November 2018

We went to the annual High School Football Banquet.  It was a really nice event at the high school commons and then moved to Tope Auditorium for the awards ceremony.  The coaches did a really nice job honoring the boys.  I hope Carter goes out next year.

We love our cats more each day.  Sometimes Matthew and I stand and watch them for a few minutes with big smiles on our faces and our hearts warm.

Over Thanksgiving break I wanted to get out of the house.  There was an ISU women's basketball game and Grandma was even available.  Can't go to CY Stephens it seems without getting a Cy-Clone or 2:)

One night a week this month was spent at Nevada Middle School gymnasium cheering on the 7th grade girls basketball team.  It has been a great experience!  Lanie has SCL staff for practice and  Miss Dodd helps make sure Lanie gets to practice and is ready for games.  She attends home games only and no practice on Wednesday because of Childserve therapy.  I think it started out a little rough, but as the season progressed, Lanie has built relationships with the girls and there is so much empathy and friendship on that team it is heart-warming.  It is EXACTLY how I always dreamed it would be.  We are SO blessed for the patience and kindness of  the coaches, parents, and teammates.  Lanie comes home VERY tired from practice and goes to bed around 8pm those nights:)  At games Lanie gets to play about the last 2 minutes of every quarter in the B game.  We are absolutely grateful for this opportunity!  I never thought they'd allow her even that amount of time!  There IS goodness in this world!

 I was able to go hiking for Tanya's birthday again this year.  It was a beautiful day and then we went out to eat at The Cafe for a great breakfast and more time together:)  I am SO thankful for these times with friends!
















After a pretty rough Thanksgiving meal at Mom and Dad's, Jeremy came over and we went out to relax.  We all got to enjoy some drinks and play some pool and catch up on each other's lives at the new bar in town; Lincoln Tap. . . and George's.  Matthew had been trying No-Shave November and had made it almost all month.  I think he shaved it ALL away the next day:)

How it went (in honor of National Down Syndrome Awareness Month)

A friend of mine recently wrote an entry on her blog entitled, "How I Wish It Would've Gone," and I was inspired to tell our story, especially after my husband read her blog and said, "You should tell our story.":)

I had an amazing pregnancy, very similar to my first with my son.  I was able to stay active and running til over half-way through the pregnancy.  I can remember my doctor asking us if we wanted to have any blood tests done to find out about things like Down Syndrome, like it was yesterday.  My husband and I immediately turned the offer down.  We were both young, healthy, had no family history that we knew of, AND no matter what, our baby that I was carrying was made from lots of love and we would do everything in our power to take care of her and show her how much she was loved no matter what possible hardships were in the way.

At our 39 week appointment, our Dr. (I'll call him Dr. L for privacy but my close friends will know who this is) decided I could be induced the very next morning because of some family emergencies coming up and knew I was beginning to get stressed about who would take care of our son.  I was also induced with our son by having my water broken and then the rest happened naturally.

We were at the hospital by 6am, they broke my water by 7 and my beautiful baby girl was in my arms a little after 9.  No complications, great labor, great teamwork, and a very happy mama and daddy.  The nurses whisked her away after she was born for what felt like about 30 minutes, but eventually she came back, no one said anything and there was no explanation of anything.   My parents came over with my 2 year old son about 11am,  Everyone got to hold her and we took family pictures and were relaxing the afternoon away.   I remember looking at her all bundled up with all that dark, long hair thinking how beautiful she was and never suspecting anything.

My good friends and other family members came later in the afternoon and at about 5pm my family practitioner came over from the clinic.  He came into the room and my good friends Lisa and Chuck were there.  He said,  "Kedra and Matt, I have something to tell you about your daughter.  Would you like your friends to leave the room?"  I couldn't possibly imagine anything wrong with what he was going to tell me, so I quickly replied, "No.  Go ahead.  It's fine."  Then he proceeded to tell me that the reason they took Lanie away so quickly after she was born was because they immediately suspected Down Syndrome and because so many babies with Down Syndrome have heart problems, they wanted to do heart tests right away.  I'm sure at this point my jaw dropped in disbelief.  My amazing friends quickly stood up, hugged me and said they'd wait outside the room.

