The Clipboard Ladies

Sometimes our life makes me laugh.  Today was one of those days.  It didn't start off in laughter, but it ended in it.  Today Ashlyn was evaluated for a new year of therapy services.  First, let me say, that I am so, so thankful for the therapy she receives and we LOVE our therapists that she sees each week.  Sometimes, though, there are parts of the process that aren't as fun.  Today a team of people, that by lunch time we were referring to as "the clipboard ladies", came to evaluate Ashlyn to see what therapies she will need for the next year.  We were already told that because of her diagnosis of Down Syndrome, she is automatically eligible for services.  So, it was really just a formality of paperwork...not my favorite.

I had been dreading this in the days leading up to it.  It still feels weird to have people come into our home and just watch Ashlyn.  Plus, we don't know them and they don't know Ashlyn.  So, today, it got off to a rough start when they showed up twenty minutes late.  Then, came out the clipboards.  They watch Ashlyn, try to get her to do things, ask us all sorts of questions that stressed me out and then wrote things on their clipboards.  Ashlyn wasn't really feeling it...pretty fussy and I think seriously wondering who these people were.  I wasn't really feeling it either....feeling the need to give lengthy answers to each question asked, when I am pretty sure all the clipboard ladies wanted was a simple yes or no to mark down on their standardized sheet that I am sure would be promptly placed in a filing cabinet somewhere.  I wanted to take a picture of the three ladies all with their clipboards, writing who knows what, while Ashlyn is in the middle of all this like an animal being observed at the zoo. It was all so impersonal and I don't do well with that.  I took all of their questions way too personally....like they were implying that Ashlyn wasn't doing well.  The mama bear was coming out a little bit.  And, really, the clipboard ladies were just doing their job....I will be calmer next time (I can't really promise that, but I will certainly try.)

So, as soon as the clipboard ladies left, I was crying.  Luckily, Troy was here for the clipboard meeting.  And, my usually very calm husband was also a little bothered by the clipboard ladies.  His main issue was that they were 20 minutes late....he just didn't get it.  I was bothered that the clipboard ladies didn't have warm personalities.  This is so us.  He is ticked that they are late and thinks it is unprofessional and I am dwelling on the fact that if they are going to be late can't they just be kind when they get here?  This is why our life makes me laugh.  So, after a few minutes of us venting to each other about the clipboard meeting, I tell Troy we need to do something fun.  He suggests lunch at Chick Fil A....so that is what we did. Troy and Kyla went to pick us up lunch while Ashlyn finished her nap.  When they got back we all sat down to eat our lunch and Kyla says, "Mommy, I love it when our whole family is together."  Oh, that girl!  Troy and I immediately looked at each other, both of our hearts melting.  I knew we were both thinking the same thing.  We were thinking our three year old has the sweetest heart and that we also love when our whole family is together.  And we love it that we can laugh and move on.  Yeah, clipboard meetings are pretty brutal, but a family who can make it through them together is really awesome.

Enough of that nonsense...here are some recent pictures of two girls who are getting ready for the summer.

Nothing better than a girl, her baby and a stick!

Ashlyn in her new seat...enjoying some lunch.

Ashlyn in all of her cuteness...ready for the summer in her shorts!

One cool three year old...sporting her first pair of shorts of the season.

Kyla loving being outside.

Thoughts on Grieving

I realized in the days and weeks following Ashlyn's birth, that I had never truly grieved in my life before.  I had never had something happen that brought on true grieving.  There was no doubt I had felt deep sadness at times before, but not grieving.  And I don't want to be a big downer, but I knew it would happen someday.  It wasn't something I was living in fear of or that I thought about a lot, but I knew enough to know that if you live long enough, something will cause you to grieve.  And in the weeks following Ashlyn's diagnosis, I specifically remembering thinking to myself, "So, this is what grieving feels like."

I even remember in those moments thinking back to psychology classes in high school or college when you learned about the stages of grieving....and I was living them.  Shock, denial, anger, guilt and depression....in the first few months after Ashlyn was born I felt all of those things at some point.  I can remember in the very early days, crying pretty much consumed me.  I would wake up crying and go to bed crying.  In the mornings, I would say to Troy, "I think I need medicine.  I need something....I can't keep feeling this."  We were both grieving and he would say to me, "I know, it really hurts, but I think we have to feel it.  We have to let ourselves feel it."  In those early weeks, our parents were around a lot to help us out and one night my parents told Troy and I just to go to dinner and take some time to ourselves.  I probably wasn't fit to be in public yet at this point because I remember crying through most of the dinner.  After dinner we went to Barnes and Noble....I think we were trying just to feel normal for a little bit.  While we were there, I thought I would just try to escape and look at my usual magazines but I was being drawn to the section that had books about grieving....I don't know why, I just wanted to know what they said.  They talked a lot about the grieving process after someone you love dies, which I expected.  What I was surprised to see was that each one of them had chapters about the grieving process after having a child born with a disability.  It was like this confirmation that, yes, my current life situation was in books about grieving. It was true...this was grieving.  And it hurt really bad. 

