Rocketgirl Five

Family is defined a group of one or more parents and their children living together as a unit.  The second is ; all the descendants of a common ancestor. As I type that I start to ponder the lyrics to Rocketman by Elton John once again.  Why, God, am I hearing that song still? Shoot, I went back to Des Moines and saw my brother and even went to see my mom. Then it occurs to me that there are other people & places that I have been orbiting for a while.

My daughter, Emily, was 19 and a college freshman in St Louis. She was in college algebra when it struck and her life and world would never look the same since. In class she had a seizure, stopped breathing, and was unresponsive for 45 minutes. She was transported to the hospital nearby and after 57 minutes was responsive. We got the call from her college three hours later about what had happened and where she was.

We got her home, had tests ran, and everything looked fine. To quote a neurologist "she has a beautiful brain".  She went back to college in St Louis for another semester. She would wake with her mouth bitten and battered and bruised. The only conclusion we had was that she had a seizure in her sleep.  When I was diagnosed with cancer she came home from college.  With her home we realized how severe her seizures were and how many occur.

Emily has seizures in her sleep. She has seizures when she is awake. She has had multiple seizures on the same day. Each seizure leaves her battered and bruised. Because she's home we are usually with her and have learned how to maneuver her so she doesn't stop breathing. The seizures not only have battered her body but her memory as well.

From the start at 19 we looked for a reason.  We were told by a leading neurologist in KC that sometimes there are no reasons and we had to accept that.  We have been told that she could be a candidate for a stimulator that is a button placed in the brain that stops a seizure when it senses it. Then we found out that her seizures begin at the frontal lobe and then spread quickly through her brain ; stimulators aren't designed for the frontal lobe.

We have met with 8 neurologist total. Each looks through her scans and tests and sees that Emily has a "beautiful brain". We have went through medications and nothing ever sticks; her body responds at first and then within a month or so the seizures continue. Her current neurologist in KC suggested surgery when we first met. Emily was all for it.

As her mom I should have been all for it too, right? I haven't. I wanted there to be a magic pill that would keep my darling dot seizure free. I hoped that she would outgrow the seizures since the brain is still growing from age 18-25...yeah, thank my educational background for that. I prayed that God lift and restore Emily. I felt like I heard at 25 she would be. She turned 25 on August 5 this year and had a seizure as she sat across from me eating breakfast.

It was that seizure that became the catalyst for me rallying my daughter and her wishes to pursue surgery. At her September appointment to her KC neurologist she began to wobble when she walked and garble her speech. This happens at least twice a week but her neurologist has never seen it. I had to advocate for Emily because she could not. Her neurologist got her accepted by the University of Missouri neurology program.

After we made that appointment with MU Emily talked to me. She shared that she would have pushed for the surgery years ago but I was battling cancer. She told me "you were so sure that God was going to heal me that I didn't want to tell you no". Emily and her brother have prayed together over her for the past year that it would be; the right time, place, and moment to say we are going to pursue surgery and that I would accept it.

It makes me ponder and cry that my kids were afraid to tell me. It makes me marvel at God that he heard their prayers and began to soften my heart as Emily approached 25. It makes me ponder if I have been orbiting around like the Rocketman too distracted by my own feelings on Emily to ponder hers.

There is a current of light from God that calls us back from self doubts and idleness the world floods us with.  All the insecurities as a mom with a daughter with uncontrolled seizure disorder. How many times have I begged God not to take my daughter who was beautifully and splendidly made whom I love. It hits my like the cold snap this morning my daughter; in my mind I know that Emily has always been God's beloved daughter. I've prayed and released her each day in his care since she started kindergarten & through college. Somewhere between college & after her first seizure I began declaring her my daughter. It is a haze that has been clouding my judgment, reason, and heart for a while.

 It is a haze of selfishness that I've been walking because I didn't want to release my daughter into the arms of her Heavenly Father like I did on her first day of kindergarten. A haze that I've walked in and didn't even notice. The haze that the enemy has placed in my path that leads me to mumble and grumble and make excuses. The haze that takes me away from the current that is our Heavenly Father. 

The difference is I'm starting to spot the haze as it lingers around us. It seeks to challenge me; give easy alternatives, name call, and divide not only me but our family. This past week we were united as a family when we drove to Columbia, Missouri for a consult with Dr. Bendy. He was honest and said from her previous scans and tests there is no reason for the seizures. He told us he took her case after talking with Dr. Seeley about Emily. He knows that MU has resources for Emily that she hasn't had in the machines that do the imaging. He said that he could not say if she is a candidate for surgery or not based on her scans but if we did the scans, tests, etc.available at MU he might be able to find out.