At this point I looked down at Lanie and began to sob.  There was NO way this could possibly be happening to us.  We were young, healthy, no genetic history.  This has to be wrong!  I said to Dr. R, "Why did they suspect it?  What made them think this?"  He began to explain that right away the nurses and doctors saw the flatter nose, shorter fingers and toes, a slight palmar crease on her hand, shape of her eyes, and small ears.  I began to look at her for these features and slowly began to see what Dr. R was pointing out but still was in utter disbelief.  The doctors had to be wrong!

Dr. R told us that Lanie had a strong heart and no heart problems.  He began to talk a little about what Down Syndrome meant for a child, but did not go deeply into it at all right away.  He said they had drawn blood from her and sent the blood to go through a chromosome test to know for sure whether she had the genetic disorder.  It would take about a week to get the results back.  Dr. R stayed around a little while longer, his calm demeanor helped Matthew and I.  He said he'd be back the next day and left for the night.

I later learned from Dr. L, my OB-GYN, that he was going to deliver the news to us about Lanie but Dr. R had told him no.  That our family were his patients and it was his job.  I'll always remember him feeling that ownership to being the bearer of the news about our baby.  He felt like because of our relationship and time being his patients, it was his job to tell us and he wanted to make sure it was done in the most gentle of ways.

The next morning Dr. L, who had delivered Lanie, came in to check on me.  He made it very clear that his job was to take care of me and that included my mental health.  I'm sure I was a mess; red face, dark circles under my eyes from lack of sleep and crying, and the way I wouldn't let Lanie out of my sight for even a minute, even through the night.  He asked if I needed anything to fight off the anxiety or depression, something to help me sleep, and I told him no, I did not want anything in my breast milk that was going to Lanie.  Dr. L's words will forever resonate with in me, he said something like, "She is a beautiful baby girl.  She needs loved, she needs fed, she will grow up and have friends and learn.  It will be hard and take work, but you have no idea the love that this little one will fulfill your lives with."  I tried to believe what he was saying but deep inside just kept praying, even bargaining with God, to let Lanie NOT have Down Syndrome.

At one point, Matthew left the hospital for a couple hours to go home.  He went home and did research.  He was my rock.  When he got back he began to share with me some of the things he had learned, but not too much so he wouldn't overwhelm me.  He brought back a poem called "Welcome to Holland".  It was an important perspective that I needed at just that moment but wasn't able to fully believe until a few months later.  I fixated on the what-ifs.  What if she doesn't learn to read?  What if she has a bad heart valve and needs heart surgery?  What if she doesn't have friends?  What if she gets childhood leaukemia?  What if she can't talk?  What if she never gets a job?  What if she never graduates from highschool?  Matthew continued to remind me that there are what-ifs in ALL of our lives, not just Lanie's.

We left the hospital after 2 days.  I was still bargaining and praying to God and it wasn't until Wednesday, April 12, 2006 that we got the official news.  Here is my journal entry from that day...

Today marked the beginning of a whole new life for Matthew and I.  Who would have thought that 8 years ago when Matthew and I first started dating that we'd have child with Down Syndrome.  It's so hard to digest.  And wait.  Wait to see how severe, wait to see how healthy, what developmental delays, how high functioning.

Matthew is being amazing.  He's so willing to give up his job and stay at home with the kids.  I love my job but would stay at home in a heartbeat if that was what was best for our family.  I know emotionally we will make it, we're a strong family unit.  But financially may be difficult, or at least very tight.

Carter is such a mature big brother.  He loves to hold Lanie, give her kisses and touch her.  He has no idea how different life will be soon.  Different good, but very different.

So that's how it went.  It wasn't easy, in fact it hurt a lot.  But I am so thankful of the way my doctors handled it with love and support.  And 8 years later I can sit here and honestly say that Dr. L was right.  She's a beautiful baby girl, who needs loved, and fed, and goes to school to learn and has friends.  And she gives more love and fulfills our lives in more ways than we ever would have thought possible.  And we're taking it one day at a time because all our lives have what-ifs.

