Michael-Evans,

To tell you that I think about you often, would be a lie. I think about you all the time. You are never far from my mind and definitely not my heart. I have been thinking about you an exceptional amount more lately. I think that is attributed to the fact that I see all these other little boys and girls around me and I watch what they are doing. Things you might have been doing by now. I think about all the time you spent in the hospital and all those memories we missed as a mommy and son. But when I get down, I think about the memories that we did have. Like the first time you ever smiled at me. You were still in the hospital and it was just a few days before your heart surgery. I was holding all 4 pounds 12 ounces of you and probably the same amount of wires and tubes and such. But it was marvelous to hold you. I was talking to you. Telling you how much I loved you and sharing stories of your big sissy and your daddy back at home. I was telling you that you were an amazing little man and you were looking at me so intently. Then there it was, that smile, your smile, that ray of sunshine; spread across that tiny face. It was the most magical feeling. I can honestly tell you, that ray of light was never put out. You smiled all the time. At everything. That’s how we knew you were sick the second time. Because you stopped smiling and with every ounce of energy you had, you cried. It broke my heart, because I didn’t know how to fix it. I didn’t know what to do for you to brinig joy and happiness back to that beautiful face. How I longed to do just that. But I couldn’t. I felt defeated. Even after all you went through during your second hospital stay, you smiled. Again, in the hospital. This time it was more magical and more stirring than the first time. You had made it through some of the lowest of the low days and it was amazing.

I also wanted to share with you another memory, this one sort of hazy to me, yet so clear. Your birthday. It’s nearing Father’s Day and I have to share with you the story of your birth to honor your daddy. Michael-Evans, your daddy is the most amazing, compassionate, loving, gentle, tough, and caring man I know. He was and is my physical rock, with God being my spiritual rock. The day you were born, I woke up still having contractions due to an irretable uterus and loving the feeling of my little man kicking and growing inside me. It was the day before my brithday and also New Year’s Eve. Your daddy and I got married on my birthday, so it was also the day before our 3 year anniversary. Daddy told me the whole time I was pregnant with you that you had to be born on New Year’s Eve so that we could get a tax break. I knew it was a joke, but he told me all the time. The day of your birth, New Year’s Eve, I cleaned the house, because I had the energy to do so, and got ready to go to the doctor for another OB appointment. It was all routine. Little did I know that routine would no longer be a word in our lives. Daddy and I went to the doctor for our appointment at 2pm. My doctor had to deliver another baby, so he was late getting to us. We finally got to see him around 3:30pm. He walked in, already not happy, measured my fundal height and said “You’re massive.” Let me tell you, that made me feel great. Not. But anyway, he then rushed me for an emergency ultrasound and then sent me to the hospital to prepare for your birth. I was terrified. It was too soon, you would be too small, your lungs wouldn’t be developed enough. I didn’t know what to expect from a c-section. Then it all happened. I was in the OR, the doctors were there, your daddy was there. Then at 5:43pm, you were there. You cried, you SCREAMED. And I cried. I was so happy. They cleaned you up, brought you to me so I could see you, then wisked you away. Daddy kissed me and told me he loved me and then followed you out. He was so proud. You were the light of his eye. His first born son. His little man man. His buddy. Then just as fast as you had arrived, you were takin away. Daddy knew all about what happened in the nursery, yet remained so strong for me. I needed him to be strong. Strong for me, strong for you. He just held me, for as long as he could, then kissed me goodbye when the NICU came for you. He was going to be with his little man. You and him had an exceptional bond. The first few days of your life, he was the only parent you knew. He held your fingers, rubbed your head, talked and read to you, stared at you, marveled over you, and sent mommy pictures of you. It was a special daddy/son bond. One no one will ever be able to replace.

I remember all to well, the day you earned your angel wings. Daddy wasn’t home. Many don’t know this, but I think God planned it that way. I don’t think daddy would have handled it very well if he had been at home. I don’t think I would have handled it very well, if he had been home. When I got you out of your bed, it was his side of the bed I layed your lifeless body on to perform CPR. Your crib was closest to his side of the bed, so he would have been the one to find you. He didn’t know the CPR so it would have been hard on him to not be able to do anything. I love your daddy, Michael-Evans.

Sometimes I look into his eyes, and I see the longing he has to hold you. I thought it was just me. But it isn’t. Your daddy lost a piece of himself when you died, just like I did. He lost his only son, his “little man man”, his best bud, his everything. He never got to see you alive in your last hours, never got to really say goodbye. I know I will never say goodbye, because your passing wasn’t goodbye.

