It has been awhile since I wrote you sweet pea.  But you know it is not for lack of words.  I talk to you all the time – ask you to give me a sign, show me your there, ask for help and strength. Last week in church as I was praying I asked for strength as I often do.  As I was bowing my head, I listened to the soloist and I recognized her soft but yet beautiful voice. I looked up only to find the woman singing was the one that sang at your funeral. I never see her at church or I don’t attend the services she sings at, but her voice is distinctive and gorgeous and so I smiled.  You made me smile.  I knew you were there with me and the boys.

It is true what they say – the loss seems greater as time has lapsed. Maybe it is because the loss becomes so real, even more real than when you first left us. A few weeks ago I know you saw me in mass sobbing.  I couldn’t control the tears that day.  The mass was based around those that have passed on. In fact the homily was about how many say DEAD when referring to their loved ones passing on but there is also a culture that says “passed on”.  The priest commented how DEAD is so final but yet passing on is moving on to that next perfect place – heaven.  I cried harder…your DEAD to me.  Your leaving us IS so final. As much as my heart and brain know your in heaven and have “passed on” you are gone from MY arms, OUR home, and OUR life. Your death IS so final.

As an adult I still can’t comprehend your passing.  Every single solitary time I turn my car into the cemetery  (which is more often than when you first left us) I want to scream “where the hell is my car going? I am NOT the mom that is driving to see her child’s grave am I?  How is this real?  Did this really happen? What the hell happened to our life?”  That’s all in the thoughts I have as my car makes it down that 30 second drive through the cemetery to where you are “resting.”  Then, I try so hard not to think about your body in the ground.  How you look now.  I try but I get so upset.  Your my baby girl – I was supposed to take care of you and in some ways I failed you. I failed keeping you alive.  So you see…I, myself still struggle.

Even as we struggle I know that fighting and educating for what is right is what you and I did together.  We were an amazing team, you and I.  You never said a word but you drove me to do and be more.  As you know we flew to Colorado last month to help advocate for the CBD oil.  We also saw a grow and stood in the middle of Charlotte’s web being grown. I broke down in Daddy’s arms there as I stood in the midst wondering if it would have even helped you.  I cried for all the parents not wanting to be in our shoes and desperately running out of options.  I got mad when I met other parents that moved there and were separated from their families.  Honestly, I felt at home through the entire trip.  Like you were telling me what I did, what I continue to do is what I NEED to do.

With all that said, it was also an amazing, healing trip…for all of us.  Devin has been asking since we first started the fight to meet the first girl to receive the oil – Charlotte (aka Charlie).  It worked out where we could take both of your brothers.  I know looking down you were proud and happy.  You saw his face light up when he played with Charlie.  He was so sweet with her and he loved helping her, holding her hand and giving her chips to eat.  He spoke so soft and sweetly to her – it was amazing. He even picked her up and spun her in circles like you loved. She smiled…big.

For brief moments I saw him in a place I haven’t seen him in for the months you’ve been gone.  People commented how he just looked to be in his element with her.  It was truly magnificent and I felt so blessed to have seen him have those moments, those smiles.  But that ride back to the airport a quiet, subdued boy appeared.  His smiles disappeared and as much as I probed asking him what was wrong I knew.  He didn’t speak except to say “I just don’t want to leave.”  Those words were enough for me.  And there was nothing I could do.  His quiet pain he keeps inside returned.

During our time there we met another couple who lost their little girl too. I’m sure you’ve already met Charlee in heaven. I can only imagine the two of you running around watching over us.  I digress – Charlee’s parents were married the exact same day as us and Charlee as you know suffered from not only a fatal disease that took her but seizures too.  What a connection we had with them.  We spent all day with them and once strangers they became fast friends. Unfortunately, we shared this common bond that no parents should ever share.  We compared stories of how you both passed, what your headstones will look like and how the days are now that you are gone.

As you know Daddy has been trying to be so strong.  He told me a few months after you passed that he knows you’d want him to be happy and although he’ll miss you forever he needs to move forward.  When we met with Charlee’s parents however I saw how much pain he truly still has and how much he misses you.  At lunch, we were each sharing the last days we had with you.  Daddy started to share and right there in the middle of a restaurant he starts sobbing.  He’s sharing that day and how he didn’t know you would go but recalls that when he laid you in bed you gave him a look and he said the look was one of emptiness and sadness. He said he thought maybe you needed to rest but looking back now your eyes told him so much and he remembers that look…he remembers you that way.  Almost pleading for help through your eyes.

