special needs: mind your business


Ever really don’t want to write? But feel like you need to? So it’s exhausted, disjointed and painful, and feels like an insanely long dental cleaning? Well, this is one of those times. Don’t necessarily want to say what I gotta say, but feel like it needs to be said. And anyone that knows me will tell you, if I think it needs to be said, I’monnasayit.

Awhile back, my post about our sweet Vivi and the HepB translation error* furrowed some brows in the HepB community. There was talk about me and my family. Talk of how “disappointing” I was, as a special needs advocate, for being so closed-minded.

It really really hurt.

For the record, I am not opposed to adopting a child with HepB, it has been one of the needs my husband and I have been open to since we researched it extensively a few years ago. But there are needs we are not open to. Just how it is. And I won’t apologize to anyone for it. If you are pursuing a special needs adoption, you should do your research. You should have a clear, well thought out list of needs you are open to, those you would consider, and those you are not comfortable with. And if one of the needs I am open to happens to be a need you are not open to, that’s okay. You got your business. And I got my business. If we’re both bringing home an orphan with special needs, big or small, it’s all good.

We have come to each of our children in a very different way. When we filled out our application for the WC program with our first agency in 2004, our initial checklist was very limited. Looking back, it was clear how frightened we were to be considering a special needs child. But we were honest with our selves and with each other in regards to what we felt we could handle… physically, mentally and emotionally. And instead of being excited for us that we had opened our hearts to a child with special needs, our agency replied with this: “Your checklist is so limited, maybe you should just stay in the NSN program.”

I’m not gonna lie, it hurt. Somehow I suddenly felt selfish and self-centered. Like I was “unworthy” of parenting a special needs child. After recovering from the shock, I went to my husband and pleaded with him to either open up the needs we had checked as “yes” or increase the age range we had requested. He refused. And I resigned myself to the reality that maybe we just weren’t intended to be special need parents. Maybe that WC coordinator had been right, and my heart had been wrong.

Three months later we got ‘the call’ for Isabelle, a 7 1/2 month old with a minor heart defect and, well, you know the rest of that story. Point is, we didn’t crater to pressure (my self-imposed pressure included) to broaden our limits of what we felt we could handle. And we still found our girl. I was so grateful to my husband for standing firm during that time of uncertainty. It was the right decision for us at the time.

We have since learned so much, about various special needs, and about our own ability to parent through special needs, foreseen and unforeseen. And we have been surprised by how much our hearts have grown, just by witnessing, parenting and loving our ‘special needs’ kids. But, even now, we do have our own set of limits. And we definitely have special needs that we have decided we are not comfortable with. Needs that are either out of our comfort zone or out of our ability. And I’m okay with that. I think every family should decide for themselves what they feel they can and can’t handle, based on gathering all the information they can, contacting or reading stories of families who have parented a particular special need, and talking with their doctors. And then praying about it. A lot.

Other times, we found our child and realized that no matter the need, the child was ours. God had ordained it in our hearts and minds and we, through our faith in Him, knew we would be competent to care for this new child, regardless of our personal opinions (or the opinions of others). Such is the case with our newest daughter. We have plenty of experience with clubfoot, for us it’s pretty much a non-issue. Her arm deformity, our current diagnosis is Madelung’s Deformity, is something new, but we feel like this is completely manageable as well. Possible surgery down the road if and when she might have pain from the deformity, but really not a big deal.

Additionally, there is a chance our Vivi has a form of dwarfism. There are over 200 types of dwarfism and numerous subtypes… all with a wide array of symptoms. But the bottom line is that we don’t know for certain if our girl is affected. And won’t until we have some good xrays, which probably won’t happen until we have her home. So we’ll wait and see, knowing that the only one that needs to know, her Creator, already knows. And that He has and will continue to prepare us for whatever lies ahead.

Now, don’t get me wrong. Being prepared doesn’t mean being 100% comfortable. Some days I have no fears, only surety in all the red threads that God has wrapped around our girl. Other days I am scared. Not terrified, but painfully aware of the significance of the ‘unknowns’. Of how our lives might change once Vivi comes home. But over that changing forecast of cloudy or blue skies, is the sun, magnificently shining on us since we decided to step out in faith for our Vivienne. And it is on that that I rest.

