special needs

An Honest Conversation

This week I misspelled the word "fundraiser" in a text message and autocorrect changed it to "fun drainer."

Yes, I thought.

That.

Exactly that.

Nothing drains the fun  and the sense of being a grown up  quite like fundraising.  

Here is how it all went down...Our talented and amazing friends, Brandi and Danny Ebersole took Tom and I out to a restaurant over Christmas break and said  nothing close to this, but this is all I heard  basically this, word for word, "Why don't we video tape you ugly crying while you spill your deepest family guts and we will put it on the world wide web for all to see!?"

It took a platter of really disgusting steamed buns and an obscene serving of bread pudding to stuff all my feelings about this proposal. If anyone else on planet earth had asked to make a video of us sharing such a deeply personal experience, I would have punched them in the throat. But, it wasn't just anyone. It was Brandi. Brandi! If anyone could be trusted to delicately handle our baggage with care, it would be her and her sensitive and gifted photographer/documentary making husband, Danny. As fellow adoptive parents, I knew they would know and convey our heart for Harper. And as an adoptee, I knew Brandi would understand the possible implications for Harper, if this were not handled with the utmost care. So, we hesitantly accepted this challenge to initiate a conversation about children with attachment disorders and other special needs that affect a child's ability to make healthy attachments. We all understood that these conversations are frequently silenced because of shame and fear. We knew that our own shame and fear would surface, and would threaten to keep us silent as well.

In fact, there were several occasions where I panic-begged Brandi and Danny to abandon ship, and destroy all footage. But, they believed in our family, and they believed in the power of telling your truth, and they believed in all of you. They believe that you would want to know our story and be a part of a creating a bigger story for our family, one of healing. So, we went forward in good faith that God would use our family's story to bring awareness and hope to someone who needed it, as well as resources and support for our family to be healed. As hard as the public ugly crying was, the fundraiser element is even harder for Tom and me.

It makes me feel like a little girl sitting at a lemonade stand waiting for customers. As an adult, I know that nobody really wants to waste even a dime on the watered down lemonade (that was undoubtedly prepared without any concern for what is sanitary) but we buy it anyways and we dump it out our car windows as soon as we turn the corner. Why do we do this? Because we want to support the little entrepreneur's willingness to be vulnerable and to put themselves out there. I feel like that little girl right now, but with the adult awareness that nobody really wants to waste a single dime on my  problems  lemonade. I feel like that little girl sitting there, with all her ugly hurts and failures exposed before the world, saying do you like my lemonade? 

It is terrifying, and it feels pathetic and humiliating and I keep returning to those moments of panic-begging Brandi and Danny to pretend we never agreed to this project, just to be spared from such feelings of raw transparency. But Brandi's ever-encouraging voice keeps reminding me of a few truths... 

Yes, we have a long and expensive road ahead of us... and yes, we could really use a community of people who are willing to generously walk that road and carry the financial burden along with us. Still her voice gets drowned out by the loud and faithful fear/shame combo that cranks itself up on a regular basis reminding me that "adults don't need money from other people because they should be able to manage on their own!" And ya know what, that is also true. We can manage. If nobody had any desire to partner with us, we would still make every possible sacrifice necessary to get Harper, and our family, the help he needs. But, there is something beautiful about the fact that many of you do desire to partner with us, and some already have.

We are overwhelmed by how many of you have taken the time to comment or share our video. We are overwhelmed by those of you who have generously given financial gifts, as well as gifts of prayer and encouragement. We are overwhelmed that anyone would be willing to pass their words, their dimes and their dollars on to us, so that we can get Harper the best care possible and be relieved of carrying the heavy financial and emotional price tag alone. It is that humbling sense of gratitude that makes me feel a little less like I'm selling refreshments, and a little more like I am the one that is being refreshed.


To view the video, or if you feel led to participate in this mission to bring healing and wholeness to a remarkable boy, our sweet friends have organized this "fun drainer" which we invite you to share with anyone who could benefit from hearing our story. 


My Child is Not Struggling Because...

Over the past few years, the following things have been offered to us as possible causes for what we are experiencing with Harper. Most of the time the suggestions have been made in love purely out of concern, and occasionally they have been "casually" dropped into a conversation in correction or judgement. Some are shoved down our throats via Facebook articles and blogs. So let's take a look at the disordered attachment cause d'jour. 

We are going through this...

