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

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 ❤

Genetic Testing Results

Today was the day we’ve been waiting for. Time has flown, and yet at the same time I can feel each second ticking by, so slow, one after the other. It has been emotional day…

We finally heard from Riley this afternoon about our genetic testing results. Jeremy and myself are both carriers of a recessive mutated EARS 2 gene which when put together, presents as Leigh’s Disease. Every child we would possibly conceive in the future would have a 1 in 4 chance of being born with Leigh’s Disease. Because of this fact, it is the recommendation of the doctors that we should not try to have any more children naturally, since Leigh’s Disease is a death sentence. If we still want to try to have our own children we will need to have IVF if we want a guarantee they will be disease free.

This has been a pretty devastating blow to say the least. We knew that it was a 99% chance that this would be the results, but to know for sure that we can never try to have any more children on our own is just crushing. I couldn’t stop crying at work today, so I went home early. I appreciate my coworkers so much as they have been so supportive. Sometimes you just need people to hug you and cry with you, and they did just that for me today.

There are just so many different emotions we are experiencing right now… sadness, guilt, fear, uncertainty… when will we ever get to be parents again? What if I accidentally get pregnant and have to bury another child? Why do we keep receiving knockdown, after knockdown?

While we may not have any answers, and may never have some of them, we are trying to face our new knowledge with courage. Whenever I feel like giving up I look at my Lincoln bracelet. That little boy showed this momma what it truly means to be strong and courageous. If my 5 month old son can fight with all his strength until his final breath, than so can I. We are going to make him one proud baby!

Please continue to pray for us and our families as we process this news and what it means for our family. We appreciate all the love and support more than we could ever let you know. I ask also that you will consider donating to Lincoln’s Research fund. You can do so by clicking the link above on the menu bar. The money goes to developing life prolonging treatments and hopefully someday a cure. Our son will help future little ones and maybe keep other mommies and daddies from saying goodbye so soon. Love to you all.

My Lincoln bracelets

My Lincoln bracelets

Genetic Testing and More…

It’s finally happening. After months of waiting to hear back from doctors, and battling with insurance, Jeremy and I are going to have our genetic testing done this Thursday. We were denied insurance coverage for our testing and have decided to pay cash as we cannot stand the thought of going any longer wandering about in the unknown. We will be tested at the Department of Medical and Molecular Genetics in the Medical Research and Library Building at Indiana University Health, just down the street from Riley Children’s Hospital. It will be awhile before we receive any of the results. The goal is to find out if we passed down the Leigh’s Disease to Lincoln through a recessive gene, or if he spontaneously had a mutated gene. If we passed it down to him, that will directly impact our future family planning.

We are also going to be receiving genetic counseling that same day where they will go into great detail about what exactly Lincoln had and how it effected his body. There are supposed to be slides and everything. I can honestly say that I’m excited and scared at the same time. I hated not knowing what was happening to my little boy, but I feel it will also break my heart even more (if that’s possible) to know what he truly was going through. I can only remind myself over and over of God’s promise that my baby is pain-free and waiting for me in heaven with our Savior. It is so mind-boggling to think about my dear little son experiencing so many things that I can only dream and hope for as I wait to be reunited with him. I can’t wait.

The other day I got the mail when I arrived home from work and immediately began sobbing as I had received a catalog called Throwing your Baby’s 1st Birthday… just another reminder that next month on September 16th, I will not be having a party. No cake, or candles, or presents, but in its stead, a trip to the cemetery where his little Lincoln’s body was laid to rest. I didn’t want to celebrate my own birthday last month, trying so hard not to cry when I was sung happy birthday by my family because it was a reminder that I would never be singing that song to my son. There are so many unexpected things that come out of nowhere and knock for feet out from under you, when you are so deep in grief. You think you are having an at least “ok” day and BOOM you hit the ground with a huge thud.

Tomorrow, on Sunday, we are driving to Indy with my family for a memorial service for all the recent children who have passed away at Riley. A part of me doesn’t want to go back there, but I don’t want to look back and have any regrets. I’m not sure what to expect, but we were told to bring a framed picture of Lincoln to share with the other parents. I think we should also each have our own box of tissues as well.

