Pretending

I realized something today as I was taking Bo to his ENT appointment:

I am most comfortable with my boys with special needs when I am walking the halls of our local children's hospital.  

I smile at other parents and they smile back in a comfortable camaraderie. Staff members wave back at the boys like they are genuinely glad they are part of the same world. There are no looks of pity, only empathy or even better, delight at how cute they are.

When I see people glance in the stroller, I don't worry whether or not Bo has his tongue out. When Eon loudly verbalizes a string of syllables with no actual words attached, I don't instantly shush him. When we're on the elevator and someone's attempt to engage Bo falls flat, I don't rush to make excuses for him. 

I don't feel the need to normalize them when we're in the safety of that setting.

And it makes me sad that I feel the need to normalize them at all. 

But I do. 

I've learned, as a special needs mom, that people are more accepting of my kids if I treat them with absolute delight even if they are not being particularly delightful. I've learned to pretend like I'm having a ball even when I'm ready to pull out my hair.

And so I scoop up Eon and tickle him when he bolts down the aisle of the grocery store for the third time today, even though my back is killing me and I'll pay for it later. I kiss Bo on the cheek so that he'll smile instead of stare suspiciously at someone who is trying to talk to him. 

When Eon shakes off my hand and races ahead to the elevator, I smile and call out, "Press the down button, please," while desperately hoping he actually stops at the elevator this time. When Bo gnaws on the arm of the chair he's sitting in, I calmly tap him on the head and say, "No, no, Bud. Here, let's read this book," as I pull him onto my lap with a big smile (because there is no way he's going to stop unless I remove him from the temptation.) 

I make a crack about women drivers when the wheel sticks on the stroller my son has to ride in because, at three and a half years old, he's still not a proficient walker. I smile when I retrieve the four hundredth object he's thrown today, and comment, "Wow! You'll be a great ball player, someday!"

Most of the time I do it, in part, so strangers will have a positive experience with a child with special needs. Maybe our interaction will help them be more accepting of someone else in the future.

In part, I do it so people can get a glimpse of what I see when I look at these boys...children of worth and incalculable value with unique personalities, full of fun and mischief.  

But, I also do it because I am filled with foolish pride and cannot stand the looks of pity and even scorn I receive when I behave as if I am as harried as I feel. I've learned that when you get frustrated with your typical kids in public, people don't pay any attention. But, if you get frustrated with your kids with special needs, people give you a knowing look that seems to say, "You poor dear. Your life must be so hard." I loathe that look because, while my life is hard in that moment, that moment is just a tiny part of the remarkably satisfying whole. 

So I pretend.

And I normalize them to others by my response to them.

But at the children's hospital, there is no need to do this. Almost everyone there knows my children are precious in spite of their special needs, because their children are precious too, in spite of the medical issues or disabilities they have. The staff don't mind my children's quirks or my frustration with them. They've seen it all and choose to come to work everyday to see it all again because they love kids...of all abilities.

I am home there. Different is normal in those halls. I am among my people and it is refreshing.

And that is a little sad to me.

Grace in the Needs

"Some days/weeks it's about the special, and sometimes it's about the needs."

That's what my friend, Cara, responded on a facebook post of mine this week. I think it's genius. 

Generally, our lives are about the special, but this week, it seemed to be all needs. We had four therapy appointments, two specialist appointments, a preschool screening, and a medical procedure under general anesthesia that resulted in a new and unwelcome diagnosis (subglottic stenosis).

I'm tired.

Even without all that other stuff, I'm tired. Bogdan is a terrible sleeper. Which is funny, because the one thing they told me about his habits was that he "is a very good sleeper." HA! Joke's on us.

Let me tell you, sleep is very important to me. It almost ranks up there with coffee. I am one of those people who must have eight hours every night and nine on weekends to be a functioning, pleasant member of society. I am not sure how I survived the newborn stage of our other seven kids except that I was younger then. 

I am not coping well with being awakened multiple times a night, every night by our new three-year-old, no matter how cute he is (and he is so cute). 

Before we adopted him, I tried to prepare myself for every possible outcome. I was prepared to feel as if I were caring for a stranger, prepared for RAD and acting out, prepared for  health issues and parasites. For whatever reason, (probably because I had a piece of paper telling me it wouldn't be an issue) I was NOT prepared for unending sleepless nights three months after recovering from jet lag. 

The other night, I was crying in frustration, knowing I had to get up in just two hours to go to work and I had been up with him, off and on, for hours already. I took pillows and blankets downstairs to sleep on the couch. 

I felt God ask me, "Will you lay down your expectations and give this to me?"