The first three months were so very hard.  It seemed like total darkness.  I felt a loss of hope.  I felt the death of the child I thought I was going to be having, the future I thought we would have.  I would still try to pray, but it would mostly come out, "God, I don't think I can do it."  And, in the very bottom of my heart, somewhere underneath all of the sadness, I knew He heard me.  I knew He was there, even when I couldn't pray, when it was hard to find the faith.  And, I knew people were praying on my behalf and I am so thankful.

As the months passed, the pain began to lift little by little.  The very deep, dark days of the beginning were starting to get easier.  I don't know exactly how long I would say "the grieving process" lasted, but I do know that my husband was right, we had to feel it.  As I look back on it, I really believe that God is the author of healthy grieving.  And, the coolest thing is that for as extremely painful as it was, God didn't leave me there. He didn't leave me in that place. He helped me through it....we made it through it together.  He helped Troy through it.  He helped us through it as a couple.  And, as I sit here today, I know we made it through that process only because of His mercy.  And because life is life, there very well could be a time of grieving again. It is nothing I obsess about it.  I know the night doesn't last forever.  Joy is promised in the morning. 

Over this past year, I read an incredible book by Beth Moore called, "So Long Insecurity."  This book spoke volumes to me during this time because I was dealing with much insecurity over Ashlyn and the sense of loss I was feeling.  In this book, there is a prayer that she writes for the reader to pray.  When I first read the words, I felt like my heart could explode from the magnitude of how much I wanted to make it my prayer.  I want to share parts of the prayer she wrote:

Lord, come and treat my heart and soul where they have been shattered by loss.  You know the pain.  You know how my feelings frighten me and how the enemy of my soul would have me believe that I will never be okay.  Make a liar out of him, Lord.  Do not let him win.  Do not let loss win.  Be my gain, Lord.  Flood my life with purpose and compassion.  Be my strength in weakness.

Please do not let me confuse healing with betrayal.  Grant me the gift of healthy grief that does not fight the pain or process of healing.  Don't stop until You've made a miracle of me.  

Lord, help me to learn how to hang on tight to You when my life is rocked by dramatic change.  Empower me to trust You and not to panic or fight for control.  Help me to stop confusing a change in my circumstances with a change in my security status.  You are my security, O God.  You are the one sure thing.  When everything around me shakes, You are unshakable.  Nothing has the propensity to reveal false gods in me like a sudden change in my circumstances.  Help me to see them and surrender them instantaneously.  Use change to provoke what needs changing in me, Lord, and to increase my appreciation for the only One who is the same yesterday, today, and forever. 

I can say that the grieving process is over, however, there are still moments of grief and sadness.  Moments where it feels dark.  To this day, I find myself praying, "Do not let loss win.  Be my gain, Lord."  Or that my life would "flood with purpose and compassion" because of Ashlyn.  And, I fully expect that these sorts of grieving moments will continue to come from time to time because life isn't perfect and having a child with Down Syndrome can be challenging.  There are things that trigger those feelings in me.  But, what I am realizing now is these moments cause me to go instantly to Jesus and I hope they always do.  These moments of grief cause me to stay so very close to Him, because I know if He can get me through complete darkness, He can get me through anything.  So, if that is what can come from grieving, I really do consider it a gift.  I consider it a gift to know that the same God that got me through the darkest moments I have had to this point, that allowed a time of healthy grieving for me, is the same God that will get me through any dark moments I may face in the future and He will do the very same for you.

Sweet Little Sleepers

One of my favorite things to do is to peek in on my girls while they are sleeping.  I just love to watch them.  It is getting harder to do with Kyla because she is a light sleeper and if she sees you in there, it is over....she will want to be up.  Kyla is 3 and she has a rest time everyday.  Most days she still sleeps for awhile in the afternoon, sometimes she doesn't.  I have laughed so much over this past week because I have found Kyla in different places in her room on different days when I was checking on her to see if was awake or not.  That is why I love looking in on them.  All day long I see everything they are doing, but when I put them in their beds and shut the door and walk away, I can't always be sure. It is like they have their own little space and time for a part of the day and I get so curious to see what they are doing.  For instance, I know during Kyla's rest time she starts off looking at books because she often has books around her when I go get her.  And, I am learning that Ashlyn loves to scoot into the corner of her crib and sleep because that is where I find her when I check on her right before I get into bed at night.  Here are some pictures of my sleeping beauties. 

