Happy Birthday Big Brother.

Finleigh knew this was a day for her brother from the moment she woke up this morning. She has a musical seahorse just like Lincoln’s (he loved it so much he was buried with it) that she sleeps with every night. It stays in her bed during the day, but today she wanted to play the music and carry it around all morning which she has never done before.

There are a few high shelves in Finleigh’s room that have some of Lincoln’s belongings as well as the angel bear that Riley gave me to hold right after Lincoln passed. I carried it all that day and slept with it for awhile. When Finleigh got up from her nap she specifically pointed to it, said “bear?” and wanted Daddy to get it down. We’ve not let her play with that bear because we don’t want anything to happen to it and the shelf is high enough she doesn’t really pay attention to what’s up there. She was adamant to have that bear and proceeded to hug it, carry it around, feed it and have it go potty.

She wanted to bring it with us when we headed to the cemetery and we just couldn’t say no so off we went. Finleigh was so sweet helping decorate for her brother’s birthday placing flowers and setting up the pin wheel.

She has a special connection with her brother ❤️

We finished off the night with a beautiful lantern for our birthday boy.

 

Our day is finally at an end, 6 birthdays celebrated.

I’m so jealous of Grandpa Freddie who made it just in time for your heavenly party baby. I know he gave you all the updates on your little sister and how much we all love and miss you. I know he was so excited to see you. Mommy, Daddy and Sissy can’t wait to celebrate with you in person for the first time someday Bubby! We love you forever!

💚HAPPY 6th BIRTHDAY LINCOLN 💚

4 Years Without You

Yet I will praise You
Yet I will sing of Your name
Here in the shadows
I’ll light up an offering of praise
What was true in the light
Is still true in the dark
You’re good and You’re kind
And You care for this heart
Lord I believe
That You weep with me

-Rend Collective

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Lincoln at Riley Children’s Hospital February 2014

Today we took Finleigh to Lincoln’s grave for the first time. It was chilly and wet so we didn’t get out of the car, but we just sat there for a minute. We told her we came to visit her awesome big brother, and how he is in heaven. We want to make sure she grows up knowing all about our amazing Lincoln and his story. And why she also is so very special.

IMG_4683Finleigh wearing her “My Big Brother is my Super Hero” onesie ❤ 

Four years ago today was the worst day of our entire lives. I held my son as he left my arms, and left this world forever. Mommies and Daddies aren’t supposed to have to say goodbye to their babies. To bury them in the ground.

I’ve said it a million times, and it’s still true today; there are no words to describe the feelings in your mind, soul, and body when your child dies. That’s why we loss parents search each other out. To just be together. We don’t have to try to explain, or come up with what to say. We just know.

I am so thankful to have a heavenly father who understands the loss of a son. I don’t have to give reasons for why I can’t stop crying, or am depressed, or angry, or can’t stop  the “what ifs” from coming… what my life would be like if I never had to say goodbye. In Him I can just be. I can rest in his loving embrace, knowing he has felt my pain.

Someday I will get to look upon that wonderful face that I saw for the first time 4 1/2 years ago. That face that made me a mom. That face that smiled up at me when he woke up in the middle of the night. That face that after all the trauma he had been through,  all the doctors saying he would never wake up, would never again know who I was, looked at me with those gorgeous blue eyes with recognition. My little hero. Oh, how my heart longs for him.

Today we are thankful for the privilege of being Lincoln Robert Huff’s parents. The responsibility of sharing his story, and making a positive impact on this world in his honor. We love you forever little boy.

Daddy, Mommy, and Sissy can’t wait to see you. ❤

770 Huff, Stephanie NB

Lincoln Robert 9/16/2013 – 2/21/2014

Lincoln’s Hope Month

Wow, it has been a whirlwind lately! We just wanted to give an update about our Lincoln’s Hope activities for this year.

September is Mitochondrial Disease Awareness Month! It has always amazed me that Lincoln’s birthday is during Mito Month, and his green color (picked out for him before he was even born) is also official color of mito disease.

This year the Lincoln’s Hope Team are walking in the Energy for Life Walkathon! September 9th we are walking to bring awareness to mitochondrial disease at Hummel Park in Plainfield, IN. You can visit our team page here if you would like to register to walk or make a donation:  Team Lincoln’s Hope

This year we have decided to take a year off from the golf scramble. Between testing for the baby, finishing up my schooling, and Jeremy’s involvement in Hoosier Shakes, we decided that planning an event of that magnitude would cause a lot of stress (in addition to what we were already experiencing).  Thank you to everyone who has asked about the scramble, it means so much to us!

Please keep us in your prayers, as Lincoln would be 4 years old this month on the 16th.

When you can’t be with the one you love

 

I thought I knew how much I loved Lincoln while he was here. I would’ve done anything for my boy. At Riley all I could think when I saw that sweet little baby in that hospital bed, I would’ve given anything to trade places with him. I absolutely would have died for him so that he could live.