- because we didn't spank him.
- because we spanked him too much.
- because he doesn't have enough structure.
- because we are too rigid with him.
- because he needs tough love.
- because we musn't love him as much as our biological kids.
- because he's the only black/adopted child. (Before Jay.)
- because Jay's adoption is open. (After Jay.)
- because it's genetic.
- because we don't have a nurturing environment.
- because we aren't consistent enough.
- because we are too firm.
- because we were too open with him about his adoption.
- because we weren't open enough with him about his adoption.
- because white couples shouldn't have black children.
- because you shouldn't "mix" adopted and biological children in the same family.
- because he needs to learn self-discipline/self-control.
- because he needs a physical outlet.
- because he doesn't get enough attention.
- because we've let him be the center of attention.
- because we don't follow through.
- because we don't show enough grace.
- because we have let him get away with things.
- because we never let him get away with anything.
- because he needs medication.
- because he needs play therapy.
- because he didn't get enough skin-to-skin contact.
- because we aren't on the same page as parents.
- because we didn't do the family bed. 
- because I didn't wear him in a sling enough.
- because I wore him too much and he got spoiled.
- because I used "separation" tools like strollers, bouncy seats, etc.
- because I didn't nurse him.
- because I did nurse him, and that's unnatural.
- because I let him cry it out.
- because I answered his cries too readily.
- because I am too uptight about what he eats and drinks.
- because I am too loosey goosey and don't have him on a specialized diet. 
- because we don't have a strong enough marriage.
- because we don't pray enough.
- because we've neglected the spiritual element of child-rearing.
- because we over-spiritualize everything.
- because we haven't trained him biblically.
- because I am too distracted.
- because he is too distracted (attention deficit).
- because we have too many kids.
- because we over-analyze.
- because we haven't analyzed enough.
- because we are making the adoption piece too big of a deal/love is enough.
- because we aren't giving the adoption piece enough weight.
- because we followed BabyWise.
- because we didn't follow BabyWise.
- because we eat healthy/he doesn't get enough treats and affection.
- because not local/paleo/organic/free-range/no red dyes/gluten-free/annato-free/preservative-free/dairy-free enough.
- because we aren't conscientious parents.
- because we are helicopter parents.
- because he wasn't taught responsibility.
- because he was given too much responsibility.
- because it's spiritual.
- because it's psychological.
- because it's emotional.
- because it's medicinal.
- because it's chemical. 
- because it's developmental.
- because it's neurological.
- because it's physiological.
- because he should spend more time outside.
- because I don't homeschool.
- because he rode the bus to school.
- because I pulled him out of school.
- because he's not in private school.
- because we aren't in a good school district.
- because our school district is too diverse/other black children are a bad example.
- because our school district isn't diverse enough.
- because we don't have enough black friends.
- because our black friends aren't playing a large enough role.
- because he needs a mentor.
- because he doesn't know enough adoptees.
- because he is too aware of his adoption story.
- because he doesn't know his whole adoption story.
- because he has a learning disability.
- because he's too smart for his own good.
- because he's bored.
- because he has anxiety.
- because we should ignore his behavior.
- because we should put him in a group home.
- because we weren't prepared for adoption.
- because we didn't know what to look for.
- because the adoption industry is crooked.
- because immunizations.
- because food allergies.
- because microwaved plastic.
- because he'll outgrow it.
- because boys will be boys.
- because hormones.
- because high-energy.
- because wheat.
- because....
- because...
- because...

Because, no. Because, shut up. Because... none of this. Or because, all of this. Because, I don't know yet... and because, neither do you. 

But what I do know this... attachment is attachment, sensory is sensory, fetal alcohol is fetal alcohol, autism is autism,  attention deficit is attention deficit. They are not all caused or treated the same way, and many cannot be prevented. Many present co-morbidly (at the same time as another) and so it is hard to distinguish between the two, or three, or four things going on at once. What might look like a parenting problem, may in fact be a neuropsychological disorder. 

There is no fast solve, and I know that is uncomfortable. There is no Facebook timeline article that can shame a mother into solving disorders or dysfunctions like these. There is not a vitamin for autism or  insecure attachment, nor a something-free/something-rich diet that repairs brain-damage caused in-utero. Being shamed into a pro- or anti-something parenting position is not going to be what heals my child.

"If one is sick and desires healing, it is of prime importance that the true cause of the sickness be discovered. This is always the first step toward recovery. If the particular cause is not recognized, and attention is directed to subordinate causes, or to supposed but not real causes, healing is out of the question." 
- David H. Kim (The Lord's Prayer Devotional)

I believe that Harper will be healed. But it will not be quickly, it will not be unexplained or mysterious, and it certainly will not be because I went wheat-free. Perhaps I am wrong, and I do believe that God can and does perform miracles, and perhaps He will choose not to perform an instant miracle healing solely because of my lack of faith here... But I really just believe that God is going to heal him over time. The miracle will be that we all still love each other on the other side of the process. 


Handle with Care

It's amazing how there are seasons of life where it feels like everything is crashing down around you all at once.  I have to say, I am in one of those seasons.  I feel piled up with all my own heavy stuff, and the heavy of those around me.  I am choosing to be thankful... for my home, my marriage, my mind blowingly precious kids, and for the life that I have, which is so fragile and easy to lose.

As much as I want to spill all of my guts, I am just going to share a quick update about Jaylen's health because I know that so many of you are hounding me for an update praying for him so faithfully. :)

Our insurance will not cover the center where we were hoping to have him thoroughly evaluated.  If we choose to take him there, it would be self-pay and we would have to move into a refrigerator box.  Instead, we are opting to go to one specialist after another in order to come up with some diagnosis.  If/when special needs are established, Jaylen will qualify for medicaid, and then that center will be covered.

At this point, we have only gotten in to one specialist.  I don't know why it takes 1,000 years to get a baby's heart and hearing and vision checked... but, it does.  His first appointment yesterday was with a pediatric dermatologist to rule out a genetic condition that presents with cafe au lait spots and hearing loss.  I feel like I know in my bones that he had meningitis and that that is what caused his hearing loss, because it wasn't handled properly by the hospital, so it was not surprising when she said that we were not dealing with that genetic condition.  She did say that one of his birthmarks was harmless, and the other wasn't a birthmark at all (despite what I was told at the hospital) and would have to be removed for it's risk of melanoma.

So, while I was hoping to check one specialist off the list, I actually have to add a pediatric plastic surgeon to the list... and we are still no closer to clear answers.

I feel like I am beginning a very long road that I am not equipped to handle.  I also feel like I love Jaylen more than I could possibly express, and I am thankful that I get to be the one who tries to have what it takes to handle this.

God is teaching me some ridiculously hard life lessons right now, and the biggest one is that I have underestimated the fragility of my life.  It is very scary being aware of how breakable everything is.  It is terrifying to know that my heart, my marriage, my kids' health, my relationships, everything... is breakable.  It is scary, but it is also a good reminder that I have to work hard to be a good steward of what God has entrusted me with, and it helps me long for heaven... where things can no longer break.