I read in a fellow angel mom’s post, that there are no nights in heaven. So, baby boy, I will see you later today.

Love Mama

Dear my little man man,

Mommy decided to write you a letter telling you all about your time on this earth and what a great joy you brought to me. I am going to try and include as many details as I possibly can. It has been almost 7 months since you gained your angel wings.

March 2008, I found out I was pregnant. I was so elated. Mommy and Daddy had been trying to have another baby for several months and it had finally happened. You see, Mommy got very sick after your big sissy was born. When she was 6 months old, I was diagnosed with a rare blood disorder, ITP. It devastated our lives. I was very sick for a long time. Then I had some surgeries and it fixed the problem. After I was cleared to try and get pregnant, we tried. We tried everything. Then it finally happened. But then Mommy had a miscarriage. Our world crashed or at least we thought it had. We wanted that baby so badly. On April 22, they told me that the baby was gone and that my body had already began to reject the baby so it would go naturally. I was emotionally scarred. The doctors told Mommy not to try and get pregnant for a while. So we didn’t. But on April 21, the night before they told me the baby was gone, daddy and I made you. You were our miracle from the beginning. Mommy’s doctor told her that he had heard about women getting pregnant while still pregnant in medical school. But he had never seen it actually happen. It happened to your mommy. On May 22, I found out I was pregnant, with you. I was given the due date of January 27, 2009.

I was overjoyed and scared. I was so paranoid that I was going to lose you too. I didn’t know if I could handle it. The pregnancy with you was both easy and hard. In the beginning I was paranoid, but never suffered from the slightest bit of morning sickness. Then I began to show off a baby bump in the third month. I thought it was kind of early to be showing, but the doctors assured me that it was because you were my second baby. I blew it off and went back to enjoying being pregnant with you. Feeling your kicks and punches and rolls was the most amazing feeling. I remember when Dr. Baugh told me that you were going to be a big baby, maybe 9 pounds, and that I might have to have a c-section because of your size. I was excited. I like chunky babies. Then we had the sonogram to determine your gender. I was convinced you were a boy, because the pregnancy was so different than with your sister, Samantha. My gut instinct was right. I was going to have a little Donald Michael-Evans Thomas. I was so happy.

I must explain to you were I got your name. You see, you are named after all of the influential men in our lives. Donald is Mommy’s daddy. Your papaw had no sons and no brothers. So I named you as his namesake because you were his first born grandson. Michael is your godfather’s middle name. The name he goes by. Your daddy and he are best friends. Evans is a generational name on your daddy’s side. Your Paw, Daddy’s father, is named Joe Evans. Your great grandfather was Evans Thomas and your uncle is Joe Evans Jr. You were the first born grandson on that side too, so we named you Evans to carry on the family name. Thomas, your last name, is your Daddy’s last name. The name I took on the day we wed, and would have ended with your daddy, if you hadn’t been born.

The months of pregnancy seemed to come and go, until the last couple of months that I was pregnant. Mommy had an irritable uterus, which caused me to have contractions every few minutes that did not cause labor. I was in and out of the hospital being monitored for pre-term labor. It was a nightmare. The contractions hurt and I couldn’t get comfortable. Daddy tried everything he could to help me, but I just had to grin and bear it.

After I started going to the doctor every week, they noticed that I measured a few weeks further along on fundal height (height of uterus). The doctor ordered another sonogram. You were measuring a little overweight, so they told me, yet again, that you were going to be a BIG baby. At 34 weeks I was measuring 38 weeks. At 35 weeks I measured 41 weeks. At 36 weeks, Dec. 31, I measured 52 weeks. Mommy’s doctor thought I had a tumor on my uterus because I grew so much in only a week. So off to the sonogram room we went. The tech said that I had way too much amniotic fluid and that if they didn’t get you out soon, you would be suffocated. All of this because my uterus had grown to its maximum capacity and the fluid was continuing to build up.

The doctor sent Daddy and I to the hospital in preparation for your birth, 4 weeks too early. I must insert a sort of joke here. All throughout my pregnancy, Daddy told me I had to have you on Dec. 31 so that we could claim you on our taxes for that year. I kept telling him it wasn’t going to happen. That it was too early and that he could forget it. The day you were born, I told daddy that it didn’t look like he was going to get his wish. However, you had other plans and sided with your Daddy. You and he had a special bond and you took his side. You were born at 5:43pm, December 31, 2008.

