baby loss

Happy Birthday Big Brother.

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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

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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

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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

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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

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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.

 

Sweet Lincoln

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When we were at Riley with Lincoln, I really bonded with one of the music therapists there. She was so sweet, and would come in with her guitar and sing to him. The music was soothing… I usually just sat there and cried while she serenaded him. It was a true moment of peace in his PICU room.

I showed her pictures and videos of Lincoln because I wanted her to know that he was so much more than the silent little body lying there… he was a smiley, happy, intelligent little boy, who had an incredible bond with his parents. She sang a song to him called “Sweet Little Lincoln,” that just made me fall apart when I heard it. The words say “dear sweet little Lincoln, our sweet little boy, we love sweet little Lincoln, he brings us so much joy. And when we’re together, O how happy we’ll be, ‘cause we love sweet little Lincoln because he is so sweet.”

After Lincoln passed away the music therapist came to our room to help console us and offer her condolences. As we hugged she asked if there was anything she could do for us. I asked her if there was some way we could have a recording of the “Sweet Lincoln” song. I was thrilled when she said she would go record it right away.

We ended up playing this song at his funeral. I cherish this song, and I will always have it bring me comfort and memories of my sweet baby boy.

It is because of our experiences at Riley with our awesome music therapist, I have decided to go back to school and get my music therapy certification. I already have my B.A in Applied Voice from IWU, so I applied and was accepted late last year to St. Mary of the Woods College. I will be going through their Music Therapy Equivalency Distance (MTED) program. This certification will be an equivalent to a B.S. in music therapy. I have been taking the prerequisite psychology classes since January to get ready to begin my music therapy classes this fall. I will be heading there for a short 3 day residency in August, where I will get to meet my professors and attend some music therapy classes and seminars. I am incredibly excited that I have begun this journey! If I can touch one life the way the music therapist at Riley touched mine, I will be so thrilled. I can’t think of a better way to use my gifts and abilities to help others, honor the memory of my son, and to share the love of God.
The “Sweet Lincoln” song is below… I’d love for you to take a listen ❤

2nd Mother’s Day, IVF Update, and more…

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This Mother’s Day was definitely different than my first without Lincoln. It was also better. I missed him terribly, as I do every day but was able to make it to church this year, and sang in the worship team. I was so blessed by my friends at church who wished me a Happy Mother’s Day. I know it’s hard for people to know what to say to me sometimes, especially when how can I have a happy day when my baby isn’t with me? I was actually surprised how comforting it was to be included. I still felt uncomfortable wishing others a happy mother’s day, as strange as that may sound.

When I was at work throughout the week at Afena there were folks who wished me a happy mother’s day, and it was nice just to enjoy the well-wishing without having to explain anything or get upset. It was nice to pretend, even if it was just for a second, that everything is normal.

We stopped after church at a local market to buy some flowers, and this sweet humming bird kept flying around me. Now, I love humming birds, but I can never get a good look at them! As this one kept flying all around me I couldn’t help but feel that this was my Mother’s Day gift from Lincoln. 

I wanted to take a moment to give everyone an update on our progress with our IVF journey. With our fundraiser in April we we’re able to raise just over $4000. With those funds we were able to pay the upfront cost of $3850 to the Genesis Genetics lab, who is creating from scratch our family’s personal Leigh’s Disease test, which is just mind boggling that they can even do something like that. We had a genetic counseling session with one of their genetic counselors who walked us through the process of how they create the test, which will take about 2-4 weeks to create. Once the test is complete, Genesis Genetics will notify us and our fertility doctor in Indy that we can proceed with the IVF process.

The next amount we will be raising funds for will be the upfront cost of the actual IVF procedure which includes the medications, egg retrieval, fertilization, implantation, and ultrasounds plus an additional final installment of $1000 to Genesis Genetics. This amount will be just over $8500.

We are planning a large rummage to raise funds about the end of June/July sometime. If anyone would like to donate items to sell we are currently accepting donations now, through the time of the rummage, which we will shortly be announcing the date.

SNEAK PEAK – We are also planning a scrapbook party fundraiser sometime this summer as well TBA.

We want to say an enormous thank you to everyone who has made a contribution towards making our dreams of growing a healthy family closer to a reality. I really can’t express how humbling this all has been. We are forever grateful as we keep plugging away at making this happen.