The haze began to dissipate with the drive there on then as we consulted  with Dr. Bandy. When we left and got in the car I could feel the weightiness of the haze returning; it wanted me to cry, call out God for not healing Emily, and to be angry...really, really angry.  My daughter took my hand and squeezed it and the haze dissipated. I saw the beloved daughter of the King of Kings before me. I was humbled that the King had chosen me as her earthly mom. 

There is a haze around each of us seeking to pull us into anger, resentment, and abandonment of our beloved creator, God.  I've never felt like this in my life but it is a poignant time for me; I'm no longer an abandoned child at the side of the road that has lost her dad and possibly her mom soon. I'm no longer intertwined with the worldly stuff but have began preparing myself for kingdom things. As I've begun freedom the haze started to enter that left me polarized, orbiting outside of; people, places, and situations.  I allowed that haze to stick rather than beat it with a stick. 

On the ride home from Columbia I shared this with my husband while Emily slept in the backseat. I shared about the haze that seeks to encompass my emotions, play on my fears, and stop me from praising the Lord for his children that I call my daughter and son. Ted reminded me that the greatness is that I recognize it and know Jesus is the solution. Jesus is the haze breaker. United we refute the haze that we may stand brave, strong, and true in the splendid light of Christ Jesus. United we refute separation from our creator as his creations. With eyes wide open we call ourselves and each that we meet beloved children of the King.

Here's a prayer that has helped me and I hope it will help you as well. "United we refute the haze. United we refute; list out whatever it is, friends. United with Christ Jesus we are brave, strong and true in all situations. United with our Heavenly Father we can do all things in our path with grace, dignity, and mercy.  There is no haze that can keep us from our creator...thank you Heavenly Father this is true. We call on your mercy for our day. We declare victory and sweet insights of your eyes in our situations. That we know we are far from alone or abandoned we are yours. Amen".

Peace be with you- Sherry

Updates

• We are home from South Dakota. I spent most of the trip driving from Wagner to Marty to do art with the kiddos there. Two out of the five days Emily was sick with food poisoning. I had to decide to just stay in Wagner with her or go out on my own. I choose to go out on my own proving that this old artsy chick still has some nerve. With your help we brought ; 110 bags of Takis chips to the Marty kids and gave them away. We were able to have 30 more bags of chips that we gave away to the Wagner kids...yes, God is all that and a bag of chips. 
• This week MU will call to schedule appointments for specialized MRI's and scans and for a week long stay at the hospital where Emily will be hooked up to try to make a seizure happen. I'm asking for continued prayers in the process, for bubble wrap of protection over the Sandymobile to get us there and back, and for bubble wrap of protection over our family. If you would like to help us with expenses; gas, travel, and stays in Columbia please let me know. 
• I'm planning on doing a set of 4 artsy classes called ; Home for the Holidays in my art studio. Each class will be a make & take style where you get to create gifts.  Look for more info on my FB; Mamasunbear2 events. 

Rocketgirl Four

When you have lost hope and think there is no way to make it through the Lord releases his goodness upon you. He moves mountains and literally breathes life into our lungs. God reignites the flame of the Holy Spirit in our hearts. He brings his lost children home with hope, confidence, and grace.  

In Rocketgirl One I shared about my broken relationship with my mom. How my brother and I are trying to navigate care for the end of her life. It has brought me to tears for the past few weeks. It has reminded me that our parents raised us to be ; smart, capable, brave, and compassionate.  My brother, David, was born with a compassionate, empathetic heart beyond my own. We share the same sense of humor and believe sarcasm is a lost art. 

I've been reminded daily of how I ran away from Des Moines. It wasn't entirely because of my relationship with my mom. I ran away to Kansas City after college. I decided to stay in KC once my dad passed away. To be like the "rocketman" that Elton John sings about floating close but far enough away to run from my own hurt and pain. 

My dad died one week before I was married in 1993.  It was horrible and has taken me years to process. After my dad's visitation my mom insisted that we stay and say good bye to our dad.  Neither my brother or I wanted to do it. My brother looked at me and I looked at him and we watched our mom and didn't move.  I finally went to his casket and felt totally broken. My brother came beside me and promised my dad he would take care of mom and not fail her. I was standing next to him and took his hand and said we both will we are in it together.

I'm brought back to that promise we made to our dad to take care of mom. There is guilt that she isn't able to live in her home. Pain that soon I'll have no parents here on this earth. At moments I'm without words. The precious blessing is my brother is reeling from the same emotions. I have my brother and he has me. 

