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Healing Matthew

Cape

A photo-diary of Matthew’s journey from birth to transplant   June 6, 2013 Matthew, at 8 days old, has undergone 2 rounds of hemodialysis and 1 3-day round of prisma dialysis, or continuous dialysis. His body is puffy after having his blood filtered.     June 19, 2013 Finally, near the end of June, Matthew…
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Bracelet Fundraising

Silicone bracelets

Silicone bracelets

As an extension of our fundraising efforts to help support the cost of Matthew’s upcoming liver transplant, we’re now offering silicone bracelets with your favorite hashtag #HealingMatthew on the front and “A.S.A.P.” on the back. These bracelets are for sale in the Square Marketplace for $3.00 each. They come in three sizes, Adult, Youth, and Toddler (8″, 7″, and 6″, respectively) and are an awesome way to show your public support for our son. You can also purchase them directly right here. We are still maintaining opportunities to give directly to the family via PayPal, as well as tax-deductible donations via Matthew’s HelpHopeLive page.

If you’d like to know more about the design, here you go!

Why Grey?

The color grey was selected because of Matthew’s mascot, affectionately called ‘Hospital Elephant.’ Hospital elephant was a gift Matthew received while still in the intensive care unit at the Children’s Hospital of the Kings Daughters. It’s been a favorite toy of Matthews ever since, and joins him on all his major appointments, as well as making frequent appearances during physical and occupational therapy sessions. This is the same reason for the elephant for those of you joining Team Healing Matthew for the upcoming CHKD Run for the Kids.

Hospital Elephant

Hospital Elephant

Why A.S.A.P.?

Two reasons, one silly, one not: “ASAP, whatever that means… probably ‘Act Swiftly Awesome Pachyderm.'” We’re big fans of Horton Hears a Who in this house, and it was on regular rotation for Matthew’s sisters around the time he was born. The idea of ‘as soon as possible’ takes on a completely different meaning in the context of this disease. From the moment of first suspicion that something was wrong, everything was a massive rush. Getting Matthew from the birthing center to the children’s hospital, as soon as possible. Getting everything signed to authorize hemodialysis, as soon as possible. Interpretation of lab results determining whether one treatment or another was effective, as soon as possible. And ultimately, hopefully, a life saving liver transplant, as soon as possible. Early detection, rapid treatment, and fast acting nurses and doctors saved Matthew’s life, and the ‘A.S.A.P.’ is a reminder of just how critical those fast thinking, fast acting moments can be.

We hope to offer additional Healing Matthew centered items in the near future, including reprints of the artwork produced for last October’s fundraiser ‘Music for Matthew’ in Raleigh. Thank you for finding us and following us here, on Facebook, and Twitter, as well as on Instagram via the hashtag #HealingMatthew. We can’t imagine how we would navigate this road without the moral and material support we’ve received from friends and loved ones.

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A Note from the Doctor

Music for Matthew - Tir Na Nog Irish Pub - Raleigh, NC - October 20th

Music for Matthew – Tir Na Nog Irish Pub – Raleigh, NC – October 20th

Six months ago, we held a fundraising event in Raleigh with the help of some good friends, a slew of artists and great bands, and an awesome venue.

At the time of the event, Matthew had been listed for liver transplant under status 1B for a little over a month. We had every expectation, as did our transplant team, that he would be transplanted any time. Six months later, we are still waiting, but Matthew is growing and working hard in physical, occupational, and speech therapies.

A lot has happened since that time, including a false transplant call, a stabalizing in his feeding schedule, and the addition of an in-home nurse.

A lot has changed, but a lot also hasn’t. With the addition of new doctors, new therapists, and too many organizations to mention, we have maintained constant contact with our affectionately termed ‘Dr. V.’ The good doctor has been with Matthew since his transfer to the neonatal intensive care unit, throughout his initial hospitalization, and has put in many a late night / weekend hour in treating Matthew. At the time of the fundraiser in October, she asked us to share something with the crowd. Here is that note:

Hi all – this is Dr. V, one of Matthew’s doctors at CHKD. Just wanted to thank you all for taking the time to come out in support of our little man and his amazing family. Rusty will likely be talking about Matthew’s disease, OTC deficiency, with you tonight, and the emotional and financial toll it inevitably it has on families. Your presence and encouragement tonight is very much appreciated, especially by his medical team.

