a rebuttal, if you will

I just can’t let Heather’s comment on my previous post go without comment (although I’m not offended at all, because how could you know all the details of our situation), because it strikes right at the heart of our difficulties with this situation. And I certainly don’t mean to attack her, or anyone else who thinks the same. She does bring up valid points, and I’ll try to address them.

When we decided to change our preference for adoption to a child with special needs, we talked extensively with our adoption agency and our social worker. We specifically asked for minor and correctible medical special needs of a defined nature – conditions such as cleft lip/ cleft palate, heart defects, missing limb or digit, etc. Our social worker told us point blank that she didn’t think we were qualified to adopt a child with major special needs, considering the fact that my husband is gone a good deal of the time, we have 2 other young children, live on another continent than our families, and are required to move every few years. We absolutely agreed – we were in no way ready to parent a child with major special needs. Our home study clearly states this.

When we were told about Emmett, what we were told is that there was a child with a VSD, a ventricular septal defect in his heart. This is a correctible (in the vast majority of cases) cardiac condition. We were given medical reports that stated that other than his heart, he had no other abnormalities. Over the course of last summer, we repeatedly begged our agency for more information about his health, about his current condition, anything. We received nothing, and for a period of time, we had convinced ourselves that something had happened – that he had been given to another family, had died, etc – and that this adoption would not happen. Then, all of the sudden, our official referral paperwork appeared! And in that paperwork, on his abandonment report, it said that he had a genital abnormality.

I freaked out. I called our agency, told them that we needed to get to the bottom of this immediately. I told them that another physical abnormality significantly raised the probability of a genetic syndrome, of something uncorrectable, of more than we could handle. Our agency promised to get to the bottom of the story right away.

The next day we were assured that the report is mistaken, that there was no genital abnormality – and we were sent our second picture of him, completely naked. In this picture, you can see no obvious abnormality – he looks completely normal, with perhaps slightly wide spaced eyes. Our agency told us that they had spoken with their representative, who had spoken with the orphanage director, and these assurances came directly from her.

Shortly thereafter we received our approval to travel – 5 days after they received our application.

We arrived in Vietnam, traveled the next day to Vung Tau, where he lived. We ran into a huge traffic jam and were at least an hour late arriving at the orphanage. As a result, we were able to spend about 20 minutes before our G&R with Emmett. And honestly, I think I was in shock. To me, he behaved in a way that strongly suggested developmental/neurological abnormalities. But he had lived his whole life in an orphanage. They never let him sit up, because of his heart. He was obviously small, due to his heart defect. And so we dumbly and mutely rode to the government offices, signed the papers, and were delivered to our hotel.

I later had multiple tearful conversations/yelling matches with our agency’s Vietnamese representative. I told her how concerned I was about his condition – she told me that she had given information about his physical condition and development to our agency. Our agency claims they never received this information.

That is the story of how we adopted Emmett. Were there lies involved? Absolutely. Did they come from the orphanage director, who wanted this child out of her orphanage both for his own good and for selfish reasons (we were told he had a nanny devoted only to him 24 hours/day)? Did they come from the  agency representative, who was anxious to complete this adoption for multiple reasons? Did they come from our agency – this I don’t really believe – they stand the most to lose here – and while I think they did many things wrong in our case, I don’t believe that they lied.

The way that the whole process happened has definitely affected how I feel about our family’s situation (and there are multiple other things that happened while I was in Vietnam related to his adoption but unrelated to his health that I don’t feel comfortable discussing here). I feel like we were lied to, that we walked into a situation blindfolded and totally unprepared. If we had had even the physically apparent information about Emmett – that he has hypospadias, that he has a huge open fontanelle, etc – in addition to knowing about the heart defect, we would not have adopted him: we would have felt that the possiblity of a genetic syndrome was too high and that would be more than we can handle. If we had had even a night in Vietnam after meeting him before our G&R to talk to our families, our agency, etc, what would we have done? I really can’t say – could we have left a child that so obviously needed to get out of an orphanage immediately, knowing that adoptions to the US were shutting down in a matter of days and that we could be resigning him to life in an institution? But the point is that we didn’t really get to decide. For better or worse, others decided for us, and that makes my anger and frustration even harder to let go.

