I have been procrastinating on writing an update on Mimi for awhile now and I am feeling terribly guilty about it.....
What's going on, you might ask. Well, a whole lotta nothing! We are enjoying hanging out with the kiddos, buying baseball cards with Miles, and playing Barbies with Mimi.
Mimi is adjusting and doing really well. We are getting ready to embark on a new year, a new school, and really, a new beginning. We are pretty nervous about the new school and friends for her- will the other kids KNOW she is as awesome as we know she is? It is a scary, scary time.
Medically, we are kind of at a stalemate. We are currently looking for a new pediatrician for Mikenna, we see the orthopedist on Monday, and the neurologist next month.
The past few months have been extremely enlightening for us as a family. Nelson and I met with the neurologist at the end of May, just the two of us. We wanted to get a clear view of Mimi's future and ask some basic questions without her in the room. It was very informative..... in more ways than one. We had the chance to look through the bulk of Mimi's medical records with the doctor (I am talking INCHES of files), and we were shocked to discover that there was a least one phone call to her pediatrician by someone close to us who discussed with the doctor Mimi's health. We were devastated to learn that our doctor had had a discussion with someone, other than us! Not only that, but we learned very painfully that the pediatrician was told that we (Nelson and I) had misconstrued Mimi's medical history, and that we ultimately lied to get a Cerebral Palsy diagnosis, which is now in her medical record (we think that might have had an impact on the way the doctor treated us at the Shriners- she had a copy of the file as well). Needless to say, it has been a really rough few months. My heart hurts that anyone could believe that Nelson and I wanted Mimi to have CP, or anything for that matter. We have come against some pretty tough accusations, and it has taken its toll on me (and Nels) emotionally. We have received letters, emails, phone calls and the like accusing us of being terrible parents for believing she has CP, that we just want to collect money from the government (that one's my favorite), that we don't have enough faith so that she could be healed....and on and on.
On the other hand, in many ways the Leupp family couldn't be more blessed. We are so very grateful to those of you who have stood by us, loved us, and been there in the middle of the night when my heart is broken and I need someone to talk too (or need some escapism, thank you Christy Anderson!). You know who you are, and I am forever in debt to you. We are also thankful for those who have opened their arms to Mimi-Miles too- and helped her gain back her self-confidence (Ryan, you have changed her little life. Thank you for being her "cow," her friend, and her first crush!) Mimi has some amazing little girlfriends as well, whose parents have done a spectacular job of raising them, and addressing the situation with Mimi so that they continue to treat her just the same, they are giving her a glimpse of it feels like to walk with the unconditional love and compassion of Jesus.
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| Mimi on her "date" with Ryan |
When we first got the diagnosis, I think we went into over-drive. I put on the brave face, put my hurt in a box and stuck it under the bed. As the shock has worn off, and we move into the "forever" of it all, that box keeps popping up in weird places, like the scary doll in horror films- or the broken doll my dad used to hide in my aunt Darla's car, bed, fridge, etc. I fight to keep it together somedays, I find myself crying A LOT. My emotions flop from weariness, to sadness, to disappointment, to guilt, to believing that I am a terrible parent and I don't take care of my kids, that my accusers are right, and it makes me depressed. We, me especially, could use your prayers. Simply put, it is just HARD, it is battle. Everyday I have the privilege of seeing the bravery and courage of my little girl, like when kids point at her legs, or just walk up and ask her what's wrong with her. She's tough and she's sassy! I really don't know if it is a good thing, but this is a repetitive exchange we have been having:
Mimi: "Mommie? You know what?"
Me: "What?"
Mimi: "Today, I don't feel like being handicapped."
Me: "Ok. You don't ever have to be, if you don't want to be."
Mimi: "Yeah, I'm not today."
Me.: "Ok."
....... the next day, or even later in the day.......
Mimi: "Mommie?"
Me: "What?"
Mimi: "I want to be handicapped right now."
Me: "Ok. Why?"
Mimi: "Because I want to use a handicapped parking spot!"
and sometime: "Because I want you to carry me."
But she almost always finishes with: "I will always be handicapped when I go to Disney World."
Me: "Why?"
Mimi: "So I can go to the front of the line!"
And then she laughs. She can successfully make me laugh and cry at the same time!
So we struggle, we laugh, we hurt, we are blessed, and we move forward. I realize more and more that people care very deeply about Mimi, and it has changed the way people feel or look at Nelson and I. Please know that we really would do whatever it took for our children. That we love them unconditionally, and while we may not be handling or doing what some consider to be in Mimi's best interest, we try really, really hard too.
This has always been one of my favorite verses, and I think I have shared it before but it means more to me everyday, "Rise up in the night and cry out to your God. Pour out your hearts like water before the face of the Lord; lift up your hands to him, and the lift up the lives of your young children." Lamentations 2 :19. Even though sometimes I feel like I am pouring out my tears more than my heart- Nelson and I desire to lift up the lives of our children.
So that's what is going on with the Mim-ster. I realize this post may seem like a giant downer, but I want to be up front about this journey, that in the struggle there is great joy and perseverance. That glory can go where it is due, and when Mimi looks back at this blog she will see the prayers answered on her behalf.
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