Angelina Castleberry

@angelina-castleberry | contributor
Angelina is a believer, wife and mother of six (five girls and one handsome little man). Her now 4-year-old boy/girl twins are miracle preemie babies. Her son is a kidney disease survivor who is now recovering from his kidney transplant. Angelina is blessed beyond measure. She’s been inspired by so many people helping her family in their time of need. She believes every moment of life is a miracle. She is now sharing encouragement and hope to others and is writing a memoir about her experience, spiritual journey and sharing God's Miracles. Follow her life's journey on her blog, She Believed She Could Believe.

Life After the NICU Might Not Get Easier, but I’ll Get Stronger

Being a mama of six kids, I feel like I just can’t cry. I don’t have the time to sit and cry. No matter what is going on, no matter how bad things get, I can’t cry. If I cry, I break. If I break then I’m done. And when I’m done, the day is done for me and for everyone else. And now that I am home alone with the kids, I can’t break. I am all they have. So I feel like I really can’t cry. I was talking to another NICU mama the other day. Her son was in the NICU a few years back. And her son went through everything my son is going through now. We talked about how other parents don’t always understand, such as parents who have never lived in the NICU for weeks and months at a time, or have never made life insurance and funeral plans for their child, or have never wondered and prayed and held their child with the thought that this may be their child’s last breath, heartbeat, day and night on earth. I asked her if it gets easier as time goes by. And she chuckled and said no. I hoped she was joking, but she was serious. She shook her head again and said, “It never gets easier.” She said, “You, as the mother of a warrior, will get stronger.”I think I may have had a slightly sad look on my face because she then started talking about how it is an amazing journey. Lots of good days. Lots of fun days. Lots of days where he is not sick. But the times when he is sick days or weeks at a time become familiar. They even become a routine of some sort. I told her that I already have those days, days where there is no way for me to comfort him. She continued saying that the wait for a kidney transplant can be less of a roller coaster than the NICU. But the transplant roller coaster can have higher drops and scarier turns. She said she learned to just hold on for dear life. She said that as time passed, as the days flew by, as the weeks and months continued… life became a routine. Life was still hard, but she learned to adapt. She learned to read her son and know if he was going to have a bad day or a good day. Despite of how hard life was, she got stronger. Life stayed the same. Nothing changed. Her son was sick and might not get better. My son might not get better. Currently there is no cure for kidney disease, and getting a transplant might be more like being in remission. But her son got stronger. She got stronger. And I know I will, too. I know my son will, too. It will never get easier. You will get stronger. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines. Lead photo source: Thinkstock Images

No One Told Me What It Was Going to Be Like in the NICU

No one told me what it was going to be like in the NICU. No one ever mentioned it was going to be the hardest and scariest emotional roller coaster I would ever be on. When I was pregnant with our twins, we had no idea how anything was going to turn out. We knew our twins were likely not going to be full-term, but we had no idea what it was going to be like. We knew our son was sick. We knew his kidneys were damaged and not working. We knew his lungs were not developed. And we knew he already had brain bleeds. We knew our daughter was going to be small. We knew she was developing with no complications. So as we were signing the papers to have fetal surgery on our son, we had no idea what was going to happen. We told everyone we would make it through this. But we had no idea how we were going to get there. We had no idea how much this was going to hurt. We had no idea how hard this was going to be on us, on our family, on me. No one told me. I think the most significant surprise was the emotional toll the NICU journey had on me. I like to think of myself as the strong and silent type. It is very rare that I show any emotion. Especially tears. It takes a lot for me to cry in front of people. Other than church, it is very rare that I cry in public. If I do cry in public, it is probably because I have lost all control. When we were going through our high-risk pregnancy, we were given a tour of the NICU. We met with the neonatologist, nurse practitioners and some NICU nurses. Our maternal-fetal medicine doctor thought it would be a good idea to meet them all, because based on what we already knew and the high probability of prematurity, he thought it would help to get familiar with the unit. So we went in, met all of these people and walked through the NICU. We were even given permission by a couple of parents to take a peek at their babies and to speak to them and ask questions. Which we didn’t, because at the time we had no idea about anything. What was there to ask? I prayed for my baby’s pain to go away. I prayed for him to be free of this disease. I prayed for God to give my son peace. No one told me that I would be begging God to give me peace so I could let my son go. No one told me there would be a night when I would look out onto the horizon and take a deep breath and suddenly be OK with the direction my life was going. No one told me I would see angels around my son’s bed. No one told me I was going to have to make the decision to let go of my son. No one told me there was going to be a time when I would be told there was no hope for my son. No one told me how to react to that. No one told me what I was supposed to say. No one told me what to say to the mother I made friends with, prayed with, spoke with and dreamed with while in the NICU. And no one told me what I was supposed to say or do when her baby passed away. No one told me what to say to any of the mothers I met while in the NICU. No one told me the only way I was going to remember their babies’ names was by the room number our son was in. No one told me I was going to meet these amazing nurses who were going to care for my child and love both my children as if they were their own. No one told me I was going to depend on these nurses for life and death. No one told me I was going to become life-long friends with these women who would one day save my son’s life. No one told me what to say to them. No one told me how to be with them. No one told me how life was going to be without them. No one told me that the time our twins were in the NICU and the many months my son would spend in the NICU were going to be the most frightening, powerful, unbelievable and miracle-filled moments of my life. No one told me that my life and the way I see everything was going to be forever altered. I am different because of the NICU. I am someone I never knew I would be or could be. No one told me the NICU was going to be just a stepping stone for what is to come for our family, for our daughter, for our son, for me. No one told me, but I learned. I learned the hard way. I believe I learned the best way. We got through it. And we continue to get through it. The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines. Lead photo source: Thinkstock Images

