Tuesday, December 9, 2014

Swim meets, Mary, and Me

When it comes to endurance... um well... sprints are really more my thing. In high school I was MVP of my JV swim team because of my 50 yd freestyle sprint. I loved that sprint. I loved standing on the starting block, every hair on end, waiting for the start signal. It was all out - no time to take more than one breath. I was pretty decent at the 100 yd free too. The 500 - not so much. I teared up the first time my coach said I had to do it at a meet. I liked winning and I was not going to win that race unless every other swimmer in the race developed debilitating leg cramps. I couldn't figure out how to pace myself and not go all out at the beginning. That race did not showcase my strength.  
That's similar to how these last 6 months have felt. I thought I had moved through the stages of grief (denial, anger, bargaining, depression, acceptance) rather nicely. I sprinted to the "acceptance" box and had no intentions of moving. Then came the visit to the urologist, the start of our new cath routine, starting on medication. The dominoes began to fall - there were the urinary tract infections, more doctors and more meds. I began to have to live a little more day to day. I started to fully grasp that the cathing, the meds, the multiple doctor appointments - were not things I could just sprint through in the short term. THIS IS OUR LIFE WITH LYDIA! There is no foreseeable end to all this - until Lydia can manage her own care. (and PS - I don't think that Lydia taking over will really relieve this mama's heart too much). This realization sent me on a trip to the weird Bermuda triangle of anger, bargaining, and depression. Seriously. I feel like I've disappeared into this triangle. Round and round I go. Sometimes I visit all three spots in a day. I'm not happy about being here. I'm surprised at being here after I thought I was doing so well. I'm not proud to tell the world I'm still hanging out in this triangle. And yet here I am and it's wearing on me.

In one of my "bargaining" moments I told God something like this, "Couldn't you have given me something else to deal with? The long term stuff is not something I excel at! I would rather have had Lydia be born with something else - where we had to stay in the NICU longer and didn't know what her outcome would be. But we would pray really hard and talk about our faith in You. Lydia would be healed completely and we'd give You all the glory." Translation - I get what I want (Lydia is healed from all physical disabilities) and I cease to have something in my life that continually reminds me of my need for God. I could be self-sufficient and to the world it could look like I had won. 
Then there is the loneliness. I think that being a stay at home mom can be lonely at times. I think having a child with special needs that you are still trying to figure out how to deal with - both practically and emotionally is even more lonely. I don't know how much to share or not share about what is going on. I don't want to be too needy, too emotional, or too anything. It's hard to share what is causing me anxiety when I don't want to seem ungrateful for all that is going so well. It's not easy to confess that when people are talking about potty training, kids going off to school, or summer camp, I immediately start beating back the "how is that going to look for Lydia" thoughts. I don't want to complain about how inconvenient it is to plan life in 4 hour increments (due to the cathing schedule) since of course I would do anything for my child. For the last six months I feel like I've only been half present at anything. Half of me is always trying to get my feelings about Lydia's sweet life in line. It's exhausting! I know it is my own fault for not engaging those around me more fully, but quite frankly I often don't have the emotional energy for it. And knowing it is your own fault doesn't make the loneliness any less palpable. 

As I've been reflecting on the Christmas story of the birth of Jesus, I've been thinking a lot about Mary. I am in NO WAY comparing my situation to hers. For starters, I can assure you Lydia was not the result of a virgin birth. :) But I do wonder if Mary didn't have some similar feelings to me. It says in Luke 1:38 that after Mary heard about God's plan for her to become pregnant though a virgin, and bring the Savior into the world, he response was, " I am the Lord's servant. May everything you have said about me come true." Wow! If you understand the gravity of the situation she was about to find herself in, due to the culture and belief system of that time, then you know that her response is astounding. That is a response I would love to have. But after some hard days, I wonder if Mary ever wished this was not her path. I wonder if she ever felt like telling God she could have done much better in a different situation. Were there any other parts of His plan available? Maybe she could be considered for something else? I wonder if she felt lonely. I'm sure as she stood waiting for her turn to draw water from the well it didn't matter that she was surrounded by women. There probably weren't many women in her village she felt she could discuss her special pregnancy with. There wasn't any other woman who had been in Mary's position and could empathize or understand all that was going on in her heart. Mary didn't know exactly what her child's future would look like, but I think she knew there were parts that were going to be painful for her. She probably also had to learn to live in the moment with her child lest any anxiety about the future steal the joy of the present.  
And what about Lydia??? She continues to be a bright and happy little girl. To look at her you would never know anything is wrong. Several people have commented that it is almost as if she didn't have spina bifida. Well I can tell you I'm reminded that she does indeed have spina bifida several times a day. We had a brief window where cathing was going really well. And then Lydia decided she doesn't have much patience for the whole routine. Since she is not at an age where she can be reasoned with or told to hold still, it makes for some interesting situations. A tiny tube that is supposed to make its way into a tiny hole on a very wiggly baby trying to roll over and crawl away from me - oh and you are supposed to keep that tube sterile. I'll let you imagine how that is going. I have definitely been doused with pee on more than one occasion. The good news is that we ended the summer free of urinary tract infections and she hasn't had one since. In January we will have a test done to evaluate her bladder pressure and have another ultrasound of her kidneys. 

In addition to her bladder issues we now have poop issues. The last part of her GI tract does not have great - or any - muscle tone. This means that unless her stool is very soft her body can't get it to the exit point.  When Lydia can't poop for several days her poor little tummy looks very distended. We are doing things to combat this. The problem is that all of a sudden her system cleans out and we are changing her diaper 4 times in a hour - or worse she is standing in the tub with watery poop running out of her. Not fun for any involved. We are seeing a gastrointestinal MD and praying we can find a way to get Lydia to a happy medium between these two scenarios. 

There is one other thing we found out this fall that is a prayer point as well. Lydia had a MRI of her brain and spine done in October. The fabulous news is that brain looks normal. The not so fabulous news is that there is a sac of fluid at the base of her spinal cord. The doctor thinks it is slow growing, but it will have to be taken care of at some point. The doctor is hoping to wait until Lydia is older so he can take care of the fluid sac at the same time he takes care of her tethered spinal cord. We will do another MRI in April to see if this sac is growing. Please pray that this fluid sac does not grow. 
Despite all that is hard - Lydia is an absolute JOY. We thank God every day that we get to have this little wonder in our lives. I wish I could bring her around to each and every one your houses to hang out for a while because I think she's kind of a big deal! I mean look at her!