Collectively, rare diseases are not rare. Our ultimate goal is to continue to make their existence known, such that research can further improved treatments and therapies. My sincerest wish for Matthew, as well as all our children for whom we care, is that they may live the lives for which they were created. We love them very much.

Family

If you’d like to help CHKD, join us for the RunWalk for the Kids on June 14th. As always, you can help out our family by making donations here.

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Door Number 3

This past Monday, we made our monthly trip to DC. Once a month we trek up there to meet with his transplant coordinator and one of the doctors on the team and they do the same thing that everyone else does: weigh, measure, take vitals, ask if his meds have changed. We don’t mind this trip, though. With the exception of the traffic, we enjoy meeting with his team and we enjoy the cupcakes that we get after each visit.

Here is  a little known secret, though. This time, Rusty and I planned to have a confrontation of sorts with the team. This time, we planned to leave that office with a scheduled date for transplant.

Let me back up a bit. We are fairly connected with other UCD families and parents of transplanted children. We also know how to work the website that manages the transplant list. And so, we also know that Matthew has been listed for a really long time. In status 1B terms, for an eternity. We’ve heard that 1B children average a wait of 36 days. Matthew is well past 90 days.  We’ve made contact with parents who were transplanted within a week, and those were listed a lot lower than Matthew. It is draining to always feel like this life changing phone call is going to come at any second. The longer we go without the call, the less ready we are and the more we feel like it is never going to come. God has protected Matthew for these last 6 months. He has prevented any ammonia spikes. You would think that this would give us peace and help us to be patient, but it doesn’t. For us, it feels like we are playing Russian Roulette with his health, He can’t keep facing dangerous things and come out unscathed indefinitely. One day soon, his ammonia is going to spike. Our fear isn’t that his ammonia could go up. It is that when Matthew spikes, he spikes high and fast, and it is very difficult to get back under control. Our fear comes from hearing doctors say that he won’t survive another spike. We fear that the longer we wait, the harder it is going to be for him to ‘catch up’ developmentally. We feel that there are a lot of things that we are told  ‘we can tackle after transplant’, and we just don’t want to put those things off any longer.  So, fueled by fear, we have been having Rusty screened for being a live donor for Matthew. Rusty’s surgeons have been very pleased with his test results and have said that his liver is perfect for donating.   Frustrated as we are, we agreed that if a liver call hadn’t come by this months visit, we would ask to schedule the live donor transplant.

I’ve got to be honest. The thought of having my son and my husband on the operating table consecutively wasn’t very exciting. But how long do you let your son linger in danger? Rusty felt like he had to get himself screened and the urge to vomit at the though of it (Which is how I felt when it was first brought up) had left, leaving me ‘okay’ with the idea. So, there we were, ready to put Rusty through an (up to 8 hour) operation followed by Matthew’s (up to 12 hour) transplant.

On the drive up, we brainstormed our ‘plan of attack’. There were things that we needed answered to verify our fears. Was Matthew being passed up? Had children jumped ahead of him on the list? Was his injured brain causing potential livers to go to kids whose brains were whole? What parameters were being used to screen livers? Why were we passing up livers? Can the parameters be loosened at all?

We got our answers, and without the anticipated confrontation too. It is because of his brain injury that he is listed so high on the transplant list. They have every hope of preserving his brain function and giving him a fair chance at life. No one is jumping ahead of Matthew. At 1B, he is listed nationally and livers are ‘handed out’ based on the amount of time that you have been listed. They want to give Matthew the best chance possible at a smooth transplant and recovery, and so, are passing up livers with questionable health histories, livers that were deprived of oxygen for an extended period of time. We are now looking at livers from larger cadaver donors, now that Matthew has grown so much. The only things left to loosen are looking at split or partial liver donations. His best chance at survival is with a whole liver, and since he is holding steady and healthy, they want to continue to hold out for a whole liver. They are just as surprised as we are that the call hasn’t come yet. In fact, they said they haven’t done a transplant in months, but Matthew isn’t competing with anyone else in their center for a liver. The next one up is his!