Ashlyn right after being laid down for the night.  She must have been tired this night, because she was right to sleep.

I love this one....Ashlyn's little fingers coming out under the crib bumper.

This is how I found Kyla one day during her nap time.  Decided to take her blanket and sleep on the floor.  And, yes, I realize she is 3 and I need to take her pacifier away!  She just uses it for sleeping time.

This time she stayed in bed.

And, this time she decided to sleep in her pink chair.  Cracks me up!  And, she is really into sleeping with her pants off these days...whatever makes a girl comfortable!

And, here are the two sisters in Kyla's bed first thing in the morning.  Ashlyn and I had just walked into Kyla's room to get her and she said, "I want to cuddle with Ru Ru."  Ru Ru is one of our nicknames for Ashlyn Ruby.  Anyway, I am so thankful that I get to start my days with these two little girls!

What Would You Do?

So, last night I was finally sitting down after a very long day and as I was flipping through the TV channels I heard the words Down Syndrome and instantly stopped to see what they were talking about.  It was a show called "What Would You Do?" on ABC (I think).  I had never watched the show before but had seen advertisements for it so I kind of knew the premise.  If you haven't seen it, the idea of the show is that people are put into situations where they see someone being mistreated or see something bad happening and there are hidden cameras taping them to see their reactions.  The scenarios are always staged and the people involved in them are actors but the bystanders who come across the situation are just everyday people like you and me, who don't know they are being taped. 

Well, right when I caught it last night they were doing a piece on someone with Down Syndrome being mistreated and taping it to see what people would do.  The exact scenario involved a young man with Down Syndrome, probably in his late teens or early twenties who was a bagger at a grocery store and they had actors as the ones insulting him and treating him badly.  The everyday people who didn't know they were being taped were the ones coming through the grocery line.  The actors who were supposed to be treating this young man in a mean way were saying things like, "Oh, I didn't know I was going to end up in the retarded line," or "Come on, can't you go any faster?" or "I didn't know they gave people like you jobs."  They would keep saying these things over and over to this person with Down Syndrome.  My blood pressure was going up, I felt myself getting tense and so very angry.  It was like watching my daughter being mistreated and it was all I could do not to go through the TV and start yelling at the people myself. 

There were all sorts of reactions from the bystanders seeing this happen.  Some people just quietly paid for their groceries and quickly left.  You could tell it was bothering some people, but they didn't say anything about it.  Some people would quietly say things to the actor who was mistreating the young man, but they left it at that.  Then there were some people who just laid into them and I LOVED it!  I was cheering for them, clapping, and talking out loud to the TV.  It was like they were standing up for my daughter.

One woman upon hearing this, stopped what she was doing and said to the actor something like, "Excuse me, you have no right to be talking to him that way.  You should be ashamed of yourself.  The only person in this line who has a problem is you!"  That lady got a big cheer from me!  Then a man, probably around 30, approached the actor and said something along the same lines and was trying to find a manager to ask the man to leave.  I cheered for that guy too!  And, it turned out he had a sister with Down Syndrome.  Another cheer for that!  Then, my favorite lady came.  She was up in the actor's face, with her finger in his face, letting him know how wrong he was.  And she said, "How would you feel if that was your son or daughter?"  That got a big cheer from me!  Because for me, that was my daughter.  And, I was cheering for a woman who decided to stand up for her.  As the segment was going on, the interviewer doing the show pulled one of the women off to the side who had confronted the actor to talk to her and she realized she was being taped.  She said, "I don't normally get that angry, but I saw injustice and when I see something unjust happening, I don't really care what people think of me."  Biggest cheer of the night for that one!

It was surreal to watch it.  It was surreal because as I was watching I knew I had a little girl upstairs in her room peacefully sleeping who had no idea she has entered a world where at times she would be treated differently.  A world where TV shows do segments on people like her.  Also, as I was watching it I was thinking about how if I ever see someone mistreating her or anyone else with special needs, it would be so ugly.  I was yelling just watching the show, I can't imagine it in real life.  There would be a scene...there would be yelling and when it was all said and done, I would probably be the one asked to leave the grocery store.  Because as a mom, we are all mama bears...there is something inside of us, that if one of our children is mistreated, you better watch out.  But, I am not sure if there is anything scarier than a special needs mama bear.  She will take you down. 

