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 ❤

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

Safe in My Arms

July 29, 2014 / stephhuff / 4 Comments

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

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.

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

Part 3 – Valentine’s Day

June 7, 2014 / stephhuff / Leave a comment

“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

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.

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!

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

Memorial Day 2014

May 26, 2014May 26, 2014 / stephhuff / Leave a comment

Missing Lincoln so much as we move into these beautiful warm days. I remember how I couldn’t wait for warmer weather, and the cute little outfits I would be buying. I specifically wanted to get him a little pair of swimming trunks with a swim shirt…

We visited the cemetery today, and there were so many people there. There were other people in the baby section as well when we were there, and it was sad to know that they have experienced the same deep pain of saying goodbye that we have… I wanted to give them a hug. It was a gorgeous day and there were so many flowers and flags and sunshine, it was so nice for all the visitors.

We went to my parents house for a cookout; very yummy. It really shows that Lincoln is missing when we have our family get together. We try to do something special to honor his memory, and include him in the festivities. Today we planted an Apple tree on my parents property in the country. It was my dad’s idea, and it was so awesome! We are going to add flowers around the base and something with his name. I’m so happy to have yet another reminder of his impact and sweet memory. I love you Bubby!

Positioning the apple tree

Mommy and Daddy with Lincoln’s Memory Tree

Grandpa with Lincoln’s Memory Tree

Part 2 – First Day

May 20, 2014May 20, 2014 / stephhuff / 4 Comments

2 Samuel 22:19
They confronted me in the day of my disaster, but the LORD was my support.

That first day at Riley was such a blur. All kinds of specialists coming to look at Lincoln and talk to us. At one point they came in and covered his head in little electrodes to check his brain activity. They talked about scheduling him for an MRI that night. They said that Marion General Hospital had sent a lot of great records along with the flight team. They had done a CAT scan before the helicopter arrived and the doctors told us that they wanted to talk to us about what was happening. At this time our families had arrived and were waiting in the PICU waiting room, though we hadn’t actually seen them yet.

The doctors led us down the hall from the PICU where there were a lot of closed doors. They opened one and led us into a room with office furniture style couches and chairs. There were no windows in the room and I started to feel incredibly nervous. We all sat down and one of the lead PICU doctors, Dr. Hoskins, began to speak to us. I remember one of the very first things she said… “we don’t know that your son is going to survive this.” I immediately went into shock. If you have ever been in a car wreck, the way I felt was like the feeling you have right before the impact… except there isn’t one so the feeling just stays and stays. Dr. Hoskins went on to say that if Lincoln did survive they didn’t know if he would ever breathe on his own, eat on his own, be potty trained, or the even know that Jeremy and I were his parents. That moment in that small cage of a room was absolutely horrific.

Another doctor, Dr Brault, started telling us that she had looked at the CAT scan from MGH and it appeared that Lincoln had several stokes that night, before the seizure had begun, and they had left a lot of damage. There were black spots all over his brain, including the brain stem, which controls so many of our basic functions, which is what lead them to believe what they did about his prognosis. Many of the doctors were crying as they relayed this information, including my husband, but I couldn’t shed a tear. I could not believe they were talking about my sweet boy… just a few hours ago we were cuddling together in our bed at home, safe and sound.

Dr. Hoskins asked what we wanted as far as care, and Jeremy said that there was no question, “that is my son, do what you have to.” Jeremy asked if we could be alone and they left us to absorb the information we had received. We hugged and cried so hard… Jeremy asked if I would pray and I begged God to please prove the doctors wrong.

The social worker who had been in the room with us had waited outside the door incase we needed anything, and Jeremy asked if she would get our family… I remember telling our family about finding out we were pregnant. They were so excited! My mom screamed and my dad cried. My sister immediately wanted to start knitting something for the baby. Jeremy had been an uncle for years and now the role was reversing and his brother would be the uncle. We couldn’t wait to be parents and start our own family.

So Excited!

How different this news would be to deliver… our parents, siblings, and Jeremy’s grandpa filed into the room, and we all broke down as Jeremy relayed the news from the doctors. Our little Bubby, who had brought such amazing joy into our lives, might be taken away.

After all that information I just wanted to go back to the PICU and see Lincoln. They were getting ready to take all the electrodes off of his head so he could go down for the MRI. They had seen some good activity that confirmed he wasn’t brain-dead, which was a huge relief, but they wanted to further confirm the results of the CAT scan. We walked by Lincoln’s bed as it was wheeled to Radiology. No one else was in the waiting room as we waited for the scan to be completed. After it was over we went back to his room and the nurse told us that they had gotten us a room down stairs, and Lincoln was stable right now so we should get some sleep since we had been up since 2:30am. We reluctantly agreed. I really wanted to stay with Lincoln, but everyone agreed that tomorrow would be better if we were rested. So we kissed our little Bubby goodnight and went down to our room.

Head still red from the electrodes

As we collapsed onto the bed I began to sob… how could this be happening? Little babies aren’t supposed to have strokes! There really isn’t any other way to say it, we just begged and begged God over and over to heal our son, until finally, we gave into sleep.