Did I check “dwarfism” off on our checklist for WACAP? No.

Am I awfully glad we requested to get her file anyway? Yes.

**I wrote this post months ago, shortly after we shared about Vivienne joining our family. I didn’t post it at the time, it was too emotional. But after re-reading it 6 months later, I thought it was time :)

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Comments

  1. Well said!! Not every sn is right for every parent. Sometimes though, your child finds you and you step out in faith. That's just the way it is and you deal with whatever comes…praying for you guys and Vivi.

  2. That is a very passionate post!!! thank you very much for all you do and what you have done!!!

    I am just sorry you had been put in a position that you needed to write it

    HUGZ

  3. The Harlow's says:

    Thank you for "saying" this. You have to do what is best for YOUR family.

    God has an amazing plan for all of you.

    Blessings,

    Diane

  4. As the parent of a child with special needs and also a major advocate for families with children with special needs, I applaud your efforts to share the wonderful joys that come from having a child with special needs.I, personally, am so thankful for the creation of "No Hands But Ours", because we found our next addition there. I know countless others can say the same. What you have done and are continuing to do is Kingdom work and making a difference around the globe. I just want to say "Thank You!"

  5. I think your Vivi has enough on her plate. It's just your Mama instinct kicking in that is thrilled that your newest daughter doesn't have to manage one more thing. Who wouldn't be thrilled about that?

    Your post rings true on so many levels….

    I hope you get to go & get her soon.

  6. Thank you for posting this. We too have a "list" of needs we felt we could or could not handle. Our daughter is more serious on the list and needs at least 68 surgeries in the next 15 years. Her main condition is something we checked "maybe" to. We did our homework and were fully aware of the needs and the care she would require so there were no big surprises.

    If you asked me with our first adoption to go SN, we would have been to scared. But ultimately, I know GOD opens our hearts to the children (and their needs) that He has for us.

    I am so thankful for each of my children and the blessing they are to us!

    praying for your Vivi!

  7. Valerie and Jeff says:

    God prepares us for the work He has for us to do … each of us has different work. Some of us accept it from the word "go," others take time and much patience on God's part to get us ready to accept it and take hold of it. (I'm thinking Jonah here) I find it amazing that you wrote that post 6 months ago knowing that you needed to say it and heal from the hurtful emails that spurred it's origin. But you weren't ready to post it … and that is the awesome part. God wasn't ready for you to post it either. 6 months ago I was not reading any of the blogs I follow now. 6 months ago I was blind to even the acronym "SN". 6 months ago God was first opening the door for me. Wow. What a cool reminder of how short this road has been and yet how far I feel I've grown!
    The words "Special Needs" was scary at first. But the more I learn I'm coming to find that in God's eyes we ALL have Special Needs. Just as we're not right for every person to marry or be friends with, not every child is right for every family. I hope those hurtful words that were said were said out of corrected shortsightedness on the part of the sayer. I am hopeful that they really said them out of deep love for a child with a certain disease and that they will be careful to lift up their brother or sister and gentle in their choice of words as they confront and challenge (or rebuke) next time. And also that we will be strong as God uses us in His way and in His timing, to speak loud and not be too hurt to keep moving forward. Thanks Stephanie for stepping out in faith again and again and again.

  8. Your post was well written and touching. You should know that you are an inspiration to many people. I've been following your blog for a while now and one thing I know for certain, you love your children with your entire being. You have a huge heart and a kind and generous soul. I think you are doing an awesome thing by spreading the word about SN adoption. I went back and read your original post and here is how I know you are a good mom, a selfless and loving person, "We celebrated for her, that she had one less obstacle to wrestle with, one less burden to carry." You and your family are amazing.
    ~Lacie

    PS. Thanks to YOU and your post about visiting with The Pioneer Woman, I am now completely hooked on her blog! I can't get enough of her photography tutorials, her recipes, and her overall fun and sassy self. Thank you!