Last Saturday on our way home from South Dakota I took a detour to Des Moines. I took the turn for Des Moines near Omaha and instantly it felt weird.  I kept seeing the signs on the interstate to turn to go south to Kansas City. I began to pray that I wouldn't turn off and just home.  God, if you intend for me to get to Des Moines you are going to have to help me stay focused and protect me; my mind, heart, and spirit beyond just bubble wrapping me in my travels. I looked out into the sky and saw it was filled with clouds like a trail heading east.  I said Holy Spirit it is going to take more than clouds to distract my brokeness and I felt like there was a beautiful gold light that was winding around my hands, arms, and body and weaving over to Emily and throughout my Sandymobile. Good distraction Holy Spirit, I'll take Wonderwoman's lasso of truth to get me to Des Moines and back to Missouri too.

Emily and I had lunch with my brother.  It was time to talk about small stuff and the larger things too. Half way through my brother said "So, do you want to go see mom today?". Inside I wanted to scream NO and grab Emily and run for it.  Instead I told him maybe we could wait a couple of weeks. David looked at me and said "Sherry, I don't know if she has a couple of weeks and I think you need to go now". Emily nodded in agreement and so did I.

David said not to let my mom offend me because she is out of it most of the time. He prepped me that she looks different from the mom that I knew from age and because she doesn't eat right because of the dementia. We got to the care center and I started to cry in the Sandymobile. God this is bigger than me and not what I had planned. I accepted that you told me in Heavenly realms my relationship with my mom would be restored. Now, I'm here ...help me.

Brilliantly the words brave, strong, and true that have been a part of my prayers came to mind. I knew it was a sign that I needed to stand brave, be strong, and stay true in my faith and not waver.  We got to my mom's room and David brilliantly became the big brother I remember as a little sister. He said "Mom, there's two people here to see you. Do you know them?". She looked and rolled her wheel chair over and looked at us and said "No, I don't know these women, do you David?".  He asked if she remembered who Sherry was and she said yes. He told her that it was Sherry and Emily and we had drove from South Dakota to see her. She asked for me to come closer. I did and she hugged me and said, "Ohh, Sherry, you came so far to see me".

She had no idea that "far" wasn't the miles it took. Far means that the little girl that she raised was a woman who loved the Lord with all her heart and trusted Him. Sherry was standing brave, strong, and true in grace gifted from God. She was standing; not cowering, not running away, standing.

We talked for a while and it was clear that although she was my mom she wasn't my mom. My mom was always OCD about things and with dementia it shows up huge; she washed her hands constantly, went to the bathroom several times, and had to fix her sink area and get towels to scrub the sink numerous times. She asked me "how is your boy doing?" and I told her about Dale. Then I realized that she probably didn't understand what I was talking about. We decided to stay while she had dinner. She brushed her hair several times and Emily looked at me. I brush my hair a lot too and have a hair brush in my car. I looked at Emily and said "apple doesn't fall far from the tree".

My mom sent David and I out into the hall and shut the door on us. It was just her and Emily in her room which freaked me out a little. The precious thing was that she wanted Emily to check her hair to make sure it was ok because "my kids will lie to me".  She and Emily got a chance to talk and Emily felt like the grandma that she loved as a little girl was there with her.

Finally, it was time to leave. I went to hug my mom goodbye and as she hugged me she said "I know your my family but will you be my friend? I really need a friend".  Then she didn't remember who I was or Emily.  As my brother hugged her she told him "thank you for bringing your friends with you".
So, yeah, Rocketgirl Four, has this Rocketgirl returning to Des Moines.  It was a heavy load but no longer a burden or pain for me. It was exactly what I needed to know; my mom loves me, my brother loves me, and although Des Moines holds some heart break for me it is still my hometown.  We stopped by a local grocery store for me to buy sauce that my friend makes and sells there. I was waiting for the butcher to slice some cheese...ok, you gotta have great cheese with the sauce. I started to cry silently. Emily was beside me and hugged me. She said "Mom you are so strong. You have been strong my whole life. Dale and I have seen you remain strong with things that would break most people but not you. Go ahead and cry and know that I will stand strong for you. It is my honor to stand strong for you now".  I absolutely love when God confirms what he says through your children; he told me to stand brave, strong, and true and now I get the joy of seeing my daughter do that for her mom.

The time with my mom broke my heart into a million pieces. There were so many very good moments and then she didn't even really know I was there. Perhaps, the time spent with her was more about me than here. More about me learning what it means to stand brave, strong, and true in the face of adversity, pain, and hurt that has no words.  Our Heavenly Father reflected beautifully how compassionate he is in the time that I could glean with my mom. He gave me a glimpse of the heavenly realms that he promised me in my prayers. For that I am thankful.

Peace be with you- Sherry

Updates;

• We leave tomorrow to head to Columbia, Missouri to The University of Missouri for a consult with their neurological team. They have Emily's records and have reviewed them. We are hoping they will take on her case and can find where in her brain her seizures are happening and are able to do surgery to stop the seizures. Any prayers would be appreciated.