Whether you believe in God, a higher power or nothing I’ve encountered many people who believe in signs. You know the things that happen we often call coincidences. Well, me believing in God I believe there are very few coincidences in life but rather God’s interventions. Before Lydia died I saw many of his signs, some I recognized and some I didn’t. So, whether you believe or don’t believe give this a read. I had to document ‘the signs’ or I’m afraid they will be forever erased from my memory.
Now when I say signs I’m not saying “yes, I knew she would pass away” but my belief stems from that due to these signs I believe my sweet Lydia is in heaven. Some of the signs were amazing at the time and I even recognized them as they happened but again never thought they may be a prelude to her death. Now…hindsight being 20/20 – I see they were.
So here they are – as you’ll see they don’t all connect or piece together but some are merely random things that happened in the last year. Grab a cup of coffee or a glass of wine – this will take some time.
Converting my faith
For over 2 years I had been contemplating converting to Catholicism. I grew up Lutheran and well, my boys were going to a good Catholic school and I had been non-practicing for years. So, in September of 2013, I took the leap and started attending classes every Sunday morning. I would attend church, leave before the Eucharist (communion) and head to class. I found my faith which had been status quo strengthening with each class I attended. I found myself in a better, more positive state of mind. On April 19th, Lydia’s birthday, I was confirmed a Catholic.
Now, while at the time I thought it was special, I guess now I didn’t know how very special. To me, it was about practicing my faith with my family but the day was so unique – it was her birthday and here I was giving this renewal of my faith.
I’ve been told that with this change of faith we could bury Lydia in a catholic cemetery and now I as well as Tom can be together there with her. We have already chosen our burial plots when we chose Lydia’s and she is buried in the middle of where we will eventually be laid to rest.
In December on a very snowy day my son, Devin, my caregiver Sarah and I headed to our Priest’s office after school. Lydia was soon to be the discussions of brain surgery. I had known this since the beginning of November but as the date was getting closer for these discussions my heart was heavy and I needed some extra prayers or so I felt. When we arrived we all lifted her wheelchair over the stairs to get her in the door. We then shuffled our snow covered bodies into his small office as the Priest took a seat behind his desk. Lydia was next to me in her wheelchair and Father Jim began to ask me about her. I shared her overall chromosome disorder and then her recent diagnosis of epilepsy and specifically why we were there.
A little you may not know about Lydia is that she was our mover and shaker – she had ticks, often flicked her toys, or licked them rarely stopping from moving. With her mental capacity we couldn’t tell her to be quiet or stay still – it didn’t register. So, with that said, after our introduction of Lydia I asked for her to receive an ointment of the sick. Father Jim gladly obliged and began praying. What was different about Lydia this day was as he began to pray she stopped moving. Completely. She sat in her chair with her hands on her lap and for what Sarah and I were in disbelief she was completely quiet and completely still – almost as if she was listening. We were in awe…this child that never stopped moving just sat there during the prayer, perfectly still, perfectly quiet. But, our glares of disbelief didn’t stop there.
After the prayer, Father Jim put oil on her forehead and ointed her. After he completed that Lydia looked into the corner of the room and while still sitting perfectly still gave the corner of the room the biggest and widest grin I had seen in a very long time. She had the largest smile as she sat perfectly still looking up into the corner of the room for what seemed like a lifetime.
Father Jim turned his head and looked into the corner where he had some type of muted paper ornament or collage hanging in the corner. He looked at me and at her and asked “if she looking at that?” I wasn’t sure – I said that whatever is hanging there isn’t something she would normally be attracted to – it wasn’t colorful, nor did it have any lights or music to attract her. We all kept looking back and forth between her and the corner asking each other what might be intriguing to her. While we discussed she just glared and continued smiling. We were all amazed to say the least and eventually she dropped her gaze and continued on with playing with her toy in hand. She was blessed that way in more ways than one…of that I’m convinced.
Heaven is for Real – the movie
In April, my son Devin mentioned the movie “Heaven is for Real” was coming out. This movie is about a little boy who claims during a life threatening surgery he went to heaven. He recants who he saw in heaven and what it was like when he was there. Well, we talked about seeing it several times however those times fell through. On Friday, May 2nd Tom stayed home with Lydia and I took the boys to the movie. I was worried Grant (3 years old) wouldn’t pay attention but that wasn’t the case. He certainly watched and lasted through the whole entire movie.