  9. I know I've never met you, but I just LOVE you! While I was waiting, you posted some similar comments on a yahoo group we share, and your words were like a balm to my weary heart. Now that we've been home with our daughter for a year, it rings even more true! Thank you for all you do to promote special needs adoptions and ALSO for promoting a non-judgemental spirit as well! ;)

  10. Such a wonderful post and so true!!!

  11. The Oswalds says:

    Thank you for being so open and honest about this and your family. You are a blessing to so many. Can't wait to see Miss Vivi in your arms!

  12. I love reading your posts not only because most of the time you crack me up, but you are one of the few who are not afraid to speak the truth.

    Filling out the paper and checking off what needs we were comfortable with and were not comfortable with is difficult. My husband and I said many times while going over it that we felt selfish for not checking off a need we did not feel we could handle. But, we know what we can handle and what we can't.

    In fact, Drew has several conditions that we did not originally check off. When I asked to view his file I was originally told that based on what we had check off, he had more issues than we could probably handle. One we had no idea what it was, two of his needs we were hesitant about, but after extensive research, we found ourselves completely comfortable with everything.

    My heart commends those who are able to take on a child we ourselves may not be comfortable with. In the end it doesn't really matter, what matters is that because we are open to SN adoption, that is one less child that will be labeled and orphan.

    Thank you so much for opening your heart to us and being honest with us.

    You are a true inspiration to many families in the adoption community.

    Love,
    Mandi

  13. Great post! Everyone is different and every situation is different. I'm so sorry that you have been judged. There is nothing I hate more…. that is why I mainly keep my girls SN private.

  14. well said Stefanie! I was so thankful that our SW told us not to go special needs for our first adoption because our reasons were so very wrong at that time. We would have been doing it out of guilt or pity, which is no way to add anyone to your family. For our second child who is SN, we had a pretty broad checklist. There were only a few things we really couldn't handle for OUR own reasons…not because those children didn't deserve a family. We even said yes to an older child with possibly severe developmental delays, but God had chosen her for someone else which was made evident about 10 minutes before we tried to lock her in. So we know with all certainty that God planned our Lydia for us. We may not rank high up there on the SN risk scale, but we don't care. We didn't adopt a WC so we could prove how benevolent we are. I'm glad you are removing this pressure that some families may be feeling to go outside their comfort zone. Any adoption has risks (even NSN or healthy domestic infants) and I think it wise for each family to evaluate how much of a risk they are willing to take. I would say we all did that when choosing a spouse. I chose a guy that flies in airplanes instead of the guy who blows up bombs for a living. My comfort zone as a young bride was not wide enough to include explosives! ;-)

  15. Sarah@VintageChic says:

    I admire you for this post and your willingness to adopt SN children. You are a wonderful servant of God!

  16. It's funny that Lacy said you got her hooked on PW. I found you from PW and now I'm hooked on YOU! :)

    I think it's only realistic to have things you know you can and can't handle when it comes to SN. You want that child to have the best match possible. And, who wouldn't be relieved to find out that a child had one less thing to be burdened with? I'm glad you got this out there. I'm so sorry you were hurt. And, I hope you get all the support you need.

  17. Patricia/NYC says:

    So many before me have said some pretty wonderful things, so I'm gonna keep this simple….

    YOU & YOUR FAM absolutley, positively R.O.C.K.!!!!!!!!!!

    You are all always in my prayers.
    Love you, girl!!
    XOXO
    Patricia

  18. Mom to my China Posse says:

    Your post reminds me how many times I have told friends who were considering adopting a child in the sn program and ask what my advice would be for their check list I always reply "what maybe be a comfortable sn for our family might not be for yours and vice versa so do your home work". Like you said when your certain you have found your child and do the research any need is doable but again what is comforatble for one family may not be for the next. case in point one of our daughters have cleft lip and palate and I have a friend who says her and her husband aren't comfortable with that at all, so she didn't check that but she did check a number of things we didn't. In the end we both adopted the children meant for our familes.