After you were born, via emergency c-section, they wrapped you up and showed you to me. You were like an angel. So beautiful. Surely the most amazing baby I had ever seen. You weighed 6 pounds 7 ounces and were 18.75 inches long. You had the fieriest red hair I had ever seen.  You were so perfect. 10 fingers 10 toes. I kissed you on the forehead and you and Daddy left to go to the newborn nursery. Despite being born 4 weeks premature, you scored an 8 and 9 on your APGARS. While you went to the nursery, I was stapled up and wheeled into recovery. I was totally oblivious to the utter shock I was in for.

Just minutes after your arrival in the nursery, you stopped breathing and went into cardiac arrest. Your pediatrician did CPR, got you intubated, stabilized your heart with meds, and called for a transfer to the Neonatal Intensive Care Unit 130 miles away. He performed several tests on you including the newborn swallow test. Nothing went into your stomach and he could hear air in your tiny tummy every time the respirator gave you a mechanical breath. He attributed this to a possible connection of your trachea and esophagus. He also did an EKG to determine your heart rhythm. He heard and saw a heart murmur and gave you a shot of medicine in case it was something more serious. We would later find out, that shot saved your life.

As I was being wheeled down to my postpartum room, I noticed everyone in the hallway. Not down at the nurse ogling over your handsomeness. That was my first trigger that something was wrong. As we entered my room, your pediatrician and my obstetrician came in to talk to me. My heart began to race. Questions flooded my mind. I just wanted you. I wanted to hold you, look at you, smell you, comfort you, feed you, do all the things a mother wants to do for her newborn. All of those things were stripped away from me.        

You pediatrician started the world stopping conversation by telling me that you were leaving to go to the NICU and I couldn’t go. He told me that he suspected you had a connection between your esophagus and trachea and that it was causing you to not be able to oxygenate your blood properly. He also told us that you might have a Congenital Heart Defect, but he wasn’t sure. He told us about the EKG and the shot that he gave you just in case. Then my OB told me that when the flight team got you situated, they would bring you down so that I could see you. I couldn’t hold you, I couldn’t smell you, I couldn’t hear you, all I could do was touch your tiny fingers and pray that I would see you alive again. Daddy and his mom drove to be with you at the NICU and my mom and I stayed behind.

I was so out of it, so shocked, and so scared that the only question I could think to ask was “what do I do? I wanted to breastfeed.” The answer I got from the doctors was to pump and bring it with me when I was discharged. So I did just that, I pumped for you. I did it rigorously. Every 2 hours. Your Granny and I would wake up and pump. I would look at your pictures on my phone for inspiration. You were fighting for your life 3 hours away and I was doing the one thing I could do, pump.

After 3 days, I was discharged. Granny and I went to our house and got some clothes and a few other essentials and started on our journey to see you. We prayed so much over those few days. Little did we know that wouldn’t be all the praying we would be doing. While in the NICU, you were diagnosed with a Tracheal Esophageal Fistula (TEF). Your esophagus never touched your tummy. It grew down and closed before it got to where it was supposed to go. You had a third tube off of your trachea that grew to your stomach. So, in essence, when you swallowed, nothing happened and when the respirator gave you a breath, half went to your stomach. This caused your oxygen saturation to be lower than normal. You were also diagnosed with Tetrology of Fallot with Pulmonary Atresia. All those big words meant that there were several things wrong with your tiny heart. Both of these things required surgery. Neither could be done where you were.

At 6 days old, you took your first airplane ride, in a UBA medical jet to Washington DC. Daddy and I flew out the next morning to join you in our nation’s capital and the land of hope for us. The day after we got there, you underwent your first surgery to repair the TEF. The day of your surgery, Jan. 8, you weighed 5.5 pounds. You still had a head full of fiery red hair, the cutest toes and fingers, and the darkest blue eyes I had ever seen. Your surgery took about 2 hours and you pulled through like a champ. No complications during surgery and all was repaired. That gave us a shred of hope, but you still needed open heart surgery.

