Let's do this better. Speaking at the hospital.

September 8th.  I've had this date starred on the calendar for over six months. *Speaking at the hospital*

I had the unique opportunity to go back to the hospital where I delivered Jack (and Luke).  I got a chance to give a family's perspective on what it's like to get a diagnosis of Down syndrome at birth.  This came about during a conversation I was having with a contact in the maternity ward.  Thank you friend, for listening and answering my countless questions.  You are helping change families' stories and I am grateful for the work you put in to make this happen.

As I drove to the hospital I could feel the butterflies in my stomach.  I even rehearsed what I was going to say and then the tears came.  They streamed down my face as I recalled how the delivery went.  How I still imagine Chris sitting in the room (alone) as the nurse practitioner came in and handed Jack to Chris and said, "Are you aware of Trisomy 21?"  Then proceeded to share her suspicions and before departing the room, "Well, just enjoy your baby."

The tears do not come because Jack has Down syndrome.  The tears come because of how the diagnosis was delivered and how the story of our lives with Jack starts.  Over the past 17 months, I have met many, many, many families that also have been told the unexpected news in such a heartbreaking way.

I shared our experience to a room filled with nurses.  Introducing myself and our family, showing pictures of the precious moments we have had.  I acknowledged that I know they are not the ones that deliver the diagnosis, but they have a huge impact on the first interactions that families have after they hear the unexpected news.  Including our own birth story, I shared examples of how the diagnosis was delivered to give them background of what families are experiencing.  Here is one of the birth stories I shared...

"After the final push and my daughter entered the world, she was carried to the warmer and the nurse practitioner yelled, "This baby has Down syndrome, get her to the NICU immediately." 

That is how she found out the news.  She later explained to me that they were treated like they had the plague for the remainder of their stay in the hospital.

 Unfortunately, this is all too common among families and we find we bond over the experience.  Can you imagine this being your birth story?  What emotional state would you be in?  How much of this experience affects the ability to accept their child and this new journey?

I continued sharing that even though the diagnosis was delivered to us in such a traumatic way, we had a few significant people that came in shortly after Jack's birth and helped us take our first few steps on this new path.  Because of these nurses, the love and prayers from our family and friends, along with the deep longing to change families' experiences, I accepted the opportunity to share our story at a staff meeting at the hospital.

Two nurses played a huge impact in our story.

A nurse came in and said, "Look at your beautiful baby!"  That moment CHANGED MY LIFE.  Her comment helped me believe, that yes, he is a beautiful baby.  She helped me remember what I prayed for each day of my pregnancy, a fearfully and wonderfully made child.  Jack, you are an answer to prayer, my beautiful baby.  I will never forget that day when she came in and doted over our son.

Another nurse came in and pulled up a chair and stayed after her shift was over.  She loved on Jack and treated us like any other family.  This helped me realize that people (other than our family and friends) would accept our child.  She helped us celebrate his birth.  That he is precious.  She came in with this adorable hat and said she specifically grabbed it for Jack.

I told them that I understood that the reaction to the diagnosis can vary from family to family.  That many times the room will be filled with tears, silence, and worry about the future.  I mentioned that I have met a wide spectrum of families and their responses have included ideas of considering putting their child up for adoption, to families that took only a few days to adjust to the news.  I assured them that I have NEVER met a family that wished they would have never had their child.  Our children are cherished, loved, and adored like every child born. That our kids bring so much joy to our lives and help us see life in a much more beautiful way.  

I showed them this picture that was taken by my dear friend after Jack's birth...

Each family comes to a point, whether weeks or months, where they gaze upon their child in amazement of who they are and wouldn't change their child if they could.  

I asked them if they would consider creating the environment that made families reflect on their time in the hospital and say, "Wow, they knew something before we did.  That our child would change our lives for the better."  I asked them to go outside their comfort level and love on these families who may be fragile, in shock, fearful, and filled with tears.  Help them see what they will soon come to see when they fall in love with their child.  When their baby steals their heart, smiles, coos, and they come to realize they have been given one of life's best gifts.  I promise you, the family will never forget your response.  You have the influence of starting this beautiful journey with a positive message, their child is to be celebrated like any other child.  

I encouraged them that if they didn't feel comfortable with what to say to the parents, go over to the baby and say something to the baby.  "You are precious." 

Tell them our story.  