I do want to share some wonderful mail that we received today. I contacted the photographer who took Lincoln’s newborn pictures at Marion General Hospital, hoping that they would still have the pictures so we could buy more. I was blown away when not only did they have the pictures we had purchased, but they still had 5 other poses as well. They sent them all to me for free on a CD and a letter giving us all the copy rights to the pictures!!! THAT MADE MY DAY. What a wonderful act of love that we have received from Carl at Portrayal Studios. I am so thankful for their generosity. I want to share some of these beautiful pictures of my son…

What a sweet boy!

What a sweet boy!

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Mommy and Daddy love you Lincoln

Mommy and Daddy love you Lincoln! So much!!

 

Safe in My Arms

Well, it’s official. Lincoln has been in heaven longer than he was here with us, sans belly time. It is so unbelievable. Time has pretty much stood still for us, and yet moves at lightening speed all at the same time.

It’s absolutely exhausting missing my son. I was on my way to work today when In My Arms by Plumb came on the radio. The song talks about holding your baby safe in your arms through the storms of life. I couldn’t help for feel the intense pain from my own empty arms that ache for my son. I know that he is safe in the arms of the Father until we can be reunited. That knowledge brings comfort, but it doesn’t stop the tears from flowing. I’ve copied a link below so everyone can listen, and if you’ve never heard it, you will soon know why I was a hot mess by the time I got there. I always wear waterproof eye makeup now because I never know when a cry fest might arise, so of course on the day I ran out, I have a mini meltdown. I walked into work with two black stripes running down my face.

I wanted to give an update as far as Jeremy and mine’s genetic testing. We found out 3 months ago exactly what type of Leigh’s Disease that Lincoln had, and we have been waiting to hear back from our contact at Riley Children’s Hospital about if our insurance will pre approve our testing. We finally heard back last week but it was not the news we were expecting. The doctor we’ve been working with lost our info and never submitted our application for pre approval. So we’ve basically been waiting these last 3 months for nothing. Very frustrating. Please be praying for quick responses from doctors and our insurance companies.

I submitted Lincoln’s name to be worn by a volunteer at the annual Walk to Remember in Chicago that is hosted by the Compassionate Friends. It was very moving to see the picture with his name listed

Walk to Remember 2014

Walk to Remember 2014

I’ve learned already what deep sorrow I will forever carry on this journey as a child loss mommy. I have a Lincoln sized hole in my heart and I know that it will be there until we are together again one day.

Part 3 – Valentine’s Day

“If there ever comes a day when we can’t be together keep me in your heart, I’ll stay there forever” ~ A. A. Milne

The doctors performed rounds early every morning. They would go around to each patient’s room in the Pediatric Intensive Care Unit and stand in the door way with all of their clip boards and traveling computers. They would discuss Lincoln’s progress, how things went the previous day, medications, test results, possible diagnoses, and the action plan for the day. Jeremy and I always tried to be there during the rounds so we could listen in and make sense of all the medical lingo they were saying in reference to our son. They decided to try and slowly turn down Lincoln’s respirator because he appeared to be breathing well, and he was initiating most of his own breathing without the help of the machine. I remember thinking how crazy that was that they could tell all that from looking at a monitor.

The results for Lincoln’s MRI had been analyzed and Dr. Brault wanted to know if we were interested in seeing the images. They brought in a computer on wheels that had a large screen and immediately started walking us through several pictures of his brain. It was so surreal. The pictures were hard to look at, but Jeremy and I both wanted to see them. Lincoln’s brain glowed brightly on the screen, but we quickly saw what had been alluded to the previous evening… he had dark shadowy splotches all over his brain. We were told that all of the dark spots were where brain death had occurred, and that they were keeping a close eye on Lincoln for brain swelling because sometimes dead brain tissue can also damage the surrounding good tissue. The doctor than pulled up the image of Lincoln’s brain stem and the entire center was black. I was crushed when I saw that picture. The darkness in the brain stem was what led them to believe that he would never be a functioning baby again. In a way, viewing the pictures kind of made everything sink in and become tangible. Dr. Brault also said the results showed that Lincoln did not have a corpus callosum, the part of the brain that connects the left and right hemispheres of the brain. The side effects can range from undetectable to very serious. They thought that the missing corpus callosum more than likely attributed to his eating difficulties.

