December 8, was another appointment day for my sweet Riley Joy. I knew we would see Pediatric Oncology that day and talk about her imaging schedule to monitor her Neurofibromatosis 1 and her spine from her previous surgery for tethered cord. What I didn't know that day, was that for the first time since her diagnosis of NF1 just how scared I would feel about the unknowns as he explained tumor and cancer after cancer to me. He also was gracious and patient as he waited for my questions to come. I'm sure the stunned and numb expression was a indicator to him that this was not what I thought we were signing up for that day. As quick as he said, "she will have blood work done every 6 months to monitor her red and white blood cells and her greatest risk for cancer is until she is 5 and again when she is 13", my chest began pounding and I literally felt like the room was spinning. A sweet nurse came in 10 minutes later to indeed draw her blood and for the first time screen her for cancer. Now, I have friends who know exactly what this Mama was feeling in that very moment and for the first time the idea of my core value of children should not die or deal with these things, they should be for adults, was crushed. The oncologist tried to be calming by saying the positive to NF1 and knowing their increased risk for cancer is that this monitoring process can be beneficial to catching things early as opposed to someone just getting sick and not better and finding out suddenly. Remember that core value, well neither is a good choice in my mind. Since the moment we found out that Riley had NF1 and all the risks, we have jumped feet first to address any help she may need. Then a bit over a year ago we had a annual MRI when we found she had a very mild form of spina bifida and she would need to have tethered cord surgery. She was 20 months old. God was present and faithful and a month later at 21 months, Riley was recovered and walked unassisted for the first time at 21 months. WOW! How great is HIS faithfulness. Indeed. We rejoiced. We put her in therapies to get her caught up and now this. Sitting there in oncology talking future and BOOM, my world felt out of control. I WAS shaken, it was NOT well with my soul. I was angry, scared, and for the first time knew I would have to let go and cling tighter than ever before and eventually overcome any parents greatest fear, letting go.
Later that day, we go home, I take my husband and daughter to the airport to go out of town and while riding home, I get a call from the Oncologist himself, she does not have cancer and for the first time all day, I sat in my car with a sleeping baby girl and I cry and pray and remember thinking now what? Never sharing my emotions with any one about the day, not even my husband. Feelings aren't really my thing, despite this blog post. Life moved on from that moment.
Fast forward to Jan 2. Everyone is excited about how the new year is going to shape up for them. People are talking about goals they have and dreams they are pursuing and I read one article totally unrelated to the above, and I have my very first panic attack ever. It was scarey, confusing, painful, and something I didn't understand. It happened so fast, I felt numb, unable to eat and honestly, not the person I was the day before. Something was wrong. I prayed and waited. Knowing if I was still HE would fight for me and you know what, HE did (not that I saw right then, but can see now) HE sent me a message to talk, share, encourage. I met a nice lady named Ms. H. She talked to me about the fears of life in general the ones that are real, the ones that aren't she was kind and began to explain a little more about what was happening. You see, us Mama's are fixers. We want our children happy, healthy, being treated kindly and ultimately becoming awesome adult people. She looked me in my face and asked me what is my greatest fear? After becoming a sobbing hot mess, I told her death. Losing my child if this would be a reality in my future, how do you move on? She spoke of brave Mama's who have indeed fought that fight and have had to let go and she assured me it can happen, it's hard and something you have to work on every day. You have to find that peace. Oh that word again, that same wellness in my soul, to my core. I just didn't know if that was possible.
I have too read other Mama's blogs about their children's sufferings and some have passed and others have not and I have prayed for them. I have read their messages and I have been encouraged by their strength and faithfulness.
A sweet friend shared a song with me the other day, I shared it too on my personal FB page. She unaware of this moment and what was happening (remember that sharing of feelings thing, so only a few know) shared it with me. I listened to the words, a familiar song, one I ironically sung at my grandma's funeral when I was in the 12th grade, flashes of people and life experiences that have come and gone filled my mind. That same pounding of the chest came back, but this time what Ms. H said about grief and learning to deal with any children with special needs, broke me down to my very core. Literally feeling the emotions she said that never got dealt with all came like a broken dam. Again, sobbing and reaching to God with petition, trying to understand HIS way, HIS greatness in this and I struggled. I couldn't get there. I couldn't sing the words, " It is well with my soul!" because being honest, it wasn't. I was sad, angry, depressed and anxious and needed to have that moment of realness. I shouted, punched my steering wheel, had an all out 36 year old tantrum. WHY, WHY, WHY??? First the spinal cord and all that has been done to her and now this looming worry and fear. I just couldn't understand, I have studied Paul and Job and I know their lives have brought glory to HIM! Why? I have sat in bible class after bible class, studying, looking, and praying and listening to people and their experiences. Even their perspective on faith and lack of faith and what that looks like. Friends let me tell you, I have never had more faith in my life, more closely connected, more searching and I know HE has been overly patient. Waiting for me to realize the answer the whole time. Let go of the control, use each moment as a opportunity to show your faithfulness. Paul while in Rome and bound by earthly chains,( Acts 28:1-31) was still able to use his message for glory. He saw that being well with his soul was about not having control over earthly circumstances, but who he chose to serve. Now in my opinion the most beautiful thing about reading scripture and stories you have heard countless times, is that the message gives new meaning in every new season in life. How awesome is that! This was my aha moment, it became humbling. As Tim Tebow eleoquently wrote in his book, "Shaken" "God is bigger than our own hearts!" My GOD who loved her through her spinal surgery will love her through any future strife or non strife she faces or any of my other children face in this life, HE loves them more than even my Mama heart can and if the moment comes and they must leave before me, HE will love me more than I can know. HE will ultimately receive the glory.
Needless to say, my core values are beginning to take new shape and meaning. I write all this to be an encouragement to others to let you know, its ok to grieve things, fight with anxiousness, question the why, not understand the why's while battling the storms. But I do want to encourage you to be like Peter in Matthew 14.31 when the storm raged, Peter reached for HIS hand and HE immediately pulled him up out of the water. When the winds blow strong, and your visual acuity might be blurry, put your hand out there anyways. HE will immediately hold you up. Don't let the storm rage, remember HE created the storm as much as HE created you and even it will obey! Sometimes in life, we get caught up in perfection, reality versus perception and we lose sight and become afraid. You might have to do what I did for days and just acknowledge the good in each day, each moment and gradually see how HE is working. Like just yesterday, I played the song "It Is Well" by Kristene Dimarco and Bethel Music and for the first time allowed myself to cry and sing those words and believe them. Because my soul is well because it rests in a Savior that has the control. My favorite part, " the wave and wind still know his name"! "He can throw that mountain in the midst of the sea on behalf of me." Y'all that is powerful.
If you made it this far, bless you, you're kind. I have not written in so long and have obviously had these things on my heart and needed to share them. Today is a new day, choose to rejoice and be glad in it. Great is HIS faithfulness! Much Love!
I have set the LORD always before me; because he is at my right hand, I shall not be shaken.