You will find normal again, you are not alone! Dealing with grief and children in the hospital

Spread the love

A letter I wrote a few weeks ago for my friend… but finally had the courage to share it. I hope its message can not only help her family, but many others! You will find normal again, you are not alone!

you-will-find-normal-again-you-are-not-alone-dealing-with-grief-and-children-in-the-hospital-hypoplastic-left-heart-syndrome-children-in-the-hospital

You will find normal again, you are not alone!

We all know the saying you never know someone till you have walked in their shoes?  I don’t think any of us can 100% understand what someone is going through because we are all so different. But you can at least have a better understanding of what it is like when you have had similar experiences.

This morning I woke up and saw a Go Fund Me account set up for a family friend. My Mom and several  people from our town had shared it. My heart sank, I saw a photo of her sweet lil baby girl.  I then found out that she had fallen into the camp fire and been life flighted to a burn center.  This was awful, but at least the burns were on her arms and chest, not her whole body.  But I also understand how traumatic and critical burns can be. Clearly she is a very sick little girl, and has a long road ahead of her. Likely years of healing and therapy will be needed.

I got the kids ready for school, yet in the back of my mind still feeling a bit sick knowing someone you care about is hurting.  We said our family prayers to get the kids off to school,  I asked my Father in Heaven to please be with this little girl. But also to be with her parents, and grandparents.  Asking that they will have the strength to care of her.  Being in the hospital with a critically ill child, is honestly one of the hardest things you will ever do. I know because  I have been there.

“In an empty hospital room, numb, confused and heart broken”

My oldest son was born missing half his heart. When the doctor delivered that news to us about 12 hours after my son was born, my whole life changed.  Life changing decisions were made within a matter of minutes my son and husband left on a life flight to Seattle in an attempt to try and save his life.  I was left there in an empty hospital room, numb, confused and heart broken. How did this even happen, and how was life ever going to be normal again?

The tears seemed endless, and as kind as the nurses and staff had been, I felt so alone. My Mom was there with me, yet I still felt so empty.  I really wanted to just go to sleep and wake up and find out all of this was a bad dream.  This is not how my life was suppose to go? I was suppose to be bringing my baby home and starting my new life as a mother. Instead I was laying in an empty hospital room, looking at the empty car seat that I had brought with me the day before. The car seat that was suppose to bring my baby home.

“Constant Praying”

I prayed a lot, almost constant. Praying and crying was about the only thing I felt like I could do.  At that point they only gave my son about a 30% chance of living through his first surgery. I had just gotten word from my husband that they did not even think he was a candidate for surgery, he would most likely die on the operating table.  My baby was going to die? Those are words no mothers should ever have to hear. I was not even there to hold him, I could not fly out till the next day. I never really understood heartache till that day. Like I said before, my life changed forever on that day.

“To say I felt hopeless was an understatement”

I was worried about my son, but I was also worried about myself. How was I going to do this? How was I going to pay for his surgeries? Where was I going to stay?  How was I going to pay for food and travel?  Would I be able to learn to care for him if he did live?  How was I going to give him all his medications? Would I be able to learn all the medical terms?  Am I going to loosing my baby?  HOW WAS I EVER GOING TO DO THIS? To say I felt hopeless was an understatement.

As I lay looking at the window, tears running down my face,  I was turned away from my Mom so she could not see me crying. I heard the phone ring, my Mom answered it for me.  Still looking out the window I did not turn over, instead I just listened. I heard my Mom say, “She is doing ok, she is just really scared and wants to get to her baby.”  My Mom then tipped the phone down and said, “Sarah, it is Aunt Susan she wanted to let you know she loves you and that she knows how scared you must be right now, and she is praying for you.”

“She was the first of many people that gave me the courage to keep going”

Once again the tears started flowing down my face, but this time it was a little different. You see my Aunt Susan had lost her baby minutes after giving birth about 20 years before. I had always heard the story, and thought how sad that must have been. Yet I never understood it, I had never felt those feeling because I had not lived through that same experience.  That phone call brought me so much strength, it was if she had reached through the phone and given me a hug. I was still terrified and scared. Yet I felt such love from her, she had been there before, she knew what I was feeling. She helped me feel safe, and that I could get through this.  I had not lost my baby yet, but if I did I knew that she was one of the few people that understood my heartache. She was the first of many people that gave me the courage to keep going.