I was also thinking of Kyla as I was watching it.  I am sure she will go through a time as she starts to get older and realizes her sister is different that she may be embarrassed by it.  Growing up is hard and kids can be mean.  There are times when we all just want to blend in.  But, my hope and prayer is that as we raise Kyla and point her to Jesus, she will see that having a cookie cutter life that looks just like everybody else is overrated and of no value.  The things that are the most unique about us are the things that God can most use.  I believe that because of Ashlyn, Kyla will, like the lady in the show, have no tolerance for injustice.  And, as much as I see Kyla protecting Ashlyn already, I am pretty sure there is a big sister bear just roaring inside of her.  And, for the record, I was watching this show with Troy, and judging by his reactions, special needs papa bears are nothing to mess with either.

When the show was done, Troy and I both looked at each other with tears in our eyes and shaky voices.  I think it was a mixture of feeling like we just saw our daughter being mistreated and Holy anger.  Troy said to me that it made him think of Micah 6:8 - "And what does the Lord require of you? To act justly and to love mercy and to walk humbly with your God." If you are reading this, I hope that if you ever see someone with special needs being mistreated that you would live out Micah 6:8. Act justly.  Ask yourself how you would feel if that was your son or daughter, because that is someone's son or daughter.  And they are loved by God more than we can even imagine.  And, God is watching to see who will fight for His dear children.  Be a special needs mama bear on their behalf. 

8 years

On this day, 8 years ago, I walked down the aisle of the church I grew up in and Troy was waiting for me at the end of it.  We said "I do" and we made lots of promises to each other.  There are many things I remember about that day....I remember being so happy, joyful to be in a big, white dress, and being so excited to be surrounded by our family and friends.  Another thing I remember is that I didn't have any doubts.  Not one. I knew this was the man God had for me.  Here is a picture of us youngsters on that really special day.

I knew that as we stood there that day and made promises to each other that we didn't know what the future held.  We knew we wanted to have kids, but we didn't know yet that their names were Kyla and Ashlyn.  We knew that Troy had a calling on his life to be a pastor, but we didn't know yet that would include wonderful places like Indianapolis First Church of the Nazarene and Lafayette First Church of the Nazarene.  We knew it meant forever, no matter what.  But we didn't know yet of all that entailed.  Of all the joys, the deep friendships and homes full of memories.  We didn't know that seven years into it we would be holding each other as we cried and receiving information we never dreamed of.  But, even in those darkest moments, I still had no doubts.  Not one.  I knew this was the man God had for me and that it was forever, no matter what.  And, as I sit here today, 8 years into it, shedding tears as I think about the deep, deep love I have for this man, I know we still don't know what the future holds.  We don't know all the memories yet to be made, the destinations yet to be explored and all the highs and lows.  But, I know there is absolutely no one else I would want to be taking this journey with.  I love Troy.  He is so kind, such a good father and provider, and so passionate about his work.  He makes me laugh everyday and is so handsome I can hardly stand it.  And the best part is we are building a family together and we have two little girls we couldn't love more.

I love thinking back to our wedding day.  I love all the memories between that day and today. I love that this morning at breakfast I asked Kyla if she wanted to see pictures of the day that mommy and daddy got married and she excitedly said yes.  This was the first time she had looked at them.  We looked through them and she would say, "Oh, mommy, I love your white dress!" or "Look, Grandma and Grandpa are in that picture."  It was so fun to see her happiness about it.  She told us that she wanted to wear a white dress and we told her maybe someday she would and that we would pray for her husband.  We told her that someday if she gets married she needs to marry someone who loves Jesus and who loves her.  I am so thankful for that person in my life..who loves Jesus and loves me.  I am thankful for all that happened 8 years ago today.  I am thankful for promises made and promises kept.  I am so very thankful for my husband.

Patience....perspective

One thing we were told regarding Ashlyn is that kids with Down Syndrome do almost everything that other kids do, it just takes longer.  We see Ashlyn working so hard and are blessed to have wonderful therapists that come to our house to help her.  She currently receives physical therapy and occupational therapy each once a week and will soon probably start speech therapy.  We are so thankful for our therapists!  It is funny because when they first started coming it felt so strange to have them in our home helping our daughter with things that I never even thought of before.  But, like everything else, you begin to get used to your "new normal."  However, there are still times that it just gets to me.  Those times when I see a 9 or 10 month old crawling all over the place and Ashlyn doesn't crawl yet - my heart hurts.  When I see a 9 or 10 month old pick food right off their tray and put it in their mouth and Ashlyn still needs help with that - my heart hurts.  And, as a mom, I find myself walking that line between working with Ashlyn to help her but not let myself get so stressed about it that it turns to sadness that she can't do some things yet.  

It is a learning curve...it is a process.  It is refining.  It is an exercise in trust.  It is me saying to myself during the day, "Chill out, Shari".  It is me trying - really, really trying - to daily live out the Scripture that says, "Instead of worrying, pray."  