We had a good, informative talk with his doctor and we left once again feeling sure in our path. We are going to continue to wait for a liver for Matthew. We both feel that this is what God wants us to do. We feel it is what is best for Matthew. It stinks. I’d love for him to be past this zero protein diet, but I’m thankful that he has maintained his health, that he continues to grow like a weed, and that he is no longer vomiting all over the place (have I mentioned that yet? I may need to post about that soon, if not).

Another Check Up

Another Check Up

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Happy Big Little Things

The Crib

Before Matthew was born, we had his room painted, his dresser was set up and filled with clothes and diapers. We had a bassinet and a rocking chair, but no crib. Then everything happened and we weren’t sure if he would survive. I had lots of horrible thoughts, like “It’s a good thing we didn’t buy a crib yet” and ” I wonder if we can return the car seat?” When Matthew came home he had an NG tube, which meant that he couldn’t lie flat at night because he had to receive feedings in his sleep. Several months later, Matthew had a G-tube put in, which meant he was able to lie flat when eating, but we were struggling with vomit problems and were afraid to let him lie flat or be in a different room. On December 29, Matthew turned 7 months old. A few days later he spent his first night in a crib! It was magical. He slept so much better than he had been sleeping in the little bed in our room. He looks so cute sleeping in that crib. It fits him and we are ecstatic that he is content and resting.

Self Soothing

Matthew has always been a crier and he has never been one to stop crying until he’s been rocked or swayed or bounced. Last night, he woke up at his usual time. I usually change him and rock him for the next hour or two, and then he sleeps for a couple of hours before we do it all over again. But, Rusty and I were reading our Bibles, so we let him fuss for a few minutes until we had finished our reading. He never really even cried. He did a little fussy ‘talking’ and then got quiet. AND he slept straight through until 6:00. It was a glorious full night of sleep!

Today we were coming home from a lunch date with Rusty at Matthew’s nap time. He fell asleep in the car and woke up when I carried him into the house. I thought I’d give it another try. I put him in his bed and left the room. He talked to himself for less than a minute and then slept for hours. I love  my big boy!!

By Mouth

He has suffered from a little bit of an oral aversion. A tube down your throat and constant vomiting will do that to you. We’ve found him a couple of times in the recent weeks with his hand to his mouth. He likes to suck on clothes, blankets, or a knuckle. But no food. Last night I got him to easily and happily take some medicine by mouth. He did it again today, too. He’s also been smoothly taking baby food and today he tried a puff. Don’t tell anyone, but I gave him an apple too. Both girls loved to gnaw on an apple when they were little, so last night when the girls and I were eating an apple and I saw him watching me and opening his mouth every time I took a bite, I decided to let him try it. He didn’t eat it, but he also didn’t flinch or cry. He was okay with having food in his mouth and that  is huge.

Rolling

Matthew has gotten really good at rolling over from his belly to his back. When he’s put on his belly, he can hold himself up for several minutes. He has learned to tuck his arm under and roll completely onto his back, quickly and smoothly, to the right or the left.  He’s also learned to keep his head tracking with his body when rolling. Before his body would roll and then his head would follow later. It’s a little thing. But it is huge for us.

 

The past few weeks have brought big little changes in him. We are excited about his progress. We are excited about all that he’s already accomplished. Every time we feel like he’s behind or get sad about what he can’t do, we remind ourselves that it was predicted that he would be a vegetable if he successfully came out of his coma. He stomped right over that prediction. He moves. He smiles. He recognizes faces and voices. He’s learning to roll and to sit up. That little boy is a blessing and a miracle; a constant reminder of God’s grace and  provision, His might and His love.  I am so very proud of my Matthew and so very thankful to my God.