Over the course of the next 6 weeks, you battled several extubations, which led to reintubations, a collapsed lung, a severe leak from the suture site in your esophagus, several trips to the barium study, tons of pokes, and lots of medicines. All the while, you were receiving the drug that kept you alive, Prostaglandins. That was a name we came to know and to trust. This was also the medicine that you received in a shot at birth to combat any CHD that might have possibly been there. This was the shot that saved your life. It kept you alive until your OHS. During this time, you had an ECHO every day and made several trips to the cath lab. During one of these trips, your exact CHD was diagnosed. Double Outlet Right Ventricle with Pulmonary Atresia, a large VSD, a large ASD, and a leaky mytrovalve. You did not have a pulmonary trunk, the piece that comes into your right ventricle to take the blood to your lungs for oxygen. You had the pulmonary arteries and they were of normal size. However, because you didn’t have a trunk, your PDA was the only connection your heart had to your lungs. Prostaglandins hold this open. That is why it kept you alive. Had your PDA closed, you would have died.   

On February 10, 2009, a day that I will never forget, you underwent your open heart surgery. The first of many, we were told. You were a trooper. You defied all odds. Surgery lasted 4 hours, you pulled through. Everything requiring repair, received it. They were able to close your chest and you did not require ECMO (extended time on heart lung bypass) and no pacemaker. The next day, less than 24 hours later, you were extubated and taken off several medications. In less than 48 hours post-op, you moved to the floor out of the Cardiac Intensive Care Unit. I was overjoyed. My little man, who on the day of OHS weighed 4 pounds 12 ounces, was declaring to the world that he would live.

Then we were faced with our next obstacle, teaching you to eat. Of course, because of Mommy unrelentless pumping, you had plenty of the best milk to begin feeding on. You couldn’t nurse, but you definitely got the best milk you could get. You caught on very quickly and I imagine that if I had went almost 2 months without eating, I would catch on pretty quick too. Mommy was elated that her persistence in giving you the pacifier payed off. If I hadn’t been so adamant in you getting a paci, you wouldn’t have known how to suck. Eleven days after your heart surgery, we were discharged home. I was relieved to finally have my baby, but so scared because of all the care you required. Your big sissy, whom had not yet met you, was so excited that her baby brother was finally coming home.

The first few nights, I lied awake, paranoid. I would check on you every few minutes to make sure you were still breathing and because it felt so unreal to finally have you with me, where you were meant to be. When we arrived at our home, 1100 miles away from what had become our home; everyone was there to meet you. Your Nana, Paw, Papaw, Uncle Jeremy, Aunt Becca, Daddy Michael, Aunt Chasity, Stephanie, Andrew, and of course, your big sissy. She even had on her “I’m the big sister” shirt. After a few hours of everyone ogling over you, like they should have done when you were born, everyone went their ways and the four of us (Daddy, sissy, you, and I) were left to finally settle into some normality.

The next 3 months were filled with doctor’s visits (130 miles away), needle pricks, weight checks, medicine changes, food plans, etc. It was hectic, but all worth it when you were home every day with us. The doctors were concerned about your weight all the time. They never seemed to be pleased that you would only gain a couple of ounces at a time. You weighed 6 pounds 1 ounce the day you were discharged from DC on Feb. 21. They began having me add calories to the breast milk. Even more and more every time we went to the doctor, until finally you were at 28 calories an ounce. You would take about 3 ounces every 3 hours and that stayed the same. You never wanted more. They would tell me to make you eat more, but you refused and I wasn’t going to force you to take it and risk aspiration. Then on May 21, you were admitted to the PICU (130 miles away) for dehydration and failure to thrive. At this time, 5 months old, you weighed 7 pounds 2 ounces.

You were in the PICU for 2.5 weeks all together. They stopped your lasix and pumped you with IV fluids. You got double pneumonia and ended up on Bi-pap. They also put in a NG tube for feedings and told me, your mom, that I wasn’t feeding you and that they would control that now. I was mortified and extremely ticked off. So I told them that there was something wrong with you and that if this was how they would finally figure that out, then great. They finally got my point when after receiving 1 ounce an hour at 28 calories an ounce, you lost a pound. It wasn’t me. Being so upset that they would dare accuse me of not feeding you, I told them that maybe I should get DHS involved because they weren’t feeding you, they got the point and no more accusations were made.

They put in a broviak because you had such small veins and they could keep IV access. I was ok with the broviak procedure. That was until they intubated you wrong and put the broviak in wrong. The wrong intubation caused you to go into respiratory distress and they could no longer feed you. They had also performed an ECHO that showed severe structuring of the artificial trunk they placed in DC. You needed a heart cath and soon. But because you were so small and they couldn’t feed you, they wouldn’t do the cath.