I cried during the movie at one point – I remember one part of it hit me and I wiped my tears thinking of my own daughter and her countless surgeries. We all left feeling like it was a special movie and certainly with feel good thoughts. If you think about the timing of the movie and Lydia’s death we saw it just 1 week before her passing which was May 11th. What makes this sign so special is that the morning of her death a good friend came to the house to explain to my boys about Lydia’s passing. She talked about Lydia going to heaven and luckily the boys already had this beautiful vision from the movie. My youngest asked her “so, is Lydia riding Jesus’ horse?”
I love that the boys saw this movie just a week before she passed. I think having seen this helped them develop a sense of peace from what they believed heaven was like. We were supposed to see this movie when it first came out however timing never panned out but luckily right before she died we did and it couldn’t have come at a better time. The movie is now out on DVD and I have already purchased it for my boys. When my son saw it on the table he sought me out in the house and said with movie in hand, eyes low “thank you mom.”
The Wednesday before Lydia died I jolted up from bed sitting up yelling. My husband said that as I sat up I yelled “YOU ARE SO FAR AWAY!!” He shared how I was crying and talking and obviously had had a very upsetting dream. As I laid back down I recalled to him my dream.
The beginning of the dream I saw my Grandpa who I fondly called “Pop”. He was an amazing man who had the biggest, largest heart. When I grew up without a father he was the man who told me how beautiful I was and how wonderful I was. He was my Dad. I hadn’t dreamt about him since he died which was in the early 2000’s.
Well, in my dream he was dressed pristinely in his white t-shirt and we caught a cab to catch breakfast at a diner. I sat with my back to the door and he across from me with a large, bright lamp over our heads. He smiled most of the time and I don’t remember him talking. But he had this amazing glow to him that was so happy and serene. I kept repeating how good it was to see him, how long it had been since I had and I was just glad we could be having breakfast together. The breakfast was short and I told him I had to see the Governor of Wisconsin and had to go. I gave him a kiss and off I went. But, those few moments made me feel warm, safe and calm. And my joy I felt from seeing him…amazing.
The next thing I remember in the dream is being in the car with Tom and we were headed to see the Governor. We had an appointment at 10:45 and he saw people every 15 minutes. I could see in my rearview mirror that Capitol was getting further from my sight. I started getting loud in the car telling him we were late and we were driving away from the Capitol. I told him to stop at the gas station coming up and ask but he refused to stop and just grinned at me the whole time. As I saw the time and the Capitol getting farther apart I turned and looked to him smiling and telling me “everything will be ok – we’ll get there, calm down.” I remember hitting him with both my fists telling him “YOU ARE SO FAR AWAY!” and that is when I woke up.
Now, let’s make sure you understand – I’m not a hitter. I’ve never been that upset with Tom to beat him with both hands wildly. This behavior was out of character for me. But I kept telling Tom when I woke up – you were just so laid back, there was no sense of urgency and we were late. I don’t recall a time I was so upset with you.
After I shared my dream with Tom we actually laughed about him not stopping for directions but my rhetorical question was “why would I be dreaming about the Governor? The legislation I helped fight for was over – why would the Governor even be a thought in my head?” I quickly dismissed it and told Tom how great it was to see my Pop. I hadn’t had a dream about him since he passed and it made me feel good to see him, if even in a dream.
Ironically (or is it?), after Lydia died the Governor called me directly to ask if he could name the law I had been a part of “Lydia’s Law.” When I shared this dream and how he called me someone also mentioned to me that they felt the dream pertained to my Pop in heaven letting me know how good he was and he would be greeting my little girl in heaven. Honestly, I can’t think of anyone better to be at the gates letting her run into his arms. Or at least that is how I envision it.
The weekend I left
The Friday morning (2 days before she passed) I left for Door County I had an early morning appointment in a nearby city. I left the house as the kids were frantically eating breakfast and getting ready with their caregiver. For some reason that morning I felt a need to make sure my kids remembered my goodbye. So, with that I scanned the room and I hugged my oldest knowing he would go to school and I wouldn’t see him again before I left. My youngest, I knew I would see before I walked out the door later and Lydia was busy eating and I thought I shouldn’t mess up that momentum because it was hit or miss with her at this time in the morning. I grabbed my purse and left.
