When I was younger my dad ran an INNS site. INNS in my home town is a program where different churches open their building for homeless people to spend the night. Different churches take different days. Through this my dad got to know different people in our community that are homeless. I remember times were we would be out someplace and we would talk to people that my dad met from INNS but what he taught me was that they are people too. They have names and stories. When I get those "those people" thoughts I try to remember what my dad taught me about homelessness, that really we all like to think it will never happen to us, but the reality is, it could. Yes there are some demographics that you tend to think of when you think of homelessness but I was taking to a friend recently about how if medicaid is changed the reality is medical bills could become too much for families to pay both the bills and keep a roof over their heads. We tend to think someone is homeless because they don't work but its not that black and white.
As I was thinking about that I started to think about all of the times in my life that someone took a chance on me. I know people say a lot of life is about sizing the opportunity, but I think it is also equal parts people taking chances on you.
-When I was in 5th grade I was asked if I could help doing slides for our Saturday night worship service. This was not the kids or teens service but the adult service. I asked my parents and they said sure (my dad has played in the church band most of my life so we were there before service anyhow). Once I moved to going to the teen service I ran the slides ministry until I graduated and then once I got into college I did slides for our college ministry. But it all started with someone asking an elementary schooler to help. That was a chance.
-I started teaching the 3yr old Sunday School class when I was in middle school. Some weeks it was me and an adult, but there was more then one time when it was just me. Most weeks there was around10-12 kids, sometimes less, sometimes more. I read the curriculum book, I taught the lesson. I remember in high school I would work on it during our silent reading time. I taught that Sunday School class until I went away to college. Those kids are all now in middle and high school themselves. But someone took a chance on me. Someone saw my love for kids and helped me find a way to be a part of the church. It gave me amazing experience when I went to school to be a teacher. Someone took a risk letting a middle schooler be in charge of a Sunday School class.
-I was a nanny the summer between graduating high school and starting college. I moved to a different state to live with close family friends and watch their 8 year old of the summer. It was an amazing summer. Someone took a chance and let a 17 year old nanny their child.
-When I got my first college job working at a toy store I fell in love with product ordering and merchandising. It was a franchise store so the owner was able to buy and display things how she saw fit. I was put in charge of Crocs which were just making it big at that point. I got to go to the Chicago trade show. She took a chance on a college freshman, but that gave me experience that later helped me at my first post college because I understood the organization needed.
I look back at all of these different experiences and countless others, yes I ran with the experiences but someone had to give me a chance first. People invested in me. They taught me the skills I needed and trusted that I could do it. That helped to build confidence which helped with the next experience and when I struggled with something people helped me instead of giving up on me. Its a spiral, one thing leads to another. I was busy doing church stuff in high school, I didn't have much time to do stupid things. Thank you to all the people who took a chance on me over the years! It has shaped who I am today. Who have you taken a chance on lately? There is a difference between stupid and unsafe chances and chances where you help someone grow.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Today we had neuromuscular clinic. Our Dr. is smart. Like crazy smart. But he also cares. He walked in and shook my hand and asked me if I am holding up. He acknowledges how hard some of this is and he takes the time to ask how I am. That means a lot to me. We talked about genetics some, he has a degree in both. Honestly conversations with him make me really grateful that I always liked genetics in school because I can follow along. We talked about the botox that Jilli has in September and he is not surprised at all about the total body impact. He said that most doctors think when they put botox someplace it stays right there but in reality some always ends up in the bloodstream. An adult is so much larger then a kid so when some goes into the blood it doesn't tend to effect anything but in a kid it can have the effects we noticed. I also talk to him about the length of time it lasts (he uses botox to help kids with muscle stiffness) and he said for some people 3mo, but for other 6mo-1yr which makes sense with Jilli it took about 4mo to see it start to loose its effect. We talked about wheelchair options since we meet with rehab in a few weeks and they will be making a referral for one then. It was good to get his input on it. We also talked about her need for oxygen. He agrees why she needs it and why it is best for her. We discussed a few different things with it (she has a muscular cause for the need for oxygen) He agrees with my worries about the 6min walk test only being a short snip of time and not truly accurate for what goes on with Jilli. He also said that he would like to repeat muscle biopsies every few years so we can watch for deterioration. We are debating if we do it again this year or next. We want them far enough apart so we can see changes but yet want to keep an eye on things. I told him that we try to do all surgeries in the fall. That way it is done before flu season. I told him that if we have to we can do it a separate time but we do a throat and stomach scope every year and we prefer to only send our children into the OR once a year and we ask that everyone work together to make that happen. He agreed. We see him again in 6mo so we will decided at that time if the muscle biopsy is happening this year or not. Right now it could go either way. There has been talk of doing the muscle biopsy differently this time then last but we will see. During the appointment Jilli pooped and Lydia insisted on being held and trying to eat books. At one point they had a screeching contest going on. Yup, thats how some days are!
Before we went to Jillian's appointment we stopped at the lab for Lydia. Special Needs had called me a couple of weeks ago about stopping by the lab at some point to rerun a few of Lydia's tests from the past (nothing urgent, just data points to see where some things are trending). Well my plan was to stop there the day of the genetics appointment but I totally dropped the ball and forgot until I got paperwork in the mail this week from special needs with the review of our appointment in December and then in dawned on me about that phone call. Crap! Mom fail! So we went to the lab today. I swear they said they wanted urine but they took blood today. Lydia barely even flinched. She just cuddled with me and let them do what they needed to. Apparently Jilli found it all funny!? They got it in only one poke. Overall I think that was the calmest blood draw either of my kids have ever had.
Jillian's appointment was a little harder on our heartstrings because it was in the same room as her EMG. They didn't have the EMG machine in the room but Jilli and I knew when we walked in the room where we were. That test was hard. Jilli was a champ for it, but it still sucked. Jilli asked as we walked in the room if it was going to be poke like that again. I told her no. We got in the room and she played for a minute and then asked again and I told her no again. Once the dr came in she was fine and didn't ask again and perked right up. She is very resilient, they both are. Sometimes how resilient they have to be breaks my heart a little. Blood draws and crazy tests are normal to them. The fact that they handle it all so well is amazing and I am so grateful.
Tonight I also caved. Around Christmas time we transitioned Lydia out of sleeping swaddled. She can't roll over in her sleep because she is in a rock-n-play so swaddling her is not a safety issue but it is not something she can do forever. Well tonight I hit my breaking point. No one has been getting much sleep here. Brent and I both felt like zombies this morning because it is taking us until midnight most nights to get Lydia to sleep (we start around 9pm) and then she still wakes up a couple of times during the night for a few minutes crying. The kids have also been getting up between 6-7:30. It just hit the point where we needed sleep tonight and she was fighting harder tonight then she has been so at 10 I caved and swaddled her and but her in her bed. She was asleep before 10:25. I guess we need to decided what we are going to do from here about swaddling but tonight, we have to do what we have to do, I feel a little bit of mom guilt over it but at the same time I am hoping for sleep...
and on that note... good night!
 |
| She plays with her tongue all day long, sill girl! |
 |
| Reading Lydia Shoe La La |
No comments:
Post a Comment