I realized that most of my frustration was because everything we've tried has failed to make it better and because his sleeping is so random and unpredictable. Most nights, he sleeps for about four hours total, but sometimes, he sleeps a full eight, albeit interrupted. Most days, he seems fine, but sometimes, he can hardly keep his eyes open. We've tried naps and no naps, later and earlier bedtimes, melatonin, etc.

I've mentioned before that I like to be in control. I cannot control this kid's sleep habits and it was driving me crazy. I like predictable and my nights are anything but.

If I give up my expectation to sleep through the night and lay down my need to fix this, my stress will decrease. If I am simply grateful for the sleep I do get, I'll have peace. So I did that in the wee hours of Thursday morning from the comfort of the couch. Last night, he slept through. I don't know if there is a correlation, but it was a gift and I am grateful.    

This morning, I experienced that grace again. Bogdan had a bronchoscope to determine the cause of his stridor and wheezing. I was reading my Bible when they returned him to me. I closed it having just read: 

"But one thing I do: Forgetting what is behind and straining toward what is ahead..." Philippians 3:13    

The doctor told me that he has significant scar tissue causing serious narrowing of his airway. "I don't want to scare you, but it's bad," were his exact words. He informed me that it's not currently life threatening but will be if he gets croup or an upper respiratory infection and referred us to the ENT.

As soon as he left the room, I was overcome with guilt. Bo had been home just a day or two when he developed croup and had a weird breathing pattern. We debated about taking him to the emergency room, but talked ourselves out of it in part because we'd dealt with croup before with other kids and thought we could handle it at home. According to our oximeter, his O2 sats were low, too, but I rationalized that it's a cheap machine and a pediatrician once scoffed at me for using it with Eon. What if we'd lost him because of our foolish pride?! My mood began to deteriorate as fear and regret washed over me. 

Suddenly, the Word came flooding back. 

"Forgetting what is behind and straining toward what is ahead..."

It's in the past. We didn't lose him. We move forward from here. What grace that I read those words immediately before I needed them!

This week was stressful. It was all about the needs. I did not cope well. I was short with my kids, irritable with my husband, crabby with my co-workers, craving fast food, stuffing with cookies. 

But God is good and He was here. And that, and a full nights sleep are worth writing about.

                          

To The Anonymous Woman Who Terminated For Down Syndrome

Dear Anonymous,

Can I speak to you for a moment? Can we talk about the elephant that's in the room? It's going to make you angry, but please, bear with me.

You are not going to convince me that you made the right decision. I am not going to embrace it as acceptable or practical or personal to your circumstances. The life a child was willfully and consciously sacrificed. I cannot and will not think that is okay.

When you tell me that it has not affected you, I do not believe you. I cannot believe that anyone can take the life of another and walk away unscathed. Sin leaves a mark.

As a fellow sinner, I know this. I know about scars left on my heart by my own hand. I know what it feels like to be left utterly bereft by my own choices. I know how it is to be wholly separated from God and completely alone in a pit of my own digging. 

I know the heart grows harder over time and that it gets easier to justify my actions and to believe the lie that what I've done is not so bad, that others have done it too, that the reasons I had were good. 

I know how angry it makes me to be confronted with truth and to have my sin exposed. 

I made a different decision when confronted with a Down syndrome pregnancy. I chose to decline further testing and continue my pregnancy. I chose life.

But time and time again, life has not been my choice. The Bible says that the cost of sin is death. I, too, have willfully and consciously and repeatedly chosen death. 

Sometimes out of fear. Lack of trust that God loves me and works all things for my good is a constant struggle of mine. Sometimes, it seems easier to ignore that still small voice and act in what I think is my own best interest. 

Sometimes out of pride. The Bible says that pride leads to a fall. Boy, have I fallen. How often I fall. I insist on my way and my rights. I think of myself more highly than I ought.

And sometimes I don't know why. As the ancient teacher, Paul, wrote, "When I want to do good, I don't. And when I try not to do wrong, I do it anyway." (Romans 7:19 NLT) Maybe it's just because I feel like it. The lusts of the flesh, as the Bible calls them, are comforting to me. They palliate my discontent, my boredom, or my inadequacy. 

But I also know my heart longs to be free from all the ugliness and darkness. It wants to be free from all my justification and excuses. It wants to be understood, to feel whole, to be known, and to experience love.  

I want to be free. 

And that can only come from one place, from one person. The Creator of the universe, the One who planned our days before there was even one of them, wants to know us. He longs to comfort us, to set us free, to make us whole. 

Someone took our place and paid the price of our sin for us. Jesus died so that we don't have to. When we run to Him, He sees us and embraces us and we are free. We can lay our sin at His feet and walk away new, transformed.

