August 11 I woke up very emotional.  I was crying before I even took one foot from underneath the sheets to put on the floor.  I recalled the date and quickly realized that it had been 90 days without my baby.  90 long days.  Days filled with laughter but also with tears. 90 days filled with being busy but moments of silence in which we thought about Lydia.  I thought about a blog post for a week and figured writing a letter to my sweet girl seemed like the appropriate way to convey how the past 90 days has been for our family.  It includes some deep conversations, things that you won’t hear us talk about – the insight into losing a child and how we are moving on as best we can.

Dear Missy Moo,

It has been awhile since I put anything down on ‘paper’ but it doesn’t mean I don’t think of you every day.  We met with some friends for dinner the other night that recently had a brother-in-law pass away.  They told us the wife said the 4-month mark is the hardest.  I would say that is true.  It is the point where all the busyness of taking care of things is over and the reality of the loss sets in.  The point where things start to slow down and you turn around to realize you REALLY are no longer here.  Death is forever, there is no 2^nd chances, no returns.  I’ll be honest, some days it doesn’t feel real, especially lately.  There are days I want to scream for someone to slap me to make sure this all really happened.  But, that’s not why I’m writing to you today…I just have some things to share.

First, saying “I miss you” doesn’t even begin to scratch the surface of how I feel.  There are mornings I would rather stay in bed and roll over, wishing the day away.  However, every morning I get up and work to put a smile on my face in remembrance of you.  I hope my image of you in heaven is an accurate one – I envision you perfect, happy, healthy and smiling – smiling all the time in fact.  You were never really sad or upset unless you were sick so I see that same little girl up with Jesus.  I also envision you walking and running and perfect in every way – no seizures and no physical or mental limitations.  You have beautiful brown hair so for some reason I see it long and flowing, maybe even curled at the ends.  Your dressed in an outfit like we said goodbye in – like the one your Nonni made – everyone always said you looked like an angel in it.

I often wonder who you’ve come across when you arrived in heaven – family I mean.  I know my Pop was one of the first to meet you.  I had a dream before you passed and he appeared to me.  He’s the best isn’t he?  He’s one of the greatest, most loving men you’ll ever meet.  I envision him young and much like he looked in pictures I saw of when he was in the service.   I honestly can’t see you sitting still –now that you’re without disabilities I see you twirling around, meeting whoever you can, sharing the life you led here and the struggles you had and how wonderful you are now.  I envision now that you are ‘whole’ you are making your presence known.  You know this vision of you – it is sometimes the only thing that can keep me from crying from missing you and wanting you here.  You’re happy and healthy – the way it should have been all along.

So much has changed since you left us.  We sold our minivan we bought for you. I moved my office into your bedroom, we are building a house and we do more now than ever before with the boys.  I actually stop myself from being preoccupied with things when one of your brothers needs me or says things like “will you read this book to me?”  I want to be present for them.  I slip up from time to time of course but if something were to happen to any of us I don’t want regrets.  Devin recently asked now that your gone if he could sign up to be part of more sports.  He’s trying out this weekend for one that we often skipped due to having so much going on with you.  I think he felt so bad asking the way he did but I commend him for all the years he NEVER once was upset we couldn’t do it because we couldn’t travel with you like the sport demanded.

Your brothers do miss you quite a bit.  Grant as you know was potty trained but then had some regression with losing you.  He also suffers from night terrors where he will whine and cry in his sleep.  We’ve tried everything to help solve them but most nights I end up sleeping with him and rubbing his back, ssshing him and telling him he is ok.  He was there when Daddy found you, outside your door that morning. I can’t imagine how Daddy’s screams made him feel and sometimes still haunt him.   He’s getting better with the bathroom – we now have to just take him versus hoping he’ll remember to go.  We can’t scold him either because he’ll just burst out in tears.

After you were first gone he was so scared to have me leave the house.  He would ask me where I was going, when I was leaving, when I was coming back, how long I’d be gone and then he would demand to stand outside to wave at me while he watched me car until it was out of sight. Luckily, that only lasted a few months and doesn’t ask as many questions or always have to watch me leave.  He does however talk about you daily and for his 4^th birthday asked for angel cupcakes like you had at your last dance.  Recently, he asked Daddy how long you’ve been gone and told him you’d been buried long enough and it was time for you to come home.  Daddy hurt so badly after that as he had never heard him talk about you so it hit his emotional trigger quite hard.