The more valid point Heather raises is this – if he was our biological child, would we feel differently? Who can answer this question? I know for a certainty that if we were pregnant with a child and were told that he or she would have all the problems that Emmett has, abortion would not be an option. It just isn’t, for us. And of course, lots of things don’t show up after birth, so we could have been just as blindsided. We wouldn’t feel deceived, but I think everything else would be about the same. We would still struggle with whether we should move or not. We would still have to weigh the needs of one child against the needs (short and long term) of our whole family.

I also want to make it clear that staying would not mean that Emmett wouldn’t be receiving good medical care. It would mean that he would have the ng tube for longer (maybe, although Mike and I doubt that we could move and start new referrals in America and get the surgery scheduled before the British timeline anyway), but that is more of a pain in the ass for us than him. He is gaining weight beautifully on the tube. Developmentally, he sees a physical therapist and speech therapist once weekly, and a developmental pediatrician once every month or two. I’m not sure they would do more, early intervention-wise, in the States.

The decision is really hard for us because HERE is where our life is. We have great friends here, friends who give us wonderful physical and emotional support.

We have a great squadron here, with leadership that understands what’s going on with us – as well as leadership who knew my husband before we got home with Emmett, who don’t just define our family as the ones with the really sick kid. My husband is a respected member (we think) of our Air Force community.

We have a fabulous pediatrician, whom we’ve seen on a weekly basis since we’ve been back from Vietnam, one who actually has insight into adopted children, since he has an adopted child himself.

We have a 2 great cardiologists here, who have stepped outside of their roles as heart guys to counsel us, and to work the British system for us.

We get along well with the PT and speech therapist. We love the head of Early Intervention here.

Almost everyone involved in Emmett’s care has really gone above and beyond for our family.

Noah is in school here – every day from 9 to 3. Sawyer goes to a fantastic baby-sitter once weekly – a babysitter that has told us that she will watch Emmett too if we can get to a point that I can back to work.

We would lose all of this support, and more. Who will I go to the movies with – to eat exceedingly bad popcorn? Whose house will we spend Saturday nights at, just hanging out? Who will I catch lunch with? We have no idea at this point where the Air Force will send us. We hope Florida, where we do have friends (Beth, that’s  you, and Carolyn and Ted, and others), and family close by, but we don’t know.

Its just a lot to consider. But keep the comments coming. I don’t mind hard questions – I spend every day all day thinking about this stuff. Its always helpful to count your blessings, and we are blessed here. We are living with a very difficult situation, but we have a lot of people helping us and working on our behalf. I have a lot that I complain about (obviously) but also a lot to be thankful for here. Without our extensive support network, we would not have made it this far.

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17 Comments

Filed under health issues

17 responses to “a rebuttal, if you will

  1. Hi, a lurker here who just has to say that I respect the HECK out of you and your husband! You handled what might have been a very painful and critical comment with poise, honesty and grace! The honest, raw emotion that you pour into your posts are such an inspiration for so many of us! I can do nothing to help except pray, pray and pray, so that is exactly what I’m doing. I know that you will make the best possible decision for everyone involved in your particular situation. That’s what we (parents) do!!

  2. Jeannie

    Lauren, As far as the moving goes, I know that you guys will make the best decision for your family. There really is no “good” solution, as you are in an impossible situation, but I have no doubt that you will do what is best for all of your kids.
    As for E’s conditions, you were lied to and blindsided and you have every right to be angry as hell about it. You have been given more than any person could be expected to handle, and yet there you are, handling it every.single.day. It doesn’t mean you don’t love E or do everything in your power to give him the best care available. It just means you are angry at the situation, and honestly, if you weren’t angry I’d be worried about you.
    You are the best mother, friend, and person I know, Lauren. I know you must feel beaten down and hopeless at times, but you should know that I could not admire you more than I do. Selfishly, I’d love for you to be in the States so that I could come visit you and give you the help and hugs that I’ve been dying to give you. Please, if there is anything at all that I can do from here, let me know. I love you and miss you so much. You are sooooooooooooooo gooooooooooood 🙂

  3. Lauren you are so brave and honest to post this. Your family has been through so much so quickly, very few people would be able to weather the storm as your family has. Also very few of us – well, probably NONE of us – have been in similar shoes and I can’t even imagine how I might respond to a similar situation and doubt if I could do it with as much strength and grace as you have.

