Lily’s coming home! We were so happy and relieved, yet nervous and scared. It was difficult and stressful travelling to the Corner Brook hospital. We tried our best to go daily or every second day, but it was hard. Travelling with two small boys is a bit of a challenge on a normal day….packing the snacks, gravol and activities to keep them occupied….but daily, it was a struggle. Matthew was two and didn’t travel well. He would get car sick and cranky on every trip. Todd would have his moments too. We would spend our days visiting Lily making memories doing things like feeding or bathing her and reading or singing to her. But after a while, the boys would get restless and who could blame them! Their daily routine was totally gone and they were adjusting to this new normal. So bringing Lily home was a big relief. The boys could get back to their routine at home which now would include Lily and our life could begin its new normal.

I had so many fears with Lily coming home. I was scared she would die at home and it was a good possibility she would. I mean, we were bringing her home to die! I had no control on when her time with us would be up. What if she died around the boys? How could I protect them from that? What if she aspirated while I was feeding her? I know these are normal fears to have when you bring your dying baby home so I could do nothing only face them.

The first couple weeks of Lily being home was an adjustment for all of us. The boys were so excited to have their baby sister home. To prepare them, we explained that Lily was very fragile and special. We told them that she would only be with us for a short time so we would spend as much time with her as possible making happy memories. Trying to explain death and sickness to a two and four year old was a challenge. To them Lily was a perfect healthy baby. It was so heartwarming to see them embrace Lily with all her imperfections……it was unconditional love in its purest form. Sure Todd and Matthew noticed Lily was different. They asked about her pointy ears and we told them they were just like their ears even if they looked different….they thought she had elf ears and that’s what made her special. If it were only that simple.

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We tried to include the boys and let them help with Lily as much as possible. When the boys would take baths, I would take Lily and dip her toes in the bubbles with the boys. She would smile and the boys loved it! They helped pick out her clothes and get her milk ready like many other brothers and sisters do. When I would lay her on the floor for belly time, Matthew would lay down next to her and hold her fingers. Lily loved them. Sometimes Lily looked like she was in her own little world and never focused on anyone….but when Todd and Matthew entered the room….she would follow them around. If Todd kissed her (and he was rough), she would smile. I know she loved her brothers. They still talk today about those memories and as heartbreaking as it is, I’m glad they have those memories. I remember the first time she smiled at me. It was New Years Eve and I remember talking to my mom on the phone and I looked down at her. She had this huge smile on her face. It was the best way to end and start the year. We have a lot of happy times to remember. Even on the hardest days, Lily found ways to make us smile.

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It wasn’t always easy though. In fact, it wasn’t easy at all. Feeding Lily was a task. She only drank small amounts and it would take her an hour to suck it with long breaks in between. Usually shortly after she drank, she’d throw it all up. Then there was her sleep or lack of. I think that was the hardest point for me. Lily did not sleep. This is a common symptom for trisomy babies. Sure she would have catnaps in my arms but if we laid her down, she was up and fussy. The only spot we could get her settled was down in our rec room with the hum from our pellet woodstove…..even then it was only naps for an hour or two. I remember I would be so tired sitting up on the couch rubbing Lily’s back and Shane would get home from night shift and ask me if I slept yet. No, not yet or not much I would often reply. I don’t know how I found the energy to take care of the boys with little to no sleep. Lily also had many apneas and for long periods. There were so many times I would panic when she turned purple from not breathing. I’d think, ok this is it, she’s about to pass and then she’d take a deep breathe and then be fine. It was such an emotional roller coaster.

Lily continued to defy the odds each month. The doctors would be puzzled at each checkup. When we took her to see the cardiologist at her 6 month checkup, the hole in her heart had healed on its own. We were amazed. She still struggled to breathe and eat, yet she was thriving in other areas. It was so hard to not be hopeful. Maybe she’d be a miracle and wouldn’t die after all? But the apneas were increasing and lasting longer and feeding her was getting more and more difficult. Oh and the lack of sleep and fussiness was taking its toll on me. I was trying to be strong and keep going for the boys sakes but I was struggling. I remember falling down the stairs one day. Thank god I never had Lily in my arms. My entire butt was bruised black. I was like a zombie. I was so tired. I couldn’t do it anymore. I finally broke.

I remember Lily had just thrown up another bottle I had worked so hard to get her to drink and she was extremely fussy. The boys were downstairs playing so I laid her down in the bassinet, went to the patio door, and fell to my knees. “Please God, Help me!” I remember saying while sobbing and staring out at the sky. ” I can’t do it anymore. Give me strength. Please give me a sign that you’re there. Show me I’m not alone.” I sobbed harder. “Please!!”

