There is something about this season that brings out the "blog" in my heart. Words that have been floating around in my head and heart for several weeks. I always know when it’s time to put my fingers to the keys and write. I can’t believe that it has been over a year since I last publicly blogged. Most of my blogs have been written in my journal lately. Today, I want to share.
24 years ago today… July 18th, I woke up to my alarm at 4:45 am. My bags were packed and we had everything ready to go to the hospital. It was the day that I was going to give birth to my first child. We didn’t even know whether it was a boy or a girl. So much anticipation. We had waited all those months to finally meet you. A young 19 year old, hooked up to all the monitors and patiently waiting for you to arrive.
We had a boy and a girl name ready, waiting to see who you were gonna be. You must have been just as ready to come because you came so fast. A few pushes and you were here. A beautiful, beautiful baby girl. We named you Shealyn Renee. Shay after dad’s middle name and Lynn after my middle name…. Shealyn!
You were literally beautiful. Even the nurse and Doctor said… "Wow, she looks like a little doll" and "She’s really a beautiful baby" I still to this very day can remember the absolute pure joy in my heart. I cried (but that’s not anything new) with excitement. I couldn’t believe that I was holding my first daughter in my arms and you were all mine. I was your mother and I was given this amazing opportunity to raise you and own the beloved title of "mother"
They brought you back from doing all of their tests and told me that you had a scalp abrasion on the back of your head from coming through the birth canal and that you must have sucked your thumbs in utero because you didn’t have any thumb nails. Other than that you were perfect!
We adored you. Literally adored you. We were so anxious to take you home and be a cute little family together. We got home and were so completely ready to begin our new phase of life. But, day three when I went to change Shealyn’s diaper it was covered in huge yellow filled fluid blisters. They were literally all over her diaper area. I knew that it was not normal. I called my mom and told her and we decided to call the pediatrician. However, I didn’t have a pediatrician selected yet. So I pulled out my insurance book and picked a name out of the list.
I called around noon and they told me that it was just my luck because they weren’t scheduling new patients for a couple of months but that if I could be there in 30 minutes that they could get me in due to a cancellation. (miracle… I might add) The Dr. looks at Shealyn and tells me after observing her that what she has looks like a rare skin disease called blahblahblahblahblah… really he said Epidermolysis Bullousa but all I heard was the first. It was such a long word that I couldn’t even repeat so I had him write it down. Or maybe my mom did. He then says… you need to immediately take her to Children’s Hospital. DO not go home and go straight to the hospital. That was the longest car ride I ever remember. All of a sudden the scalp abrasion and the lack of thumb nails made more sense.
I also remember how extremely grateful I was for my mom. Words will never be enough for the gratitude in my heart that I felt for her. I had never felt so scared. I had never felt so unsettled. As I looked at Shealyn the whole ride to the hospital I just bawled my eyes out. Somehow, without even knowing what she had or what was gonna happen. It was like deep in my heart my spirit was already preparing me for the worst news ever. That is when I first discovered how strong I was. I had already told myself that no matter what I heard at the hospital that Shealyn was going to be a miracle and survive whatever this disease was. When we got to the hospital they asked me the most horrible questions. It literally hurt my heart. I couldn’t handle it. Here I was begging for someone to let me know what was wrong with my daughter and they were asking me questions like I had done this to her. I was again grateful for my mom and her calming disposition. Then they told me that they had to do a series of tests and when we gave them the paper of that long disease name. No one had even heard of it. Not even the main Doctor. So, these tests begin, and I couldn’t even deal. They took the end of a pencil eraser and began twisting into her skin to create a blister. I again was thankful for my mom staying in there with her because I was watching them torture her little frail body and just couldn’t handle it. On a side note, I can guarantee those tests wouldn’t happen in this day and age; but they did the best with the knowledge they had at he time.
Because the first pediatrician gave us the name of that disease. The Doctor was able to find out that there was a National Registry in North Carolina for this disease EB. They contacted them and sent the samples off. I was told that I would hear something in about two weeks.
