Reassurance

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

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

Dear Lincoln

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

Just born

All dry :)

All dry ūüôā

Tired mommy and daddy looking at their little treasure

Tired mommy and daddy looking at their little treasure

So aware and content!

So aware and content!

Riley Memorial Service August 17, 2014

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.

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!

DSC_7766

DSC_7765

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.

I Am Not Alone

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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

‚ÄúIf there ever comes a day when we can’t be together keep me in your heart, I’ll stay there forever‚ÄĚ ~ 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

Memorial Day 2014

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

Positioning the apple tree

 

Mommy and Daddy with Lincoln's Memory Tree

Mommy and Daddy with Lincoln’s Memory Tree

 

Grandpa with Lincoln's Memory Tree

Grandpa with Lincoln’s Memory Tree

Part 2 – First Day

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!

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.

Hooked up to so many machines

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.