spotlight on Brett

 Last day of 3rd grade!

 Stop growing!

 We bowl almost every week through the kids bowl free program.  Tuesday is $1.50 tacos!

This spring Brett expressed an interest in playing soccer.  I found a soccer clinic in the area and he had fun, but he wanted to play games. I was nervous about signing him up.  Most kids who play soccer have been playing since they were four. I was afraid he would not be able to process the game fast enough and it would be a frustrating experience for him.  I expressed our dilemma at our districts' special education advisory council meeting. Little did I know the coach of the TopSoccer team was sitting in the meeting!  I had never heard of TopSoccer (this is an example of a bigger problem that needs to be addressed).  TopSoccer is a soccer program specifically for youth with disabilities.  "Youth with disabilities" is a very broad stroke.  We didn't know if it would be a good fit for Brett.

We decided to give it a try.  We were a little late with the registration but, encouraged by the coach, we just showed up at the first game.  They put Brett in right away, and he didn't even know which direction to kick the ball.  (This is the point where I would typically feel the other parents' judgements weighing me down, but there was no judgement here - only support.)  Brett sorted it out and scored his first goal.  Sitting on the sidelines, masked by my sunglasses, I cried.  I cried because I was proud.  And I cried because Brett was in a place where he belonged. And I cried because this was that place.

TopSoccer has been a great new experience this summer and I suspect it is around to stay.  Brett is having a lot of fun!

 The best things in life are...large boxes.

Brett still loves basketball!

 Brett can fall asleep anywhere.

 We also love the kids skate free program. Aren't they cute?

Last week Brett woke me up in the middle of the night complaining of a stomach ache.  I have never been a very good nighttime parent.  In my half-awake state, I mumbled to try using the bathroom and went back to sleep.  The next morning, I was feeling pretty badly that I hadn't gotten up with him.  I asked him how he was feeling and told him I was sorry I didn't get up.  He said, "That's okay, God helped me."  Later, he told me he prayed and his stomach felt better.  At first, this made me feel worse!  But then I was reminded of Hebrews 13:5 - "I will never leave you nor forsake you."  How good to know that God is there for you even when Mom is too tired!

(not so) picture perfect

On a beautiful Sunday in October, I posted this picture on Facebook:

 

It was taken on the day we took our annual field trip to our favorite pumpkin patch. I love pumpkin patch day!  When we arrive, we always grab a wagon, rush past the barn filled to the brim with pumpkins-for-purchase, pause to feed the goats, and then wind the wagon through the trees until we arrive at the field of pumpkins. The hunt begins.  Brett wants the biggest one he can lift (our requirement); Lydia searches for one that is round and smooth and perfect for carving; Reggie dashes around, shifting and spotting pumpkins until he finds one that speaks to him.  It is never "pumpkin" orange and rarely round.  After everyone has picked out their pumpkins, we maneuver our more cumbersome wagon back to the barn. We find our way through a maze of hay bales to the old silo, which has been converted into a mini-cinema of-sorts.  The seats are hay bales and the movie is always the same: The Legend of Spookley the Square Pumpkin. Then we take our pumpkins to the pumpkin meter and pay.  The last thing we do is I have the kids pose on a wagon full of pumpkins, hoping for an adorable Facebook-worthy snapshot of fall family fun. I aim, point, and click about a dozen times, willing that in at least one, everyone will be looking and smiling...with mixed results.

I always try to take the kids on the first Friday in October. They have the day off from school for teacher's workshops, and there is hardly anyone at the pumpkin patch. But this year, because I had surgery, I was not up for the outing until later in October.  Still recovering, I needed Bryan's help to lift the pumpkins and pull the wagon, so we went on a beautiful, warm, sunny Sunday.  Along with every other family in the metro.

Everywhere I looked, I saw other families experiencing those same special moments I hope to have at the pumpkin patch every year. Kids finding that special pumpkin and turning to smile for doting parents with iphones in hand. Families posing together on hay bales or wagons and parents working their magic to get that perfect fall family fun snapshot. It will undoubtedly become their "cover photo" on Facebook for the next month. But, possibly even more treasured, on the mantle or in a memory book, to say, "Remember when we..." for years to come.