By this time, I was fed up with them playing the guessing game when it came to your care. You needed a G-tube placement and a heart cath, and they would do neither. I demanded a transfer back to DC and off we went. We got to DC on June 6, a mere 5 months since you went the first time. You were so very ill and so very tiny. The first thing they did was get you a g-tube so they could feed you. This was a surgical procedure. While in surgery they took out the broviak that no longer worked because of wrong placement. The broviak had quit working 3 days before we were transferred. However, they refused to take it out stating “we aren’t using it, let DC deal with it”. Needless to say you weren’t going back to that hospital.

Upon removing the broviak you became septic. Meaning the broviak, that the other hospital refused to remove, had gotten infected and the infection was now in your blood. This caused you to have a fever of 106 degrees. They gave you a dose of Tylenol and within 4 hours your core body temp was 88 degrees. You also started having bradiacardic episodes (low heart rate). So you were moved into the CICU for closer monitoring. You were slowly improving and there were talks of you moving back to the floor after a few days. But just like always, you had other plans. At 1:50am, while I was asleep at the Ronald McDonald House, you went into cardiac arrest. It took them about 20 minutes to get you completely stabilized. They called me after you were stable and granny and I headed to the hospital.

Your big sissy went with us to DC the second go around, so granny stayed in the waiting room with her because she was asleep. I came to the back, to see you. A sight, I shall surely never forget. You looked lifeless, pale, a slow heart rate, no movement. I would venture to say, you looked dead. I was so overwhelmed with emotion I just stood there and cried. Then it all happened again. At 4:00am, while I was standing at your bedside and you were getting an ECHO, I literally watched your heart stop. It was so hard to move back and let them work on you. This time was worse than the last. It took almost an hour for them to get you back. All the while, I was crying and talking to you. I would say “come on baby boy, do it for mama, don’t do this to me, bring that heart rate up, come on little man man”. One of the techs sat with big sissy so granny could be with your Mommy. I didn’t leave the room. I couldn’t. I wanted to be there, letting you know I was there.

After they got you stabilized, you were moved to a room closer to the nurse’s station. At 8am, after much prodding by your nurses, granny, big sissy, and I reluctantly went to the RMH to shower and get some food. We were back by 11am. As soon as we arrived back at the hospital, I was in your room. I didn’t want to miss a moment. I didn’t want to fathom not being there if it happened again. I had a right to feel that way, because it did happen again. I was standing at your bedside talking to you. I was holding your finger. Your eyes rolled back in your head and I knew, you were gone.

At 2pm, you went into cardiac arrest again. This time your heart rate was 2bpm. They called the code and I moved back as a plethora of doctors, nurses, and techs began the resuscitation process, yet again. This time, I really thought you were gone. They worked and worked and worked and worked. 2 hours, 2.5 hours, 3 hours…. Nothing. One of the nurses told the doctor that you were gone. When I heard it I literally fell. I was sitting down the whole while, but I felt as if at any moment, my life would surely end. But that doctor, that amazing man of wisdom, said “no, he is still in this, get me the Doppler” all was silent. Beep, 5 seconds, beep, 7 seconds, beep. “he has a heartbeat” “rapid deployment now”, orders from the doctor being shouted across the room. I held onto “he has a heartbeat”. But then I was confused. What was rapid deployment, what did that mean? I soon got my answer as I was ushered outside the doorway to watch, my tiny, lifeless, helpless baby; being rapidly deployed onto ECMO. Heart lung bypass, life-support. Without it he was dead. After he was stable, I was allowed in to see my black, lifeless, 5 pound baby laying there with tubes coming from his neck housing your blood. To see you completely still with one eye half open and rolled back into your head covered with red hair. That tiny quiver in your chest that we could see because your sternum had been opened, that told me you were still in there fighting. Your heart never completely stopped.

I have to honestly say, you looked you best that day. You spent 18 days on ECMO. After 6 days, your kidneys and liver failed requiring constant dialysis. You also had to go to the cath lab while on ECMO and they caused a bleed and your lungs filled with blood. The doctors took daddy, granny, and I into this tiny room, a consultation room. We knew what we were about to hear. The words we had dreaded were coming into fruition. “Your son is by far the sickest baby in the CICU. Possibly the sickest in the entire hospital. He has sustained serious damage to his lungs and kidneys. Some of which may be irreversible. Right now, he only has about a 2% chance of successfully decanulating off of ECMO. We need you, as a family, to decide if it is worth continuation of ECMO.” Wow. I was utterly speechless. I just cried, I did not want to let you go yet. I wasn’t ready. No one was.