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Our Christmas Miracle

Matthew had a rough week last week! Sunday his vomiting rose to a new level, as did his unhappiness. The poor baby was just irritable all week long. He didn’t want to be held. He didn’t want to be put down. He was tired and wouldn’t sleep. By Wednesday, I noticed a significant decrease in the number of diapers I was changing and that very few of them looked wet at all. We needed to head into the hospital to re-do some of his lab work (to keep him up to date on the transplant list), so our super Dr V had us stop by to look him over. Everything looked fine and his labs didn’t show any signs of dehydration. We went home. That night I slept  three and a half hours. The rest of the night I was trying to console a very unhappy Matthew. The next night I slept for one hour and only because Rusty held him for that hour. The next night, I slept for 40 minutes. Poor Matthew just kept crying. No amount of rocking or swaying or bouncing or swaddling would calm him. At 5 AM, I picked him up and noticed his hands were hot. After checking his temperature 4 times to confirm that I was taking it right, I woke Rusty up and told him that Matthew had a fever of 103. Of course we panicked. We’ve been told that fevers are dangerous. Poor Dr V got an early morning text and as we waited for her to respond we got ready to head to the hospital. Dr V  suggested a one time dose of Tylenol (Tylenol is digested by the liver and we don’t want to irritate his liver) and to wait an hour to see what happens. So we did. His fever came down a degree in that hour. We waited until 8 for our pediatrician’s office to open and then Dr V  called to set up an appointment for us to go in and get Matthew checked out. We went in at 9:10 and Matthew’s fever had already risen to 105. His nurse panicked and I quickly messaged Dr V, who again swooped in to keep everyone calm. She called the office, talked with the doctor, and they worked out a plan. In office tests were run for the flu and for Strep and Matthew was given a dose of Motrin. The tests came back positive for the flu and we were sent off to the ER at our favorite hospital. I spent the entire day in the ER. Matthew was so dehydrated that they had to push 300 ml of IV fluids through him before they were able to start the IV pump. His condition requires that multiple blood samples be taken to make sure that everything stays in check. For hours, he cried. Then finally he began to settle. And, as is typical of an ER, every time he settled someone would come in to check something or give him something. Around dinner time, he was admitted to the hospital and moved up to a room. For most of the day, his fever hovered between 101 and 102, but shortly before bed it finally broke. He stayed in the hospital until Sunday, but his fever never came back up and he continued to remain hydrated. The doctors knew of his vomiting problems and were hesitant to let him out of the hospital until they were sure that it wouldn’t cause him to become dehydrated again. Consequently, they started him on continuous feeds. It worked well for a while, but at 10 hours in he vomited. Rusty tells me it was ugly. The nurses were nervous. He apparently shot 6 feet out of the bed while lying down. But, since his numbers were all stable and Dr V approved, they let us go home.

So. Here is the miraculous part. During it all, during a week of diarrhea and increased vomiting and then a day of a fever, Matthew’s ammonia never rose above a normal level. In fact, the highest it got was in the 30’s. As if that wasn’t enough, Matthew hasn’t vomited one time since leaving the hospital.

102

God has blessed us time and time again. As we leave 2013 behind us, we have so many things to be grateful for.

For the pediatrician in his birth hospital that caught the first signs of Matthew’s elevated ammonia.

For the NICU nurse who worked her butt off for 8+ hours trying to pull him out of his ammonia induced coma and settle him safely into a medically induced coma

For Dr V and the DC team who collaborate to manage Matthew’s care

For the team of PICU nurses who ensured that he was under their watchful eye 24/7 for over 3 weeks.

For the many friends, family, and strangers who have given financial and spiritual support

For Matthew’s amazing sisters, who dote on him like he’s their little baby doll, who, when they wake up, ask first where Matthew is; who won’t go to bed without telling him good night and wishing him sweet dreams.

For 7 amazing months with Matthew, watching him grow and break boundaries, for 7 months to love him.

For getting through our first fever without any further damage to Matthew’s brain.

We look forward to 2014, to many more miracles, to a new liver and a chance at a long life for Matthew.

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How?

Over the years, I have seen many special needs children cross my path: at the grocery store, the park, the mall, in my classroom. If your eyes are open, you see them. I could never help but ask myself “How do they do it? How do those parents deal with a child that needs that much attention?” Granted, I had no idea what a special needs child required in terms of care, especially in comparison to a ‘normal’ child., but it seems like it would be a lot. I couldn’t help but feel pity for them and be thankful that I didn’t have a child like that because I just couldn’t handle it.

