Let Your Words be Anything but Empty

A couple of years ago, for a family reunion, my aunt organized a tour of the Make a Wish facility closest to us. If you have never done that, you totally should. They really work hard to make wishes come true and to make the whole experience amazing. I loved reading about all of the wishes hung on the walls. There are beautiful stars hanging from the ceiling with names of all of the kids on them. I hesitate to call them "lucky" because the reason they were given a wish is never for a lucky reason, but being granted a wish must be a really neat experience.

At one point during the tour, they took us out to a beautiful little garden with a pond and gave each of us a wish token. We could make a wish and toss it into the pond. I think I wished that I could know what Becca would wish for. This is a picture of Becca's token. I put it on a chain and I wear it sometimes, still wishing I knew what the desires of her heart are. 

I know her pretty well and I can probably guess what's wrong with her faster than you can, but there are still so many, many moments that I am at a loss for. I can't always stop the tears. I don't always get to a diaper fast enough. I get frustrated and she is not always the only one crying when something is hard or it hurts. I still wish I could somehow lessen her burden at the same time hoping that it doesn't always feel like a burden to her. I hope that our love for her and the wonderful things and people we try to surround her with help her to feel loved. 

It would feel weird to make a wish for her. It would be my wish, not hers. 

I recently ran into an article that articulated some of the feelings we have raising Becca. I wanted to share it with you with an explanation. I am mostly able to keep a grasp on the idea of having an Eternal Perspective. That is to say that I believe with all of my heart that Becca's disabilities are temporary. They are for this earth only. When she leaves this life, her spirit will be free from the hinderance that this body gives her. I also believe that this body is a protection for her spirit. There are so many negative influences that can't touch her in a body like this. She is pure.

We know our family looks different. We know if you do not have someone in your family with disabilities that there is no frame of reference for you to completely understand what we are going through. I do not understand what you are going through just from looking at the outside of you either! I know that people mean well when they say these things. I have even said things like this! I must say, though, that the longer I live, the more I live by the rules she outlines at the end. Someone who listens and who will make a genuine effort to be a good friend is usually exactly what I need. Don't we all? So, as you read this article, know that I have felt exactly this way, but that I don't always. I know you mean well. I know you are trying to help and be kind. And maybe something she says will hit your heart the right way and next time you'll try to say it differently. You'll do the right thing. I am surrounded by wonderful people in my life. Thanks for being one of them! Thanks for taking the time to read this and understand me a little better. 

Click here for Dear People Who Do Not Have a Child With Disabilities

Click here to listen to one of my favorite songs from which this title was taken: Brave by Sara Bareilles

Day 10 - A picture of the person you do the craziest things with.

If you'd asked me 11 years ago if I'd be doing half the stuff I do, I'd have called you crazy! My partner in these crimes? Becca, of course! I have done more out-of-the-ordinary things with this girl than I ever thought possible!!

I remember taking my teensy, sqeaky 3 month old baby girl to get her very first hearing aid. At one year old, she got glasses and a second hearing aid. This picture was taken at 2 years old. Not very long after this, we gave up on the second hearing aid as we could never find any hearing in that ear and she hated the aid in her bad ear, but left the better one alone. That's how we knew it was working well for her. :) And when they tried to move up to a stronger prescription on the glasses, she refused to wear them ever again!

Several times a week I would let complete strangers in my house to manhandle my daughter and do all kinds of therapies on her. Of course, they didn't stay strangers for long! This is Donata doing PT. She also got OT, Speech, Vision and Hearing visitors... from a few weeks old to 3 years old, every week. Becca learned to love therapy and also what to do to get them to stop. She was the BEST at playing possum with her first PT Curt. She would fake sleep until he stopped and then she would be all alert again. :) I love Early Intervention and I am so grateful for their persistence and patience and friendship.

I sent someone who couldn't do anything for herself away on a bus every day to preschool. I put a lot of trust in her bus drivers and teachers to take care of her the way I would and send her back to me tired, but happy. This was from her first day of preschool which happened on her 3rd birthday.

When Becca first started losing teeth, I freaked out! First of all, I didn't know where it had gone! And second of all, the first thing I assumed was that something was terribly wrong. My Mom reminded me that she was the right age to be losing teeth and it was the first milestone she hit right on time!! :D Loose teeth still freak me out.

We do all kinds of other "crazy" things on a daily basis. I feed her with a tube directly into her stomach 5 times a day at 8, 11, 2, 5 and 8. She actually had a tiny seizure today, but she hasn't had a really big one in nearly a year and a half. Seizures are horrible and I wouldn't wish them on my greatest enemy. I do tons and tons of comfort caring and really just everything the rest of us do for ourselves... I do for Becca.

So if I use the definition of crazy that includes the words bizarre and fantastic... I do bizarre things for a fantastic girl every day. And if that makes me crazy... I love being crazy!!

Miracles Disguised as Trials

There's a beautiful story in Mark 2: 3 - 12. It is about one of Jesus' many miracles that He performed while on the earth. In my own words, it is about a man who was sick with a palsy who was brought to Jesus in a crowded place by lowering him on his bed through a hole in the roof. The first thing Jesus did was to forgive him of his sins. Then the people standing around watching began to criticize Jesus saying that He did not have the authority to forgive sins. Jesus asks them if it is easier to forgive his sins or to heal his physical ailments. And then Jesus also heals him of his palsy and he gathers up his bed and leaves.