  19. Thanks for sharing!! This post was just about common sense. The real tragedy would be someone bringing home a child they discovered they couldn't handle, maybe financially, maybe emotionally, maybe physically. Funny we don't outgrow peer pressure once we leave high school. Thanks for being honest and stating the obvious!!

  20. Mom Of Many says:

    Well said Stef. We have had some horrible comments from people thru the years. I would never, ever, ever repeat some of them – they were so awful.

    Thank you for writing…you are indeed a blessing to us all..

  21. People can be so ignorant. Especially when it comes to adoption, then add to it SN adoption and well, sometimes people are ignorant and not nice! What is even worse is these things came from those with in the" most of the time" supportive community.
    You said all of it so well! I am sorry you even had to go there though.
    Who should judge someone who brought home 5 SN kiddos? I don't get it! I have found that with our second adoption (and the fact we are bringing home 2 boys) that the pressure and stupid things people say just get worse! It is one thing I have struggled with lately. I am thankful for you being willing to share the truth!
    Thanks for a wonderful post!

  22. Elizabeth, David, Katie, &Chloe says:

    Very well put. We were very scared to also switch to SN from our NSN. We prayed and prayed and got gave us the answer. And she has been home for 1 1/2 and is doing great. Her special needs was also never on our list but God speaks and you have to listen.
    Elizabeth

  23. Elizabeth, David, Katie, &Chloe says:

    Very well put. We were very scared to also switch to SN from our NSN. We prayed and prayed and GOD gave us the answer. And she has been home for 1 1/2 and is doing great. Her special needs was also never on our list but God speaks and you have to listen.
    Elizabeth

  24. Sad to know that among us who face so much judgement from others there is still a spirit of judgement.
    I truly believe that God is the one Who matches us up with our children…regardless of how we find them. What terrifies one family may be no big deal to another. I know that for me…HIV is a huge tug on my heartstrings and yet spina bifida really scares me. Does that make me bad or someone who feels pulled towards children with spina bifida better?
    Nope. I just don't believe it!
    We all have some different passions and red threads and we also share some of the same passions and red threads! Thank God!

  25. International adoption is a direction in which I've felt pulled for a long, long time – and only recently have my husband and I began discussing (and praying) about what this might mean for our family. Families, like yours, who are willing to share their journey in a very public way have made it so much easier for folks like me to truly understand what is involved in the process. I have gone through some of the agency sites, researched the various special needs, and – too – felt "selfish" or "greedy" in checking off only the special needs I think we might be prepared to handle. Some my thinking comes from where we are geographically in relation to quality medical care, some of it comes from what I know to be the attitude of the community in which this child would be raised, and some of it comes simply from who we are and where we are on life's journey. It's an intensely personal decision that you and many others have chosen to make public, and I thank you for giving an answer to those who would chastise.

  26. Colin and Jill Canada says:

    So so soooo well said.

    I believe that we have the right to decide what is best for us, otherwise there is a high risk of families falling apart because they cannot handle a 'situation' they aren't prepared for and they can't deal with.

    I also believe that God knows what we can handle, and he will lead us to THAT EXACT child.

    Jill xx

  27. I agree–well said, but disturbing that you should have to write it. I've enjoyed reading about your journey, and look forward to more.

  28. Shelly and Family says:

    Oh Stefanie – I so know EXACTLY what you mean. Having our children all having major bowel issues…I walked down this road a few times myself. All I can is you are doing an amazing job and totally dedicated to waiting children and their needs. I so look forward to reading your blog every day and I also look to you in a way for advise (when my world seems to be nothing but poop, poop, and more poop). Don't let what others have said get you down…everyone does have an opinion, but it is only those opinions that will encourage me to be the best that I can be do I listen too…

    So happy you posted this (even if it took 6 months too). In my opinion, you had every right to be concern & question what may lie ahead but knowing you and your family…these little bumps will not stop you from bringing home your daughter, Vivi…

    Take care and have a great weekend!

  29. So sorry that you had to post. Why do people judge?

    Again, so sorry!

    Love,
    Di

  30. Very well said. God calls each of us to different things in life…because that is the path he has planned. I'm sorry you experienced that. I understand.