To the Moms Who’ve Been Told Your Baby May Never Take a Breath

March 20, 2014 is the day I will always remember. It was the first time my husband and I were told there was something wrong with our son. I remember everything we were told. I remember every word the ultrasound tech said. I remember the instant pain I felt in my entire body. The shock of knowing the dreams I had for this pregnancy were not going to come true. The stabbing pain in my heart after hearing our son, our only son, is sick and may never be born. Throughout the year, there were many times I didn’t know how I was going to survive. I didn’t know if I would ever come out of my depression, my sadness, my pain. I didn’t know if my son was ever going to be healthy and happy. We were told over and over again that he may never even take a breath. It did not look good, and his prognosis was fatal. How am I going to get through this? But here we are, a year later. Other than dialysis, our son is pretty healthy. (I am chuckling to myself saying “other than dialysis,” because this machine, this dialysis machine is what keeps my son alive on a daily basis), but other than that, he is pretty healthy. Especially compared to other babies with kidney disease. I have been reflecting back on this year for a few weeks now. And I want to share my opinion and advice to other mamas who have recently been given a prenatal diagnosis. Since starting Made For A Miracle, I have wanted to share my own list of what to do when you are newly diagnosed. I hope this helps someone else. So, when you are first diagnosed, this is what I think you should do: 1. Breathe! You need to breathe. I know you are in shock and you are holding your breath, but let that breath out. Inhale. Exhale. 2. Cry if you need to. I remember walking out of the ultrasound room, calm but in shock. I smiled and scheduled another appointment at the front desk. I stood in front of the elevator with my just-as-shocked husband. There were other people in the office, and I didn’t want to scare any other patients. I stepped into the elevator, the doors closed and I lost it. I cried. I cried loudly and uncontrollably. When the doors opened, my husband helped me step out of the elevator. He held me and just let me cry. I couldn’t control my tears. I couldn’t control the moans coming out of my mouth. But I only cried for a few minutes. That was enough for me. 3. Have that talk with your spouse. Make a pact. Make a promise to each other. Let each other know, in clear words, that no matter what happens, you will stick together. Sit right across from each other, hold hands and sincerely have this talk. Understand that a child’s diagnosis, even a prenatal diagnosis, is going to do one of two things: either bring you closer together, or tear you apart. Understand that it is you two in this. Only you two. Support each other no matter how the other handles anything that comes your way. Talk to each other. Confide in each other. Stay open with your communication. Understand that the other handles things much differently than you and support how they choose to deal with. Give whatever you can to the other — you are partners in this. Remember that. 4. Research. People used to tell me, “Don’t Google! Google is bad!” But I had to know. I had to know exactly what was going on with my son. I needed to know the statistics. I needed to know the prognosis. I needed to know answers, options, results. I needed to know what doctors were going to do. I needed to know what other doctors have done. I needed to know what doctors could do. And I needed to know what they will do. I mostly looked at scholarly articles from other children’s hospitals. And when we went into our first Maternal Fetal Medicine appointment, I had a list of questions and options ready for the doctors. I am proud to say, knowing what to expect and knowing what they were talking about really helped us through the rest of the pregnancy. Doctors knew we weren’t going to let them tell us, “Oh sorry, it’s too late.” Um, no! You can do this, this and this. Thank you! 5. Pray. And pray specifically. Our son was given less than a 10 percent chance of surviving the rest of our pregnancy. All I had was hope, and I prayed like I have never prayed before. But I never knew to pray specifically. I just prayed for my son to be born. I prayed for him to be alive. But I didn’t know to be specific with my prayers. I should have