It's there...forgiveness. It's ours for the accepting and redemption is the result.

I'm so sorry. I have judged you. I struggle with it, still. I mistakenly and arrogantly decided that your sin was worse than mine. 

But it's not. 

All of us have sinned. None of us measures up to the perfection that is God. 

Least of all me. I'm sorry that I pretended that I did.



(In order to maintain my sanity, I will not be publishing anonymous comments to this post.)

No Right to Judge

Recently, I read this and it resonated with me. The author and I have similar backgrounds and I, too, once thought my Republican voting record proved me to be pro-life. For me, it was all about the baby and in my mind's eye, the woman deserved any post-abortive fall out she may experience. 

I've become more moderate about a lot of things in my old age. For one, I look at abortion as a tragedy for both mother and baby. I can empathize with moms who feel trapped by impossible choices. 

I used to virtually stalk a message board on Baby Center that was entitled, "Termination for Medical Reasons." I knew that the number one "medical reason" to terminate a pregnancy is Down syndrome. I was hoping to reach out to an undecided woman and share my story, give her up to date information, and show her that life with Down syndrome is a life worth living. While I did contact many women, very few responded, and, to my knowledge, none chose life. 

I remember reading post after post about the experience and fall out. At first, I was horrified. Because of the lateness of the pregnancies, many of them chose to have labor induced at twenty to twenty-three weeks of pregnancy and to deliver their babies so they could hold them and say goodbye. 

They called their babies "angels" and they grieved deeply.

It took me a very long time to respond with compassion in my heart. All I could think of were those innocent little lives taken at the will of the one who was supposed to love them most. And, I took it personally. If they thought their babies didn't deserve life, then it meant they thought mine didn't either. It stung. And made me angry.

But there is no denying the fact that those babies are at peace and their mothers are decidedly not. 

According to the posts I read, they struggled when they returned to work and someone asked them about the baby. They struggled with the secrecy and having to say they "lost the baby," out of fear of judgment if someone discovered the truth. They struggled with the noticeable pregnancies of strangers and with baby shower invitations and family outings. They struggled with depression and guilt and "what might have been" and loss. 

These women are hurting and that hurts me, too. It's a tragedy, all the way around. A loss is a loss...no matter the cause. It's still hard for me to admit that, but I know it's true.

I get to sit on this side and enjoy my boys. I get to melt into Eon's bear hugs and laugh at Bo's antics. I get to celebrate them and read them stories and kiss them good night. I get to tickle their toes and run their baths. I get to grow old with them. I am blessed.

I have no right to sit in judgment of those who believed the medical establishment when told, "it is for the best"; those who experienced the same fear I did, once upon a time; those who could not imagine the joy and satisfaction in the life I now lead; those who convinced themselves it was the best decision for their baby.

Those left simply with an ache and not a child.

They are victims and, while I know they so desperately wish to think themselves heroes, victims they remain, bound to a choice they made during an unbelievably vulnerable and terrifying time. While I mourn for their children, I mourn with them, too. 

A Letter to my Former Self

I've been thinking about where we were a year ago when we were in the process of adopting an unknown to us little boy. If I could write a letter to my then-self, this is what it would say:

Dear Tara,

I am so proud of you for taking this leap of faith. Given your propensity for expecting the worst in any situation and your desire to control every little thing, the step you're taking is monumental.

I know that you are terrified. You've long had a passion for orphans to find homes, but stepping out to home one yourself is a different story. 

You are looking at this from every angle, worrying about the money, about adding another into this madhouse we call a family, about your parenting skills, about whether you can love one born to another.

But fear has no place here.

You know you have been called. You know He who has called you is faithful. You know He has promised you everything you need for life and godliness.

"I will go before you and will level the mountains; I will break down gates of bronze and cut through bars of iron. I will give you hidden treasures, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name." Isaiah 45:2-3 (NIV)

He will send you encouragement all along the way. He will provide for every need. And people will pray, oh how they'll pray, and you will feel it. Be brave. Stay the course.

Just as fear has no place here, neither does pride.

People will tell you that you are amazing and the word "hero" will come up once or twice. You will be told that you must be special to consider something so extraordinary. You will want to believe them.

Don't. 

Because you work with old people who often have no filter, you will also be told that you are foolish to take on such a big burden and that no one needs this many kids. Some will look at you like you've grown a second head and you will feel the need to defend yourself, to tell them how much thought and prayer and research went into this decision.

Don't.

