Friday, February 27, 2015

the diagnosis

Understanding Bugaboo so that he can get the best support possible has been a journey. Many of you who have read my blog for a long time (and/or are part of our lives in real life) have watched us try to find the right therapies, go to various doctors and specialists, and then a year and a half ago get a diagnosis of mild cerebral palsy and "wait and see" on some other things.

The waiting and seeing was hard.

We continued with therapies. We tried preschool. We stuck with therapists that were working well (and that weren't taken from us after age three), and we found new therapists when others did not work well.  Some circumstances this summer pushed us forward even more in trying to unlock the mystery of our youngest child.  The crying spells and meltdowns increased.  Bug gained more words and the ability to speak more, but the communication did not improve and the echolalia became more noticeable, more frequent. The gap between how his peers interacted with each other and how our son did not interact with them grew even wider. It is a hard thing to observe this on a playground or in a Sunday school room.

So with the recommendation of our pediatrician, we recently took Bugaboo in for an evaluation. We knew what they were going to tell us. I taught elementary school. The Hubs works in the psychology field. Everything was there in the DSM (IV and V) for us to check off.

But it's one thing to know the label your child is going to be given, and it is another thing to sit at a table and have an expert  with all the paperwork tell you that label. It is not a surprise, but it is still a shock. 

In a matter of moments many of your hopes are dashed, your prayers are not answered the way you wanted them to be, and your dreams for your child's future become fuzzy.


I drove home with the boys in the minivan. Unfortunately it was Bubby's day to pick the radio station, so I didn't even have uplifting or memorable music on the ride home. I don't know why this is important to the story, but I felt a bit frustrated by it yesterday. The rest of the day had to continue. There was dinner to make, laundry to avoid, and bedtime stories to read.

A wise and trusted friend who has had a similar journey reminded me that Bugaboo is still the same Bugaboo and "God is still the same God, no matter what terminology we use to describe him." And it was comforting and true to hear that.  Today was the same as the days before our new diagnosis. We got up, went to therapy, did some things at home, met friends to eat lunch and to play, and so on.

I have fears though, tonight. I fear that the label Bug has been given will make some people view him differently or treat him differently- even more differently than they might already view/treat him. But I have no control over what people think or do. And so I share with those of you who have been on this long journey with us that the journey is really only beginning.  Bugaboo has been given an autism diagnosis. There is a lot for our family still to process, questions we have, fears we are facing, but we have been given the grace to get through our questions and fears today.

He's still the same Bugaboo he was the yesterday, the same Bug he was last week and last month. And I love him so incredibly much. What a blessed woman am I that I get to be his mama - not because he has CP or autism - but because he is Bugaboo, my son.

Wednesday, February 25, 2015

brotherhood

While en route home from BSF today, Bubby said to me, "When I grow up I want Bug to live with me because otherwise I will miss him."

I managed to hold in all my various types of tears.

I worry a lot about both of my boys. I worry about Bubby having to share a room with a little brother who has unexplained meltdowns. I worry about his conversations being interrupted because of having to take care of something for Bugaboo. I worry about all the time he sits in waiting rooms and doctors' offices and therapy appointments for his little brother. I worry about how a five and a half year old handles the circumstances of our lives together.

And today, without intending to, he reminded me that it's going to be okay. Their friendship and their brotherhood doesn't look like the ones their peers have, but my boys aren't missing out. Bubby's words reassured me that they are probably the best brothers in the world.


one of my favorite old snapshots of the boys

photo from tonight's Night of the Decades at Awana -
(90's decade)

Monday, February 23, 2015

the snowy days

I am not a fan of snow.

I moved to southwest Arizona right after college for a few reasons, one of which was not having to live in snow ever again.  Two years later, I was back in Missouri. And (almost ten years after that) we are still here.

Our winter this year hadn't been very snowy at all.  Then in the last week a few inches fell, the temperatures got really cold, and we got a little bit of freezing rain/ice.  Due to the weather we only had one "normal" day last week. The rest of the week our appointments were cancelled/rescheduled. And as much as I love routine and was so ready to be back into our routine this week, the break was nice.

Four days a week we have at least one place (sometimes two) for Bug to be for therapies. A couple of other days a week we have other activities for one or both of the boys. The down time was lovely. I think I stayed in pajamas or sweatpants almost every day.


Bubby loves the snow. He played for quite a while in the backyard with Scout while I watched from the kitchen table.  Bugaboo is usually ready to come in and read his books after a few minutes of walking slowly (or just standing still) in the snow.


We enjoyed the snow this last week or so. And now, in my opinion, it can leave. I'm ready for spring and the allergies the pollen brings. :)

Thursday, February 12, 2015

meltdowns, Cubbies, and Jesus

I started writing a couple of (long) paragraphs about what life is like right now. I put a positive spin on it because overall things are good. They really are.