And, then there is the perspective part....I know that Ashlyn will do these things.  She will.  Doctors and therapists have told me time and time again....kids with Down Syndrome crawl, walk, feed themselves, etc...it just takes longer, but once they get it, they have it and they won't ever lose it.  

I do know this....I don't want to miss out on the joy of Ashlyn because I am caught up in worrying.  That would be a shame...so everyday I am asking God for help.  And everyday I know His mercies are new.  Thank goodness.  

The main things we are working on with Ashlyn right now are crawling, pulling up to stand, feeding herself and drinking from a straw.  We are also beginning to introduce some sign language...Kyla thinks it is really fun!  And, honestly, for as much as I can worry, I know that Ashlyn is doing so great.  And, when she looks at me, I swear she is saying, "Mommy, don't worry!  I am so happy and I know you guys love me so much.  And, that sister of mine is just too fun.  It is going to be okay, Mommy." Oh, we love this girl! 

Ashlyn is getting her first tooth and is also making more sounds when babbling.  One sound she makes a lot is "dada" and we are starting to see her say it a lot when she is with her Daddy.  She really, really loves her Daddy!  I don't think her face lights up more than when he walks in the room.  

I am so thankful for Ashlyn.  I am thankful for God's refining work in my life through her.  It is an understatement to say she is a gift.  More than she needs us, I really think we needed her.

Here is a picture of Ash on her belly, while we were working on some crawling.

Ashlyn with her love, dada

Here is Kyla, another girl who really loves her Daddy!

Did I Cause This?

 As I have said before, so much of this blog is like therapy for me.  Soon after Ashlyn was born I remember telling Troy that I really would like to have a blog just to get my thoughts and feelings out.  I knew, though, that I wasn't really ready to share it all...my emotions were way too raw.  A year later, after much healing has taken place and my mind is in a clearer place, it still feels really good to share some of the emotions and thoughts that were faced.  I am telling you, therapy.

It was probably a couple of hours after Ashlyn was born and after the doctor had told us he believed she had Down Syndrome and they would order a chromosome test, that I first thought in my mind, "I wonder if I did something to cause this?"  It was the most frightening thought and it took me awhile to even say it out loud for fear that someone would tell me that, yes, I did.  How would I ever live with myself?  I really did not know much at all about Down Syndrome, so I really didn't know.  I started to wonder lot of things to myself....wondering if maybe I didn't take the right kind of prenatal vitamins, or if I skipped days of prenatal vitamins, or if I should have taken more folic acid, or if the stress of moving at the beginning of my pregnancy was too much.  Here is a picture of me with Ashlyn just hours after she was born....this is not a flattering picture, but go easy on me, I had just given birth and been told some very difficult information.  Anyway, I can remember this time and I know one of the main thoughts in my head was, "If it is true, that she has this, I wonder if it is my fault?"  Agony.

It was probably later that night or later the next day when I first told Troy what I was thinking.  He tried to assure me, but I knew in my heart, neither of us really knew what was going on.  How would either of us know?  We had to wait a few days to get the chromosome results as I mentioned in an earlier post.  It was in that moment when the neonatologist confirmed to us that Ashlyn did have Down Syndrome, that I asked for the first time.  We had been asking different questions and she was giving us information....and there was lots of crying.  Finally, as it was nearing the end, I had to ask.  I don't know how she understood me through the tears, but I just asked her, "Was it something I did?  Did I cause this?"  She immediately got up, threw her arms around me, and tearfully told me, "No!  This is not your fault.  You can't cause Down Syndrome.  Don't believe this was your fault." 

Even as we were released from the hospital and began our life at home with Ashlyn, I could not shake the fear.  I would lay awake in bed at night and just worry about it.  I would think of everything....it was getting to the point of tormenting.  As I started to read more information about Down Syndrome, I would read exactly what the doctor had told me in the hospital...there is no cause for Down Syndrome.  It is no fault of the parents.  So, I started to believe it in my head, but it just wasn't reaching my heart yet.

We were at the Down Syndrome Clinic at Riley for Ashlyn's 6 month check-up and I still hadn't reached peace on it yet.  I figured, this was the time to ask again.  These were the doctors who specialize in Down Syndrome...they do research on it...they will know.  So, again, at the end of the appointment, through tears, I asked, "Was this something I did?  Did I cause this?"  And, again, this doctor put her arms around me as I cried and said, "Absolutely not.  You can't cause Down Syndrome, you can't prevent it.  This has absolutely nothing to do with anything you did."  She said something else that really helped me.  She said, "There are some things in life that we just cannot control and having a child with Down Syndrome is one of those things."  After that appointment, it started to reach my heart.