Just as you have no business believing people that say you are amazing, neither do you have any responsibility to convince others that you're right. Both the accolade and the denigration are a lie. You are neither wise nor foolish, but investing yourself in the opinions of others keeps you focused on yourself.

This is not about you.

The adoptive parents who've gone before you are telling you not to stress about the home study. Please believe them. Before you freak out and threaten your family into a mad cleaning frenzy, take a breath and realize it is not about the house, either. Promise. (Just distract the social worker with fresh baked cookies. He won't even go upstairs.)

There will come a time that you will have to leave your children behind. Your heart will try to jump out of your body in effort to stay behind with them and you will feel like you can't breathe from the fear of it. Please know this: You are doing those children a favor and you will bring them a gift. He is worth it...and they will think so, too. 

Be brave.

Your son is precious. He is funny and affectionate and sweet. He will fit into your heart like there has always been a place in it carved out just for him. Having him home will be everything you expected, except hard. What you are feeling and experiencing now and in the months to come is just a blip in light of eternity and even in light of the life you will have together.

Soon, you will have your boy and, in the normalcy of life thereafter, there will be moments of wonder where you will look at him and be amazed that he has only been yours for such a short time, so complete will his absorption be into your family.

God wants the best for him and for whatever reason He has decided that best includes you. 

Just trust Him. He's got this.

Love,
Me

P.S. Don't even bother taking your curling iron...your adapter will fail and you'll blow a fuse the first day. Also, a jar of Jif will be totally worth the room in your suitcase. 

Bloom - A Review

I was asked by TLC  to write a review for Kelle Hampton's book, Bloom. I was told to be honest and that they didn't object if my review was negative, which is the only reason I agreed. 

I had read a negative review of this book previously, here, so my expectations were pretty low. 

Not low enough, apparently. 

Kelle and I share something in common. We both received a

birth diagnosis of Down syndrome for a child. That alone should have fostered some kind of understanding. I expected to read her story with a kind of knowing empathy. 

I tried. I really did.

But, should you have to try to relate to the author of a book about "finding beauty in the unexpected?" Especially when you, yourself, have already done so?

I found her telling of her experience to be over the top and inauthentic. Her whole life seems to be one of extremes. The entire first half of the book is about her grief over having this, "normal, perfect, healthy baby" (according to her pediatrician.) Nella doesn't have any real health challenges and nursed like a champ, but Kelle "writhed in bed" with gut-wrenching grief, needing shifts of friends to hold her hand and bring her beer and make her laugh for FIVE days while she was allowed to room-in with her baby who was undergoing photo-therapy for jaundice.

I kept wanting to say, "Get over yourself, already!" (and may have actually done so on more than one occasion.)

I can't help but think that Kelle set herself up for some of that grief with her wild expectations that this birth, and the subsequent response of the people in her world, was going to be every bit as amazing and special as the birth of her first, complete with hand designed favors "ready to pass out the moment the room flooded with visitors." (emphasis mine.)

"....I had the anticipation of this utopian experience ahead of me."

Clearly, her first child, two-year-old at the time Lainey, was her whole world. That I understand as it was my experience with my first, as well. Unfortunately, the births of later children, while huge for the parents, are rarely as earth shattering as the first. 

I've no doubt that, even without Down syndrome, the birth of Nella would not have lived up to the utopian experience her mother anticipated. 

Indeed, little Nella is barely mentioned and certainly not the focus of Bloom. This book is all about Kelle.

One chapter in and I told my husband, "I don't know what I'm going to say in this review, but I'm pretty sure the words, 'narcissistic' and 'drivel' will be used."

Obviously, she holds a pretty high opinion of herself:

"But it was in this beautiful mess of my former self that true potential dwelled--potential to be molded and shaped by a grand defining moment. And when there is potential...there is greatness." (p. 148)

Other than the over the top, staged nature of her experience, I admit that it really bugged me that she never once even considers that she is not the only person on the planet who has faced a similar situation until the one hundred thirty-sixth page, and then only vaguely writes, "...it brought humility and the recognition that I am one of millions of human beings who experience pain and ultimately grow because of it." 

In fact, the only time she mentions the amazing Down syndrome community is negatively, when talking about spending time on the forums as "disturbing hours of torture like some sort of emotional cutting ritual," or as imparting some sort of wisdom to the rest of us through her blog or speaking engagements. 

The book is a strange mix of little nuggets of (mostly contrived) wisdom and crass language and anecdotes including a bizarre story of getting drunk and skinny dipping with the neighbors which seemed to serve no purpose in the retelling. It also has pictures...lots and lots of glossy pictures, most of which showcase Kelle, herself (thankfully, not skinny dipping.)