What I didn’t understand at that time was that while he was here, at least I could still show him affection; I could still hold his hand, and kiss his face. I could lay my head down beside his on the little hospital bed because I knew our connection was so much more deeper than him needing to be awake to know I was there; our souls were connected because he was my baby. I knew that if I was close to him he  would know his mommy was there.

I still have so much love for Lincoln in my heart, but there is no release of giving him the love daily. Instead it builds up, builds up and builds up until  it feels like my heart is going to burst. That is part of what makes the pain and grief so incredibly hard. Loss mommies have to find other ways to show their babies love once they’re not there for you to physically give it to them. You have to find a release.

This is why I write. This is why we have our charity Lincoln’s Hope in his memory. This is why we have golf scrambles and walks and sell T-shirts. This is why we do things like visit his grave and set off lanterns and balloons and light candles. Anything we can possibly do to get some relief from the built up love we have in our hearts.

This is also one of the ways I have found some healing. The love that pours out of a grieving parent’s heart is powerful enough to change the world. That is the legacy my son has left behind. A legacy of love. God is using the love that we have for our son to make a difference in the world. Through our love for Lincoln we are able to show others the love that God has for that them.

So while this isn’t the life I would have ever in 1 million years have chosen I am so proud of my son and what he was able to accomplish during his short life. I don’t know how I could be a prouder mom of my first born. He has forever changed my heart, and this world, for the better.

 

When Joy doesn’t mean “Happy”

“Anyone who intends to come with me has to let me lead. You’re not in the driver’s seat; I am. Don’t run from suffering; embrace it. Follow me and I will show you how.”
Matt 16:24
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It’s been a rough week in the Huff household to say the least… we finally did something we’ve been dreading, but knew needed to be done. We removed Lincoln’s pack n’ play and swing from the living room. It was hard, and we both cried while we did it, but we both knew it was time. The pack n’ play was still full of Lincoln’s laundry that I had washed the day before we ended up at Riley. The winnie the pooh hooded towel… the little outfit that said “daddy’s best friend” that I had waited to go on sale for weeks at Kohl’s and finally bought that he never even got to wear… it was just too overwhelming. I couldn’t bear to try and sort everything and put it away, so I just stuffed it all in a bag, and put it in his room. I think we just finally reached the point where seeing his empty stuff became more painful than the thought of having to remove them.

I have had several pictures printed and bought frames and hung them up in the living room, and we also have our willow tree items, and other momentos that make us think of Lincoln through out the house that bring us comfort and think of memories with our sweet boy. It’s more comforting to look at those things it seems like at this point.

I still go in his nursery though. It’s difficult to go in there, and I don’t do it everyday, but I always at least look in there daily. His smell is still there. I whisper up a prayer of thanks every time I can still smell my baby, and can feel any sort of closeness to him.

We’re just trying to focus right now on anything that can bring us moments happiness. I always have joy, no matter what because I know I will someday be with Lincoln again, and I serve an awesome Lord that loves me so, so much, that He made it possible for us to be together forever.  But for now, we are here… always having joy, but not always happy. Those moments of true happiness are rare, and I know in my heart they will always be tainted with grief. I’ve accepted that.

It’s so easy to become discouraged, as I see other young families and mom’s with their babies and children… why do they get to have it so easy, and us so hard? How are we going be patient as we wait to come up with funds to try to have more children? We were so excited to find out it would $15,000 instead of $26,000 or more, but $15,000 still is an incredible amount of money.  It’s at these times I just simply have to trust. It’s so hard, but I literally have to make a conscious decision to do so, and say to myself, “I trust in Jesus.” He is better than anyone at making impossible situations possible. We have seen it in our owns lives over and over again. And so we wait, and we trust.

We keep pressing on. Towards what we are passionate about and what we feel that God is calling us to as we seek to help others and share with them the love that has been so graciously given to us.

I want to say thank you to everyone for their prayers and kind words and for donations that have been made to help us on our journey. I was so worried about making the fundraiser, that people would think we were just wanting money and asking for handouts, but my wonderful friends and family really made me understand that this isn’t what it is at all. What we are doing is opening ourselves up and allowing God the opportunity to work. We are just showing up and saying “we trust in you” and believing that He really can do anything.

Commit thy way unto the LORD; trust in him; and he shall bring it to pass.

Psalm 37:5 kjv

The Hope of Christmas

It’s been completely exhausting grieving though the holidays. We both have been coming home from work and pretty much eating dinner, and falling asleep on the couch. It always surprises me how grief presents itself. I thought I was doing pretty good and then I realized it is taking at least 10-12 hours of sleep a night just to function at work. It takes so much energy to keep it together. I always try to give myself opportunities to have a “break down” and express my grief, but sometimes I’m just so sick of crying that I need a few moments of reprieve. We are so thankful for our co-workers and the wonderful support they have been for us through everything. I don’t know how we could be more blessed in this area.