I never got a sign that day. I never felt more alone and I decided then and there that my relationship with God was done. I would get through this on my own. Yes, I had family members that tried to help, but Lily was my responsibility. I remember crying on the phone to my Mom shortly after telling her about Lily and her suffering and how I don’t know how to do it anymore. That was the day that I had my ah-ha moment. When we decided to put Lily in palliative care, there wouldn’t be any extreme measures, or IVs,…. nothing extra. She was home to die. My mom made me realize that day that I was Lily’s IV, I was keeping her alive. So I stopped. I decided that day that when Lily stopped sucking her bottle even if it was still full, I would no longer keep trying. I think that was the hardest decision I have ever made, knowing that in doing so, Lily would die. But I couldn’t continue to be selfish, I wasn’t being fair to Lily. Her gasps for breathes and struggles to feed and sleep were because she wasn’t supposed to be alive. I wasn’t giving her any quality of life by forcing her to be alive.

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Lily lived about a month after I stopped. It was unbearable to watch. She was hungry but couldn’t suck. She was trying to breathe but struggled with every breathe and her apneas got more intense and she grew weaker. We still included Lily in everything. We took her camping with us in our travel trailer, I took her for walks in my snuggly and brought her to visit friends a couple times. We had to continue living as a family even though it was heartbreaking. Then one day we noticed Lily had a fever and her oxygen levels were dropping. We brought her to the ER where the doctor said she had an infection. He prescribed her antibiotics and sent her home. That night was the first time Lily slept through the night and it was also her last night at home. I remember checking on her in amazement that morning. She was finally sleeping! A miracle! I went back again an hour later and she was still asleep. Uh oh. I knew something wasn’t right. Shane called home from work to check in and I told him Lily was still asleep. Not a good sign he said. My heart sank. I knew it too but he confirmed my fear. I checked on her again a few minutes later and she was awake but very weak and moaning. I picked her up and she was limp in my arms. Oh no, I thought. I brought her upstairs caressing her and kissing her. I remember telling her it was okay to let go, to go be with the angels. Mommy, Daddy and her brothers loved her forever and we knew she was tired….just wait for Daddy to get home I whispered to her. I called Shane and told him to come home. My heart told me it was time. I called a family member to come stay with the boys while we brought Lily to the hospital. I told the boys that Lily was going to the hospital and probably wouldn’t be coming home. I remember Todd asking if she was going to heaven. I think so, I replied.

We arrived at the hospital and the doctor saw her right away. He checked Lily over and then we were given a private room. It was time. I remember the nurse coming back after seeing Lily arrive, wiping her tears and apologizing for crying. It must of been hard for the staff to see. Shane and I were numb I think. I don’t think it really sank in what was happening. We were only in the room a few minutes when we watched our beautiful baby girl take her final breathes. It was so peaceful. Shane and I cried together. Lily’s journey was over, she finally gained her angel wings.

During Lily’s 8 and half months with us, I worked on a poem for her. I finished it two weeks before she died and I read it at her funeral. I posted it below. It describes our journey with Lily. As I sit here overwhelmed with sadness as I share Lily’s journey, I know we did right. Lily is free from pain and suffering. As hard as it is now, five years later with all our struggles, I know we did right. We gave our baby girl love and family and in turn as short as her life was, she taught and gave us, unconditional love.

Perfect Lily

Against all odds you were given to us

A gift so special, only God did trust

Time and future unknown

Yet each moment with you, our hearts have grown

Imperfection inside gives perfection in heart

For the love of a child grows from the start

Brothers so proud and in awe of you

Your imperfections unseen by them, and their love so true

Our special Perfect Lily you’ll always be

Our one and only daughter & sister for eternity

A gift so special and in time we’ll see

Why you were given to us to only leave

Lily, if only your problems were mild

We wouldn’t have to say goodbye to our child

Your life from the start seemed so unfair

To watch you suffer, our hearts could not bear

To watch Matthew give you a kiss

Makes us wonder if he will ever miss

His special sister he loves so much

But thankful for his life that you did touch

Perfect Lily our lesson from you is unconditional love

Not given by us or God above

But from the innocence of Todd, your brother

The purest genuine love, like no other

Your eyes glowed when you looked up at him

With the purest love, so genuine

That beautiful smile would make every heart melt

But in the bottom of my soul is where I felt

That deep tender love for your child

So unfair your short time, it makes my blood wild

The overwhelming guilt I feel like no other

For being frustrated and tired, not like your brother

Your life hasn’t been easy, you’ve been so tough

Your tiny body has had enough

To watch you suffer was hard to bear

But now I know why, you had so much love to share

So Perfect Lily with your angel wings may you soar

To be with our lost loved ones, meeting you at heaven’s door

A beautiful angel flying so high

You’ve left footprints on our hearts until we die

To say you won’t be missed would be untrue

For now we feel a greater love we never knew

Our one and only daughter and sister you’ll always be

Perfect Lily for all Eternity

Written by: Mommy

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