Tell them to connect with other parents...not therapists, teachers, or doctors...talk to actual parents as they know what it's really like to have a child with Down syndrome.  

Let's do this better.  

I know we can do this better.  When I say "we" I shared that I feel it's important for us families to follow up with the hospitals.  To let them know that if we had a chance to change our child, we wouldn't.  How can we blame the hospital staff if the only experience they have with us are when we are crying and filled with sadness?  They don't get a chance to see when we can't stop giving our sweet child kisses, cuddling them to sleep, living our lives, being their biggest fan, and beaming with pride at their accomplishments.  

At the end of my time, I asked if any of the nurses had questions.  One of the NICU nurses asked for my advice on a situation that she has encountered.  This reminds me that our work is far from done...

"What if a child comes into the NICU for a short period of time and the doctor doing rounds knows that the child has Down syndrome and doesn't diagnosis the baby when we all know it's evident?"  She explained that the doctor told her that the family can go to the first or second appointment (1 or 2 weeks later) and get the diagnosis then.  

I was speechless.  I even had to have her tell me the scenario again.  Are you kidding me?  A doctor has suspicions and doesn't say anything to the family?  What if there were other health issues that need attention?  What if the parents opted out of an  ultrasound during pregnancy and there is a heart condition and you just sent the baby home?  I couldn't believe it.  This doctor didn't want to have a difficult conversation.  Sounds like he was just punching his time card, only to dismiss that these families are people.  Or even worse, looking at this baby like a medical text book.  

Let's just say I didn't even make it out of the parking lot before calling Jack's pediatrician so he could help me understand how this could happen.  How can we reach the doctors?  How can we spread the word about how amazing our children are, how to properly deliver a diagnosis, and how we can bridge the gap between the medical community and families loving their lives raising children with Down syndrome.  

I read them the letter I wrote and put in Jack's basket and shared my desire for each child to be celebrated and family to be congratulated.  I revealed to them that I had heard from a family that received one of the baskets and that they said the basket meant the world to them.  The family also expressed that it was the only congratulations they received while they were in this hospital.  It was so heartbreaking to hear this and so motivating to me to get more of Jack's baskets and stories in the hospitals.  I am excited about the upcoming meeting with Gigi's medical outreach committee and Down Syndrome Diagnosis Network later this month.    

Overall this experience was so amazing and provided healing to our experience.  It will change families' stories.  The nurses were so receptive to the message and I believe they all desire to do better.   

Our work is far from over...and I can't wait to continue to speak up about changing families' stories.  

Jack, you are changing the world and I couldn't be more proud to be your mama.  Let's do this better.  

Milestones & Milemarkers

Determination.

Jack army crawling at 15 months

I am proud of Jack...I know he simply works harder to accomplish things than if he didn't have an extra special chromosome.

Last July (when Jack was 4 months old) we had an appointment at a hospital that invovled a speech pathologist who gave us information regarding the thickening of my milk due to aspiration and along with that they invited an occupational therapist in for a few minutes to do a quick evaluation.  She had done an assessment on him in less than five minutes and then left the room.  Two weeks later we received a letter with a summary of her evaluation.  I was in tears.  I read it and when she referenced that he was below average than typical kids I was defeated.  I was thinking, no, not my Jack, he is doing great!  Does she know he rolled over at 6 weeks?  Does she know he can transfer objects to each hand?  Does she know???...blah, blah, blah.  

Then I started justifying that she was only there for a few minutes, that she had gotten some of his basic info wrong, she didn't know Jack.   But I had to ask myself if I was seeking achievement in these milestones.  Was I thinking that his value was coming from what he could do and at what timeline he was on compared to the books I was reading about kids with Ds.  Was there pressure to show the world that he wasn't any different than typical kids?  Jack had hit many of the milestones in the 'average' timeline and then they came a little slower.  The time from when he sat up to when he started crawling seemed like years.  I called Jenny and she mentioned the word plateau and it was exactly how things were going.  The plateau, Jack had hit a plateau in his development.  And the gap was getting wider.    

Milestones.    

As the weeks went on I thought to myself, if I am constantly going to be looking around Jack at what others his age are going to do, I am going to miss the very milestones that he IS reaching.  I am going to miss his life watching everyone else's. I recognized that the disappointment came when I wanted him to do things because of many of my own selfish desires.  But really...is it about ME?  But I started with the question...Why are you sad about this?  Is this about me and what I want?