I forget how hard it is sometimes

At first as  I was sitting watching Lanie crawl across the playground by our house, I didn't think anything of it.  She'd get down from the bridge, pull herself up, crawl up the outside and then across over to the curved bar where she'd swing herself out and land on both her feet.  And she did it again and again and again.  Slowly though I realized, she is doing something AMAZING!  Something I'm not sure in her beginning years I ever would have thought she'd be able to do.  She is coordinated, strong, determined, and can climb, jump, and swing.  I'm not sure I ever realized what a beautiful maneuver this play was before.  I am so blessed to have this little one remind me to slow down and appreciate the things we can do with our bodies.  They are beautiful, flexible machines that we get to use.

And then I watched at swimming lessons.  We decided to do privates for the first time for her rather than group lessons because she has most of her skills and is a fish in the water, and now its time for the difficult front crawl with breathing to the side, back crawls, and tread water.  I hired a high school boy who was an acquaintance but he did not know Lanie.  I think its safe to say though, she has quickly won his heart.  He has done an amazing job with her, breaking down every stroke and celebrating her every little success. She loves going to swimming lessons.

As I watched at lessons though, I had one of those moments where I just knew, this is SO hard for her.  Remembering what order all the different steps go in and getting her body to do just what its supposed to do.   I know it will come, I just watch my brave little girl continue trying again and again and get to learn from her to never give up.  I'm the one who has to be patient and wait for her to turn to me like she did on the playground above, and say "Mommy!  I did it!"

Hard to bite my tongue and glad I did

I know this is not the beginning of my journey of becoming a mom of a child with Down Syndrome, but I think if I start small, I'll eventually get it all out.  My goal is to blog the amazing moments in my life that happen because of having a child with a difference, to treasure the times I got to slow down, or go a different path because of DS.  But I also want to reflect on the not so amazing hard times. The times that bring me to tears and break my heart.  The times that humble me to my knees.  And if my writing can help even in the slightest way another parent of a child with DS or to create empathy and caring toward families with DS it would be amazing.  I only hope I can remember so many moments from the last 8 years, because until I read the book Bloom by Kelly Hampton, I wasn't ready to do this.  Thank you Kelly for helping me to see how important it is to get down our stories in writing to share with others.  Your story forever changed me.

Last night was my son's baseball game in another town and of course there is a playground equipment set just far enough from the game that if Lanie goes to the playground my husband or I need to go too and can't see the baseball game.  We do this.  I do it, because its not fair to my daughter that she has Down Syndrome and therefore might wander, get lost, and just doesn't have that come-back-to-find-mom instinct.  Part of that instinct might be just her personality and independence don't get me wrong, but I'm sure part of it is because of her syndrome.  I also want her to be as social as possible.  I truly believe that relationships with others is what is going to make her happiest in life and want to foster this as much as possible.  So Lanie takes off toward the playground from the bleechers again and I follow behind leaving my husband to cheer on Carter.  I try to stay back far enough to give Lanie some space so she can even half-way feel like a regular 8-year-old when I hear words that cut like a knife.  I hear Lanie yelling, "Hey guys wait for me!" to the couple of girls running ahead of her, and then one turns around to look at Lanie and says, "Go find your Mommy."  Lanie stopped.  I could tell she was processing this and was not sure what to do.  But thank goodness she began running again and either didn't understand or didn't care.    Now I know that kids will be kids and this little girl could have said that to ANY other child, not just my baby girl with DS, but I tell ya'....it hurt.  I didn't say anything, and tried really hard to get the snarl off my face as I walked past the girls to get to my daughter who had found another place to play away from them.  I helped Lanie climb the bars and swing on the swing (both she can't do independently yet because of her low muscle tone) and eventually convinced her to come back to sit with her Daddy to watch her brother's game.

You'll never believe what happened later.  This same little girl, with some prompting from her mom, went with Lanie back to the playground.  She lifted Lanie onto the swing, she high-fived her as they ran, and had some genuine-kind word exchanges.  It was a very heart-felt thing to see.

I truly believe children are amazing creatures.  They don't see differences, they see kids.  They respond how they've seen adults respond and so as an adult it is our job to make sure we are positive and uplifting to each other so that we model kindness always.