We’re doing everything we can to include our sweet boy as we near Christmas Day. We have a special “angel tree” that is Lincoln’s tree. A dear lady from our church wrote us a letter after Lincoln passed away and shared with us that they had lost a baby around 20 years ago. They have a tree dedicated to their own little boy that they buy an angel ornament for every year. They bought us a willow tree angel ornament so that we could start the tradition as well… Her letter touched me so much and we are absolutely beginning this tradition for Lincoln this year.

I was keeping my eye out for an additional angel ornament for Lincoln’s tree and hadn’t found one yet when I was walking around Kohl’s a few weeks ago. I was feeling really depressed and missing Lincoln sooo much… I was becoming overwhelmed wondering how in the world we are going to get through this Christmas without our little boy. I stopped as I neared the Christmas decorations and said out loud “I can’t do this Jesus, please help me!” A few seconds later I looked over to my right and saw it. The perfect angel ornament for Bubby’s tree. It was an angel holding a seahorse. For those who don’t know, Lincoln’s favorite toy was a seahorse that played classical music . Jeremy’s Papaw gave it to him for Christmas last year. No matter what, that thing always calmed him down; he absolutely loved it. We actually buried him with it because we didn’t want to part him from it. It’s because of this we always associate seahorses with Lincoln’s memory. I knew that God was sending me a message that night.

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We’re just trying to take one day at a time. If I look too far ahead, it just gets too overwhelming. Like “how can we go through an entire lifetime of birthdays and Christmas’ without Lincoln?” We try to be as gentle with ourselves as we can. It’s hard feeling like the Debbie downer party pooper, when the rest of the world is so excited and joyful. I hope that family and friends understand that we love talking about Lincoln… We need to talk about Lincoln. Ask us questions. Say his name. A lot of people have said to others that they are afraid to bring him up to us because they think they will upset us. I promise you I’m already thinking about him. I think about him constantly. There is no way its bringing up a “touchy” subject. We are living this 24/7. We are going to be child loss parents until the day we join Lincoln again, however near or far that day will be.

I like to imagine Lincoln watching us from heaven. It’s a way that I still feel him connected to us. I’m so thankful that we can lean on hope and press forward. We still have a race that we are running, and at the end we will receive the BEST prize we could ever imagine.

Thank you father for the gift of your precious son, so that I can one day be reunited with my own precious son. Fill our hearts with hope and peace that only you can give. Please give Lincoln a kiss from his mommy and let him know how much we love and miss him. I can’t wait to join all of you someday. In the name of Jesus I ask these things. Amen

Riley Memorial Service August 17, 2014

We were recently invited to attend a memorial service in Indianapolis hosted by Riley Children’s Hospital to honor all of the children who had recently passed away under their care. I was nervous as we made the familiar trek to downtown Indy accompanied by my mother, sister, and brother. I did not know what to expect; of the event or my emotional state when the service would begin.

When we walked into the service there was a harpist playing beautiful music. We were instructed to write Lincoln’s name on a little felt square and add it to a Memorial Quilt that was set up down in the front of the room. Jeremy and I walked hand in hand over to the quilt and found a spot for our little sweetie’s name just as the service was about to begin.

They began with a prayer and then began to read the names of the children who had passed. There were so many names… I couldn’t believe it. All of us sharing the same pain of losing our children was overwhelming. We collectively held our breath as the chaplain read – Lincoln Huff. Jeremy and I stood as a very nice nurse brought us each a flower and a little memory pebble to carry with us where ever we go. My family cried more than I did, but I seem to go a little numb during these type of events. I honestly think it is my body’s way of protecting itself from the extreme pain and grief. If I let myself go, I know I will completely lose it and I usually only do that in the privacy of my home. I don’t think it’s unhealthy, just a way that I’ve learned to cope.

For each one of the children whose parents weren’t able to make it they placed a flower in a vase that began empty but slowly filled up until it was over flowing with carnations. They also placed little pebbles around the vase for each baby that never made it out of the NICU before it passed.

The parents were then directed to come down and surround the table that the flowers were on and we lit candles that surrounded a single rose that symbolized hope, strength, and courage. The chaplains also read Psalms 23. It really was lovely.

After the service we were directed into the lobby for refreshments, and we ran into one of the dear ladies who had been in Lincoln’s room the day that he died. She and a nurse had helped us make molds of his little hands and feet. I just had to let her know that those are now our most treasured possessions! And she remembered us. I was a little surprised, but relieved we didn’t have to try to explain who we were. The work that they do is just tremendous for parents who are losing everything… they provide something tangible to remember your child by.

It was hard being at Riley again, looking down those long hallways that I had walked so many times only 6 months earlier… just more reminders of the constant ache in my heart for my son. Still, I am glad we went. I don’t want to have any regrets when it comes to honoring him and keeping his memory alive. Thank you Riley for speaking his name.