Soon after getting married, Rusty and I took a marriage bible study course, trying to start our marriage off on solid ground, on godly principles. I remember one night, the wife of the group leader saying something to the effect of “Don’t ever tell God, ‘I can’t handle X’ because X is sure to come your way.” For her, it was infidelity. For me, I immediately thought and then quickly pushed away “a special needs child.” Now, I’m not completely sure that this is really how God works. But, I do know, that He pushes us beyond what we think we are capable of. I never thought that I would be able to handle what has been handed to me. I honestly don’t feel like I’m handling it at all. And, truly, there are days where I do everything that I can to avoid doing what needs to be done for Matthew, because I feel like if I’m not mixing bottles or measuring medications then he’s ‘just a normal baby’ again.

So, ten years after that bible study group, I find myself in the grocery store.. at the park.. in the mall.. in church, and I’m getting that same pity filled look. “Poor her. I wonder how she does it? And with two other kids, too!” I’ve even been asked how I ‘do it’. I’ve spent a good long time trying to figure out how to answer that question. How do I get by? How do I function and take care of the girls and the house and all of that other day to day stuff? The best that I could come up with was, “I don’t have a choice. I just do what needs to be done.” Which is true, but it isn’t the entire truth.

This past Sunday, our Pastor introduced his sermon with an excerpt from a Charles Spurgeon sermon. I couldn’t tear myself away from the screen. The words he was speaking were the words that I had been searching for. How do I do it? I’ll tell you. Immanuel. God with us. It is God alone, that has kept me standing. God alone, that has kept Matthew stable. God alone, who carries each and every special needs child and their parents, whether they know it or not.

Here is the video that was shown last Sunday: God with us. It is less than 4 minutes long. Watch it. It is powerful.

That video made me wonder about the rest of the sermon. I did a little digging and found the entire sermon. It’s LONG. If you want to read it you can find it here. Below are a few excerpts from that sermon that are still echoing around in my head. Little reminders of how I manage to get through each day.

“Believer, He is God with you to protect you! You are not alone, because the Savior is with you! Put me in the desert,
where vegetation grows not—I can still say, “God with us.” Put me on the wild ocean and let my ship dance madly on
the waves—I would still say, “Immanuel, God with us.” Mount me on the sunbeam and let me fly beyond the western
sea—still I would say, “God with us.” Let my body dive down into the depths of the ocean and let me hide in its caverns—
still I could, as a child of God say, “God with us.” Yes, and in the grave, sleeping there in corruption—still I can
see the footmarks of Jesus! He trod the path of all His people and His name is still, “God with us.”

“Immanuel.” It is wisdom’s mystery, “God with us.” Sages look at it and wonder. Angels desire to
see it. The plumb-line of reason cannot reach half-way into its depths. The eagle wings of science cannot fly so high and
the piercing eye of the vulture of research cannot see it! “God with us.” It is Hell’s terror! Satan trembles at the sound of
it. His legions fly apace, the black-winged dragon of the Pit quails before it! Let Satan come to you suddenly and do you
but whisper that word, “God with us”—back he falls—confounded and confused! Satan trembles when he hears that
name, “God with us.” It is the laborer’s strength—how could he preach the Gospel, how could he bend his knees in
prayer, how could the missionary go into foreign lands, how could the martyr stand at the stake, how could the confessor
acknowledge his Master, how could men labor if that one word were taken away? “God with us,” is the sufferer’s comfort,
is the balm of his woe, is the alleviation of his misery, is the sleep which God gives to His beloved, is their rest after
exertion and toil.
Ah, and to finish, “God with us” is eternity’s sonnet, is Heaven’s hallelujah, is the shout of the glorified, is the song
of the redeemed, is the chorus of angels, is the everlasting oratorio of the great orchestra of the sky! “God with us”—

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Sisters

I’m pretty sure that when Matthew gets bigger he is going to have a Love-Hate relationship with these two crazy sisters of his. It is incredible to see the love that they have for him. The poor kid has 3 Moms!