Which leads me to the wide road that many of us take...the comparison trap.  We look to the left or the right and we have the temptation to base our value on how we measure up to them.  We see other people doing things, buying things, going places, what their kids are doing/not doing, the size of their waistband, the jobs they have...it can all be apart of the comparison trap...and guess what...NO ONE WINS!!  NO ONE!  There will always be someone better, bigger, wealthier, smarter, prettier, stronger, more talented and then we realize we never really measure up.  

Aren't we all really running our own race? 

I Corinthians 9:24 

Do you not know that in a race all the runners run, but only one receives the prize? So run that you may obtain it.

I love the metaphors you can get from running.  I wasn't always a runner and actually in college someone made a comment that I wasn't the 'runner type'.  Thankfully, comments like that only fuel my gas tank and make me run harder.  :)  

As I have mentioned before, running is my therapy and I find myself understanding God more through my times of reflection during my runs.  I started running in high school after golf practice and before late night volleyball practice.  I lived in a very small town 10 miles from 'the big city' so it was something to do before the next practice.  I found myself leaving everything that was pressing on my heart out on the road.  I continued running through college for a hobby and I never thought I would enjoy long distance running.   I seriously can't express how much running has done for my life.  I started going farther and farther.  Then I signed up for a marathon...

My biggest challenge is myself, in the goal I place on myself.  My first marathon was miserable.  I didn't train well, I knew I could do better.  I knew I could go faster.  So I kept moving forward.  One step gets me closer to the finish line.  The milemarkers came faster.  And faster.  And faster...and the last three marathons I  have had a sweat sister to push and encourage me.  Isn't life (and running) so much better when you have someone to do it with?  

Having a child with a developmental delay, I could so easily become discouraged in what he 'should' be doing at his age.  He will eventually get to these milestones, we just get to enjoy each one longer.  :) When I truly accepted the fact that he is 'running his own race' my eyes were open to the amazing effort it takes for him to achieve each milestone.  When I am tempted with that comparison trap, I acknowledge that I don't want anyone else's child, I want Jack, and he is working SO much harder than others to achieve each milestone.  

The best way I can describe how I feel when celebrating Jack's milestones is when you go to a marathon and you watch the fast runners gliding past the mile markers as if they are floating, looking as if there was no effort.  As you continue to watch the runners past the pace gets slower, you start to see the effort that it's taking for the runners to take each step forward.  The determination in their whole body to get to that finish line.  The effort that it takes to mentally, physically, and emotionally to keep going.  Don't give up.  I can't go to a race anymore without my eyes filling with tears. 

Watching my sweet Jack make efforts to move makes me so proud of his determination.  

I could have given up when I crossed that line after the first marathon.  But 1000 of miles later, with a lot of sweat, tears, and amazing memories I have passed those milemarkers faster and faster.  

Here was the devotional that I read on the morning of the Twin Cities 10 mile...1st race post Jack's birth....

Jesus Calling-October 

Be willing to follow wherever I lead.  Follow Me wholeheartedly, with glad anticipation quickening your pace.  Though you don't know what lies ahead, I know; and that is enough!  Some of my richest blessings are just around the bend: out of sight, but nonetheless very real.  To receive these gifts, you must walk by faith-not by sight.  This doesn't mean closing your eyes to what is all around you.  It means subordinating the visible world to the invisible Shepherd of your soul.

Sometimes I lead you up a high mountain with only My hand to support you.  The higher you climb, the more spectacular the view becomes; also, the more keenly you sense your seperation from the world with all its problems.  This frees you to experience exuberantly the joyous reality of My Presence.  Give yourself fully to these Glory-moments, awash in dazzling Light.  I will eventually lead you down the mountain, back into community with others.  Let My Light continue to shine within you as you walk among people again.

We continue to learn through each of these milestones and milemarkers...and boy has Jack taught us how to CELEBRATE big time!  

Pace

Well it's been a month since I had the D & C for the miscarriage that we had of our third precious child. Emotionally I have had my ups and down when thinking about it, but I do have peace that God has a purpose for the pain. 

The day after the D & C, we traveled to visit my brother and his family in Tennessee.  He relocated to TN in 2002 and fell in love with a southern belle and now calls the south his home with his wife and son.  My mother is originally from Tennessee and it was so great to see many of our family members during our stay!