After my appointment I was driving back into town and looked at the clock. It was 8:15 AM and I realized Lydia was with her caregiver at school waiting for her aides to come get her. I had this overwhelming feeling to go to school to say goodbye to her. Now, understanding Lydia’s mental capacity she may have sensed when she got home I wasn’t there but she didn’t understand timeframes or even if I told her mommy was going away to Door County. I know there were times I hadn’t said goodbye to her like I would have wanted but didn’t. I knew she also didn’t understand the length of time I was gone. But that morning, May 9th, it didn’t matter to me – I felt this overwhelming urge to say goodbye. I had time, so I would.
Time was running out and looking at my clock I needed to get to her school. I pulled up and Lydia’s caregiver in the car next to me shockingly looked over at me as I flew into the parking spot. I sprung out of my car and opened Lydia’s door while the mist of the rain fell on me and into the car. Lydia could feel the cold mist and shrugged her shoulders and made a grimacing face. I gladly exclaimed I hadn’t given Lydia a kiss and hug goodbye and I needed to do that. I proceeded to lift Lydia out of her car seat and into her wheelchair. I remember the aide saying “boy, she is getting the royal treatment today” as I didn’t make her get out of the car and into her chair herself. I quickly wheeled Lydia into school to get us out of the rain and parked her chair along the wall inside the door.
As she sat there in her chair, I kept telling her I loved her and smothering her with kisses. After a spell of kisses she started glaring at me out of the corner of her eye (as she sometimes did when annoyed) and started turning her head away. The aide standing there as if speaking for Lydia said “boy mom, I’ll be home around 3, you can give me more then.” I replied “I’m going away for the weekend, I wanted to say goodbye” in which the aide said “ok gosh, well, kiss away then!” I did. I kissed her more and told her I loved her so very much. That, my friends was my last goodbye to my little girl. No regrets. I had a strong urge to see her and I did. I kissed her like nothing else and loved on her until I was ready to say goodbye. Little did I know it was forever.
Babysitter gone sick
As I mentioned I was gone the weekend Lydia passed. I was celebrating Mother’s Day with my own mom in Door County, WI. An annual, girl’s trip we like to take. On the Saturday I was gone Tom had to work so I planned to have one of our trained caregivers with Lydia. On my way to Door County she called me and told me she was sick and knowing Lydia’s immune system I knew I had to find someone else.
I called one of the other girls, Kelly, who we considered part of our family. She had taken care of Lydia since she first joined a daycare at 2 years of age. Her and her family had also spent a few spring breaks at my house to watch Lydia while we enjoyed time away with our boys. She was a godsend in the fact she said she could work that Saturday while I was gone.
Now, I know this doesn’t sound like a sign or isn’t any big deal but it is. Kelly was very integrated into our family and Lydia’s life. Kelly’s kids LOVED Lydia and this last spring break spent most of their time hanging out with her at our home rather than with their friends. I had received videos of them with her and updates the entire week. This wasn’t the only time they had done this. Kelly’s kids had shared how this little non-verbal girl had changed their lives. So, for me – Kelly was one of the last people to see Lydia and how appropriate, right? It was meant to be that someone so involved be one of the last people to see her alive and say that goodbye that needed to be said. To me, it was God’s way of Lydia telling Kelly she loved her and thanked her for doing right by her so many times.
It wasn’t me
During the legislative fight for CBD oil I testified to the assembly committee my biggest fear. As I choked back the tears I told them that I feared with all my heart, body and soul finding my daughter dead in her bed in the morning. I shared how I would hold my breath turning that door knob not knowing what I might face. Not knowing if a seizure had taken her from me that night. I told them I didn’t want that to be happen but it was something I feared everyday.
Well, that morning I was not the one to find her. My worst fear of finding her and trying to recover from that never came true. Unfortunately, it was my husband. I so felt for him. I can still hear his screams on the phone to this day. I can still hear his cries and him saying “there was nothing they could do, she’s gone, just get home.”
