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.
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.)
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.
To the person who Googled, "I am afraid of Down syndrome," and landed on my blog, this post is for you. Even though I have found immeasurable joy and beauty in the anomaly that is Down syndrome, I do not fault you for your fear.
I understand it.
When Eon was born and we were told just minutes later that he most likely had Down syndrome, I was terrified. It was as if all the air had been sucked from the room and I could barely breathe, suffocating from the weight of it.
The fear did not instantly abate when I held my sweet baby for the first time and realized that he was just that, a baby, but it did recede a bit.
I spent a lot of time in those early months researching, blog hopping, and soaking up my new baby boy. I also spent a lot of time educating...myself and others. I needed people to see that Down syndrome wasn't scary. I needed them to understand that what they were really afraid of was the unknown. I needed for them to see that the face of Down syndrome is so much different than it was even twenty-five years ago and many of their preconceived notions were just inaccurate.
I wrote posts here and here communicating similar ideas.
But after parenting a child with Down syndrome for awhile, it takes a back seat to "real life." The fear has disappeared, the "specialness" has worn off, and it has just become a part of life, rather than the whole.
I do understand your fear. I hope that I never forget it, because its memory makes our life with Down syndrome so much sweeter. The life that my mind conjured up in the middle of that fear looks nothing like the life that we live today.
I now have two sons with Down syndrome. But I also have six typical kids. Sometimes the special needs of the younger boys are the focus of the family, especially if there is a health concern or new therapies needed. But, usually, it's someone else's turn. The older boys (both "typical) need to learn to get along with the neighbor kids or stop fighting amongst themselves. Or the two-year-old needs to stop using a pacifier. Or one of the teens is on a health food kick and using up the grocery budget on specialty foods and must be made to see reason.
Our lives are not about Down syndrome.
We are not limited by it, either. I cannot think of one thing we have decided we couldn't do because our boys have Down syndrome. It is just not that big of a factor in our lives. If anything, because of the club-like atmosphere of the Down syndrome community, it has opened up more possibilities, more opportunities for us to spend time together, meet new people, or try something different.
The initial response of almost all the parents I know, when faced with the diagnosis of Down syndrome, was fear, just like you. The majority of those parents now assert that, if given the choice, they would not take away Down syndrome. They would choose their child exactly as they are.
As for us, Down syndrome has only added to our lives. It has not subtracted. I have found the fear to be unfounded.
Be brave.
I wrote about our different kind of Easter celebration on my other blog, Remnant of Grace. I only link it here because it contains some pictures of Bo, I think in part 2.