I’m worried about your oldest brother though Lyd.  I pray often for him and hope you have some pull up there with the big man.  First, you know your brother loved you to pieces, right?  I mean what brother asks to bring his special sibling to school when he is star of the week so he can share about special needs?  YOUR brother.  Remember me being so nervous about this, praying you or he wouldn’t get made fun of, or worse yet he lose friends because of his sister who was different?  But he accepted that, brought you and beamed the whole time.  The kids were wonderful, so receptive and loved being educated on special kids like you.

Devin loved you to the moon and back, that’s for sure.  In the fact, every morning on the weekends he would check to see if you were up and if you were he would bring you toys so the two of you could play.  He told Nonni soon after you passed he missed cuddling with you in the mornings.  However, one thing I breathe a sigh of relief is that he didn’t go in your room that fateful morning.  That he was NOT the one to have found you and God’s plan involved him still being downstairs.  I couldn’t imagine how he would have been had he been the one.  I thank God for that daily.  That he was left unscathed that way.

Devin did find great joy in making you laugh.  He would run to me whenever he got you to laugh just elated that HE could make YOU laugh out loud.  I know he misses that sweet pea but the one thing I’m worried about now is…he won’t talk about you.  Ever.  I’m so worried, he cared and loved you so much but yet he never utters a word.  Does he pray at night?  Is that how he is coping?  Being such a proud, loving brother I wonder how he’s making it through.  I know he told his counselor he’s worried about making us sad, thus not wanting to talk to us but we reassured him so many times we are here to listen.

The good thing is that Devin is a happy boy.  So, I’m hoping that however he is coping and adjusting to life without you that it is fruitful and healthy.  But, as you know I worry about how psychologically this could affect him down the road.  Always a mom, always a worrier, nothing has changed there.  I hope you keep an eye out for him.  I hope if he’s praying God guides him to share when he’s ready and if he never is to make sure he emotionally adjusts into a good teenager and adult even with the devastation of losing you and that morning.

Daddy is well, you know…managing.  You were the apple of his eye.  He says that no matter how bad his day was he would walk in the door and find you. He would pat your butt while saying “how’s my diaper butt, how’s my sweet pea?” and then bend down dirty from work and all and rub his whiskers on your face to make you smile. He’d kiss you and tickle you super hard but you would always grab his hand and push it on your belly for more.  He said those moments would make a bad day better in a heartbeat.  He said he misses that, especially seeing you first thing when he got home.  The first few days you were gone I watched him walk into your room and stand there for a minute or so before turning around.  Like me, he doesn’t go to your grave anymore– at first he thought it was spending time with you but eventually started to feel like I do realizing that you are in the box in the ground and not with us and it doesn’t make us feel good.

A few weeks ago I could tell Daddy was sad.  We talked about you together one Friday afternoon and then the next day we received a video in the mail from a woman who had interviewed me for Children’s Hospital.  After we all sat as a family and watched the video Daddy cried – hard, as he walked into our bedroom to dry his eyes.  Later that weekend as we were driving down the road he told me what he wants for Christmas – he would like an album of pictures of you – not all hospital ones, in fact, less of those and more of you enjoying life.  I gave him one from your funeral to look at until I can get one made.  He’ll say every so often “I was looking at the picture of …” and call out a time or whoever was in the picture so I know he’s looking at the album when I’m not around.  He also told me for Christmas he would like a DVD montage of all the videos I took of you throughout your life.  There are so many but I’m determined to make this happen for him, for us.

Me, well, yeah.  I was your mom.  I’ve got to be honest that there were weeks at a time I would be sad and then weeks I would be OK.  Now it just seems like the start of each week is hard.  I wake up from a busy weekend and realize the reality of it all, once again.  Each week our lives are filled with things we’ve done before or even firsts and I realize you aren’t a part of them anymore.  School will start soon and as much as I hated dragging in the box of diapers, wipes and all your supplies, I will have nothing to do with you and school this year.  I do not have IEP’s to scour over and no goals review from our summer for the upcoming year.  There won’t be a picture of all 3 of you standing in the driveway on that first day.  You were supposed to start the new special needs school this year.  I was looking forward to your first day there – me beaming with pride as we embarked upon this new fabulous educational journey.  All of this leaves an immense ache.  Like there is a hole I can’t fill but only patch with activities that can only put a temporary smile on my face.  I often wonder if when I’m in pain if people can read it on my face, if they see a dull sparkle in my eye or a sad demeanor.  I try so much to hide it, to suppress it so it isn’t part of who I will become.