  4. Beth

    I’m so glad that you responded to that comment….the situation that happened was definitely shady. And without knowing the whole story, Heather couldn’t possibly have known what happened and why this is such a tough situation. You DID NOT sign up for this. As a matter of fact, you specifically asked for a child without major needs.
    As far as moving here, I can see your hesitance, especially if you don’t know where you’ll go. If you can be assured of coming back here, you know you’ll have support. Your parents will be very close, I’m here, along with others you already know. And I’m here, waiting for the call to surround you with support. 🙂
    If a move is inevitable (as it sounds it is), getting here before kindergarten for Noah might be good.
    This is a tough situation. I wish I could help more.
    Call me! Or email me your phone number.

  5. Christina

    I can’t imagine all that you have gone through. Just can’t. My son was perfectly healthy and our adoption was awesome and still there were days I wondered what exactly we were thinking and if we’d made a mistake adding another child to the mix. (Don’t still think that, but it’s been 2 years now!) I just think that’s a natural reaction to a very stressful situation. Then add in all of E’s very serious medical issues and the fact that you were completely unprepared mentally/emotionally for those issues… well, I think it’s an absolute miracle and proof of God’s hand upon you that you all are doing as well as you are.

    And this latest thing – to move or not to move – it is complicated. Like it or not we do have to weigh how each choice will affect ALL of our family. I think you are doing great with that too. Only you guys really know what each family member needs and how to meet that. (Okay, you and God!)

    All that to say, I have no advice, but I am praying for you – God has a plan and I know he’ll show it to you, day by day, step by step.

  6. Misty

    You owe no one an explanation! As long as you know in your heart you are doing your best you will have nothing to feel guilty about. Hang in there girl!

  7. Donna Hassen

    No one knows what you are going through and therefore should not criticize what you are going through. It seems you were deceived about his medical problems. I think you have handled everything as best as any mother could. Maybe its because instead of being in denial about what you are feeling you are open about what you are feeling. I’m sure it helps to get all of the bad and good things that are happen out. That is the way a lot of women are. I feel better after I am able to talk it out and I can think and feel more clear. I also can’t blame you about the move I wouldn’t want to move either. A good support system is hard to come by. Good luck and always know you are in my prayers.

  8. Jennifer

    I’m glad you put all that out there, even though you certainly don’t owe anybody any explanations. I wanted to put it out there myself, but I managed to control myself (amazing, huh?). I think it does help those on the outside better understand where you are coming from.

  9. WOW, you are brave. I realize Heather maybe didn’t mean for her comment to come off as judgmental as it did, I am just impressed at how you handled answering all that. You did NOT have to; none of us are in a position to judge!! For gosh sakes, I DID sign up for the family situation I have, I am beyond grateful for it, yet I STILL have days where I wonder if I screwed up!! Those emotions would be NORMAL even if you HAD requested SNs, though those of us who’ve followed your story know that’s not even the case. As far as I’m concerned, your kids all won the lottery because I can’t imagine anyone in the world handling all that’s been thrown at you better than you and Mike have. I know you have TONS of guilt…but I think that’s also a totally normal emotion when you have so many ‘best interests’ to consider and what’s great for one kid might be the worst for another. That’s the nature of making decisions about what’s best for your family overall. It’s not about which kid(s) you’re choosing over which others, or who’s bio and who’s adopted. It’s about a making decisions that will be best overall.

    If you end up feeling that a move is what is best overall and something your family can handle, I know you will do it. If you come to the decision that it would create so much chaos that 4 of 5 family members will be worse off and Emmett will then suffer more because of the overall family stress, I know you will stay put and make the best of the medical resources available where you are. But only you and Mike know what is best.

    Sending big hugs and all my prayers from here. I can’t even imagine how exhausted you guys must be.

  10. Sally

    I just have a quick question: is it possible to find the specialist that would be the best to treat Emmett in the US and then see what the timeline would be to get him treated? Maybe that would help with your decision. Also, would it be possible to come to the US for treatment without moving? I don’t know what is involved. Maybe more research might help with your decision. Best of luck.