I hope everyone had a lovely memorial weekend last week. We spent the weekend relaxing with family, and were able to plant flowers around Lincoln’s memory tree. It was so beautiful!

   

  

 

 

When Joy doesn’t mean “Happy”

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“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 msg

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

A Year Without You

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I haven’t written in awhile as the emotions have been pretty intense… sometimes there are no words when your hurt goes so deep. Exactly one month today ago today, we had the one year anniversary of our dear Lincoln passing away into heaven. It has taken me this long to be able to write about it.

Jeremy and I both had the entire week off from work leading up to the actual date…
We spent it relaxing and spending lots of needed time together.
Our wonderful family and friends spoke encouraging words to us throughout the week.
I had a girls day with one of my best friends.
We received a beautiful care package from good friends.
We spent a fun day in Indy with friends.
Our wonderful church family surprised us with a weekend away.

We were blessed.

Friends and family also messaged us with “good deeds” that they were doing that Saturday in honor of Lincoln. Some of things were donating bibles, clearing snow from neighbors driveways, paying for other’s meals at restaurants, etc. It was so comforting to hear of the good that Lincoln inspired that day.

We also watched videos of us singing to Lincoln at Riley the night leading up to him passing away that we haven’t seen since he left us. After lots of thought, we have decided to share one of the videos. It was an incredibly personal moment, but the presence of God was with my son his whole short life, and He was there with us in that room as our sweet boy slowly began slipping away.

In this video, we are singing a song to Lincoln that Jeremy wrote called “What a Day”. The lyrics speak about what an amazing day that it will be when we finally see Jesus face to face and will sing praises to him in person. To think that just hours later my own son would experience just what this song speaks about… it just overwhelms me. I can barely see to type as I cry thinking about holding him for the last time, kissing him for the last time… but then the Father whispers truth into my heart; that while those may have been the last times on this earth, I will hold Lincoln again someday and kiss his sweet face. And what a day that will be…

As The Dreaded Day Approaches…

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Lincoln's Build-a-Bear "Spots"

Lincoln’s Build-a-Bear “Spots”

When I first began this blog, I was telling our story day by day of our experience at Riley. I had to stop and give myself a break because I just couldn’t handle the emotions of reliving those days as I wrote. It helped at first, but with Jeremy struggling at work with PTSD and me working and also trying to keep our bills paid and everything, it proved to be too much to finish at that time.

But I think I’m finally ready to continue it next month. It feels like an unfinished book that needs an ending. I think it will help me process my grief in the upcoming month. I have to be very careful when I let myself dwell on events of that week, or I will be sinking into a bottomless hole before I know it. The memories cause extreme emotional and physical reactions. Before I know know it, I’m right there back in that little PICU room reliving every moment.

February 21st will be one year since Lincoln left us. Jeremy and I are both taking the entire week off from work. This day weighs heavy on my heart and mind as it approaches. I just can’t believe I haven’t been able to hold and kiss my sweet baby for almost a year. It doesn’t even seem real. His swing still sits over beside the tv. His play pen is still out with his folded little outfits and towels still stacked from the laundry we did the days before he died. I’ve moved a lot of his things just into his nursery because they hurt so much to look at every day. His stroller and car seat. The unopened high chair he never got to use… But those last few things I haven’t had the strength to move yet.

I tried to clean out his play pen but when I came across one of the last outfits I bought him, that I had been so excited to buy, that he never got to wear, I just couldn’t do it. Our grief counselor once told me that we shouldn’t push ourselves to clean and move things we aren’t ready to because you can only do it once. And right now we’re not ready. I don’t know when we will be. And that’s ok.    

Please keep us in prayer my friends as we approach the anniversary of the death of our son. It was truly the worst day of our lives. I actually feel guilty for even saying that because it was also the day that Lincoln was set free from his painful and diseased body, and made whole and new in Christ. So while my mommy heart knows that was truly best for my darling baby, that doesn’t mean that my heart wasn’t shattered that day too. All my hopes and dreams of a toddler running around the house this winter, first days of school, playing football and piano, years of birthdays and holidays and so, so much more were taken from me in an instant. And I have to live with that the rest of my life. Everyday he is missing. 50 years from now he will still be missing.

God give me the strength to face each day with courage!.