I wasn’t here that morning, the morning she passed away – Mother’s Day.  My mom and I were spending the weekend 4 hours away from my home in Door County, WI courtesy of Children’s Hospital who gifted me the stay for the amount of money I raised last year.  My mom was key in helping this happen and seeing we had very little time together we would celebrate this weekend together.

My mom and I have always been close until Lydia was born.  Lydia not only changed me as a person but many of my relationships, including the close one I had with my mom.  Not by choice – just circumstance.  However, my mom understood the demands of working full-time, raising a special needs child and two typical boys.  So, we relished our one weekend a year we had together.

Before I left on Friday morning I had an appointment nearby pretty early in the morning.  Before I left I gave my oldest a big hug and told him I loved him.  I thought about my youngest and realized I would see him before I actually left so would hug and kiss him later. Lydia was busy eating and I didn’t want to bother her momentum so just walked out the door to quickly get to where I needed to be.

After the appointment I was driving back into town and looked at the clock. It was 8:15 and Lydia would be headed into school any minute.  I had this overwhelming feeling to go see her, kiss her, hug and say my goodbyes.  The news had recently been riddled with parents losing their lives and leaving children behind and although Lydia’s mental capacity never allowed her to know timing or details of my departure I just couldn’t leave without saying goodbye.

When I arrived to school she was still sitting in my sitter’s car and it was raining.  I opened the door and told her I loved her and kissed her before her school aide came to the door to get her.  I picked her up out of her car seat and placed her in her wheelchair and the aide sweetly said “boy, she’s getting the royal treatment” as they usually made Lydia get out of her car seat and seated herself.  I quickly pushed her inside school as not to get wet and continued with my hugs and kisses.  The aide commented how I would see her later that day and I replied “no, I’m going away for the weekend so I won’t see her after school.”  She said “by all means hug and kiss away.”  I continued until Lydia clearly became annoyed and gave me the evil eye.

I left for Door County knowing that I had said goodbye if something happened to ME.  I had said “I love you” to all 3 of my kids that morning and each got hugs and kisses.  While it may have seemed natural to do that when your leaving my thoughts that morning created very purposeful actions to make sure my kids knew how I felt.  Lydia probably fared better in the hugs and kisses department and as I look back now I am SO extremely happy I was prompted to drive across town to say goodbye to her at school.  No regrets.

After my mom and I arrive in Door County we experienced one of the most beautiful weekends we had up there in years.  The sun shone brightly all weekend and we were actually able to go out without coats.  We enjoyed shopping the boutiques and eating quiet dinners.   I called home each day briefly to check how everyone was and received good reports of how great the kids were doing.  Saturday night before dinner I called Tom and he said Lydia had a wonderful day, played, was outside, he enjoyed some quiet time with her, she ate great and had a bowel movement (gross, I know but something we were forced to keep track of for her).

On Mother’s Day I woke up around 7:45 and I heard my mom typing away in another room on her iPad keyboard.  With very little cell service I hopped on my phone to see all the Mother’s Day wishes on Facebook.  I looked again at a picture someone had posted of Lydia from Friday night and read their kind words about how much she meant to them.  I teared up thinking about how Lydia had touched her heart so much.  I laid there relaxing thinking about how my quiet retreat was almost over and in just a few hours I would go back to the busyness of my life again.

The details of what happened next are fuzzy but my mom’s phone rang and I could hear her asking “what? Sarah, I can’t hear you”   I don’t know how I grabbed the phone but I think the call was dropped due to cell service and I called back and my caregiver, Sarah was screaming and crying that Lydia was blue and there was blood coming out of her nose.  She was hysterical and I was by the window of our room knees bent screaming “What? What is happening?  Tell me. You need to calm down to tell me what is happening, what is happening Sarah?”  Tom came on the line also crying like I’ve never heard him before in his life and just told me to get home.