Ruth acts more like a protector than anything. On occasion, she will ask to hold him, but more often than not, she is looking out for him.  When his pump beeps that obnoxious beep at the end of his feedings, Ruth shouts from wherever she is in the house “Matthew’s done!”, as if he’s a roast in the oven. If he’s crying, she runs like a crazy person through the house shouting “Matthew’s crying! Matthew’s crying!” until she makes eye contact with me and knows that I’m on my way to save him. When he wakes up, she is the first to sound the alarm, “Matthew’s awake!”

hospital

Erynn acts as his comforter. That sweet little boy knows her voice and settles down when she speaks to him. If he’s crying, Erynn will come over and stroke his head while saying “It’s okay buddy. It’s okay.” And, almost every time, it settles him. He turns to her and smiles. And, she just keeps talking to him. “Don’t be sad buddy. I’m right here.”watchful

When he is upset, she wants to understand why he is crying and what she can do to help. She wants to hold him and sing to him every day. If it’s time for him to eat, she wants to help. She tries to give him a bottle. She helps put his medicine into his NG tube. Erynn  can’t wait for him to be bigger so that she can teach him how to roll in the grass and to play with the trains and how to go down the slide and swing. She’s going to read him stories and they are going to build things with the LEGOs together. Yesterday, she was telling me all about how much he’s going to love working in the yard with us. “We can all plant plants as a family!”

feeding

He isn’t going to be getting into things as a toddler because they are going to be right on top of him, making sure that he plays safely. He won’t be sneaking out of the house or off with a friend as a teenager, because those girls will be dragging him back him by the ear. They have so much love for him! They understand, somehow, that he’s different. But at the same time, they see his differences as a temporary thing; as something that he’s going to grow out of. I love that about them. They are going to give him every opportunity to be everything that he can be.

They have big plans for him. I can’t wait to watch him grow and play with his sisters.

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Music

When life gets you down, there is usually something that you turn to to help you through it. Some turn to alcohol. (Your liver would like to have a talk with you.) Some turn to smoking. (Your lungs would like to have a talk with you, but can’t.) Some escape in a book. (Your brain thanks you.) Some eat. (Your tummy may or may not be thanking you. What are you eating?) When life gets me down, I like to turn to music and exercise. I pick up the heavy weights when I’m particularly irritated by something. Music, however, music has a way of telling the story of our lives. Music is therapy.

I like to think of myself as a musical person. Not that I can sing or play an instrument. Those genes were passed on to my brother. But, I still associate music with events in my life. In college, when I was driving to campus for an exam, I would pop in a Beatles album. I love the Beatles. Singing along with them helped me to not stress about the test. It gave my mind a happy place to go while I drove. After the birth of each of my children, I’ve sang The Beatles “I’ve just seen a face” to them. After all, I had “just seen a face. I can’t forget the time or place where we just met.”

With Matthew, I prayed and read my Bible, but I found the most comfort in music. I’ve always disliked Christian Radio. It was just too cheesy. I wanted to hear the songs that I sing in church.  I turned to YouTube and found that a local radio station played a few songs that I like pretty regularly. Between the two, I was getting the comfort that I desired. There are a few songs, though, that I associate with the time Matthew was in the PICU, more than any other.  The first is Leelands “Carried to the Table.” The lyrics hit home. I felt broken. But I also knew that I was cradled in His arms. Oh the familiarity of knowing that you aren’t worthy to be in His presence and yet He doesn’t leave your side!

Another song that plays over and over again in my head is Hillsong’s “Cornerstone.” It’s a nice reminder that there is a purpose to it all. It is helpful to sing to God that my hope is in Him, that He is my strength through the storm. He meets me in my car, while I’m singing loud and off key with the tears flowing and tells me “I’ve got you Julie. Rest. Continue to trust in Me alone”

The final songs on the playlist for this stage of my life are Keith and Kristyn Getty’s “In Christ Alone.” and Jeremy Riddle’s  “Sweetly Broken” I’ve got a wonderful husband and loving, supportive family and friends, but it is God who is carrying me through this journey. He is my cornerstone. He is my comforter.  I am sweetly broken, clinging to the cross, lost in God’s love. These songs reminds me what it is that I’m working towards and Who is waiting for me at the end.

And so, I sing on in my off key voice, with my children saying “Oh Mommy. It’s just on the radio” worshiping the God who called me, who loves me, and who carries me through it all.