I think it was her statement about control that got to me the most.  That was it....control.  I think in some ways if someone would have said, "Yes, this is what caused it," at least there would have been an answer...some way to make sense of it. Something I could have controlled. But for just a random occurrence at the moment of conception...how could that be?

In the months after Ashlyn's birth, I realized this was the first time that something had happened in my life that I absolutely could not control (something of this magnitude, at least.)  I couldn't control that Ashlyn was born with an extra chromosome and I couldn't control the fact that there was nothing we could do about it.  There is no surgery, medicine or amount of time that will remove Down Syndrome...it is forever.  Talk about a loss of control.

In this past year of processing all of this, I have come to see that the bottom line of it all is that in medical terms Ashlyn being born with Down Syndrome is a random defect, but that to God, Ashlyn's Creator, this was His divine design for her.  He was not surprised.....His plan was unfolding.  So, it wasn't random, it was God ordained. I don't know why, I just know that God knows, and so it is okay.  And, for me, that is freedom. Believe me, coming to this conclusion and finding this peace, was a long and painful road.  I asked a lot of questions and had a lot of doubts.....things I have never doubted before. I have always heard that God is big enough for our questions and it is true. He let me ask, even be angry, and lovingly led me to a place of peace. Loss of control can open your eyes to a lot of things. 

Here are some lyrics from a song by Sara Groves (who I love) that speaks to this perfectly:
"Remember surrender, remember the rest. Remember that weight lifting off of your chest and realizing that it's not up to you and it never was."

 

Down Syndrome Clinic - Riley Children's Hospital

We live in Lafayette, Indiana, which is about 45 minutes northwest of downtown Indianapolis.  Before we moved to Lafayette we lived in Indianapolis for three years.  Since being in the Indy area something I have always heard about was Riley Children's Hospital.  I would hear about it on the news or hear people talk about it.  I never really thought I would go there or that one of my children would be there.  I have no idea why I thought that....probably because I thought I had an idea of how things would go....I now see how naive that was of me.  One of the biggest things I have learned since Ashlyn being born is that I really am not in control and that is really okay.

Today Riley Children's Hospital is a part of our lives and my child does go there and I am SO thankful.  It is a wonderful hospital.  Soon after Ashlyn was born our doctors here in Lafayette referred us to Riley because they have a Down Syndrome clinic there with pediatricians who specialize in children with Down Syndrome. I remember how very nervous I was the first time we went there when Ashlyn was just a couple of months old.  I remember walking through the doors with Troy and Ashlyn and remembering in my heart how I never thought I would be there.  I remember being so apprehensive about what I would see....not everything at a children's hospital is pretty and I would probably see things that made me sad....and most of all I would see other kids who had Down Syndrome.  That first time after we checked in and began to walk the halls of the hospital, I did begin to see those things....I saw kids in wheelchairs and kids walking in braces.  I saw a child with a bad burn all over his face.  I knew that there were kids on a floor of that hospital fighting cancer or facing life or death surgeries.  The first time we went there I remember thinking, "I bet Jesus walks the halls of this place."  I could just sense that in that place, Jesus was near, close to all of the people there whether they knew it or not.  So, I began to feel peace.  We turned down the hall where the Down Syndrome area is and we saw it....kids with Down Syndrome sitting with their parents.  And, again there were feelings of peace...feelings of, yes, our girl has Down Syndrome and so do these kids and their parents have walked the same road we have...and I began to feel kind of at home in a place I never thought I would be.

This past Monday we took Ashlyn for her one year check-up and again had a wonderful experience.  We saw the Dr. for a few minutes and then a nurse practitioner.  What I love about going to Riley is that the doctors there don't see Down Syndrome, they just see Ashlyn.  They celebrate her. They take the time to ask us about how her first birthday went because they know it is an emotional time. They listen to all of my worries and they say, "Don't worry. She is going to get it."  On Monday, they told us that Ashlyn is growing very well and they hear her making great verbal sounds.  They said her hearing is great and her thyroid levels are normal.  My main concerns were her getting off the bottle and onto a sippy cup and that she isn't crawling yet....both things that they confidently assured me....don't worry, she is going to get it!  As we were finishing up the nurse practitioner who examined her said, "She is beautiful and she is going to be just fine."

It is so funny that a place I was initially afraid to go to because I thought it would never be a part of my life, is now somewhere I feel better after having spent time there.  Continuing to be so grateful for God's faithfulness in all of these things.  Here is a picture of "our beautiful girl who is going to be just fine" while she was waiting for the doctor.