One thing you did for me was keep my mind busy and running 24/7 when you were with us.  While I was showering, driving, working or just about any activity,  I would think of ways to challenge you, recipes to make you, and if you were showing signs of illness. You kept me so busy over the last 7 years that my life and brain was filled with constant motion even when I was sitting.  Sometimes my anxiety of the list of things to do was so high that now slowing down to almost nothing has been extremely difficult.  The other day as I was coming back from our land for our new house my mind was swirling with a ton of things to accomplish instantly and my thoughts went to you.  The way my mind was going in all different directions I was reminded of my 7 years with you and how for so long this was my way of life.  Unbelievably, I miss that and you.

It is hard not to find reminders of you throughout my day.   There are times when a certain period of your life pops in my head and I can’t shake it. This weekend I was in church and the woman who sang at your funeral was singing.  There was a baptism and during the Eucharist she started to sing about a child.  My thoughts flashed back to your funeral and how I cried my hardest following your casket into the church.  How I remembered so many times driving behind an ambulance and how this would be the last time I would follow you in any way, shape or form.  I remember getting up to the front of the church with Nonni and Daddy as we had to unfold the cloth over your casket.  I stood there wanting to touch you. I wanted to open that casket so badly to give you one last kiss, one last goodbye but I stood there, motionless.  Then, Nonni touched the white cloth we just laid on you and with hesitation and hands shaking I did the same. I could breathe again with touching some part of you, even if it was a cold, hard casket.

Last week Friday after a long, sleepless night with your brother I came back upstairs to try to get a few minutes of sleep before getting up for the workday.  As I laid my head down on the pillow I heard the distinct beeps of your pulse ox machine we used to monitor your seizures.  It was the exact tone and sound of your machine. It was quick, just 3 beeps sounded in my ear and they came in the manner in which we use to hear the machine.  As I was laying on my side a single tear started coming out of my eye.  I shared with Tom.  He was silent.  I got up and felt a push to help work on the Federal CBD bill and did some work surrounding that wondering if those beeps, that noise, is what I needed to gain some strength to take steps forward that morning.

Over the weekend I had thought about you during our various activities and how much you were missing, how much I was missing you being with us.  I walked out of a restaurant and one of the songs I hand picked that played at your funeral mass, “You Raise Me Up” was being sung at a nearby restaurant outside.  I stood there listening, taking it all in hoping that the irony of it being played as I walked out was you telling me you REALLY were with me.  Immediately after the song fireworks started across the street and I watched as all the pink ones sparkled so high in the sky and your little brother yelling “Baby’s firework!”

A few weeks ago, Daddy and I had a conversation about how we have this family of 5 with only 4 people.  How quiet it is for us now and how glad we are we had Grant beyond all the criticism of adding a 3 child with all your needs.  We talked about how we can just go when we need to and pack more in a day than ever before.  We had a first in admitting something to each other that you could tell neither of us wanted to say out loud.  We both said life without disabilities makes life easier now.  We both had so much guilt sharing it but we said that although our life is easier physically it is tormented emotionally with your absence in our lives.  Daddy said “I never asked for this, I never wanted it but it is what it is now so we do keep moving forward with our new normal.”   But, we both said we would give it all up to have you and disabilities back in our lives.  All of it.

You had so much impact on my life, and so many others  in fact.  Kelly’s daughter is going into the special needs field…all because of YOU.  I’m so proud to hear that.  Your only known friend Anna still visits your grave regularly.  She sleeps with yours, Grants and Devin’s picture.   Your Nonni tells me she has her sad days too but sees the boys more now than ever before – I think that makes her smile.  Linda visits your grave and texts me to ask me if it’s ok to clean up around it.   Bonnie still sends emails and cards to let me know she’s thinking of us and you.  Nurse Mary texts me and sends cards too – I know she misses you.   Your KS families think of you all too often and let me know.  I see you in so many of them.  Shelley sends me cards that land ironically in my mailbox when the days seem most lonely.  My best girlfriends are there to listen when I go from laughing to crying and they cry with me.  I could go on with who is present and keeps mommy going when some days I want to fall apart.  YOU, my dear, brought most of those people in our lives or made the relationships stronger.  Those amazing people who still stand by me when the pain and heartache of your loss seem unbearable.

I miss you.  With all my heart and soul.  I thank you for all you brought to my life and I hope with all my being you are not done with me.  I hope you give me strength to continue to fight and advocate for you and others like you in ways never thought imaginable.  I hope you continue to move mountains.  I think I am probably the proudest mommy around for who you became, who I became and how much you touched the lives of those around you as well as complete strangers.  I know this won’t be the last time I write you, it won’t be the last time I share how we are doing and how life is moving forward without you.  But for now, as your bouncing around up in heaven, sharing about the life you had here with us, keep one eye down on all of us.  The sadness of your absence is still so overwhelming and seems heavier than when you first left.  We need all the strength we can get.

‘Til next time sweet pea…all my love.