to Rob and I our initial reaction was that this was not something we were interested in.  I mean, we have three kids and we felt like our hands were full and how could we take on a child with a special need?  We wanted to say no, but we both agreed that we couldn't say no until we looked into it further and gave it some more thought.  So we did.  And we quickly learned that the list of commonly seen needs in these children varies from very minor (a birthmark can land you on the special needs list in China), to correctable (club foot, cleft lip and palate, heart defect) to more moderate and severe needs (Down Syndrome).  We also learned that Chinese culture is not always kind to those with "special needs" and many of these children are considered unadoptable in China.  It is very difficult to survive life in an institution as a healthy orphan, but these "special needs" children are the most vulnerable of the vulnerable and, in their culture, basically considered "the least of these". 

After much thought and research, Rob and I decided this path felt like the way we needed to go.  While the decision to adopt was a hard one for us and took months to make, this decision was an easy decision and we made it very quickly.  It just felt right. Of course there was added risk involved, but we had  already come to terms with that.  There is not much you can do in life that comes without risk.   So we signed on to the waiting child program and waited to see where this would lead us.

As you know, in March, we received the call about Vivian and it finally felt like this was the child  for us; this was the one we had been waiting for.  We learned in her file that Vivian was born with a heart defect (patent ductus arteriosis).  In simple terms, she was born with a hole in her heart.  We consulted our pediatrician who felt her prognosis was very good.  Of course, no one could give us any guarantees, but we simply couldn't say no.  Not to her.  So we said yes.

Thank God we said yes.
 
We never intended to share this information as we felt it is Vivian's business and not really important that anyone know.  I still feel it is her business, but now I think there are some important reasons for people to know this about her.

The main reason we are sharing this is because I know that there are people out there reading this blog who are considering the road of a special needs adoption (or who may know or love someone considering this path).  I think people are quick to say no to this path because of stereotypes about "special needs" kids.  I want people to see past that label.  Instead of worrying so much about how a child might burden, or "take away" from their family, I hope people will consider the ways in which a child like this could bless their family. These kids are SO WORTH it.  They are no less deserving of a family than perfectly healthy children.  And so I am sharing this because it felt dishonest NOT to share this.  When you think of a "special needs" child, I hope you will think of Vivian.  There are so many kids like her out there waiting for someone to take a chance on them.  I have said this before, but the biggest "need" these kids have is for a family.  Without that, they can't become as "special" as they are meant to be. 

Instead of looking at Vivian's heart as something we have to fix, Rob and I see it as something we get to fix. Had Vivian been born in the US, this repair would have been done almost immediately after she was born.  But, she was not.  Instead, she has lived with this burden on her heart for almost 3 years. One more thing that makes her so amazing.  One of the many burdens on her sweet heart she has carried over these years.

This week, we hope to heal this part of her heart.

But, what worries me more is healing the other part of her heart.  The part that was broken when she lost everything she ever knew.

Twice.

We just don't know when, or if, that part will heal. 

I am once again reminded of those words her nannies used to describe her in her file.  "She is strong in heart".  Oh yes she is. Because on top of a new family, a new house, a new bed, new food, new smells, new routines, and no one that can speak her language and explain ANY of this to her; this child has had to endure not only routine doctor visits, but extra visits to pediatric cardiologists. We are so grateful to the wonderful doctors caring for Vivian.  Have I said before how brave this child is?

 
 

 


I am also sharing this because we would love for you to keep Vivian in  your thoughts and prayers.  She is going to be so scared and so confused when we wake her at 5:00 am on Thursday and bring her to the hospital. We will spend one night in the hospital and, if all goes as planned, should be headed home on Friday.  We hate to put her through this.  But, we are keenly aware that if Vivian were not here with us, she would not be getting this procedure, and it is hard to even think about what that would have meant for her future.  We consider ourselves very lucky to be able to do this for her.  We are so happy that she will have a family to be with her as goes through this.  It is just the beginning of her healing.

I will continue to hope that more people who are considering adopting will open their hearts to these wonderful and deserving children, who should not be labeled "special needs", but should be labeled simply, "special" because that is what they really are ....so very special.



 "Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me."
-Matthew 25:40

11 comments:

  1. Maureen,

    Thank you for sharing this. I have often wanted to know what made Vivian special. I have very much respected what I knew was your choice to not share her specifics - and this is why I never asked. I struggle with how much I will want to share when we finally get to our referral. I believe, as you do, that it is the business of the child and his/her family. Again, thank you for sharing this.

    I will be thinking about you all this week and look forward reading the thumbs up when it's all over.