My heart was racing – I posted on Facebook for people to pray…Lydia’s situation was bad.  But I felt so uneasy, something was really wrong. I called one of my best friends and apparently per her telling me later I yelled for her to get to my house to see if Lydia was alive – go now.  She could barely understand me either.  I called my brother and his wife answered and all I remember is her yelling between the tears to him “SCOTT, GO TO BURLINGTON NOW, THERE IS SOMETHING WRONG WITH LYDIA, GO NOW SCOTT HURRY!”  I called Tom back and through tears and screaming I asked for him to tell me what was wrong…tell me.  Crying he said “she’s gone…she’s gone.”  I asked about the ambulance and what they did and he said “there was nothing they could do for her, nothing. Just come home” and the line went dead.

After that call I called my best friend to tell her Lydia was gone.  I didn’t know but she was outside my house waiting to go in.  She collapsed near a police officer.  My brother called as he had headed to the ER and wondered why the ambulance hadn’t arrived.  My mom had to tell him she was gone and still at the house in which he went there.

I don’t remember what happened exactly after all those phone calls but I remember having to get ready to go so next thing I recall is collapsing in my mother’s arms on the bathroom floor and sobbing more heavily than I’ve ever sobbed in years.  I remember saying “no, no..no.”  I shook on the cold bathroom floor in my mother’s arms.

As we gathered up our things I needed better phone service so I went upstairs to ask the ladies I had met the night before if they had working phones.  Ironically they were 9 moms with Down syndrome children who also would spend Mother’s Day weekend away together.  My mom and I had met them the previous night before dinner.  We had this common bond of special children.  When they saw me come into their room that morning with tears they all jumped and asked me what was wrong and how they could help.  I blurted out through my tears my daughter, I just told them about the night before, had died.  As special moms do they all jumped into gear to help us load up our stuff to get out.  I can honestly say I can’t remember them doing it – I was in a fog and a bubble all my own as I got into the car to leave.

Many people after the dust had settled asked me how that drive home was.  Well, although to most it would have seemed like a lifetime it actually felt very short.  My mother was as strong as a rock as she maneuvered the highway at 100 mph flashing her lights at people to move over so she could keep going.  I was on my phone where I posted to many of Lydia’s fans letting them know she had died and I was on my way home.

I didn’t speak to my mom much.  I would look up occasionally with some thoughts.  I remember asking her “where will I bury her?  I don’t know this, where will I place her?”  My mom then mentioned our church’s cemetery which helped calm those thoughts.  We stopped briefly at a gas station for a bathroom break and after we got back in the car I remember saying “I don’t want many people there at the house.  I want those that have stood by me – only them to be there when I get home.”

I also remember calling a friend asking her to look up on our company’s website for my manager’s phone number.  She didn’t know yet and I told her and she was in shock and disbelief and tears.  I called Nurse Mary where I told her as well and she didn’t know.  I felt so bad as I heard these people break.  I could hear their hearts breaking over the phone.

Other people I texted was my brother, Brian, asking him to go to my house to take our two boys.  I talked to my middle brother Scott and told him my kids needed their full attention today – that both brothers could help do that.  He understood.  Brian took the boys back to his house first.  I called Devin there as calmly as I could to ask him how he was.  He said “ok, but I really don’t want to talk about it mom, I’m ok.”

We arrived home and most people were now standing outside my house.  That look on their face I’ll never forget.  One of sadness, their eyes telling me they were sorry.  They seemed like they wanted to hug me but wasn’t quite sure how much distance to give me.  I walked in immediately bypassing everyone and hugged Tom where we proceeded to cry together in our kitchen.  Outside my mom collapsed into my oldest brother’s arms.  I had texted on our way home telling my friend to have my brother waiting for my mom – I knew she had been strong this entire ride home but she would break too when she had the chance.

We went into see my baby…she was propped up on her two pillows. She had a bruised face around the hairline but otherwise she looked like she was sleeping.  I went to put down the side of her special bed and Tom said “what are you doing?”  I said “I want to grab her, I want to hug her.”  He pulled me back a bit and said “no, don’t – you don’t want to remember her that way – she can’t hug you back, she’s not…”  I knew…I knew he wanted to tell me she wasn’t the soft, pliable little girl I had left.  I cried.  I stroked her soft hair and kept repeating very close to her face “I’m so sorry, I’m so very sorry.”