We did not get that photo.  

I want to be careful here, because I always want to respect the dignity of my children and protect them on such a public forum.  But, I also want to be authentic. More authentic than I am on Facebook, where I just post cute pictures that show the dazzle in life.  This blog is my telling of our story, complete with mishap and mess.  

When you look at the snapshot above, you see a toothless little girl smiling with her daddy at the pumpkin patch on a beautiful fall day.  When I look at this snapshot, I see pain. I see what's (who's) missing from the snapshot. When I look at this photo, I remember another heart-wrenching day of parenting a child with special needs. The struggle is literally taking place behind the tall grass in this picture.  I stepped away from the struggle for a couple minutes to capture the special moments of my other children...and to regroup.

 

Parenting my child with special needs feels like I'm swimming in an ocean.  The salty water around me is not what I hoped for, but it is still beautiful.  The tide is my experience of grief and loss for the hopes and dreams I have for my child.  It comes in waves of sadness or anger or bargaining or denial or acceptance.  It subsides, but always returns.  The moments of peaceful serenity are cherished (and posted on Facebook).  The storms damage anything in it's path, especially hope, and are chaotic and lonely.  But my love for my child challenges me to find beauty not only in the sunsets but also in the storms. To release my hopes and dreams and expectations, and exchange them for a journey less traveled but uniquely treasured.

jigsaw puzzle

I've been putting together a jigsaw puzzle.  It's one-of-a-kind.  The pieces are all different sizes. Some of the pieces have bright, beautiful colors.  Some of the pieces have sharp edges, while others are smooth and more subtle to identify.   I have no image to replicate.  As I fit each piece in it's place I feel a small victory and a sense of hope as the image becomes more clear.  On occasion my jigsaw puzzle gets bumped and pieces scatter.   There are times when I wonder if I have all the pieces, and sometimes it seems like I have pieces to other puzzles mixed all together.  I lose heart and worry that maybe my strategy is all off. So I consult people who know more about puzzles, who put together puzzles all the time.  But they have never put together my puzzle; they don't love my puzzle. Sometimes friends and family will see my puzzle and say, "Well, it's easy, just put that piece there!" or "Your puzzle looks normal, we should expect it to behave like all the others" or "The puzzle is broken, it's not your fault you can't put it together". But they don't know my puzzle the way I do. Kids see my puzzle and say, "You're different.  I don't want to play with you", or see an opportunity to capitalize on it's vulnerability. It is painful to see my puzzle get treated that way.

My jigsaw puzzle is seven years old and stands tall over all the other kids in his class.  He makes little gifts for important people in his life with construction paper and markers and tape.  If he could, he would eat mashed potatoes with gravy and drink orange pop for every meal. And when given a choice, he will always pick the blue one - of anything.  We became aware of his vision problems when he was sixteen months, his language and motor delays at two years, asthma at six, and a few other idiosyncrasies along the way.

Having a child with special needs can feel like a lonely place, but it shouldn't.  According to a 2007 report from the US Department of Health and Human Services, 32 percent of parents of domestic privately adopted children report the child to have "special health care needs".  About 10 percent of all children and 21 percent of domestic privately adopted children are reported to have "moderate or severe health problems".  According to the US Department of Education in 2010-2011, about 13 percent of all students qualified for special education services.

We are just seven years in and have much to learn.  But if I could have a conversation with myself just discovering I had a child with special needs, this would be my advice: (1) Get another opinion. The more information, the better. (2) Advocate, advocate, advocate for your child. You are your child's voice. (3) Allow yourself to grieve.  We all have hopes and dreams for our kids, and coming to terms with a child's special needs is experiencing a loss. (4) PRAY. A lot. (5) Repeat.

It's been a rough week with our jigsaw puzzle.  Yet, not for a minute would I want to trade our puzzle for one with ordinary pieces and a clear image.  I am daily awed that God would entrust us with such a treasure.

 

 

This entry was written for the MICAH Fund newsletter.  The MICAH Fund exists to glorify God by promoting the adoption of domestic African-American and biracial infants and children by providing financial grants for qualified adoptive families.