prayed for my son Matthew’s lungs to be healthy, for his kidneys to have more than 50 percent function, for the pregnancy to be able to continue for at least two more weeks, for Matthew not to need dialysis, for him to be born healthy enough to have an almost normal life. I should have prayed specifically, step by step, of what I wanted to be. 6. Have faith. My husband would reassure me that all we needed was faith the size of a mustard seed. There was so much negativity about Matthew’s prognosis, it felt like all we had was that mustard seed. And I held on to that mustard seed of faith. I held it in my hand every day. I would picture this little tiny seed in my head, and I thanked God for it. I relied on this little seed of faith. Faith was the only little positive thing we had. 7. Write it down. Write it all down. Buy a journal, a notebook, a composition book and start your journal. There were days I couldn’t write. Days I couldn’t express what I felt. So I would write words. There are so many pages in my book that I just have words and doodles. I wrote scriptures down, quotes I had heard, songs that were playing. I wrote it down. Although still to this day, I have not opened “those” books. I am glad I have them. Maybe one day I will. 8. Enjoy life. Yes, I said it! Enjoy your pregnancy. For me, this was one of the hardest things to do. How can I celebrate this pregnancy? How can I celebrate life when it’s like this? It took me about 10 weeks to learn this, but I finally did. I began to thank God for these twins. I was so grateful to believe Lord gifted me with a son. That no matter what happens in the future, I have a son. I have a daughter. I have twins. And I love them with everything in me. And although they weren’t born yet, I needed to be happy and give them all the joy and strength they need to get healthy and strong for themselves. I took photos of my belly. I took photos of the kids touching my belly. I took video of their kicks and their movements. Like my other kids, I was going to do anything and everything that made them happy. My kids and I would sing to them, talk to them and read to them. Both my mom and mother-in-law planned baby showers to celebrate life. I didn’t realize it at the time, but I know now that was confirmation for me. Unfortunately I realized this too late, but those last two weeks that I carried them were beautiful. Celebrate life. 9. Did I mention to breathe and cry? Because you need to do these two things. Know that it is OK to cry. Take those deep breaths. I know, easier said than done. But it is something I wish I did a lot earlier in the diagnosis. I wish I could have cried more. I wish I could cry now. I still catch myself when I am about to cry, and I stop myself. It is something I’m still working on. It is OK to let go and cry. Mourn the normalcy that you once knew. Life will be changed forever, and it will never be the normal you have always known Accept the new life I believe God has blessed you with and move forward. #10. Believe that a miracle might happen. If your baby defies the odds, you really won’t be able to breathe! They will take your breath away. They will make you speechless. Your baby will be much stronger than you will ever have to be. Your baby will deal with things most adults never will. Know and understand to your very core that your baby is a superhero. You will never ever understand why you or your baby had to go through the rough start. You will never know why or understand why your baby has this diagnosis. But I believe when you let go of all your thoughts and your pre-diagnosis hopes, a miracle can be possible. You, your spouse, the nurses and those doctors might be witnesses to what can only be described as a miracle. I don’t know why we went through what we went through. I don’t know why we are going through what we are going through now. All I believe is He holds our tomorrow. I never knew how powerful prayer and faith were until it was all I had to rely on. Pray specifically and hold onto your seed. Have hope. Have faith. And know what is going on. Stay informed and make sure those doctors know that you expect them to do everything in their power. That if there is one glimmer of chance, grab hold of that chance, that positive percentage. Editor’s note: Because of the sensitive nature of this story, we have made a few more edits after publishing. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

