As The Dreaded Day Approaches…

January 23, 2015January 23, 2015 / stephhuff / 14 Comments

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!.

Another Year of Missing You

January 3, 2015January 3, 2015 / stephhuff / 10 Comments

Well, we made it. Kind of. We survived our first Holiday season without our son. Some things were easier than I thought they would be, others were much harder. It honestly didn’t feel like Christmas for the first time in my life. Things that I’ve never really noticed before would make me cry, for instance; how many baby Christmas ornaments every store seems to have, and how almost every song mentions “baby boy” and “infant.” On Christmas day, there was no rushing down the stairs to the tree to open up presents with a 15 month old. No laughter. No excitement. If only I had known that last year would be the only time I could ever buy my son Christmas gifts, I would have bought so many more. Taken more pictures. Not that a 3 month old knows that they are receiving gifts, but these are the things that run through your mind when your baby dies. It’s not always logical.

We had lots of get togethers over the holidays with family and tried our best to enjoy our time as much as we could, but… Lincoln was missing. Really missing. It was just so obvious. For me, it was like the hole in my heart was magnified for everyone to see. It’s hard not feel self conscious sometimes because you can just feel people watching you (especially when you are holding other babies), but many never actually try to talk to you about what you are going through. It can be pretty lonely to be the person everyone looks at and hopes they are never in your shoes… and I would never want them to be. There is just no way to even begin to fathom the pain of your child dying unless you have gone through it. I know, because I used to know what it was like to not feel this way. To have a living child. There is a bliss that you have that you don’t realize you have until it is taken away from you.

I do want to say how thankful I am for everyone who went the extra step and let me know that they have been thinking about us or keeping us in their prayers. It really means so much to me. It helps me to be reminded we are not alone. A cousin of mine shared a beautiful story with us of how he shared Lincoln’s story with a friend coping with loss. A couple of my work friends gave me a beautiful angel bear, and a “baby heaven” ornament. It made my day when I received those gifts. Thank you so much girlies (you know who you are, love you!)

The other night when I was at my parent’s house I was reading an article about a woman who had lost her husband, and how she always asked God for “signs from heaven” that he was still with her. She went on to explain how she’s received many signs in the last several years since he has been gone that have had been comforting. It made me think about all the different signs that God has sent to us about Lincoln over the last 10 month. I asked God right there, “Please send me a sign from Lincoln, I miss him so much!”

The next morning I was at work when one of our members came in and was talking about how he had felt bad that he had asked me about how good my Christmas was last week and had forgotten that Lincoln had died. He went on to tell me that he had just came from mailing off a donation to Lincoln’s Hope using the brochure I had given him when he had last asked about why Lincoln had died. Not one hour later, another member came in with no other business to do except to donate to Lincoln’s Hope too. I was astounded. I asked for a sign, and I got TWO. Not only were the signs meaningful, but they will help other kids. SO AMAZING.

It’s hard to be the mom of a world changer though. I have thought a lot about Mary lately, and how she was chosen to be the mother of a son that she would have to watch die one day. She pondered so many things about Jesus’ life in her heart and enjoyed her time with him as much as she could. He came to Earth to be her savior, but he was also her baby boy. It was her job to love him and care for him, but she knew he had a great purpose to fulfill one day. I know it wasn’t easy to watch him fill that purpose. But, because of it, my son’s death is being redeemed for God’s glory. Christ has already defeated death, and one day there will no longer be any graves or cemeteries, for they will all be empty. The old will pass away, and there will only be what is new.

I can’t begin to express how much I long for that day. The thought of entering a new year in which my son never lived has been difficult, but I know that it must happen so I can be closer to the sweet, sweet day we will be together again where there will be no tears and no heartache. I pray for the strength to live this life that I have been given. What a slap it is to evil when we stand firm in Christ through even the most difficult tribulations. I could not survive this without His love pouring over me daily. I hope so much that my entire life is spent sharing that love with others.

I hope for a year filled with love and remembering my sweet Lincoln…

Merry Christmas Lincoln

December 25, 2014December 25, 2014 / stephhuff / 4 Comments

My Dearest Lincoln,

Oh how I wish we would be together today my little love… and every day. The ache of missing you goes way down deep in Mommy’s heart. It just doesn’t feel like Christmas without your smiling face.