Kelle's disillusionment with the church rings loud in chapter two when she recounts the end of her parents' marriage. She claims the church thoroughly screwed her up and espouses some weak, feel good theology because of it and ends up patronizing people who still choose to be part of the church with a backhanded compliment:

I think there are people who find hope in Church - amazing people who love and give and work hard to bring good to the world - and perhaps don't understand that there is something bigger, something better, something that cannot be confined to four walls and a steeple or to a book or a sermon or a pastor. People seek comfort in rules and find security in establishments, but through every pain and joy in my life, I have drawn closer to the grander amazement that God is big and accessible and, like any parent who loves a child, he wants us to find joy and good in life. (p. 50, bolded mine)

Yeah, 'cause the rest of us are just hanging onto the crutch of unenlightenment. I've no doubt that people in the church failed her in some way. We, being human, don't always meet expectations and do sometimes screw up and fail people, but her generalization of "the Church" as a whole based on her singular experience is unfair and annoyed me. 

There was one thing that she shared in the second half to which I could finally relate. Her first experience in public (Target) with Nella in which she blurted to the clerk admiring the baby, "...we found out when she was born that she has Down syndrome." And her dad's response, "Kelle, why don't you just get her chromosome studies laminated on cards and pass them out to anyone who happens to glance our way," cracked me up. I remember blurting it to anyone and everyone, too. 

But, beyond that, her perception of her life is just too different from my reality.

I remember reading the book, Gifts, when Eon was still a baby. It is a collaborative book in which every chapter is a mother's story of her child with Down syndrome. Every single story resonated with me, no matter how different the experience from my own.

I really wanted to like this book. I really wanted to relate to the author, like I have with every other mother of a child with Down syndrome that I have encountered.

I just couldn't do it.

(While I wasn't paid for this review, I was given a copy of the book....which they probably now regret.)

Two Months Home

I am asked daily how Bogdan is doing and if he is settling into our family. He has been home two months.

I'm so happy to report that he is doing very well. We have made it through about half our medical to-do list and we have heard only good news. There are no palate issues; he is showing only minor hearing loss which is probably related to wax build-up; he is aspirating thin liquids but we already knew that and were thickening all fluids anyway; he is doing so much better with feeding; the surgery for his syndactyly should not be difficult; all of his labs came back normal... with the exception of one.

Shawn was at our pediatrician's office with another child when I asked him to request Bo's lab results. A few minutes later, I got a text from him. Here's the exchange:

Shawn: Got the results. Are you sitting down? 

Me: What?

Shawn: He has....................Down syndrome.

Me: OMG!!!

We think we're hilarious.

He just had an echo-cardiogram and will have a sleep study before the month is out. He will see the cardiologist early next month.

Beyond all that, he fits well in our family. He's quickly becoming one of the bunch. The other kids just love him and even Eon is sitting on him less and playing with him more.

I have mentioned to a few people that he seems almost cat-like in his affections. He will share affection only on his terms. Some days, I come home from work to smiles and snuggles. Some days, he ignores me when I greet him, busy with his cars, making the other days that much sweeter. 

His lack of communication is becoming an issue. He uses "dada" appropriately and has been heard saying "mama," as well. Beyond that, he pushes people away if he wants space, pushes food away if he doesn't care for it, pushes medicine away if it is coming too close, etc. 

See a theme? Pushing away is his primary form of communication. Sometimes, like right at this very moment, he cries. Usually, we have no clue why. Nor do we know how to comfort him. I'm not sure if he's grieving or just deciding he's hungry. We've introduced signing, but imitation is not his strong suit. (edited to add: Apparently, this time it was due to sleepiness. He slumped over on Shawn's lap soon after I wrote that.)

We have a long way to go.

He is stimming much less. He used to rock himself to sleep every night holding his stuffed cow. Most nights, he just holds his cow, lays over, and falls asleep. He only rolls his tongue or plays with his pinkie when he's nervous, so we almost never see that behavior at home, either, which is fantastic and shows us that he is feeling secure in his new home.

He does need space frequently. He will play and laugh and interact with us for awhile and then will go off to play cars by himself. We don't mind and we encourage the other kids to give him time to regroup. He needs that to adjust.

Bo loves to undress and has one hand almost permanently stuck in the back of his diaper. Sigh. Zippered pajamas were our solution while it was cold, but I see lots of onesies for his summer attire. Shawn informs me that he kept his clothes on all day today, however, so maybe we're making progress.

Our lives feel like chaos much of the time, very reminiscent of postpartum periods after the other kids joined our family. We're all looking for the new normal and sometimes we actually catch a glimpse of it now and then.

Baby steps.