  11. Lauren,
    I just have a couple of things to add. One, welcome to being a parent to a special needs child. For some reason people feel it is perfectly acceptable to criticize how we parent, feel and react to our situation. I gave birth to my special needs child yet I still bitch and complain about it. IT IS VERY HARD! That does not take away from the love I feel for my son but really everyone needs to let off steam. I know you are doing an amazing job w/ Emmett but know that it is ok to get angry and cry a lot. At some point (I don’t know when it will be) but things will settle down and you will get into some sort of routine with all of the kids. You will look back at this time and be amazed how things have become your normal. Secondly, you were mislead I have no doubt. THAT REALLY SUCKS. I never had a great feeling about the in country rep. Answers never really added up to me. Lastly, there are waiting lists I think you should get Emmett on for when he comes back to the states. Email me and I will explain more of what I am talking about. Programs that will provide respite care etc. Just hang in there and eventually it will get easier. I hope for your sake it is sooner rather than later. 🙂

    Christy

  12. I guess I’ve been lurking here for quite some time, don’t know if I’ve ever commented before. But I’ve been thinking about you a lot lately and have cried a few times for what you are going through and how exhausting it must all be. I don’t have any good advice or words of wisdom. I’ve been through some challenges in my life, but nothing like what you’ve been facing. I always hated when people told me I was strong or nobody is ever given more than they can handle, because it sure didn’t feel that way to me. And as I said, what I was going through was nothing in comparison. It sure seems like you’ve been dealt way more than your fair share and it’s time for things to get smoother and easier. I’m glad you’re blogging so much about it, as hopefully it will help some. You’ve been faced with so many tough decisions and now the move decision seems so huge – and there clearly is no easy, obvious choice to make. I’ll be thinking of you and the family and sure hope something starts to go your way – you’ve certainly earned it.

  13. Sally

    I wanted to add one more thing, which is I understand your feelings about being given a child with more needs than you signed up for. We signed up to adopt a child with a cleft lip and palate from China. We researched that SN, found doctors to care for him, made sure our insurance covered it, etc. before requesting to adopt him. We were told he had no other SNs than the cleft lip and palate. And then it turns out he also has epilepsy. The epilepsy is a huge deal. And I am just a normal mom and have not had experience with this condition or researched it or anything when the seizures started. It can be life threatening. We did not sign up for this. He has had seizures at school and on the bus. We finally think we have found the right medication (after 3 long years). But I wonder if anyone in China knew about it and I suspect they may have but maybe they did not. I’m not as eager to write cheery letters to his SWI or his foster parents as I used to be and over a year has gone by since I have written one and I am a good letter writer. I’m not past it yet either, I guess. It does not mean I don’t love my son, which I do very much. But I think it may not be not possible to get past this when one is in crisis mode dealing with the medical issues. To be lied to about your child’s origins, for example, is one thing, but to be potentially lied to which puts you in a state of extreme worry and fear for your child’s life is another thing. But at the root, the kids with serious issues need serious medical help and they are not as likely to get that in the orphanage. I think the root of potential lies is that they want to save the child and it helps a little to see it that way I think.

  14. Charity

    I’m glad you know that you have great support here! We all love all of you and will do anything we can to help your family out :).
    And I think Mike is really respected here ;)!!!

  15. Jean

    I want to leave a reply because I want you to know that we’re praying for you here. On the other hand, I don’t always leave a comment because all the words that I can share with you just sound too trite and too easy. I know that I cannot even begin to imagine what a difficult situation this is and all the emotions you are struggling with.

    To just say we are praying for you seems too small, I wish that I could DO something for you. That just shows my own lack of faith because then I don’t acknowledge the power of God that is brought about by our prayers.

    This is what I know — God has a plan, He is in control, there are no mistakes, His plan is always for our good (Romans 8:28) and His power is made perfect in our weakness.

    I’ll continue to pray for a miracle for all of you and that the Lord will carry you and that you will be able to rest in Him.

    Jean

  16. Ashley

    Wow! I can’t imagine the stress that E’s health issues puts on you and your family. Just day to day life with three healthy kids is stressful enough! I pray for you guys daily.
    If you make it back to FL, don’t forget to look us up.
    Ashley

  17. wow, i am a little late on this one.

    all i can say is YOU.ARE.AMAZING! i don’t know how you do it!

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