Happy Mother's Day

Last year on Mother's Day, Ashlyn had been home from the NICU for just two days and my heart was breaking, my mind was completely confused and my eyes were swollen from crying.  My own mom was here and I remember her holding me in my kitchen as I sobbed and told her, "This isn't how I am supposed to feel on Mother's Day.  I don't think I will ever feel happy on this day."  She hugged me and said she knew that I would feel happy....it would come.  Of course, she was right and today was proof of that. 

This morning when I woke up on Mother's Day the first thing I did was go into Ashlyn's room and get her out of her crib.  I gave her a bottle and she smiled at me and babbled through the whole thing...great way to start the day.  My husband pampered me today in so many ways.  As you may have picked up by now, he is a pastor, and part of what that means is that Sunday is a work day for him.  Also, that means he leaves on Sunday mornings very early (like, middle of the night early.)  So, usually I get the girls ready and we try our very best to make it to church by 9:30 all clean and in one piece....today he came home after already being at church and helped get the girls ready so I could get ready more peacefully.  We had a wonderful morning at church and then came home and Troy grilled out steaks for us.  We put the girls down for naps and took a little nap ourselves.  Once we all woke up, we spent some time together outside.  Troy also surprised me by telling me that he is sending me on a weekend away in the Fall to Kansas City to be with my sister....perfect gift!  I can't wait!  It was a great day. 

I am thankful today for my mom (and that she was here to hug me last year when I needed it so badly), for my mother in law and for the fact that I get the joy of being a mommy myself.  Best job in the world.  I am thankful again for tears being redeemed today and for waking up this morning feeling so thankful to be the mom to my two beautiful girls.  Here are a few pictures of us from today.  Happy Mother's Day!

Meet Kyla

So far, the posts on this blog have focused on Ashlyn mainly because the gift of Ashlyn in our lives is the first thing that ever made me think of writing a blog.  I wanted to share my thoughts and feelings on having a child with Down Syndrome...maybe a form of therapy more than anything!  However, there is much, much more to our family than just Down Syndrome...that is part of it (a very wonderful part, we are learning), but there is lots more.  So, along the way, I am sure this blog will be a little bit of everything....things I am learning, things that make me laugh, things I am into, life being married to a pastor, and probably a lot about our family.  So, I want to introduce you to an incredible member of our family...my firstborn, Kyla Elise.

I absolutely love this girl!  We have fun from the time she wakes up until she goes to bed.  She makes me laugh so much everyday.  One thing you would quickly discover about Kyla if you met her is that she is a very girly girl.  She loves clothes and accessories.  Almost everyday she asks me if she can wear leggings...they are one of her favorites lately...only problem is we only have so many leggings clean at a time, so she will settle for something less desirable to her like jeans.  If you stopped by our house on any given day, Kyla would probably have lots of jewelry on and a tu-tu...and if you are lucky, she would be wearing her very sassy, hot pink Barbie high heels.  She embraces all that being a girl has to offer....and that makes this very girly mama very happy!

Another thing about Kyla that makes spending each day with her such a blast is her very vivid and ongoing imagination!  At any given time during the day we often have guests with us...they range from Tinkerbell to Cinderella to Snow White.  We may be just driving in the car and she will say to me, "Mama, my friends are here."  And, I will say, "Great!  Who is here?"  And these days the most likely choice will be one of the Disney princesses.  We love to have them along and are very fortunate that they are willing to make the trip to Lafayette, Indiana so often!  Kyla also adores her babies...after she turned 3 they didn't get quite as much attention as they used to, but they are still very cared for and talked to....and sometimes if they aren't quite behaving to Kyla's standards, they have even been sent to time out.  Needless to say, I laugh a lot during the day.  Did I mention that I love this girl?

One of my greatest joys recently has been watching Kyla as a big sister.  Oh, does that girl love and protect her little sister!  She never really went through a rough adjustment to having a sibling added to our home...believe me, she has her moments, but overall, it is like she was made to be a big sister!  She is so excited to see Ashlyn every morning and she talks to her all day long.  She brings her toys, tickles her and hugs her.  Since Kyla has become a big sister, I have seen a very compassionate and maternal part of her emerge.  If Ashlyn cries for very long, it almost does Kyla in.  It melts my heart when I hear her saying while rubbing Ashlyn's back," Don't worry, Ash, mama is coming."  If we are driving in the car and Ashlyn is crying, she will say, "Don't worry, Ash, we are almost there."  Kyla is not aware at all that her sister has Down Syndrome or is different in any way...it is this sweet innocent time where Kyla sees no differences.....I wish it could stay this way forever, but I know it can't.  I know a day will come where we will need to explain all of this to her and probably a day when some kid at her school will ask her why her sister is different (I am already annoyed with that kid, whoever it is).  However, even now I see Kyla encouraging and loving Ashlyn in ways that other kids probably don't with their siblings.  Kyla doesn't know that other babies don't have therapists come to their house, but because Kyla sees that and always hears people encouraging Ashlyn, she does the same.  I often hear, "You can do it, Ash" or "Mama, did you see that, Ashlyn did it!"  I have no doubt that God made Kyla to be Ashlyn's big sister...it is for Kyla's good and for Ashlyn's...all part of God's perfect plan.  I believe that God will use the blessing of having Ashlyn for a little sister to shape Kyla and use her for Kingdom purposes. 