That was the longest wait ever. I did finally hear back. I also realized another huge miracle. That Dr. that I selected out of a book of a hundred names was right. {Miracle number 5867668.} It was Epidermolysis Bullousa Junctional Recessive Type. What did that even mean? I was left a phone number to call. I called. The sweet lady on the other end had such a soothing voice. However, what she had to say was not so soothing. She told me that the type of disease that Shealyn had was terminal and the was not expected to live past a year old.
Once again, I was reminded of my strength at that moment. I remember telling her that Shealyn would not be one of those odds and that I would do everything it took to save her. And I did. Sadly, it wasn’t what God had planned for her life or ours for Shealyn to live. I learned quite quickly that I wasn’t as strong as I thought I was. Nothing prepares you for the loss of your child. I felt weak, I felt pain, I felt hurt so deep that I didn’t think I could even survive it. I felt broken. I felt insecure. I felt just about everything sad you could imagine. I learned to take it one day at a time. Oh so many stories I am skipping over…but those will be for another blog.
What I want to share with you today is about my come back. How I could be so broken and yet write to you today of how the very things that break you and literally bring you to your knees and take every ounce of fluid from your body through tears are the things that truly make you strong.
First, I will say that my faith in God and the blessing of being comforted got me through the initial weeks. Second, allowing myself to literally cry a river. There is something about tears. I truly believe they are feelings that you can’t even put words to. Kind of amazing when you think that our bodies were given an avenue to release emotion in such a huge way. That is why I have a special place in my heart for tears. I believe it is a signal of strength when someone can cry and express that emotion. I consider it a gift.
Grief never ends. But it changes. Grief is the price of love. Grief has changed me forever. Experiencing loss and grief at such a young age has allowed me to live with a heart full of empathy and compassion for others. It has brought me to the depths of brokenness. Which in return has also brought me to the tip of pure joy.
I heard a song the other day that spoke so eloquently about how I feel. It is called " Not too far from here" by Hilary Weeks (my all time fav)
It reads,
Somebody’s down to their last dime, Somebody’s running out of time, Not too far from here. Somebody’s got nowhere else to go, somebody needs a little hope, Not too far from here.
And I may not know their name, But I’m praying just the same, That You’ll use me Lord to wipe away a tear. Cause somebody’s crying not too far from here. Somebody’s troubled and confused,
Somebody’s got nothing left to lose, Not too far from here. Somebody’s forgotten how to trust, Somebody’s dying for love, Not too far from here.
It may be a stranger’s face, But I’m praying for your grace to move in and take away the fear, Cause somebody’s hurting not too far from here.
Help me Lord not to turn away from pain. Help me not to rest while those around me weep. Give me your strength and compassion. When somebody finds the road of life too steep.
Somebody’s troubled and confused, somebody’s got nothing left to lose, not too far from here. Somebody’s forgotten how to trust, Somebody’s dying for love, not too far from here.
Now I’m letting down my guard and I’m opening my heart, help me speak your love to every needful ear. Someone is waiting not too far from here. Someone is waiting not too far from here. {end of song}
I let my guard down a long time ago when I realized that it was my purpose to not only share the trials and heartaches but the glorious comeback and the joy in the journey that can be found after any kind of brokenness. I promise if you will pray and ask who needs you that you will be led to them. Don’t be surprised when it happens to be the last person that you would ever think of.
This life is hard and full of trials and challenges and like the song says… there is someone not too far from here experiencing the hardest time of their life like I once was. Be that someone that shows up! Be that someone that asks a stranger what’s their story. Be that someone that smiles at people when you are out and about. Be that someone that wipes away a tear. Be that person that is willing to open up your heart. Be that person that is waiting to be led where you are needed. Cause not too far from here somebody’s waiting for you.
Thank you to my angel girl Shealyn for coming to this earth for a short time yet teaching me invaluable lessons that last a lifetime. HAPPY BIRTHDAY TO MY SWEET ANGEL GIRL! Until we meet again!
Until I blog again,
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