Do you remember your first Christmas? Mommy and Daddy were so exited! We all slept together in our new Christmas jammies from Gramma and Grampy Marley. Daddy woke up first and just couldn’t wait before he woke us up! You had the sweetest little “Baby’s first Christmas” stocking. We got you a little first Christmas book and Daddy read it to you right away. We had such a wonderful first Christmas morning together as our family of three.

Christmas morning 2013

To Lincoln
Love, Mommy and Daddy

Daddy reading to Linky

What is Christmas like in heaven Bubby? I never dreamed that you would meet Jesus before me. You have accomplished so much and changed so many lives in your short time with us. You still are changing lives baby. It makes me very happy to know that you are in a safe place and are being well taken care of until I’m with you. Grandpa Robert, I’m sure, has his hands full. Are you singing praises to God with the angels? I can’t wait to hear your wonderful voice sing. I always wondered what it would sound like, I’m sure it is just beautiful.

We decorated your resting place for the holidays. You even have your very own little tree. Aunt Rachel made an ornament for you with a pretty pinecone and green ribbon. All your little friends had very pretty decorations too.

Ready for Christmas

Mommy and Daddy are trying their best to make you proud and share your story with as many as we can. You are our hero Lincoln. You have made me the proudest Mommy I could ever be. I dream of when we will all be together again someday… Tell Jesus to help Mommy and Daddy be strong. We love you so much, and more and more everyday, just as if you were here because in a way you still are; you are living on in our hearts.

Merry Christmas my love.

XOXO, Mommy

The Hope of Christmas

December 21, 2014 / stephhuff / 1 Comment

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.

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

And So It Begins…

November 2, 2014 / stephhuff / 2 Comments

We knew it was coming… the start of a long season of holidays without Lincoln. It started last month with his birthday, and we now have to get through a holiday every month leading up to the anniversary of his death in February. The week leading up to Halloween ended up being really rough for Jeremy and I… I try so hard not to torture myself with the thoughts of what I should have been doing leading up to this October 31st (picking out Lincoln’s costume, etc). But my heart knows… I broke down after I got home from work Friday as the sweet little kiddos were coming up to the house for trick or treating. Jeremy always dresses up and sits out on the porch, and sings Christmas carols (he’s so crazy haha). He does it all to make the kids and parents laugh and have a great time. He gets so excited, I just know how wonderful he would have been with Lincoln, and how much fun they would have had together. It just breaks my heart. He should be here. But he isn’t. It’s never easy, but some days are a little easier to get through than others. I’m feeling like those days just might be a little more few and far between over the next several months.

I am so grateful that we did get to experience so many holidays with Lincoln, while he was here with us. There are so many wonderful memories we can think about as these days go by, but at the same time he will be so obviously missing too. I remember he was still so little, just over a month old when we had our first and only Halloween together. Our friends came over to visit, with their kiddos in costume. I, of course, had a mini photo shoot with Lincoln in his “My First Trick or Treat” onsie from Grandma and Aunt Rachel.

My First Trick or Treat 🙂

I miss him…

It just hurts so much… it goes way down deep inside, it penetrates the heart, body, and soul. I always ask God for just enough strength to get through each day, one at a time. I’m sure to a lot of people it seems like a lot of time has passed, but Jeremy and I are still so new in our grief. Everything I’ve read says the first 24 months are the hardest, but I know we are going to get through this. We are pressing on in honor of our son who doesn’t get to, and that includes adjusting to our “new normal.” We are back to just Jeremy & I, but we are forever changed. We are a family of 3.

I have come to realize that I like the “new” Stephanie more than the “before” Stephanie. This Stephanie is Lincoln’s mommy. This Stephanie loves more fiercely and passionately than ever before, and would give her life for those she loves. She is brave. She is hurt. She relies and trusts in her Savior like never before. So while I would give anything to have my son back, and not have this broken heart, God is taking the pieces and shaping me into someone “new.”

HAPPY HALLOWEEN LINCOLN! MOMMY CAN”T WAIT TO CUDDLE WITH YOU AGAIN ONE DAY!

