Saying our last goodbye.

Sweet pea,

It is becoming increasingly hard to face this week.  Of course it shouldn’t be any different than any other day. Each day I wake up I am reminded you are gone –  but this week –  it is constant – this week it will be hard not to relive that moment and the nightmare that started. That day that I received the call with Sarah crying hysterically on the phone.  The moment your Daddy came on the phone through tears and complete despair like I’ve never heard before saying “she’s gone, she’s gone. There was nothing they could do.”  That moment I collapsed in my own mother’s arms on the bathroom floor.  The day we drove 4 hours home with some of the only words I uttered to be “where will I bury her?”  The day I thought about your brothers and how I would comfort them.  The day I pulled in our driveway to see all the solemn faces not knowing how to greet me. The day I walked into your room with you in it for the last time and kissed your cold forehead.  The day I sang to you one last time in your bed “You are my Sunshine” all while my tears fell on your blanket that covered your lifeless body.  The day everyone gathered around me not for celebration but to hug us, be with us and hold us up.

A year.  So unreal but yet so very real. Feels like yesterday but yet so long ago I last held your tiny little hands or put your braces and shoes on your tiny feet.  The last time I picked you up out of your carseat and put you in your wheelchair.   The last time I kissed you and told you I love you.  I see videos of you and feel such a realness of you being here but turn around only to see the new normal of our life – no baby toys that light up and make noise, no special needs apparatus we used to help you function day-to-day.  Nothing.  And of course, no you.

Life now comes with a whole new set of worries.  Every day I pray your Daddy and I make it through this.  Not that we struggle but I’ve read about the divorce rate after a child passes so now it is a worry.  I pray for the health of your brothers, not that they are unhealthy but again, just another worry.  I lost you and now I know that child loss is real and I couldn’t bear to bury another child.  I just couldn’t.  I pray for my mom…she’s aging and while still vibrant and active I couldn’t imagine losing someone that was just as important as you in my life. As you can see…lots of worries because I faced something I never wish on anyone…burying you, my child.

Most that see me out and about tell me how strong I am, with such grace I am moving forward with all we battled for 7 years and now without you here. People close to me – well,  they know the ups and downs and battle through it with me.  Many who stood in that room that day or those that helped hold me up in the tough immediate days that followed. They had death slap them in the face so hard and they continue to walk through this journey with me.  Those people.

I still talk about you…alot.  More even lately. Those that struggle with me mentioning you usually shift their gait, stop looking at me, nod their head and give off an aura of uneasiness.  I get it and in rare occasions I stop talking about you but mostly I keep going.  I am proud of you…in life and after death.  You were my child.  Their discomfort with death is their problem, not mine.

Your death has changed me in may ways.  Some for the better, some not.  Changed how I react or feel things around me. There are people who didn’t understand what mutual understanding in a relationship was and decided to walk away.  There was even hurt trying to be distilled upon me and while it hit me briefly, the only thing I could think of was you. No one or nothing could hurt me more than I have losing you.  No amount of words or actions done by others could cause me more pain than I already have.  You see, the pain threshold hit its all time high the day I received that call you were gone. The day I had to pick out a casket and funeral music.  The day they closed the casket and put you in the ground. There is NO greater hurt than that.  No one or nothing could even scratch the surface to reach the amount of hurt felt.

I struggle with many things yet but I’m getting better.  At first when you died I couldn’t hold a baby.  Even at 7 years old YOU were my baby.   I changed your diapers, fed you, changed you and dressed you.  When I would see a new baby right after you were gone I would veer the other way and pretend they didn’t enter the room.  I wouldn’t reach for them and would be fine if they cried upon seeing me.  It justified for me I wasn’t ready to hold one. However, with time I’m getting better.  But somehow after I hold a baby, play or talk with one my heart aches just a little bit.  I feel this emptiness in my gut that I try not to focus on so it quickly disappears.

I now find happiness in the little things around me. The hugs your little brother gives me when he snuggles up on the couch, the funny things Devin says or the jokes your Daddy has.  However I truly never get excited about much anymore.  When I feel like I do I’m ultimately reminded of you not being here and my body once again feels the numbness to make sure I’m not riddled with disappointment if something fails or doesn’t happen.  It is almost like you having autism and showing little to no affect toward us.   You “not caring” saved me so that I could do what I did for you even if it broke my heart.  Your passing has now made me numb toward everything else.

However, with all this said, I find I have realized what is real and true.  I have realized that so many things in life just aren’t that important.  I tried to convey this to your brother the other day.  As frustrated as we both were with how he was doing in baseball I thought long and hard about you. We have our best talks as he’s ready to go to bed and after I had a deep “come to Jesus” moment I said this to him

“you may never be the best at baseball. You may never hit a homerun.  You may work and work and feel like you never measure up to others that seem to excel…but if there is one thing I want you to remember it is this:  I don’t care about what you ultimately become in this sport.  I hear how you are always smiling, how nice you are, how polite you are, and how loving you are with children, siblings and those with special needs.  You have a huge heart for others in need.  THAT IS YOU and ultimately that is who I want you to continue to be.  So, if you never be who you envisioned yourself to be in baseball, that’s ok, continue to be YOU because that is more important than a bat and a ball.”

As we sat in the darkness of his room I asked if he understood.  He said “I do,  thanks Mom.”  But he shouldn’t thank me – he should be thanking you.  I owe this outlook to you, my dear daughter.  Since having you, walking down the special needs path and since your departure I now know what is important in life.  I wish many others had this perspective but without the pain.

This week I will be in essence retracing my steps from last year by heading up with Nonni for our annual mom/daughter trip.  I have chosen to change it up a bit starting with the day we will leave and come back, restaurants we will eat at among other things.  I will see the 10 moms of Down syndrome children who I met last year who helped us pack up the car to get back to you as fast as we could.  I hope to hug and thank them for what they did last year.  I think one of them lost a child and maybe we’ll connect on that level on this angelversary weekend, but maybe we won’t.  I’m not sure what I’m ready for. Then to face Mother’s Day.  Mother’s Day, an in-your-face holiday,  reminding me of not having all 3 of my children – especially because you left me on this holiday.  Just like everything else it will no longer be the same.   This holiday will never be the same.

As your departure day approaches I’ll remember you – just like I do every day. I still remember the touch of your skin. I can close my eyes and feel your legs as I would often massage them while we were spending time together.   I will recall how I would tell you in a sing songy voice “I…..LOVE…..YOOOOUUUU!”  I will recall your smile afterward.  I will remember how lovingly you looked at your Daddy and enjoyed his daily hugs and his beard rubbing on your skin.  I will remember how you wrapped your arms around his neck and I felt all the love come gushing through that one, single moment.   I can see your tiny fingers that would intertwine with mine and what a connection I felt at that moment.   While some aspects of you have stayed and some gone I haven’t lost what you’ve taught me.  Lessons I would never learn from a book or anyone else but you.  Lessons I will take with me for the rest of my life and hopefully share with your brothers.

While I move forward it is hard to move on without you.  I continue to feel you around me.  When my eyes and heart are open I see your signs.  Without words you “speak” to me and it often makes me stop while I feel your presence with every piece of my heart and soul.

I miss you beyond words.  I always will.  Forever and always I will be your mommy. I’m so proud God chose me to take on this important job and forever grateful for the 7 years I was able to hug you, comfort you, laugh with you, fight for you and cry for you.  Forever and always I will speak your name and feel the pride I did just like when you accomplished the unthinkable.  My sweet girl, you are my sunshine….forever and always.