Dr. Brault said that because of clear metabolic issues, symptoms and the missing corpus callosum, they now believed that the top contender for Lincoln’s diagnosis was Leigh’s Disease.  Leigh’s Disease is an extremely rare neurological metabolic disorder. We were told that there is no cure,and very few treatments, but they were going to begin them right away. They were going to be giving him a “cocktail” of vitamins and a special diet, along with the sodium bicarbonate (for his acidosis) and seizure medication.

If you would like to read more about Leigh’s Disease, please visit these sites that helped me to understand a little about what was going on in my little boy’s body. It is a very complicated and rare disease, with several variations, and multiple inheritance patterns.

http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.8637485/k.8A22/Leighs_Disease.htm

http://www.ninds.nih.gov/disorders/leighsdisease/leighsdisease.htm

http://ghr.nlm.nih.gov/condition/leigh-syndrome

We were left alone for awhile to let all this new information sink in. There are too many thoughts, emotions, and feelings to even try to convey here. A nurse walked in and began hook up Lincoln’s treatment to his IV. She asked if we were doing anything for Valentine’s Day. I merely said “no” amazed that she asked us that, first because I forgot it was Valentine’s Day, second because how in the world could we possibly be thinking of going off and celebrating right now?? Looking back now, I know that Jeremy and I “celebrated” our love in our own way that day by supporting each other and being there together going through a tragic situation side by side. We never lashed out or blamed each other for anything. We were standing together with our son firmly on true love for one another. When you go through something like this it changes your relationship forever. You either grow closer together, or let it tear you apart. There cannot be an between. We have learned to really cherish each other.

I remembered that somehow in the rush of swinging by our house to get some clothes and stuff on the way to Riley that I had somehow managed to grab the bag that had the Valentine’s hat and socks in it that I had bought Lincoln just a few days ago. I had Jeremy run and get the bag from the car after asking the nurse if it was ok. When he returned we put on his little “Heart Breaker”  hat and socks that said “I ❤ YOU”. I stood by him looking over him as he laid there in his festive little ensemble. I remember think that the “heart breaker” on his hat had kind a double meaning because our hearts were breaking, just not for the reason the hat was implying.

 

Bubby in his Valentine's outfit

Bubby in his Valentine’s outfit

 

I always dressed Lincoln in the month’s holiday apparel when I took his 1 – 4 month pictures. I was so terrified that there wouldn’t be a 5 month picture to add to our collection. The nurses just raved and raved over his little “outfit”. I had to agree that he was the most adorable boy ever. Jeremy and I decided to go get something to eat and talk some things over, and while we were gone the nurses made adorable Valentine’s for us from Lincoln with his foot prints on them. They are some of our most treasures possessions.

 

Valentine's from Lincoln to Mommy and Daddy.

Valentine’s from Lincoln to Mommy and Daddy.

 

I wanted to get something for Lincoln because I knew this could be our only Valentine’s Day together so I ran down to the gift store before they closed with my sister and my cousin Amber. Now mind you, there are three gift stores in Riley, so you can imagine us running around like crazy people trying to find these shops. We ended up going to two of the three because the first one just didn’t have a card that I liked well enough, so off we go, running to the next store in a mad dash! I ended up getting a little tiger, a balloon, and a card for Lincoln. Other people bought him cards and animals as well. The end of his bed filled up pretty quickly.

 

Lots of Valentine's for our baby!

Lots of Valentine’s for our baby!

 

Jeremy broke down as we signed Lincoln’s card as he realized he had never signed “Daddy” before. It was a long, long day, but we tried our best to make it special for him. I whispered in Bubby’s ear that he was my little Valentine and gave him a kiss on his little cheek, still puffy from trauma. He is the best son I could of ever dream for… You will always be my special Valentine Lincoln, mommy loves you! ❤

 

Be My Valentine

Be My Valentine