But I'm tired this week. And I can't put a positive spin on that.

Bug has had some set-backs with meltdowns lately - they come in waves, I think a friend used that term recently. Last night was really hard for him.

He melted down at Cubbies - one of his favorite things to do all week. I thought about writing out all of what transpired with him but honestly the details are not that important. It was long and it was hard and as he was crying (and flailing and yelling so incredibly loud) I couldn't completely keep my own tears in as I sat in the hallway. It was one of his longest meltdowns in public and one of his most intense. It was heartbreaking.

He eventually calmed down, and we were able to leave early thanks to the amazing people I work with.

But the most beautiful thing happened as I was getting our belongings packed up. One of his classmates came over and gave him a hug and said good-bye, and then another classmate did the same thing.

And I saw Jesus in the compassion and understanding of two little boys wearing blue and red Cubbie vests.

Wednesday, January 28, 2015

I Could Never...

In my Sunday school class (of just ladies this quarter), our facilitator has been having us discuss many things. A recent topic of conversation has been our words. Words we can say to be helpful, phrases we should avoid, words (and actions) that show that we genuinely care.


A phrase has been in mind since Sunday afternoon - probably because the Lord is convicting me of all of the times I have said it (or at least thought it) - "I could never.../I would never..." This is slightly different than the phrase I talked about in class of "I don't know how you do it!" Whereas that "I don't know how you do it" phrase usually comes in a form a (strange/frustrating) compliment, the "I could never..." is often coming from a place of judgment. If not a judgment, at the very least least it is from a place of not trying to understand someone's background/story/decision. 


I remember I was a teenager the first time that statement really stood out to me, was when I was indirectly on the receiving end (though the person who said it didn't know she was being hurtful, and I still think very highly of this person). She said, "I could never let my kids date someone from a divorced home." This broke my heart since I was a kid from a divorced home.


Other phrases that have been hard to hear (directly or indirectly);


  • I could never raise a child with special needs.
  • I would never live on the northside of town.
  • I could never go to a Pentecostal church. Or a Baptist church. Or a Reformed church.Or a church that doesn't have kids' church. Or a church that...
  • I would never homeschool.


But I haven't only been on the receiving end. I am going to be completely transparent here. I hesitated to share this, but wearing a mask about my struggles doesn't help anyone.  I have at different times of my life said hurtful "I could never/ I would never" statements, 


  • "I could never be a stay at home mom" (oh how things change) 
  • And on the opposite end, "I could never work outside of the home." Yes, in my short lifetime, I have made both of those statements. I'm very sorry for saying both of those things. 
  • I would never send my kids to public school. (Well, I ended up doing that for a few months this year. Never say never.)
  • I would never go to college in Springfield, MO (Ha!)
  • I would never wear _________.
  • I would never let my kids _________.

When we say the, "I could never.." it is most often out of fear/pride/envy or even what we try to claim as "concern," With each of these statements, whether said aloud, written or even just harbored in our heart for too long,  we end up alienating the people we are called to love and encourage. These statements often stop us from caring for one another and instead start us competing with one another. I don't know if that makes sense, but in my "year of quiet" I think God started working on this issue in my heart (and my tongue - or more like my written words, in my case). After spending a few days thinking about our class on Sunday, I know He isn't finished working on me in this area.

Tuesday, January 27, 2015

What I Read - Over the Holidays And In January

It is amazing how much more reading I can get done when I don't get on the computer as often.  December it was easier to read because I was not on Facebook until after Christmas and because I was in lazy-holiday-vacation mode. I did get a few books finished in January as well. A few books didn't make the list because I did not finish them for various reasons.  But here is what I read - in no particular order:


  • Crazy-Busy by Kevin DeYoung - Our pastor had a few copies of this to give away. It was a great read. Quick, practical, and a lot of things that I have started applying to my life. I think it will also be helpful to revisit once my kids are a bit older, to keep our time-management priorities straight.
  • The Bean Tree by Barbara Kingsolver - Really loved the characters in this novel. I don't know how to say more about what I liked about this book without giving away the plot.
  • The Girl Next Door by Ruth Rendell - A crime novel, but not really in the traditional way - I thought this book would be better than what it was. I needed to know how everything worked out in the end, but if it wasn't for that, I probably wouldn't have finished it.
  • Every Bitter Thing Is Sweet by Sara Haggerty - a memoir on infertility - and although I have two children, I felt much of what she wrote I could relate to. The second half of the book flowed better, in my opinion, so I'm glad I hung on to finish the book.
  • Sun Shine Down by Gillian Marchenko - a memoir of a mom after the birth of her child, who is born with Down Syndrome. I wanted to like this book more than I did. I related to some of the mom's emotions/struggles, but not as much as I had hoped when I picked up the book. 
  • The Glass Castle by Jeanette Wells - Two or three people recommended this memoir to me. What an amazing story! I found myself crying, cheering, cringing, and so much more throughout this book. It also made me want to move back to the southwest. I highly recommend this book.
  • The Geography of Memory by Jeanne Murray Walker - A woman remembering her journey with her mother before, during and after her mother's struggle with Alzheimer's. Powerful story with not just dealing with the disease but also family relationship dynamics, memories of growing up in a conservative Baptist home, wrestling with (and changing) faith, and probably other things I am failing to mention. 
  • Something Other Than God by Jennifer Fulwieler - I am pretty sure I have read this woman's blog a few times, but I didn't remember it when I picked up this book from the library.  A memoir of an atheist becoming Catholic. I love a good memoir of pretty much any religious sort. For some reason love learning why people change/convert/leave their faith. I love the stories behind theologies.
  • The Hardest Peace by Kara Tippetts - One of my Sunday school teachers pointed many of us to Kara's blog - a mother of four dying of cancer. It is a heart-wrenching story, but Kara's realness as she hangs onto her faith in one of the worst situations out there is challenging, encouraging, and convicting. 
  • Eight-Twenty-Eight by Ian and Larissa Murphy - I watched a video clip Ian and Larissa did about a year ago, and cried my way through watching. I knew I would read their book when it was published. Ian suffered a traumatic brain injury in a car accident while the two were seriously dating. This book chronicles their journey through that time and beyond. Although my situation is not the same, I found so much to take from, as a "special needs mom" from Ian and Larissa's story, as Larissa has stayed by Ian's side throughout this incredibly difficult path they are on. If you read this book, have a box of tissue nearby. 

Friday, January 23, 2015

on our tenth anniversary

“No long-term marriage is made easily, and there have been times when I've been so angry or so hurt that I thought my love would never recover. And then, in the midst of near despair, something has happened beneath the surface. A bright little flashing fish of hope has flicked silver fins and the water is bright and suddenly I am returned to a state of love again — till next time. I've learned that there will always be a next time, and that I will submerge in darkness and misery, but that I won't stay submerged. And each time something has been learned under the waters; something has been gained; and a new kind of love has grown. The best I can ask for is that this love, which has been built on countless failures, will continue to grow. I can say no more than that this is mystery, and gift, and that somehow or other, through grace, our failures can be redeemed and blessed.” ~ Madeline L'Engle



Dear M,

We celebrate our tenth anniversary tomorrow. So when I read this Madeline L'Engle quote tonight, I felt it speak to my heart. It is so completely true. How did she so accurately and beautifully describe what marriage is?

I cannot believe we have been married ten years.

I look around our little house, the one in which we have spent 95% of our married life, the one we thought we would be in for just four or five years, and it is easy in the chaos and stress of life to get distracted and dissatisfied.  I didn't know what I was signing up for when I said, "Hey, why don't we just elope?" I didn't know that marriage would be so hard. I didn't understand the work it would entail to grow together.

I didn't know that there would be days and weeks and seasons of being so angry or disappointed or confused - not necessarily just in marriage but in what life has handed us in general.  I didn't know that I was such a selfish person until it was a struggle for me to not always get my own way. I didn't know we would handle loss differently - loss of a pregnancy, loss of a job, loss of faith in people, loss of hopes and dreams and expectations. And I didn't know these differences would often frustrate me.

But I also didn't know, ten years ago, how much living with a person, day after day, in a covenant relationship, would grow me. I didn't know that there would be times I would want to walk out the door, and I didn't know the relief I would feel that you would always stay. I didn't realize that growth would be painful but beautiful, and that I would not trade any of the pain because I am a better person for going through it with you.

I didn't know that Jerry Maguire's "You complete me," was a bunch of crap - and that trying to be completed by another person, even you my husband, would only leave me disillusioned.  Instead I would say that I have learned that, "You complete me" should actually be "You sharpen me," or "You challenge me," or "You encourage me," or "You love me."

You have loved me at some of my worst moments, in times when I did not even love myself. You are steady and methodical.  You are patient and wise. You are hard-working and you make me laugh.  You never complain that I would rather look over educational theories and curricula than learn to be a better cook. You  listen to my endless theological rants (you know which one). You still hold my hand in the car.  

You have taken the phone from my hands and stood up for me at the moment I most needed you to do such a thing.  You have been given my trust, even though in some ways it took awhile for me,  and you have been faithful with that trust. 

I love you. Thank you for being my husband of ten years and counting on more...

Love,
Amanda







(picture by Sarah Bottarel)