I cry when I see Daddy cry.  I actually have to look away because I feel the pain so intensely and my body is filled with this ache that spreads all over.  He has always been our rock.  I rarely cried when you went through all you did with your illnesses but when I did he knew that I was at the end of my rope. He would step in knowing I needed to take a break.  He would take over at the hospital and do what was needed so I could get back on my feet to do good by you.  So to see him…to see him so sad…that hurts.  There is no other person I think that has touched him like you and I’m sure there never will be.  The love he has for you….beyond compare.

Your little brother…ahhh….where do I start?  He talks about you all the time. All. the. time. The other day as he was sitting with me and a friend he told us of how he is building a house (his pretend house).  He told us the crane was there and when we asked him why a crane he said “well, it is there to place a sign for baby – to let everyone know she is there.”  And then just like that he got up and walked away to play elsewhere leaving us with all those feelings slapping our faces and the large lump in my throat to swallow back.

His innocence at this young age allows him to share whatever thoughts he has at any time.  I love it and most days I need to listen intently and without emotion offer feedback and encourage openly talking about his feelings.  We went to the mass of remembrance last week and during he saw me crying. He asked Daddy why and his response was “mommy misses baby.”  The next day as we were listening to music playing Grant looked over and said “mommy, you know what I miss?”  I of course asked and his response was “I miss baby mommy…I REALLY miss baby.”  I do too honey, I do too.  After that he says “mommy, we forgot to visit baby today, you said we would go and we didn’t, we need to see her later.”  And later we visited you with your new headstone.

A few days later, I was driving and I wiped my nose and Grant asked from the backseat “mommy, are you crying?”  I told him no that I was wiping my nose and asked him why he asked and he said “I was just curious, I know you miss baby and sometimes cry.”  I tried to explain that sometimes it is good to cry, sometimes good to get it out.  But, how much can a 4 year old comprehend and understand?  I don’t cry often or openly in front of the boys about you but yet they see me one or two times and well, its ingrained in their brain as a painful thing.

As most close to me know I hate the words “children are resilient.”  You know why sweet pea?  Because I know from my experience as a child of a divorced parent and how that affected me.  I watch your brothers and how they are handling all of this – selling a house, buying a house, losing you, not buying a house, building and so on.  Your younger brother clearly hasn’t bounced back since he was playing outside your room and Daddy found you that morning.  He heard his father crying in despair knowing you were gone. Your little brother hasn’t stopped having accidents in his pants since you left us. He was fully trained for many months and you left and there he is struggling in that area.  Then, after he saw me cry in church another set of accidents started happening.  It is maddening but yet I can’t be mad at him – I’ve been reading up on this – it is mostly emotional based so obviously he isn’t so resilient after all.

And what about us?  I saw a funeral procession a week ago and as I pulled over on the side of the road to acknowledge them I started to cry.  I sat there wondering who was sitting in that car – was it a mom like me burying their child?  I knew whoever it was how they were feeling driving behind their loved one headed to wherever they were going to say their goodbyes. I remember that day like it was yesterday still wanting to run from the car because I was following MY daughter who was dead.  How could this be?

I know you see me when people say “but children are resilient” and how I respond.  I know you probably chuckle as the hair stands up on the back of neck and my body tenses like an attack tiger.  You know me – people don’t know so I try to politely share that if the adult mind struggles to understand this immense loss in our lives how do we expect young children who can’t quite rationalize feelings, and thoughts like adults to understand the intense emotions surrounding the loss of their sister.  How can they bounce back from watching their Daddy scream that fateful morning for the ambulance to come quick?  How can they process seeing us cry from time to time about your loss?  I honestly can’t expect your brothers to “get it” if I can’t.  So much for resiliency.

While I share all this with you and total resiliency is still in question, It isn’t all bad sweet pea.  You see us in moments of laughter.  In the times we set the pain aside and try to be ourselves. Today, Devin’s principal told me that Devin was explaining your beautiful headstone to her – so proud of your resting spot she said.  Daddy and I don’t walk around with our heads low or in sadness.  We understand that others and their lives have gone on and so must we…while still holding you in the corner of our heart.  We talk about you with our heads held high and most times with a smile because of your greatness we feel you held here on earth. We admire how many lives you changed and hearts you touched and still do. How you continue to work through our family to help  and educate others about what really IS important in life.  You, my dear daughter still give us amazing gifts.

I miss you and unbelievably while I teared up writing this I didn’t sob.  You are however truly missed.  I found a video of you and I the other day and I loved watching as I told you I loved you repeatedly and you smiled grabbing my hand for more as I reached for your belly.  What I would give to have you back just one more moment to tell you how much I miss you and truly love you.  To hold your hand and your little feet, to brush your soft hair and put it up in the pink bows that still adorn your room.  You are one of the greats and there isn’t a day we don’t recall your beautiful smile.  Keep working your magic from up there…and keep on keeping us strong.  Until next time sweet baby girl. You are forever our sunshine.

xxoo – forever your mommy.