“Outpouring of Love”

Over the next few years I saw an outpouring of love from friends, family and even total strangers. Money to help pay for flights, rides to the airport, meals, cards filled with encouragement, strangers who let us borrow their car while we were out of state at distant hospitals.  People coming to sit with me so I was not alone, since we were in the hospital for weeks at a time. It was a long and often lonely journey.  Everyone else was moving right along with their lives. Yet mine seemed to be moving in slow motion and it seemed my “normal life” was only a memory.

One of the things that gave me the most hope was seeing other heart families that had made it, or other parents that had sick kids that were now well.  I knew they understood what I was feeling, the heartache that seemed to consume me, they had felt it too.  But here they were a few years later with smiles on their faces, going to school, having family dinner around the table (instead of in a hospital room). They were planning vacations, they were going to church, going to the movies, or just going to work everyday…  they were just living normal lives.  And that gave me more hope than anything.

“Not just for your little one, but for YOU”

So as I sit here, I want to tell my friend who’s lil girl is in the burn unit right now… my heart aches for you.  My prayers have been constant for you today and will continue to be offered in your behalf. Not just for your little one, but for YOU.  I pray that you can feel them, I pray that you have the strength it takes to watch your little one hurt, and know that there is nothing you can do to make it stop.  You never understand how much you love someone until they are hurting and you can’t fix it.

Your journey is not going to be easy, there are going to be days you are going to want to give up. You will feel anger, sadness, confusion,  joy, hope and even total emptiness during this journey. But you will find joy again, and it will be more meaningful than ever!    I can also tell you, you will find normal again someday.

Our stories are different, but I hope you can find comfort in me telling you. You are not alone, you can do it, you are loved… and with time you will be able to smile again!


Watch my recorded video on answering your questions and telling my sons story

you-will-find-normal-again-you-are-not-alone-dealing-with-grief-and-children-in-the-hospital-hypoplastic-left-heart-syndrome-children-in-the-hospital

 

 

 

 

183 COMMENTS

  1. A Thrifty Mom thank you. Cherish your sweet son. You are so sweet. Happy Thanksgiving! I so love watching you videos, always makes me smile.

  2. I feel that your son has the best mom ever. I know your pain, my daughter passed away from a brain tumor. We find the strength to be there for them. Treasure him, hug him often.

  3. Thanksgiving is for being grateful. Sounds like you are so grateful and thankful for every moment, even the crazy ones❤️🤗😘

  4. Oh my goodness you are an amazing lady! I love your videos and your fun quirky personality. And now I love you even more knowing how much you’ve been through and love your faithfulness and strength. Thank you for always being yourself.

  5. We had an angel in our neighborhood who was born with heart defects. He made it to 5 before he had a heart transplant. He unfortunately only made it 6 months with the new heart. It was one of the most heart wrenching but spiritual things I’ve ever witnessed

  6. Those are miracles in the purest sense. You’re amazing to tell this story and share your personal testimony.

  7. I wish more moms and dads could hear this story. Many take for granted their whole, healthy children.

  8. Spin two mouth in Childens hospital with my child with her lost weight with blood bowels end up with epilepsy everything prayers ever time she is special needs to cry a lot to think about it

  9. My daughter was born with a hole in her heart and we found out from a second doctor that it could have killed her. It was a miracle from God. Thank you for sharing your beautiful story.

  10. You seem to be doing very well, and I live your brows, mine are wavked, & no I don’t pluck them either, lol

  11. Talking about your comment about how your husband started it and told you someone else would read it

  12. We love you up here in Coeur d Alene, id. Actually I’ve been following since before my daughter was born so around 8 yr U0001f60a

  13. Thanks for sharing your story. Never knew you are dyslexic, can’t wait to show my daughter who is also dyslexic. Love showing her successful woman who have overcome that hurdle.

  14. Im 49 with a 4 year old and I work full time. I would love to be home. I feel so guilty when I leave its awful. I wish i could do this. Im a wimp though!

  15. I actually like hearing stories about others children, mine are all grown up and have their own lives now, so it’s nice to hear about yours U0001f609

  16. You are my favorite blogger to watch BC you are real and honest. I don’t need to see perfect I need a real honest mom helps me not feel crazy lol

  17. It doesn’t bother most of us and we love your page and you! Been following you since you were pregnant with your 4th kiddo U0001f60a

  18. I do not have a special needs child but it is good to hear you speak about this so that we can all learn to be sensitive and non-judgment al.