  31. The Ferrill's says:

    I think this Max Lucado quote says it perfectly:
    "There is a time for risky love. There is a time for extravagant gestures. There is a time to pour out your affections on one you love. And when the time comes—seize it, don't miss it."
    ;)
    You are a testimony to risky love and extravagant gestures…the Lord bless you, Stefanie!

  32. Well said Stefanie. We were kinda in same boat as you and the comment about 'maybe this isn't the program for you" was also said. Well, we stuck in there, despite the limited "check list". It's all providence and orchestrated as to where God puts the "strangers" into the families and unites them.

    I don't know how many people who are open to Special Needs say "I am open to a 7 yr old boy", but we were. He had a minor SN that was left unreported…but very obvious. Most likely why he was abandoned, but it's been "self-corrected" or healed by God, I will take the latter.

  33. I agree….very well said and thanks for saying it!! Awesome post! Lifting you and your family in prayer!

  34. Once again I'm appalled that people feel they have the right to judge others on what they do or do not do. If you have nothing nice to say, say nothing at all as my mother used to say. I think you guys are amazing and the fact that you should feel you had to write this post at all saddens me. Keep doing what you are doing. You, and God, know you are on the right path. God bless.

  35. WOW!!! I'm really shocked that you, of all people, would have to explain yourself on this subject……but you did SO well.

    I think what some people might not understand is …… that SN checklist is not an easy thing to fill out! It's not fun to say no to some special needs, and yes to others! BUT that is how it works.
    That was THE HARDEST part of our adoption.

    God already knows which child is yours, and in your case, it was a bunch!

    Thank you, Stefanie!

  36. Sally- That Girl! says:

    Oh, your post is so good!!!! Had we known everything about Bryson from the get go we may have opted out. What a huge mistake that would have been for us!

    His special needs have taught me so much about myself and what I can and can not handle.

    I also respect that not all special needs are for everyone and no one should feel guilty for not checking a special need they are not comfortable with. Besides just because you don't check it initially doesn't mean that it may not later become one you would check anyways!

    Lives change, feelings changes, knowledge changes and FAITH changes everything!

  37. Oh Stef, I'm really sorry that you had to feel the hurt of this alone for all these months. I sincerely hope that the 'guilty' parties read this post and have a sense of conviction and repentence, if they have not already done so. In any case, God knows your heart and there really is no need to explain. Our agency has been adament in making sure that every family considering SN adoption, check ONLY those needs which they are certain they are open to. They stress the importance of this list, and how what is right for one family, may not be for the next. How this is an extremely individual and important, life-changing decision to make, and how we must decide what our family is able to handle…not just for our sake…but for the sake of that poor child! They deserve to have a family that KNOWS they are ready for that special need or that God has called/equipped them for the LIFE-LONG journey.

    …and to top it off…they made these judgemental, hurtful comments out of something that they misread to begin with…something they read into wrong! What's with that, anyway!?! Seriously people, we are here to edify and lift eachother up. Let this be a lesson to all of us to be in control of our tongues…or our 'keyboards' in this case!

    Have a blessed weekend, Stef. I know you can clearly see how much support you have and how VERY much you are loved…and I know darn well that's not even what you were digging for… but that's just the way it is! ….
    We alls'justs'luvs'ya!! :)

    OXOXO,
    Tanya

    p.s.>> Can't wait to see that sweet Vivi girl in your arms! :)

  38. The Gang's Momma says:

    Oooooh, I'm so glad folks said that stuff to you and not to me about you. Humph, I'd have been strugglin' with a little sin issue then. Grrrrr.

    But seriously? You are so right – the choices we make in this journey are and SHOULD BE so individual to each family. It takes all comfort levels, all educational backgrounds, all life experiences, etc. to get these babies into their forever homes. ALL kinds. We need each other so much to accomplish this.

    It's so vital that we WHO SHOULD KNOW BETTER be supportive of each other and come together to ward off the attacks of the uninformed who don't know better.

    We got your back, girl. And Patricia from NYC nailed it: YOU ROCK.