                                             

                                                 

We were able to kick off the vacation with an event called, Country Music Lends Down a Hand, with proceeds going to the Down Syndrome Association of West Tennessee.  There were a few artists from Nashville and the local area.  My sister-in-law was a part of the planning committee and it was such a fun night out celebrating those with an extra special chromosome! Our time with my brother and family was wonderful, filled with relaxation, great conversations, and fun toys to ride around the land they live on. Luke even got to help feed their new baby goat!

After spending a few days with them we headed back to Nashville where we had the pleasure of staying with one of my high school friends and her family.  We visited the zoo and a water park and we couldn't leave our trip without making it downtown Nashville.  

The pace of summer is moving too quickly.  Filled with play dates, walks to the park, sleeping in and staying up wait too late, bike rides, hockey training for Chris, volleyball camps for Carissa, road trips, and girls' 

weekend away.  With us both being educators, WE LOVE SUMMER.  Please slow down.  I think I love this summer much more because the season of winter was so long and cold. 

                                                                        

Speaking of pace, my sweat sister and I are running a half marathon at the end of August.  We have not raced together since Chicago in 2009.  We have been on opposite schedules with having babies so we long for the day we can race TOGETHER again.  We decided after I had the miscarriage that we would put a race on the schedule and enjoy the training and goal that both of us needed to get a little bit of ourselves back.  

Last week on our training schedule it called for a pace run.  Katie, my sweat sister, and I were not able to coordinate a run together that week so I asked Chris if he would pace my run (while pushing the boys in the jogger) and I would try to keep up.  Chris runs everyday, 5 miles minimum, and he runs fast!  I was about to embark upon a girls' weekend and I knew I would be consuming a lot of good food and not getting much sleep...so Thursday night it was.  Most of the run I was staring at the bottom of Chris' shoes, but so thankful to have someone to do this (painful) run with.  For those of you not familiar with what a pace run is...it's when each mile is at the pace of race day.  So whatever pace you are hoping to finish the race at (race pace)...you average that over the miles you are scheduled to run for that day. 

I was so thankful for that run to be over.  It pushed me and it was not fun, but it was so good to see the fruit of the hard work.  There is nothing better than finishing a good hard run.  I have seen in my years of running that pace runs are key to getting faster overall.  It not only physically helps you but mentally you start to believe you can keep that pace.  You are faster than you think.  I did my first marathon in the summer of 2002 and have completed 8 since then.  I have run at many paces.  Some may say fast, some may say slow...but what I do know that I am better at running because of my pace runs.  My pace from the first marathon to the last was a difference of 3 minutes per mile, and shaved off 1 hour 20 minutes.  I started to understand the importance of setting the pace, especially in long distance runs.  Definitely have learned that mistake the hard way...doesn't every runner feel like they could sprint the first three miles after they jazz you all up at the start line???

When I started to understand the longer distances I became more intentional in my pacing.  

I opened my Jesus Calling devotional that evening after that run with Chris and company and this is what it said... 

YOU ARE MY BELOVED CHILD. I chose you before the foundation of the world, to walk with Me along paths designed uniquely for you. If you trust that My plans are to prosper you and not to harm you. Concentrate on keeping in step with Me, instead of trying to anticipate My plans for you. If you trust that My plans are to prosper you and not to harm you, you can relax and enjoy the present moment.

Your hope and your future are rooted in heaven, where eternal ecstasy awaits you. Nothing can rob you of your inheritance of unimaginable riches and well-being. Sometimes I grant you glimpses of your glorious future, to encourage you and spur you on. But your main focus should be staying close to Me. I set the pace in keeping with your needs and My purposes.

Well I came to realize a few days later that the date I had read was one month off.  I was reading June 18th instead of July 18th.  

This is how God continues to show up and remind me that if we keep in step with Him, trusting Him, He sets the pace for me and our family...each step forward on this beautiful path.

Heartache and Hope

This past April, I went to a Beth Moore conference with a few of my home girls and she challenged us in the way we describe situations going on in our lives.  Things are irritating, challenging, or hard.  She said, "Ladies, we need to stop saying things are hard when really those things are irritating."

Well, the past few weeks we have experienced some hard news.  Many of you have experienced this same heartache.  I am sorry.