Cuddles with Mommy ❤

Reassurance

October 12, 2014 / stephhuff / 4 Comments

Through it all, through it all, my eyes are on you. Through it all, through it all, it is well. So let go my soul, and trust in you. It is well with my soul
~taken from It Is Well

I’ve missed Lincoln SO MUCH lately… I miss him constantly, my heart is just aching for him. I was so encouraged at church though today. Jim Lo was guest speaking, as October is our missions month. He was speaking about how we need to allow the Holy Spirit to help us and empower us everyday to spread the love of Christ to the lost.

As people were responding to the invitation at the end of service I could just feel the Holy Spirit stirring. As I felt waves of chills come over me, I felt God speaking directly to my spirit. He told me that He knows and understands my pain, and that the Holy Spirit would be giving me the strength and comfort I need to carry on what He still has for me to do before I can come home and see My Lincoln again… all that is required of me is to truly rest in His embrace.

It was such an enormous encouragement. I could just feel my spirit being uplifted.

I know there is much left to do before I can go home. As I share my son’s story with everyone I possibly can, there is heart-break, but there is also HOPE. I know of people who have come to know Christ through my little Lincoln. How truly awesome. God is bringing as much good as can possibly come from tragedy. I believe that is what it means when God says He will work all things together for the good of those who love Him. No matter what our tragedy is, or how badly we hurt, God wants to take our story and use it for something beautiful in a way that only He can create.

This is my prayer…

Dear Lord,

I surrender my pain and sorrow to You. Help me to rely on you as I go about this life that you are redeeming for your glory. I ask that you will give me the courage and strength to share with others your own story of hope. I want my light to burn brightly as a beacon to those who are hurting, lost and in need of love and comfort that only you can give. I am choosing to hold on to hope and your peace that passes all earthly understanding. It is with a grateful heart that I ask these things in the name of Jesus my Savior.

Amen.

Genetic Testing Results

September 25, 2014 / stephhuff / 1 Comment

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

Dear Lincoln

September 16, 2014 / stephhuff / 7 Comments

Dear Lincoln,

I remember the day you were born so vividly.

Mommy was up late getting her hospital bag ready because you were due in just two short weeks! So imagine my surprise when around 4 a.m. that morning I sat up suddenly in bed and my water broke everywhere! I will never forget daddy’s face when I woke him up. It was so funny! Shocked and half asleep he wanted to go straight to the hospital, but your mommy is crazy and “just had to” take a shower and put on some mascara!

Labor was slow going… I lost track of how many popsicles (preferably red) I ate. The contractions got really strong after the doctor gave mommy some medicine to help you come out faster. I began to start pushing around 11:30 p.m. My goal was to deliver you by midnight, but it took awhile to push you out. Your heart rate started to drop and the doctor had to do some crazy things to get you out… and mommy felt it!

And then it happened… the doctor lifted you up and laid you on mommy’s chest! I saw your beautiful, wonderful face for the first time! I had waited so many months for this moment. I loved you from the start, but when mommy saw you and held you I just couldn’t hold in the love and devotion that was bursting from my heart to yours! I kissed your sweet little face and told you I loved you over and over. I couldn’t even dream of what that moment would feel like until I felt it. YOU, little boy, instantly made all my dreams come true. You made me feel love that I never even knew was possible, until I held you in my arms. You cuddled against me so sweetly, looking into my eyes, without nary a peep.

I always loved reading you your book “On The Night You Were Born” because I felt that it helped convey to you the truth. On the night you were born, everything was perfect. You were perfect. You ARE perfect.

Mommy and daddy love you SO MUCH Lincoln. We wanted to celebrate your first birthday with you, but I know that God is throwing you a great party in heaven today. I just wanted you to know that you changed our lives forever and that you are still changing lives and impacting this world with your life. You accomplished more in 5 months than some people do in decades. You are our hero. I mark each day off of the calendar because I know that each day done is just one more closer to being with you again, my love.

Happy 1st Birthday Lincoln. You truly are invincible.

Love forever and always,

Mommy

Just born

All dry 🙂

Tired mommy and daddy looking at their little treasure

So aware and content!

Riley Memorial Service August 17, 2014

September 14, 2014 / stephhuff / Leave a comment

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.

Memorial Quilt

Lincoln’s little quilt square

Flowers and pebbles representing the recently deceased children

Jeremy and Stephanie surrounding flower table with other parents

Hope, courage, and strentgh

Photo of Lincoln we shared with other parents

Genetic Testing and More…

August 16, 2014 / stephhuff / 1 Comment

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…