    You are more than ever, my bloggy hero. Sigh. I just love you. :)

  39. (Big Sigh) Wise words, Stefanie! : )

  40. Cannot imagine anyone talking badly about you or your incredibly beautiful family and your huge heart and work for SN kids!!! You are a very giving, caring person and were an enormous help to me as we waited for Lizzie and Shepherd!! Your post was wonderful!!

  41. Wonderfully writen!

  42. Hey Stefanie-
    great post! It is so important for all of us to figure out with our hubbies what works for our family. We went down the regular road at first ( although I felt we were called to the SN route) but with all the changes God quickly made it obvious where he wanted us- PTL. Our daughter Anna was on the waiting child list – it was love at first sight for me a but it was hubby that pointed her out- I was thrilled that Cleft L/P was something that he was open too!!!! We scooped her up asap!

    Never feel like you are doing too little you are doing a ton- and our dear Lord is thrilled with your beautiful family! The imperfections make it perfect!

    BTW our two sibling daughters that we are paper chasing are in Guilin! They are 7 and 8!! We hope to travel in the spring!

    God's blessings to you!
    Jean

  43. Well said! God calls us each to different things at different times and one of the biggest diservices we do to eachother in the SN community is judge others for their decisions. Each child has value and each family is called in its own way.

  44. Stefanie…you will hear this over and over I am SURE…we were the same…a limited lists of what we were "comfy" with and then we brought home a sweet little guy with needs that, prior to him being on a list, we would have most certainly said "no" to…I tear up right now to think that we may not have had Sam in our family!!!
    God had you picked out as Mommy for each of your children long before you even considered being a MOM! I love that SOOOOOO very much!!
    Blessings!

  45. Tara Anderson says:

    Stefanie, I know this post wasn't easy to write…but it needed to be written. Thank you. And, thank you for your transparency throughout your blog. This is my first comment, but I've been enjoying your blog for awhile. I've also been richly blessed by the No Hands But Ours sight. When God started whispering "special needs" to my heart, I was able to hear His call through my own personal fears because of the information provided there.

    On a different note, my husband just separated from the military a couple years ago and we've moved twice with the company since then. It has become our ritual to head to Lowe's for a 5-gal can of "Barley" every time we relocate! Obviously, we both share the same excellent choice in paint colors! LOL!

  46. Oh Stefanie, I just think you are totally amazing :) I honestly felt totally selfish when we were checking our list and I only wanted to check heart condition. We checked a few other things but were convinced our daughter had/has a heart condition and so she does! God works in our hearts exactly as it is meant to be and I am so impressed by your heart for the special needs kiddos.

    hugs :)

  47. a Tonggu Momma says:

    This is a post every PAP should read, Stefanie whether they are in the SN or NSN program.

  48. Lost and Found says:

    Well said! I was originally in the traditional NSN program until I learned about some of the minor things that can make a child to be considered SN. I was quite limited in what I felt was manageable to me and it is that honesty that is often overlooked. While we as parents often manage the cards we are dealt some of us are quite realistic about what we can handle with certainty. My daughter's SN was NOT on the list I checked yes to but I was open minded and as you said, "the rest is history" Had she had a more extensive need that was unknown to me, of course I would have dealt with it but knowing your own limitations is the best part of parenting. I make no excuses or apologies for what I know I can and cannot handle and the same would hold true if this were a biological or adopted child.

  49. Thank you so much for sharing this. I'm sorry that you were hurt. I am sorry that people judged you for doing what is best for your family. I am constantly amazed at how easily people attack someone else without really knowing their hearts. This is YOUR family- your journey- and God knows which children are yours. I think you guys are amazing and I am so inspired by your realness. Thanks for being a voice. Amy

  50. I love this post! It is refreshing to find someone who is completely honest without the fluff in regards to special needs. We are starting the process now to adopt through the special needs program with CCAI and while I am excited, it is a scary adventure with lots of unknowns. I was wondering if you could share with me anything about club foot or cleft lip that you know about from experience? We are at the “do research” point in preparing our list of specail needs.
    -Sarah
    http://www.iwanttobakeyouabirthdaycake.blogspot.com

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