We are so blessed to have Kyla as our daughter.  She loves to laugh, have fun and read books.  One of my absolute favorite things about Kyla, is that her and I literally have a running conversation all day long.  We just talk, talk and talk some more....and then when Daddy gets home, he hears all of our thoughts and events of the day....and as much as I know sometimes he is amazed that two girls could have so many thoughts, I know he loves it.  He tells me, Kyla and Ashlyn all the time how much he loves his girls... we love him too, so much!  Tonight at supper, which was on a  Friday (Troy's day off), Troy asked Kyla what her favorite part of the day was and she said, "Having you home all day."  Oh, we love this girl!

Here is a picture of Kyla at 6 months old

Here she is today, as our sweet 3 year old.

Ashlyn's First Birthday

So, I know this probably sounds weird, but one of the things I have been dreading since Ashlyn was born was her first birthday. I can remember back to the days and weeks after she was first born when I was still in a place of constant grieving and many of my thoughts would turn to how different our life would be having a daughter with Down Syndrome. My thoughts would range from big things to little things. Every time a new one would come to me it would be like another jab of sadness or a new piece of reality setting in. Early on thoughts of her birthdays started coming to me. I thought it would be nearly impossible to ever be happy when April 30 appeared on the calendar....I thought that day would forever be filled with sadness and memories of our world being completely rocked.

I think part of the birthday thing was remembering back to Kyla's birthdays. Her first birthday was so happy. So many of our friends and family gathered with us and Kyla was doing so many things and the future just seemed so bright. She was starting to say words and cruising around furniture. She was always doing something new and not one piece of it was learned from the aid of therapists. Everything just came so easy and so it was easy to celebrate. Plus, the day she was born was...happy. Again, easy to celebrate. So, as the day of Ashlyn's birthday started getting closer, I started feeling the emotions again. And, in so many ways, I think it was healthy for me to. I needed to feel it and I let myself. I let myself relive it and cry. I recognized that, yes, it would be different, but also that we had come so very far in a year.

A few weeks before Ashlyn's first birthday, God was so faithful to let me hear a sermon at church that I really needed to hear. It was a piece of healing for me. I really love the pastor at my church, actually I am in love with him. Don't worry, it's all good....he is my husband. And, I am very blessed that he is also my pastor. It was right after Easter and Troy was doing a sermon series on how the resurrection of Jesus changes our day to day life. The particular sermon was about joy coming from mourning. I was taking notes as he was preaching and one of the things I wrote was, "When the resurrected Jesus enters the moments of pain in our lives, they are changed from death to life." After I wrote that I put a note for myself beside it that said, "Ashlyn's birthday can be pure joy because Jesus has entered that moment." One more note I wrote that was part of the sermon was this, "Every tear we cry can be redeemed."

So, I bought and wrapped presents, put up balloons and decorated a cake....we got ready to celebrate. Our girl was turning one! I was still feeling fear as the day approached and wondering how I would feel. I was worried I would focus on the things she wasn't yet doing that other one year olds were. Our family came...the ones who saw us in deep pain a year prior and walked with us and loved us so deeply(my sister, Kara, couldn't be at the party, but I know she was feeling it all with us).

The day was so wonderful...we celebrated. Ashlyn had lots of help from her big sister opening her presents. She smiled and clapped. The highlight for me was when it was time for the cake. I had been so worried that when I put cake in front of Ashlyn she wouldn't know what to do (we are still working on her picking up food with her fingers...and she is getting better and better at it). Anyway, I put a plate in front of her with cake and no less than 5 seconds later her hand was smashed in it and she put it in her mouth! She just kept going and my heart felt joy. In that moment, I felt tears being redeemed. A day I had thought would always be marked with sadness, was full of happiness. As I am getting farther on this journey, one thing I am learning is that we have a lifetime ahead of us with Ashlyn to see tears being redeemed by Jesus himself. We will always remember the deep sadness, pain and sense of loss that filled the beginning of her life and along the way we will get to see those tears being redeemed. And, I know there will be more tears along the way...there are challenges and it still hurts sometimes, but I have the hope and knowledge that nothing is beyond redemption.

So, I included some pictures of the birthday girl and moments from her big day. Enjoy!