January 7th, 2015 is 28 weeks days away.  I know this because at the end of April we found out we were pregnant with our third child and this was the due date.  We were excited and anxious all at the same time.  The weeks leading up to the first appointment felt like years and I couldn't believe we were going to have another baby.  Wasn't my baby Jack just born?

We weren't exactly sure on the due date so we got to see our little blessing on the ultrasound at 6 weeks, 2 days.  Seeing this little miracle and his/her heartbeat on the screen put tears in my eyes and was reality that we were having a baby!  They noticed I had a subchorionic hemorrhage and that I was not to do any exercise, lifting. or anything strenuous.  I had one of these with Jack and had to take it easy for 3 weeks.  So basically I got chubby for the past 9 weeks.

Here is our sweet baby at 6 weeks, 2 days old.  

Today, I was hoping to share the exciting news that we were 12 weeks pregnant and Jack and Luke would be big brothers to this new baby coming in January.  But instead, we were at the hospital because I had to get a D and C.  At my 9 week appointment they wanted to check to see if the hemorrhage had cleared up.  This was at the beginning of June, 4 days before the we did our Jogging for Jack event at the 5K.  When the ultrasound tech checked the baby I just got this feeling that things were not looking good.  He started measuring the baby and I was looking for the flutter where we had seen the heartbeat 3 weeks earlier.  Nothing.  I could tell in the tech's hesitation that it was not good news.  After he announced that the baby no longer had a heart beat, I felt the warm tears streaming down my face.

I waited in the room for the nurse practitioner to come talk to me and just wanted to call Chris.  She came in and explained that my body would recognize that the baby is no longer living and I would miscarry in the next few weeks.

Hearing Chris' voice made me breakdown.  I explained what happened and I cried for the next few hours which later gave me the worst headache ever.  I called our family and friends and shared the news that we were no longer pregnant and that I would miscarry anytime.

Because I wasn't able to do any sort of exercise the previous three weeks, I strapped on my tennis shoes and went for a run.  I stopped, cried, ran, jogged, stopped, cried and ran more.  I came home and looked at my boys and just held each of them a little longer.  I held Chris and just was so very thankful that he is my husband.

After waiting 3 weeks for my body to naturally respond, I had to schedule the procedure to help expel the baby.  I thought I had emotionally processed all of it, but as I was filling out the forms this morning I came across the document that asked what we wanted to do with the baby after the procedure.  Ugh.  My baby, what do I want to do with my baby?  We chose the option that is offered to everyone that goes through this process.   They take the babies and honor their lives by burying them in a special spot with other sweet babies that didn't make it to birth.  Our hearts are so heavy and many, many of you reading this have gone through this heartache and lost a sweet baby or babies.  I am so sorry for your loss.

There was a moment that brought me back to Jack's birth and delivery.  I had to be sedated and having the oxygen mask on me and as they extended my arms out to the side all I could think about is that evening on March 25, 2013.

I woke up about an hour later.  I never respond well to sedation and medication and was very nauseous. I threw up numerous times and after about an hour, Chris and I were able to head home.

This experience was painful, heartbreaking.  From the pain of loss, the frustration that my body wouldn't respond, the patience each day, the reminder that I am carrying my child in my womb that will not make it to birth.  But through this, God continues to show His faithfulness, His comfort, His love, and His goodness.

I am thankful my doctor could be there, to give me comfort, and to share in the grief.  I am thankful for my husband who constantly challenges me to trust in all circumstances.  I am thankful for my boys who are miracles, like each and everyone one of us.  I am thankful for our families and friends that share in our grief and give us encouragement and strength.

My friend called me the day we found out that our baby had passed away and she shared this from Jesus Calling:

Welcome challenging times as opportunities to trust Me.  You have Me beside you and My Spirit within you, no set of circumstances is too much for you to handle.  When the path before you is dotted with difficulties, beware of measuring your strength against those challenges.  That calculation is certain to riddle you with anxiety.  Without Me, you wouldn't make it past the first hurdle!

The way to walk through demanding days is to grip My hand tightly and stay in close communication with Me.  Let your thoughts and spoken words be richly flavored with trust and faithfulness.  Regardless of the day's problems, I can keep you in perfect Peace as you stay close to Me.

I am thankful for the HOPE I get in God's promises.

God, I walk hand in hand with You as You give us strength for this climb.