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…

I Am Not Alone

June 17, 2014 / stephhuff / 5 Comments

I carry your heart (I carry it in my heart) I am never without it. ~ E.E. Cummings

I see Lincoln constantly. Things that I never would have thought would remind me of him pop up everywhere. As I sit here outside writing, the fireflies are beginning to come out, floating over the grass. There is a soft wind blowing the humidity and heat of the day away. And I feel him. I don’t think a mother’s heart can ever fully be separated from her children. Where ever they are, young, old, near, far, earth or in heaven, she is always connected to them. From the moment your little baby begins to grow inside you, there is an unspeakable, unexplainable love.

I remember the first time I ever felt Lincoln kick. I was around 21 weeks and had been having ALOT of serious back pain. My belly was really starting to grow! I was soaking in the tub (Jeremy’s orders), reading a magazine, singing along to some Adele music on my iPod when I felt I little nudge. I stopped singing and thought, “was that what I think it was??” I sat there silently waiting and when nothing else happened, I went back to singing away. And then it happened again… and again!! I knew without a doubt that I felt my little baby kicking me! I was so excited!! My eyes welling up with tears, I hurry and grabbed my phone and texted Jeremy the awesome news. I will never forget his response, “Aww that is so sweet, he loves his mommy’s singing.” I treasure that memory and the excitement we shared together.

Everything is so different now. Life now consists of before Lincoln’s death and after. I wish I could visit the before again, but I know that for the rest of my life on this earth, I will sadly be in the after. My heart longs for my son in a away I didn’t even know was possible. Our whole lives were devoted to his care. It’s so hard for everything to just… stop. No more changing diapers, no more baby laundry, no more baths, no more anything. I still feel like I should be taking care of him somehow.

I guess that is why I am OCD about his grave. I tend to his spot like no other. I visit often, and always after it rains; just to make sure everything is still perfectly arranged. I was there recently, cleaning off the dirt that had washed onto his head stone, and as I was crouching down, I heard a noise. When I looked up there was a squirrel just a few feet away, just standing straight up staring at me. After a few moments he slowly pranced away. I looked back down at Lincoln’s head stone and said “I love you… you’re here aren’t you?” and just then the wind picked up out of nowhere and his little pinwheel decorations twirled like crazy. I felt comforted in that moment. I knew that God was letting me know that He sees my pain and I haven’t been been forgotten. I am thankful for all of His subtle reminders that I am not alone, and that my heart can never truly be separated from Lincoln, even though we can no longer be together physically.

Lincoln is always with me. He is forever on my mind and forever in my heart. XOXO

A little back story…

April 30, 2014April 30, 2014 / stephhuff / 2 Comments

Our little boy has always been a fighter… we knew it from the moment he came into this world with a 19 hour labor! His first week was spent on a biliblanket and daily visits to the hospital to check his bili rubin levels. Finally, we got the results we were waiting for, no more blood draws, his levels were normal! everything was hunky dory for us after that, or so we thought…

Around a few months old Lincoln was barely gaining any weight. He had begun struggling to eat from a bottle, choking, spitting up, trouble breathing after eating. We brought up our concern at his doctor visit, and after explaining we noticed about his behavior he was diagnosed with acid reflux and put on some medicine, along with the other usual things, add rice cereal to milk, small frequent feedings, etc.

After a month of that I really began to suspect that something else was going on with our little boy. At 3 months old, he had grown inches, but was still at his birth weight. People were beginning to question why he was so skinny, which of course didn’t make me feel great, but I knew we needed to find out what was going on with our baby. The acid reflux tricks weren’t really helping and Lincoln was still struggling to eat.

Our Doctor decided that we needed to try an NG tube to force Lincoln to take in the calories he needed. He told us that if this didn’t work we were going to have to start testing for possible metabolic issues, to see if there were other causes to the lack of weight gain, but Lincoln started gaining weight like it was going out of style. Around a pound a week! We were so relieved that it wasn’t a metabolic issue, but he still struggled with drinking from a bottle and it got worse as the weeks went on so we were referred to a gastroenterologist at Riley Hospital for Children at IU North.

NG Tubing it

We saw a lovely doctor there who suggested being admitted right away, having a swallow study, and meeting with a speech therapist. During our stay we learned how to place the NG tube ourselves, which was scary at first, but we became pros in no time. During the swallow study we found out that Lincoln was aspirating when he ate orally, but they weren’t sure the cause. They diagnosed him with “Failure to Thrive – Feeding Difficulties” and sent us back to the gastroenterologist, who we saw a few weeks later. She ordered a head ultrasound when we went back to home as she felt we needed to begin to rule everything possible thing out as she wasn’t satisfied with the diagnosis.

Spending the night at Riley at IU North

Lincoln had his head ultrasound and was such a good boy! The radiologists couldn’t believe how he laid so still and was all smiley and sweet. They remembered me from my ultrasound when I was pregnant and were so excited to actually get to see the baby outside of my belly. They had trouble getting some of the images they needed, and were going to put a recommendation through to our gastroenterologist to order a CAT scan, but we never got the chance to schedule one…