Tuesday, August 3, 2010

Hard Day

I am really struggling today. I feel like everything is just crashing in on me. I am 100% glad I went to the conference this weekend; I learned so much that I needed to know. And while knowledge is power, knowledge can be hard. Since I returned home, I have processed things in my head over, and over, and over. I almost feel the way I did when I first got her diagnosis, all over again, and this time, I "get it" a little more. I know I will get past this feeling of being so emotionally overwhelmed. Apparently it just takes me a while, and from what I have heard, it could happen again.

It probably doesn't help that I am not feeling that great, physically. I don't know what's going on. I sang in church Sunday, which I have done dozens of times before without incident, but at the end of the second "singing" time, I really thought I was going to faint. I have never fainted...ever... and I don't really get that nervous before I sing. I did get a little hot, but I have been hot before. I was so dizzy the rest of the day and ended up with a killer of a headache. Maybe stress? Maybe too much exertion this weekend? Who knows, but either way, it has not helped me emotionally, that is for sure.

My mood today, really started yesterday. I went to the grocery store last night, and I remember standing beside the baking supplies and all of a sudden, feeling like I just wished I could do something else. My body just felt like it was going to implode; I didn't know if I wanted to cry, scream, crawl in a hole, or what. I thought about sitting in the floor and bawling, but I was pretty sure that would not go unnoticed by others around me. Then I just wanted to eat, but that would just make me miserable in the end. The bottom line is, none of those options would help Clara, which is what I really want.

Just today, I have heard "wind" of well-meaning friends telling others things about Clara that are just not true. That has not helped my general "funk" today. The bottom line is, this is a dangerous disease. It is, in Clara's case, congenital, and it is very genetic. There are NO cures at this time, regardless of what others want to tell me or sell me. She is not "just a little tired, but will get better with some vitamins". Don't get me wrong. I don't want 'big drama and fanfare', or everyone walking around pitying her or making her "special" because she has a disease. But if someone doesn't know what they are talking about, they shouldn't say anything at all. That goes for anytime...not just about someone's child. This was said to people who wanted to pray for Clara, and by someone (or some ones) who I have considered a friend. It IS a big deal and she needs all the prayers she can get. I know I shouldn't care what others think....that just threw me for a loop. I don't want to be petty either. It is just so frustrating. I guess I will learn who my friends are.

Clara woke up today feeling "yuck". She told me her body hurt all over and she wanted to lay around. As I sat there holding her, I just thought, "Who am I to spend this much energy being this upset, when she deals with intense pain, almost daily, like such a champ?" She has been through so many painful procedures and rarely complains. Everything in me wants to just build a fort around her so nothing else can hurt her or harm her, and no bad germ can ever get near her. One sickness or one fever can change the whole course of this disease and that scares me to death. As every parent in this situation, I would give my very life to make this sweet girl well. But my life wouldn't help much. I am so thankful for Jesus, who DID give His life, to make us all well...spiritually well, and I praise Him that one day, whether on this earth or not, she is going to be well in every way. We are still praying for complete healing. We believe it can happen.

So sorry this is so depressing. it's just where I am today. This has been a stressful year, anyway, with Clara's diagnosis, trying to sell a house, dealing with Emilie's junk, and the list goes on. I think the past few days, it has all come together and wiped me out. Of course, I need to be preparing for our trip. I have GOT to get over this.

There have been some wonderful things happen today. I have an appointment with the Mito specialist I told you about. She is scheduled for September 15th, which is also a Wednesday so Jeff can go too! That is rare that he gets to go along with us, but this one is very important, so I am glad he gets to go. Also, we are really, really suspecting some blood sugar issues with Clara (that can very much go along with Mito) and Mito-Mom called today and wants to loan us her glucometer and a ketone meter. I am so thrilled and touched by this. God has put a truly amazing person in my life to help me through this. Mito-Mom, you are the BEST!!

As I type, I got an e-mail from a sweet, sweet friend in Michigan who has been researching mitochondrial disease specialists in that area for our trip. I did not ask her to do that...she just did, because she is so thoughtful and because she loves us. God really is so good and the most excellent provider.

So, what does a Mom do when she is almost too overwhelmed to function? Well, I don't know about others, but this one does something crafty. I wanted the girls to have hooded towels to take to Michigan, and I found some on clearance a Kohl's for $35 each. YIKES! $35 x 4??? Sorry. Can't do that. So I found some here and decided to make them and use the left over towel for a beach bag to carry their towels and sunscreen in. You may be surprised that the big girls want one, too. I have one thing to remind you of: The big "M", little "m" activity. 'Nuff said. :-) Here they are:

Here they are. Both babies wanted pink, so I just made the trim a little different. Alyssa wanted green and no trim. Surprise. :-)

I am in the process of making them all bags to match their towels, but Emilie and Clara's bags are the only ones that are (almost) done. They still need straps.

This is just a bonus. I thought it was cute. :-)

Well, tomorrow is another day, and His mercies are new every morning. I'm looking forward to that. :-)

Love you all! Goodnight!


1 comment:

  1. Hang in there Jeannie. I have never walked in your exact shoes, but in similar ones. I can completely relate to what you are feeling and 75lbs of comfort eating, etc. is how I dealt with Katie's Cancer. It took me a while to find the strength to allow myself to heal physically and mentally.....and I am still dealing with that. I don't have any words of wisdom or magic thing to say except that you are in our prayers, and somehow you find the strength to keep moving forward....and again, you get really ticked off at people along the way. Just yesterday a parent of a soon to be Kindergarten kid said she wishes she could get the free services that Katie was gettingso they didn't have to pay---that is wasn't fair. I responded----"Well, all you have to do is let your child get Cancer, go through 2 1/2 trs of daily chemo, watch her almost die, have the child have a lifetime of side effects and incur about $750,000 in medical bills. It's great?!?!" I was in a snarky mood ;) Love you.