Putting myself in this man's place, I think he must have been begging to see Jesus. He, and his loved ones, must have desired this so much that they were willing to climb to the roof, remove the tiles and with ropes four of them lowered him into the building where Jesus was. If he was a true believer, and he must have been to have ultimately been healed, he would not have had an agenda to the visit. He would have HOPED for healing, but he would not have expected it. He would have left it to the Lord to decide what He would do with him. I imagine that when the Lord pronounced his sins forgiven, he must have felt the most warm, peaceful, forgiving feeling. His soul at that moment became as white as snow though his sins were as scarlet. The burden of all of his past wrongdoings were taken from him and he didn't have to bear them any more. Whatever he expected while being lowered in to see the Savior, the feeling of having his sins lifted from him must have been an incredible feeling! So liberating! So full of relief! And then to have his physical suffering suddenly relieved also must have been the icing on the cake, so to speak. I wish I could have seen him walk and dance out of the building. I wish I could have known what he did with his life after "his miracle."

So many times we are so focused on the minute details of a day to day trial that we don't view it as a miracle until it's over. The other people that witnessed this man's miracle were only focused on the outward appearance of a miracle... only what they could see. How could they possibly have understood this man's complete transformation, inside and out? How often do we forget where we were and how far we have come? How quickly we forget the baby steps we took to get to our own miracles. Do we pay attention to the small miracles that the Lord sends us every day?

When Becca was born, all we knew at first was that her head was very small. A day or two into life, she needed extra help to keep her oxygen levels up where they needed to be. Within the first week, we discovered that her brain and other assorted organs had been attacked by a virus while she was still growing within me. After a few more days and a bout with RSV, we were sent home with a baby with unknown potential (like every other baby) and also a damaged brain, oxygen tubes, monitors and behaviors that soon led to other diagnoses like Cerebral Palsy, Vision impairment, Hearing impairment, Nonverbal, Seizures, etc., etc., etc. (very unlike most other babies)

Looking back, I can remember a lot of hard days and nights... a lot of really hard news to hear... a LOT of prayers and fasting and pleading with my Heavenly Father to let me keep my child. The pervading sentiment I felt to my very core was that if she was supposed to stay, she would get to stay, but that I wasn't in charge, Heavenly Father was.

We got to keep her. She's still here. And she suffers ...sometimes a lot. She has limitations so numerous and varied that she is in a physical category with 4 - 6 month old babies. Mentally, who knows? I think she understands far more than she's able to communicate, but I can't prove it. :) Nowadays, she is comfortable and healthy and very, very happy MOST of the time. When she is not any of these things, it's a guessing game to discover the problem and fix it for her. I rely heavily on my Heavenly Father and the whisperings of comfort and inspiration that come... if I'm ready... if I can hear them... if I'm listening.

I would be an extremely ungrateful daughter of God if I forgot where I came from. If I whined about the things I go through now when I prayed so hard to keep her in the first place. If I forgot the miracles that got me here.

Do I forget? Yes, sometimes. Do I cry in the middle of changing a diaper because the weight of how many diapers I have changed in my life and the diapers that I have yet to change in my life seems never ending? Yes! Do I fret and worry about the looming dark lord of cerebral health, namely seizures? You bet I do! Do I ever have pity parties full of statements that all add up to "Poor me," not even "Poor Becca?" Yep!

Eventually, a loving Heavenly Father always reminds me about my own miracles. He lovingly gives me moments with my Becca that make ALL the other gobbledygook worthwhile. He doesn't take the hard stuff away from me and He doesn't stop my growth by stepping in and doing it for me, He just subtly strengthens me and hugs me when I'm down and sends me angels (both Heavenly and Earthly) to help me along my way.

What a wonderful, desirable blessing that man received by being able to walk out of that building. And what an even greater, more pervasive, loving, comforting feeling he must have had to know that he was clean and pure as well.

When it is Becca's turn, she will RUN into the waiting arms of loving family and friends that have gone before her. I have a LOT more work to do to be able to be with her. And by golly, I hope I have enough marks on the good side of the chalk board and that I've done a good enough job repenting for the marks on the bad side to be able to be with her for eternity.

Make A Wish!

During a (Hammon) Family Reunion this summer, we enjoyed a tour of the Make A Wish Foundation in Salt Lake (You should go!). I, like so many others, assumed that wishes are for children with terminal illnesses; Otherwise normal kids who have a disease that will shorten their life. The woman giving us the tour was adamant that they don't use the word "terminal" anymore to describe their Wishers. Instead, they say they have "life threatening medical conditions." Many of the kids they grant wishes for get better in the long run. She also said that some of them later get jobs at Make A Wish and make a difference helping other kids.

I have very, very, VERY mixed feelings about granting a wish for Becca. No matter which way you look at it, it makes me feel like I have to admit that Becca will die early. She doesn't have a 'treatable' condition really. I know that the things that CMV has done to her body will never let her be completely healthy or whole. Her medical conditions certainly threaten her life if I don't stay completely on top of them and do everything I can and everything doctors recommend and even those things I feel inspired to do for her. BUT having someone gather and spend money on her because of this fact is impossible for me to get my head around.

There is also the issue of her not being able to communicate. How do I know what her truest wish would be? I like to think she is happy and content with how we do things. She rarely complains anyway. :) Anything that we did for her would be what WE want for her and not necessarily what SHE would want for her. This wouldn't seem like such a big deal if I didn't walk slowly around and read all the pictures on the walls of wishes kids made that meant so much to them. They had heart's desires that were fulfilled. I'm fairly certain most of Becca's heart's desires are to sit quietly with her family and 'hang out.' :) Besides, I'd probably want something boring like a ramp on the house or someone to invent a fuel efficient wheelchair adapted van. Wishes are supposed to be to meet someone famous or to be a superhero for the day or to go somewhere amazing. And, depending on the day, NONE of those things would get a reaction out of Becca.

At one point in the tour, they took us out to a cute little fountain with statues of children in it and gave us each a token with which to make our own wish and throw into the fountain if we wanted. I still have my token. I couldn't bring myself to make a wish.