A little about me

Brent and I were talking the other night about how the past month has felt like one of the longest months we had in a long time (stupid February being long this year, lol).

I will be honest, I did not think them coming up with a possible diagnosis would hit me as hard as it has. This past month has been rough emotionally for me. I feel like it should not have hit me as hard as it did because it is something we have been trying to figure out for 3 years and something I so desperately want to know, but its still not easy. I feel like while everyone around us is excited that it looks like we finally figured it out, here I am sitting excited and anxious and scared. I feel like everyone else thinks that I should be processing through this faster then I am, even though no one has said that. See while we have known for three years that something is going on with our kid, we have yet to have a big diagnosis. Sure there have been little things that have felt like punches to the gut along the way, when she was 2 months old and I heard doctors in the hallway talking about her and label her "failure to thrive" I just wanted to cry. When they looked at me and told me to start thinking about the type of wheelchair that would work best my heart sank a little. Last week when the doctor told me that she would likely be going in for a surgical test every year (still the hardest thing is giving her to surgeons and watching her go through those doors, it rips my heart out, even when it is routine) it made my heart hurt a little. But it has been a lot of little things to work through, and honestly there have been times were there has been so much going on that our process time is so short because we need to jump in and do the next thing. Sometimes the goal is just to keep going through the day and in those times you are not processing it all, you just do what you have to do. This past month I have had to stop and process. I am having to work through a diagnosis, but still keep myself guarded in case genetics comes back and disagrees. I thought that three years of going through the "little" punches would make the big one easier, and to some degree it has, and in others it has not.
And being pregnant does not help emotions at all (I am trying hard not to cry today as I lost the ring Brent got me last year for Christmas, not my wedding ring, but still meant a ton to me, looked at my hand at the zoo yesterday and it was gone, remember having Sunday night, no clue when it fell off) I will be honest, if you ask me how this pregnancy is going I will probably tell you fine. I will also most likely be saying fine at the same time I feel like crap. Pregnancy is not easy for me. I am not that glowing, feel great pregnant woman... every part of my body hurts, most foods are absolutely repulsive to me, I am still getting up in the night trying not to puke, I am dizzy frequently, I have zero energy, my lungs hurt, I have not had a full night sleep since.... I honestly don't know when. But really who wants to hear all of that when they ask a pregnant lady how they are? Plus, I just feel like I am whining when I do let it out. I don't like to make excuses in life, I just do what I need to do, and sometimes that kicks my butt. This is my last pregnancy, and yes I will miss not feeling the kicks inside of me, but the rest of this I will not miss. And yes, I feel bad that I don't enjoy pregnancy more.
But there is a part of this all that I have not shared with many people... and that is that when the doctor looked at me and told me he believes he knows what is going on with Jillian, he also said he believes I have a version of it too. To most people that will not make any sense at all, however if you have known me for a long time, or know my odd health stuff it will. It makes a lot of sense. It ties together my daily joint pain, my random times my lungs stop working with no trigger (I was almost intubated in high school because after 2 hours of neb treatments my lungs were not functioning), it explains my GI issues, my heart murmur, why I have arthritis in my joints already, why I have had a lot of odd injuries (I broke my wrist once opening a screen door...), my low muscle tone in my core, why when I stand still for more then a minute or two I feel like I am going to pass out or vomit, why my pregnancies are so physically rough on me and why Jillian's delivery was the way it was,  why I get tired so fast doing simple things, my odd food allergies with odd reactions, why for the life of me I can't run for more then 30 seconds (I have tried couch to 5K multiple times, my body gives out after 30 seconds of running) but most people don't know these things about me... frankly because they are my normal, and I really don't feel like complaining all the time. No one wants to listen to someone whine. I just live my life and adapt where I have to. I gave up my dream of running a RunDisney race a while ago because I know my body can't do it, but I try not to focus on the things I can't do because that is just depressing. My "this" is less extreme then Jillian's, "this" however is a continuum, where some people are effected more then others. I have had doctors tell me in the past that I have a lot of really odd health stuff for none of it to be connected but until now, until putting Jilli and my pieces together, it was hard for them to see the connections. So in the last month I am not only coming to term with Jillian's diagnosis... I am also coming to terms with my own. For both of us it does not change a ton in our day to day lives, it is just managing all of the parts, there is no treatment for the overarching and things may continue to degrade for the both of us, but at no known rate.