What I Want Every New NICU Mom to Know About the Journey

Dear NICU Mama, I wish there were words I could say to bring you comfort. But I know there’s nothing I can say to make you feel better or give you more confidence in your baby’s future. You see your baby so fragile behind that plexiglass, hooked up to wires and tubes and monitors. You have no idea what all this stuff connected to him is for. You hear those alarms going off every few seconds, and you can’t help but feel this overwhelming feeling of fear and worry. The heaviness in your chest you feel, that’s your heart breaking for your baby. Take a deep breath. Take a few deep breaths. This is your new reality. The sooner you accept this new reality, the sooner you’ll learn to appreciate the miracle unfolding before your eyes. You see, that baby of yours is a miracle. Your baby, right now, is fighting to live in a world they weren’t prepared for. Your baby is strong and amazing. Look at your baby. They need you to be strong. And you need to find the mama bear in you to fight. Fight for your baby. No matter how bad of a prognosis the doctors give you, fight for your baby. I know it’s hard. I know you’re probably thinking, How am I supposed to fight when all I can do is cry? Honestly, all I can say is that some people have it in them, and some people don’t. This moment will define your experience. This is the beginning of your NICU journey. You’re going to feel your heart break every step you take in and out of that NICU. But you will survive this. You’re stronger than you give yourself credit for. Every day may be the hardest day of your life. And when that day is over, here comes another day you don’t think you’ll be able to get through. And then that day will end, and another will start. Every day is going to be hard. But you’ll get through it. You have to keep going. Your baby is fighting to survive; you should be, too. Learn everything you can about your baby. Memorize what their skin feels like, what their little cheeks look like, how their nose is squished up with that CPAP or vent tube in their face. Memorize the wrinkles in their toes, how their hand looks wrapped around your fingers. This is what you’ ll remember for the rest of your life. You’ll never forget the way the NICU feels. But you’ll also never forget the incredible love you feel for you little fighter. It is your choice to decide which one overwhelms you the most. The NICU journey will turn your life upside down as a mother. We’re so used to being the ones who feed and change our babies. We’re the ones who get to hold them and touch them and make them feel better. But when your baby is in the NICU, you aren’t in charge. You won’t get those amazing baby firsts without someone saying it’s OK or someone else doing it for you. But don’t get mad about it. It’s not your fault or the nurse’s fault. That’s just part of the reality you are living. That’s the life of a baby in the NICU. What you need to do, mama, is make the best of what you got. You have to live on purpose when you’re in the NICU. You have to purposely get up and go. You have to purposely enjoy your time. That takes time and a whole lot of effort on your part. And you might have a lot of prayers. I never felt closer to God than when I begged Him to heal my son, to comfort my baby and to hold my baby because I couldn’t; he was too fragile. But the vision I had in my mind of my baby in the palm of His hands — that’s what got me through the day. Plus we were blessed with some pretty amazing nurses. Sometimes I want to go back to the NICU and thank those nurses with every ounce of thankfulness I have in me. But the NICU journey still gives me anxiety. It’s hard for me to go there sometimes. I put on a brave face and go there for special occasions and events, but that’s because I’ve become a pro at pushing my fears back and not allowing my tears to fall down my face. I can force myself to think of the positive instead of the negative. I learned that from having a baby in the NICU. And I believe you will, too. It is going to take time. And it is going to be painful and emotional. You will cry at times, and that’s OK. But you’ll learn to get through it. In a time like this, you have no choice. You have to keep going. You have to live. Every day, your baby fights to live. You, their mother, their favorite person in the entire world, need to be strong. Because as time passes, your baby is going to need you more and more. And that baby will rely on you to take care of them and raise them. Believe in your baby, and stay filled with hope. Believe and have faith that no matter what happens, you will get through this. You are not alone. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

The Best Advice I Ever Received as a NICU Mom

When my twins were born, I lived at the NICU. I was there about 18 hours a day. For the first four weeks, it was my home. But after the first month, I had to finally go home and “snap out of it.” I had to come to terms with the fact that my babies weren’t coming home with me anytime soon. I had to remember and realize that I have four other children at home waiting on me, depending on me and needing me. So I left. I went home. I would make arrangements to be at the NICU either every other day or every few days. I’d split my days and weeks. I had six kids: four girls at home and two premature newborns an hour away. It was hard, to say the least. I was dealing with postpartum depression, my faith and financial problems. Then I had to shove aside all the emotions that come with that and put a brave smile on my face for my children at home. I was miserable on the inside and out. I was sad. I was just so sad. I spoke to an ex-NICU mom once and she gave me the best advice I could’ve ever received. She said: “When you are at the NICU, be there. Don’t think about anything else. Don’t think about your husband, kids or anything else. Be at the NICU. Enjoy your babies. Take in their breaths… take in their lives. Give them your all. Give your baby hope, love, prayers and give them all your energy they need to fight!” “And when you are home, be home. Enjoy your other children, your husband, your bed, your rest. Don’t worry or wonder about your NICU babies. They are in the best hands.” It was hard to do this at first. But I needed happiness. I needed the joy of my children’s laughter and smiles and most importantly, I needed their energy. My children give me life. Yes, it was a scary and sad time, but I believe God has blessed me with other children. I must acknowledge the blessings. I must be grateful for all He has gifted me with. I learned to be grateful and faithful for all I believe God has given us. I have seen babies be called back to heaven. I have seen parents lose hope. I have seen families in despair for their infant. I have seen parents take their babies home. I was blessed with two additional babies (and four girls at home). I don’t believe God promised me easy. I believe He promised love, life, family and blessings. My son spent 143 days in NICU. Moments ago I made the last call to the NICU I will ever make because my son is coming home. The last call I will make to check up on him. The last call. The last day. This is it. I’ve cried many tears of pain and relief, and many more of joy. Today, I cry tears of thanksgiving. Tears of pure happiness. Tears of praise. Deep down it’s a bittersweet feeling. I’ll miss the primary nurses who cared for my son, Matthew, and his sister. I’ll miss the doctors, the front desk staff, even the nice cleaning lady who always asks about them. I’ll miss the hallways, the elevator that talks to us when we get in… I’ll even miss the vegetarian pizza calzones on Fridays. Today our NICU journey ends. Tonight we start a journey. This new ride, I’m told, is even more scary. But we are ready. Follow this journey on All the Days the Lord Has Made.