So we did what you had taught us to do in your 6 months, we prayed. We got down on our knees and busted Heaven open looking for a miracle. We decided to let God determine your fate. For he holds the key to life and death in his hands. He held you in his hands, we were sure of it. We left you on ECMO. The next morning, June 20, your right lung opened and started getting air into it. A few days later, the left lung opened. You were now getting the ventilations into both lungs. You fought. On July 1, 2009, after 18 LONG days, you successfully came off of ECMO and dialysis. It was one of the happiest days of my life. My baby boy had survived. You suffered a stroke while on ECMO and lost your hearing, but you were alive. July and August were months of ventilators, medicine, 3 trips to the cath lab, 2 broncs, food through your g-tube, finally holding you again, physical and occupational therapy, many new medicines, new ways of doing things, and many many smiles.

Finally on Sept. 9, 2009, you were discharged after being in the hospital nearly 4 months. We flew home to Mississippi the next day. Your big sissy was already home because she had to start school. Your Daddy was so excited because he had been gone back home for a while. He flew to DC to meet us at the airport, then flew home with us.

Life after you came home was so different than before. Everything had to be sterile, no animals, you had a picc line for IV meds, a gj-tube for feedings, a feeding pump that ran continuously, a nebulizer, 7 specialists you had to see, home health nurse 3 times a week, physical, occupational, and speech therapy 3 times a week, and the limited movement you had on the left side. But boy was it sure good to have you home. I adjusted pretty quickly to having to do something every hour. Whether it be giving you a med, changing your feeding bag, giving you a breathing treatment, etc. I enjoyed every minute that I still had with you.

October 4, 2009, your Daddy left to go to Orlando, FL for training for work. Granny stayed with us to help me with you and big sissy. He called at 6pm and said he had just gotten checked in to the hotel and was going to get something to eat. It was time for your feeding bag to be changed so I did that and an hour later gave you one of your nebulizer treatments. I got big sissy in the bathtub and out and granny took her to bed. At 10pm I gave you your second breathing treatment and took a picture of you. You were holding onto the mask that delivered the medicine, I thought it was so cute. I turned on your angel care monitor (alarms if you stop breathing for 10 seconds) and climbed into bed to catch a few hours of sleep before it was time to get up again. At 1:00am, Oct. 5, your feeding pump went off indicating that you needed a new bag of milk. Granny heard it too so she got it and hooked it up. You smiled at her and she went back to bed. I was awake but not fully. I drifted back to sleep and was awakened at 1:15am by a sound I had prayed to never hear. Your monitor was going off. I immediately shot out of bed and checked on you. You weren’t breathing and no pulse. I screamed for granny and moved you to a flat surface and started CPR. I called 911 and they sent an ambulance. When the paramedics arrived, I gave them a brief history of your medical past. Then I lost it. I was not longer in control. Up until that point, I hadn’t cried, hadn’t panicked, hadn’t lost my train of thought, I simply did what I was trained to do in the hospital. After the control was taken away from me, emotions and panic set in. Granny had called everyone and Daddy was leaving the hotel to go to the airport to get a flight home. Daddy Michael and Aunt Chasity came over and Chasity stayed with your big sissy and the rest of us headed to the hospital. At 2:43am, Oct. 5, 2009, the declared you deceased. I experienced, what felt like an out-of-body peace. You see, while the paramedics were getting you ready to go, I prayed and asked God to carry me through this because holding His hand was no longer enough.

I won’t say to you that it didn’t hurt worse than anything I had ever experienced, that would be a lie. But to say to you that your passing was the worst thing that ever happened to me would also be a lie. I still, to this day, long to hold you, to touch you, to see you, to smell you. But you are no longer hurting. You will no longer spend months in a hospital. You will no longer have to endure pokes, tests, or surgeries. You are now pure and perfect. You were made whole. I cannot say to you that I don’t miss you every second of every minute of every day, but it makes it a lot easier knowing that one day I will hold you again.

You gave me the inspiration, the hope, the endurance, the motivation to strive for a better and right relationship with Christ. Because of your suffering here on earth, I will not suffer eternally. One day, I will see you again, I will hold you again, and I won’t hurt anymore. Thank you baby boy, for being all that you were to me. You have saved so many in your short 9 months than most do in a lifetime. I couldn’t begin to fathom the number of people you touched and will continue to touch through your story. I love you with all of my heart and I miss you terribly.

Love, Mom