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  2. I will be praying for your sweet girl!! I so get "having" to share about a "special need". I had not intended to share about Janie's but in the end felt that her story could lead another family to say Yes to a child they may have been scared to step out in faith for. They are worth it every.single.time!:)

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  3. So happy you shared this! Yes, while this may be miss business, I don't think you are not talking about something like AIDS or Hep B! 7 yenars ago when I was 19 weeks along with my thrid child we got the diagnosis that he had a heart condition called TOF. The neonatologist doing the ultrasound promtly told us that we could abort him. I was in shock. Not an option for us. When I went to do the research all there was was clinical information, but not real stories. Thus I started a blog, so that other parents who may be given this diagnosis in their search for information may find our blog and see that their is hope and that these children do wonderfully. He is the joy of our lives and we can't imagine him not being in our lives. Your sharing her story is wonderful because it serves two purposes of educating other parents who have children with this condition. It also helps others to walk down this road of Waiting Child. My husband was the same in that he wasn't sure this was the direction we should go; however, like you the more research the more comfortable we felt. Our 4 child was also born with a hole in her heart. She visits the cardiologist tomorrow. We are currently match and waiting for LOA for a little girl who was born premature! Praying that all goes well with your procedure! I am sure she will do great!

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  4. Maureen, thanks for sharing your personal story. I am sure it has touched many people and also helped many people as they embark on their important and unknown journey of adoption. You are such a great writer that is so inspiring and always bring tears of sadness and happiness to your readers - I hope you always blog! Will be praying for your precious family especially for the upcoming procedure. Many blessings, Gwen

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  5. Thank you for sharing. I plan to share your great words with someone who is considering waiting child. AND my prayers are with you and your family.
    We leave in 1 week and will be in your same shoes soon enough.
    HUGS
    Kelly

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  6. Hi Maureen,
    Always a treat to read your posts and I continue to admire you, Rob and your extended family. In my former life I worked as an NP in Pediatric Cardiology. Allow me to clarify a PDA, as it is not considered a hole in the heart. The Ductus Arteriosus is one of two normal connections in the heart necessary for fetal life (the other being a Foramen Ovale - found between the upper two chambers of the heart). The Ductus Arteriosus is a blood vessel connecting the Pulmonary Artery to the Aorta, and it usually closes in the first 24 hours of life. For those that remain open (Patent), it can present problems of varying degrees. I always said to my patients / parents... if you have to have a heart defect, a PDA is the best one to have.
    I hope you don't mind my information. Glad to hear Vivian's PDA has been identified and now she can have it repaired and a normal life ahead of her. You have given this child the most tremendous opportunities... there should be a halo over your head :)
    Vivian is in my prayers that all goes smoothly tomorrow. She is in a terrific place and time in her young life and no doubt that in time, her heart will heal in all ways necessary.
    All the best and much love
    Christine in NJ

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  7. Perfectly wonderfully fearfully made. Her heart is so beautiful. And the way He knits families always brings a tear to my eye.
    ~nancy

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  8. Thank you so much for your blog. I am so glad to have found it. I have read it from the beginning and was so grateful to be able to follow your journey and see how Vivian has blossomed. It is especially poignant today as I am going through one of my fearful spells that you have described earlier in one of your earlier blog posts. My family seems so similar to yours. We have 3 kids, 10, almost 8 and almost 5. I have wanted to, really known that I was meant to adopt since I was a teen. Not just adopt, but adopt from China. It has been a topic in our family since before dh and I married and I have literally thought about it every day for the last 15+ years, even as I was pregnant and raising my bio babies. Like your dh, mine is open to adoption even though in our wildest dreams we never considered having 4 kids. I have so many moments of fear that keep holding me back. We are so busy. Dh and I both work full time, (though I'm an ER vet and only work 3 days a week), the kids are a handful, work is stressful. I could go on and on. My biggest fear is then unknown with the emotional issues of an institutionalized child and what that could do to our family. In my heart I know that chances are everything will work out in the end but all it takes is one bad story or thread on China Adopt Talk and I start questioning my sanity. Thank you for sharing your family with those of us out there that need to know that it is worth it. I'll be praying for your family this week. Jen

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  9. Praying for all of you today!

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  10. Can't stop thinking of all of you today. Hope this day has gone as smoothly as possible and that Vivian is soon back home with all of you, getting better, getting stronger, and bringing you even more love and joy.

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  11. Praying for your sweet girl. So awesome you shared her story, hoping it will touch many people's hearts. She is such a cutie.

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