  19. Love watching you all the time I don’t want to seem like a stalker but I’m always waiting for you to come on live

  20. Thank you for sharing, always wondered about your son. Thank you for sharing your lovely heart!

  21. The ABA (applied behavior analysis) they say will look for what happened before during and after behaviors. Then they say they give you tools to help.

  22. My little cousin in a miracle baby. She was not supposed to live but she is now 2 years old and the Happiest baby I’ve ever met!!

  23. I don’t have special needs kids but I worked in a special needs preschool last year. Theses kids are so smart and it’s amazing how much they learned and grew just in the one school year I was with them!

  24. Have you tried applied behavior analysis? We are considering it. We also don’t just chop up behaviors to the diagnosis.

  25. My parents took her in under her wings. Her parents has passed away from a car crash. Her little brother, and sister lives with my parents. It had happen 7 years.

  26. Our son has Down Syndrome, he can be a stinker, he has aggression problems, but I must say he is also a lover. He has a sonar for finding anyone with any special needs.

  27. They told my mom that she left because of Medical reason. My little cousin with Downs she use to see her

  28. I had to have 3 blood transfusions after a hysterectomy… as a single mom I am so grateful for blood donations as well

  29. My cousin gave the gift of life. And saves I believe 5 people and my auntie got to talk to the person a few years back that received his heart and it was amazing for her. And we celebrate his life ever year with the gift of life walk and and run.

  30. I remember being at Children’s in Denver, they set up cloth walls and performed open heart surgery as I nursed my son. Amazing what they can do!

  31. God bless you and yours – we’ve been in that room it’s a wretched place – sensory kids make you so aware of the world it’s like walking naked through the world

  32. You are such a refreshing soul to see on social media, you let off a positive vibe every video and that’s a nice change from everything else going around social media, thank you for being you!

  33. Out son is a miracle, he was born healthy but as he got older he had 3 surgeries and when he was 7 he got the H1N1(influenza), and developed asthma and PAC(premature arterial contractions). So we take every day as a miracle.

  34. My name is Karen, I remember crying myself to sleep when I was pregnant with my son. Fearful that I was not a good enough person to raise my son, I was a single mom and my family tried to get me to adopt him out, or abort him. I found myself the day he was born.

  35. We walk by faith and not by sight – the halls of hospitals are hallowed ground they are filled with so many prayers

  36. I understand completely, i felt very similar with my baby girl with her congenital diaphragmatic hernia. Oh my goodness I used to hate going to that little room because I was so scared of what they were going to tell me when my daughter was in the NICU. Just not knowing if she was ok, alive or not. Scariest feeling in the world. I would pray my heart out every time.

  37. My son has a bicuspid Aortic valve. Tethered cord and bladder and bowel issues. Many more. 5 specialists at Riley. He was also born with a PDA. Praying for you and your family.

  38. The first time I watched you live you made soup in x minutes – great soup – this is a gift of soup for the soul and soul
    and you have a story of life that

  39. I was thinking ..when you mentioned that hypothermic thing at the beginning… sounded like some Grey’s Anatomy stuff right there!! So that’s funny it was in Seattle! 🙂

  40. My dad has a congenital heart defect and my two oldest brothers were also born with heart defects. The second brother passed at 2 from complications from tetraology of fallot. They weren’t going to have more babies and then my brother and I came along with no issues!

  41. It’s so easy to judge when you are not in that situation and think you would do it perfect. From the little bit I see of you I think you are an awesome Mom

  42. Amen so thankful for MDs of faith and parents that are strong testimony of that faith Happy Thanksgiving!!

  43. The unknown is the worst part of getting a diagnosis like this. When my son was diagnosed with a heart murmur and bicuspid aortic valve I remember feeling so helpless and like I had failed him. Thank God for my faith! You are an amazing mama, God chose you as to be their mama!

  44. My daughter was born with a undiagnosed right sided congenital diaphragmatic hernia, so she has one lung and a piece. Your a great mom.

  45. You are sooo amazing! And such an inspiration to young moms like me. This has always been such a fear of mine. Thank you for sharing this. ❤

  46. Stay strong from one heart mom to another heart mom… My son was diagnosed with tetraology of fallot had open heart surgery when he was 2 weeks old and had another one last year and had another procedure this may its overwhelming but us mommies need to stat strong for them 😉

  47. You are such an inspiration to so many women me included you are a very strong will powered woman

  48. Im a special education teacher getting my masters. I’m very interested in hearing your story thank you!

LEAVE A REPLY

Please enter your comment!
Please enter your name here

This site uses Akismet to reduce spam. Learn how your comment data is processed.