As I was sitting in church on Sunday listening to the sermon, I was reminded of a question that I have had a lot lately, "why are we getting the diagnosis now?" This has been a three year journey (ok 26 year if you add my part to all of this), why now? Trust me, its not that I don't want to know now, thats not it at all, its just I know God has a purposeful timing for everything, why did He choose now. I look at how it is finally now that all the pieces are fitting together. We needed that odd test result, and that life event, and that sickness... everything had to come together. If we had seen this same doctor 6 months earlier I don't think he would have come up with the same thing, because enough of the pieces were not clear at that point to put it together. Its one of those times in life where you look back and see how a ton of things that you have gone through have led to what is going on now and you understand that you had to go through those things to end up here. Would we have done some things differently if we had known sooner, would it have changed things that we needed to walk through? I'm not a person who believes in a life of chance.
So if you have interacted with me in the past month and I have been short and distant, I'm sorry. I know that I have not been the warmest person lately. I know from the outside I have not let most of this on lately. I know it is easier to understand we are going through a rough time when we are in the hospital or having testing done, that the past month has looked from the outside like our same old, same old, but to us it has felt far from that. I also feel bad that I have not been super supportive of others lately, cause I know everyone has stuff going on in their lives that is effecting them and I hate when I realize that I have been consumed with my life and have forgotten to help others as much as possible.  
Thank you to those people who have loved on us. I got a calendar invite last night from my mom for pedicures on Saturday cause she knew I just need to do something to destress a little bit right now. Thank you to friends and family who have text, emailed, called to see how we are doing. I can not explain how much your kind words have meant. Thank you for people who continually pray for us.
In other diagnosis journey news, I called yesterday to central scheduling to schedule Jillian's audiology appointment. Nuero had said if audiology had not called us in a couple of weeks to call them and since I had not heard from them that I what I did. Jillian has been complaining a lot lately that things are too loud so it is most definitely time to get her ears checked again (although I struggled with motivation to call because audiology has been very frustrating for us in the past). When I called central scheduling they asked the referring doctor and I told them Jillian's neuro, they said that he can not be the referring doctor because he no longer works there... well that was news to me (we just saw him in February). We got her audiology appointment scheduled with someone we have not seen before so I am hoping for a good experience and they can help us figure out what is going on. The neuro nurse called yesterday and said she had gotten a message from central scheduling that we had found out about the doctor leaving and to call us. She explained the situation of him leaving (he is actually going to go help refugees which is rather cool) and apologized that none of the orders that had been placed at our visit had been followed through on, apparently he had put in the orders but forgot to digitally sign them so they had someone else look at Jillian's file yesterday and sign the orders so we could have them done. The other thing that we were waiting for was the referral to the neuro muscular clinic. I brought up the possible diagnosis with her and what all is going on with that. She then spoke to the neuro muscular nurse and they decided that since it will probably still be several months before we get into the genetics clinic for "this" that they still want us to go to the neuro muscular clinic. They said the neuro muscular clinic is currently booking in June and that someone will call me soon with our appointment time... looks like June is going to be rather busy here!   

I LOVE this shirt! It says "Absolutely perfect, that's what my daddy says"

She is such a ham sometimes!

Library time. We love going to preschool story time at the library!

She got a Rapunzel Barbie the the mail this weekend from Aunt Sandi! She was SO excited!

Doing school work. She LOVES to do school time. I cut out these letters and she sorted them. She was so proud of herself

We went to Ikea on Saturday... this was Jillian's feeling about Ikea... she found it to be too loud

She looks so grown up! I love her little pants! She loved the mouse on her shirt and kept singing "hickery dickery dock!"

We got this 32 piece puzzle for Jillian on Saturday... she put it together all by herself! She is loving doing puzzles!

She was trying to convince me to let her sleep in her tent... it did not work, but she was cute making her case!

We went to the zoo yesterday! It was beautiful out and we had fun spending time together. I am all for nicer weather!

Sleep has been really hard for her lately. It has been taking her several hours of sitting in her bed to fall asleep and she is waking up too early and little miss rarely naps. Monday night she fell asleep around 10:30 and got up at 6. She has also gotten up a lot during the night. She has been really good about staying in her bed until we tell her she can get out. Last night her body was just so tired she cuddled with me and slept... that does not happen often anymore and I loved every second of it.