That night I told my husband I was sorry it was him but glad it wasn’t me. He told me he was glad it wasn’t me either. He thought about it all day on whether or not had I been there if I would be ok. Just this past weekend he told me has PTSD like moments when he looks at her picture. He sees her blue, distorted, dead face and he panics and has to shake himself and look the other way to get the image of what he saw that morning out of his mind. So my sign…my sign is God was watching over us that selfishly it wasn’t me.
Other small but still important signs
Moving or not to move
Before Lydia had passed we had gone into contract to buy a house in a nearby town. Our wish for Lydia has always been to have her attend a special needs school. The only way to achieve that for her was to move. We were to close on our house May 30th. As I’ve mentioned Lydia died on May 11th, just a few weeks before we were to close and move in.
When we were negotiating on the house I had written a letter of why we couldn’t pay more and our intent to move for our daughter. I had heard that this letter greatly impacted the sellers accepting our offer. The sellers were from our small town as it was their parents’ house who had since passed away. The day Lydia died news spread fast and they heard just a few hours after she died. We were told they would let us out of the contract and give our earnest money back if we wanted out. A week later we chose this and were not forced to purchase a house and move to a town we no longer needed to.
After Lydia’s death, a former caregiver for Lydia and her newborn daughter stopped by and we were talking about baptism. As I sat there talking I recalled Lydia’s baptism and I suddenly remembered, she was baptized on Mother’s Day. I quickly ran to my files and found her invite and sure enough back in 2007 we baptized her almost a month after her birth on Mother’s day. Lydia also died and went to heaven on Mother’s day.
Many ask me how Mother’s day will be for me. Will I resent this holiday or consider it special? My hope is that how I think of it now will be special. My little girl was brought into heaven on this day. I see this as another sign of her love for me and recognizing my dedication I had to her. I gave her my EVERYTHING. I love her beyond words could ever express. For her to die on this special day oddly enough I find it as a “thank you”. Thank you mommy – this is YOUR day and I’m going to heaven on YOUR day. You did too much. You did enough. You loved me. So, will I be sad, of course. She died on a day that should be celebrated in its entirety which her heavenly entrance is something to celebrate but her absence will still be hard as it is every day.
Fighting for legislation
When I was helping fight for legislation from January through April I was constantly busy. My nights and weekends were spent on the phone, computer or away from my home. I was rarely “present” at family dinners and my life consisted of what I believed to be saving my daughter. More importantly our motto through this all was if we can’t save her our hope is that we save many other individuals suffering from epilepsy.
This was time I spent away from all my kids but now as I think back that meant Lydia too. 4 months away. I was in a lot of ways emotionally and mentally disconnected while my husband and caregivers picked up the slack. They supported my efforts so they chipped in where I couldn’t.
I still juggled the high level stuff – the appointments, therapies, insurance, school discussions – those were all mine to handle but my day-to-day feeding changing and other activities decreased. Those day-to-day activities – they were bonding times. They were the times you were able to snuggle, tease, get her to laugh – just be with her times. Those were few and far between for me in those 4 months.
I’m sure your wondering “wow, that’s depressing, what sign could you possibly see in that?” Well, this was one of the first things I saw actually. I believe it was disconnecting in this way before she passed to help me after she passed. While I have some regrets not being more present in her life I also feel like my loss was 6 months ago – not 2. Maybe this was God’s way to prepare for what was to come, to start letting go in January versus it hitting me in May. Honestly, I don’t know and maybe my head and heart just likes to be play games so that it doesn’t always feel so broken.
Always looking at signs
Soon after Lydia died I started looking everywhere for “signs”. I’d pick up something in a store and feel its irony and wonder “is this telling me I’ll be dying too?” I know it sounds crazy but when a death occurs so close to home you start to think some funky thoughts. I look for signs less and less now as time has gone on. I have started to just live and realize that signs will appear where I need them to. Like today, it’s a rough day and a friend Marlene randomly texted me reminding me how to focus on change –something I needed today. A card from Bonnie arrived in the mail after a crying spell telling me she is thinking of me. I don’t need to make up the signs – they come freely and that’s when I know my sweet pea knows it’s ok to live, be happy and move on but when I’m grieving, when I’m sad and all I want to do is cry she sends me signs to know she is there. Still in my heart, caring for me like I did for her the last 7 years. My own guardian angel – you can’t get any better than that.