I pulled back her blanket but again Tom stopped and asked me what I was doing. I told him I wanted to see her.  He encouraged me not to look – to just look at her sweet face and remember her like this.  I got a glimpse of her pajama top and it was cut as if the paramedics started into action but stopped.  I just sat there looking at her in her bed telling him she was just going to wake up…she needed to wake up.  And we cried.  We sobbed.

The night of her death before bed I told Tom I was so very sorry he was the one to have found her, I couldn’t imagine, but I told him that selfishly I was glad it wasn’t me.  He said he felt the same way and was so very glad it wasn’t me as well.  He said “I don’t know if you would ever recovery mentally and emotionally from what I walked into, what I saw.  I’m glad it was me too.  I thought about that all day.You of all people wouldn’t have been able to handle this.”

Days and even 2 weeks after Tom kept telling me he would never be able to get the site of her out of his mind.  I probed each time wanting to know exactly what he experienced.  What he experienced NO father should ever have to.  (if this is too graphic, stop reading).  What he first saw was her foot blue peeping out from underneath the blanket.  He thought she was seizing.  He instantly went into rescue as she was face down turned her over on her stomach. As he turned her over he saw she was dark blue with blood coming out of her nose.  She was already stiff feeling.   He said he blacked out for half a minute.  He screamed.  Our caregiver came running and fumbled for the oxygen until he told her it was no use, she really was gone.  Our caregiver said Tom called 911 screaming “come now, my daughter is dead, my daughter is dead!”

Outside of the room before Tom walked in to find Lydia was our youngest playing cars on the floor.  After my caregiver was trying to help Tom and the ambulance was on the way she went to look for my boys.  She found them both hiding behind the couch downstairs.  I honestly can’t imagine what they thought hearing their Daddy for the first times in their lives in that distraught state.  As people started to arrive so did one of my best friends to explain to my boys that Lydia had gone to heaven.  Seeing they had just seen  the move “Heaven is for Real” in the theater the week before they had this beautiful serene image of heaven.  My youngest (3) asked “so, Lydia is riding Jesus’ horse now?”  Why yes, honey, she is.

While so much went wrong that morning there are things that went right, things I’m thankful for.

• Selfishly, I’m thankful I wasn’t there.  I fought so hard for her to live and I think the guilt had I been home would have riddled me forever.  I would have thought about what I did wrong or what signs I missed.  I would have blamed myself…forever.
• I’m thankful that if I couldn’t be with my husband to get this news I with my rock, my mother who held me close and sssh’d me like a baby on the bathroom floor.  I was with the woman who has showed me the epitome of strength and she held me once again.
• I’m thankful we live in a small town and the medical examiner agreed to leave Lydia here for me to say goodbye to her in our element and not a funeral home.
• I’m thankful I had the close friends I did who dropped whatever they were doing to come to my house.  I’m glad they held me as I cried. I’m glad they were there for my husband when I couldn’t be.
• I’m thankful all 3 of my brothers showed up and did what they did to help us through the day.  Taking my boys, holding up my mom.
• I’m thankful my husband stood by Lydia’s bedside the entire 3 ½ hours of my ride home.
• As much as I would have never wanted her gone, I’m thankful she died in her sleep and not in the hospital hooked up to tubes and possibly suffering longer than she should.

Lastly, I’m thankful for my faith.  Before they came to take her I bent over her bed near her face and sang “You are my Sunshine” to her.  As I did I sat there thinking that I was singing to my daughter’s body but she was above me beautiful and in perfect form saying “mommy, please don’t cry, please don’t cry because I’m the best I’ve ever been.”  I believe that’s true.  She’ll always be my perfect little girl but now she has NO limitations. She’s entirely whole and while for right now it may be hard for me to be happy about her absence she IS happy and she IS the best she’s ever been.  She is my eternal sunshine. Shine baby girl, shine.