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 💚

For all the Moms and Dads

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For all the Moms and Dads who have a child missing from the “first day of school” photos.

You are not forgotten.

The barrage of photos on my Facebook hit me harder than I imagined they would this year. Please don’t misunderstand. I enjoyed seeing the photos. I even liked and loved many of them! Especially my family and friend’s little ones! I’ve just been wishing in my momma heart that I could have taken one too.

You see, my own son would be in preschool this year. We should haven been buying school clothes, supplies. Picking out a backpack. What would he have chosen? Cars? Dinosaurs? These are the things I ponder when I see the back to school displays. What would he have wanted? What would have been his favorite color? I have ideas in my head of what he might have liked, what clothes he might have worn, but these are just thoughts in my mind… thoughts that aren’t often shared.

Grief is funny in that you can’t predict when it will rear it’s head. When it will drop in suddenly and unannounced. It might be a daily activity you’ve done a million times, but suddenly it triggers a memory and then “oh, it’s you again.” The unwelcome guest who has taken up a permanent residence. Sometime’s it’s just a tugging and other times leaves you breathless with tears, but you can’t ever be ready for when it will strike.

What I’ve learned through my own personal grief is to take this unwelcome resident  and embrace it. Don’t fight it or push it away. It’s not going anywhere after all, so we may as well learn to live together. Because what I’ve found is that sometimes this grief brings up very painful memories. But other times, it brings forth funny memories, happy memories, and memories where there is so much love bursting through, it practically leaves a glow in my heart.

So while this unwelcome guest, turned unwelcome resident, turned almost “partner,” and I had a very rocky start, we’ve learned to live together. I might feel terrible while bawling my eyes out, but I honestly do feel better after. I’ve learned that grief is a form of love, and having an outlet to express that love helps me get through all the other days.

So to all the other Moms and Dads out there who should have a child starting preschool, middle school, high school, college… you are not forgotten.

Sending so much love your way.

 

 

 

 

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 4th Birthday

Dear Lincoln,

You are the most special little boy Mommy and Daddy could have ever asked for! We visited you and decorated your grave with pretty new flowers for your birthday. Daddy found the big green ones 🙂 We talked to you about your new little sister who is coming, but we know you already know her, our sweet boy.

We had so much fun lighting your lanterns with Aunt Rachel, Uncle MJ, and Grandma. We saw the two shooting stars you sent as soon as all the lanterns were in the air! What a beautiful ending for your birthday, to see the dark sky lit up with symbols of our love for you, and a celebration of your life. We miss you so much Linky… We will all be together as a family again soon. Until then, we will keep celebrating you everyday of our lives.

Love you forever,

Mommy and Daddy

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New flowers for Bubby’s birthday

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Mommy and Aunt Rachel getting the lanterns ready!

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Daddy and Mommy getting ready to launch a lantern!

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Mommy launching her lantern!

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There goes Daddy’s!

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Beautiful!

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We love you Lincoln! Happy 4th Birthday!

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Lincoln’s Memory Tree at Grandma and Grandpa’s house

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.

A Surprise and a Request

” Likewise the Spirit helps us in our weakness.  For we do no know what to pray for as we ought, but the spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God.”

 ~Romans 8:26-27~

 

As many of you know, Jeremy and I decided to take a break from IVF attempts while I finished my schooling and internship to become a board certified music therapist. We decided it would be added stress to keep trying right now, and that it would be better to wait until things slow down. But when does that ever happen, am I right?

After Lincoln died the doctors told us that any child we would conceive in the future  would have a 25% chance of having Leigh’s Disease. Well, I can tell you when you are already the “one in a million,” 25% is really bad odds. Jeremy and I agreed whole heartedly after receiving that information that we would never try to have anymore children naturally again. The thought of even the chance of losing another child was more than we could handle, or even imagine repeating.

So we were incredibly shocked to discover that we are pregnant. What a scary, uncertain, and happy moment all at once, with so many emotions running together. The moment we’d feared, and wondered about, “what if we somehow, accidentally end up pregnant one day?” Obviously, there are preventions, but the fear was still there. Well, now we know what that moment feels like first hand.

I don’t think there are words to describe how we feel right now. Words to describe that our little baby, Lincoln’s little sibling, has a very real possibility of dying just like him. Leigh’s Disease has no cure, and the life expectancy is up to 2-3 years old, although our Bubby  only made it 5 months.

We have seen a prenatal geneticist, and are planning on having an amniocentesis to find out the status of the baby’s health. This test is performed between 14 and 20 weeks and identifies genetic disease. You can read more about it here. I am currently 11 weeks and 5 days, so we will hopefully have the test around the end of this month or beginning of next month. We are still trying to get pre approval from insurance so we don’t have to pay for this costly test without any coverage.

So, that is our current game plan. If the baby has Leigh’s we will be grieving, but also preparing for whatever time we are given with this little one. If the baby is healthy, we will be rejoicing like you’ve never witnessed in your life. One day at a time… that’s all we’ve doing right now.

But I do know this. That the life growing inside of me has a purpose, just like my son’s life had purpose. Our biggest blessing was getting to be Lincoln Robert Huff’s parents, and being privileged to care for him, and love him with all our hearts during his short stay with us. And we will do the same with this child… no matter the outcome, no matter the test results, no matter the fear or the pain that threatens to invade when lying in bed at night. Jesus is still Lord, and his perfect loves casts out all fear.

All we ask is that you pray with us. Your prayers helped us get through the most painful, dark time of our lives. We could feel them… we still feel them. We need people to pray, because we are at a loss for words. The above scripture has resonated so much with us these last couple of months. We know that God doesn’t always change our circumstances, but he will make them into something beautiful if you let him.

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Huff Baby #2 Due January 17, 2018

For Lincoln <3

My dearest little love,

How can 3 years have passed already? It has felt like forever, and yet a breath… I continue to hold you in my heart, and hold Jesus even closer, as I run this path that is so empty without you in it.  Thank you for inspiring me, for being an amazing example of strength to your mommy and daddy. When I face something difficult, I often think of you and all you faced, and I press on. You overcame so much in your brief time here. Words can’t describe the sorrow that I carry with me, as your memory floods my mind everyday. I miss your gorgeous blue eyes, and your special smile with that knowing look in your eyes. Our hearts were connected from the start my little one, and they still are, as part of my heart went with you that day, exactly 3 years ago. I’m forever counting down the days, minutes, and seconds, until we are reunited, never again to part. The joy that will fill my heart that day will be indescribable!

Until that sweet day, I will continue to carry on your legacy Lincoln. The lives that will be touched because of the gift of music therapy that you gave mommy, will spread goodness in your memory for many years to come. I thank God everyday that He chose me to be your Mom, to care for such a precious gift, for no matter how short a time. Jesus brought us together, and He will bring us together again someday my son.

Mommy loves you more than I could ever express, but I know you saw my love for you every time you looked in my eyes. Have Jesus send mommy and daddy a little extra strength today.

I love you Lincoln!!!

Forever,

Mommy

Music Autobiography

Here is a project I had to do for school that was a ton of work, but totally worth it!

A musical overview of the impact of music in my life, and why I want to become a music therapist. ❤

Spoiler- Lincoln makes several appearances. 🙂