Saturday, February 25, 2012

quick PH1 update

Last week the kids had their check up they go every 3-4 months for a kidney function checkup. The idea is that once we see kidney function decline we will be listed for liver transplants (hopefully that never happens) so we check. To prep for a checkup we do a 24 hour urine roughly 4 weeks before our appointment, and a blood draw. That way we have the results at the appointment. Guess what EVERYTHING was in the normal range......... Oxalate's were in the normal range J's were 276 and Tony's were 267. So as long as they take the meds everyday all is well. However getting those meds into them is a daily fight. I have actually found piles of them in hiding places. Urine output for J was pretty good to, and Tony's were low. That is because when I say get a glass of water J goes and tony does not. They are also 10 and 12 and they know that they must drink water and should be drinking lots of water.

They are also both kidney stone free, Tony had stones but went through some rough patches in December which also included a trip to the E.R. and an ultrasound and his now stone free.
so far all is well :-)

Sunday, February 5, 2012

where is God

So last night I went to bed begging God to do something anything, I really feel like maybe I'm not worth listening to anymore. It has been ALONG time since I wrote anything here and I feel the need to again write, more for myself then anyone else. Things with my oldest daughter have a again come to a head, I'm not really sure what on earth happened this time, the only thing I know is she is not talking to me again, apparently because I wanted to talk to her. Like an actual talk where we talked about things going on in her life. There was no argument after that unless call her calling and cussing at me and me telling her when she could talk to me in a respectful tone I would talk until then I guess we couldn't talk because I WILL NOT ALLOW ANYONE to talk to me like that especially my own child. Side note I am 33 and have NEVER and will NEVER talk to my parents like that.The last thing I heard from her 2 weeks ago was shut the he** up in a text message. After that no responses to texts (besides the few the hubby received with harassing messages ) and not answers to my calls. Now before you say but she's 16 and your her mother you need to love her. Let me tell you I do love my daughter I would give my life for her in a second, I am here, I'm always here for her. I still cannot allow her to cuss at me because I'm her mother not her friend.
Like I said at the beginning of this post I went to bed last night begging God to help me, help her, I have tried EVERYTHING.....I mean EVERYTHING to fix all this, as long as I'm willing to be her friend all is well in her world, once I say no or disagree with something she does all he** breaks loose.
As i feel asleep i remember thinking that's it I'm not worth God's time anymore and I'm probably on my own...... This morning we went to church for the first time in MONTHS.....(okay we went on Christmas eve, but other then's been a while) I don't feel like I belong anywhere and I don't want everyone to know my problem/secret I wear it like a Scarlet letter.

What is my problem you a HUGE way.......It is like a deep dark pit, you can't even see the light, you know it's there but how do you get to it, alright so I'm gonna share my depression story. Depression has always been apart of my life for various reasons though it really raised it's head after my first daughter was born you see she was roughly 4 months old when I found my baby Daddy with another women, I came home unexpected and caught him with her and my world literally fell apart. I remember standing in my front yard at 2 am with this person who was my EVERYTHING, my babies Dad,my best friend, the person I loved more then anything. I remember looking him in the eyes and saying you have to make a choice her or me......he said I want you both. He couldn't choose me so it was over, and my heart broke, the world stopped spinning in that moment, i hurt so much how could this be happening, He left and I was alone. For a whole week all I did was cry, I didn't shower, I didn't look after my baby ( my Mom did thank God for her) Finally she said to me after that first week, you have to stop you cannot keep doing this life goes on, and she was right, I picked myself up by my boot straps and kept trudging, so at 18 I moved out of my parents house, I worked, and worked hard to finish school. And I did, then I ran into my now husband. I have known my husband since I was 12 but had not seen him in a few years. A total fluke or an act of God. Anyhow the romance started and roughly 6 months later we were married (quick I know but one of the best things I have ever done.) That is when things start to get worse you see we were expecting a baby, and at 39 weeks and 6 days my water broke, when we got to the hospital there was no heart beat and instead of having a baby shower we had a funeral, instead of a son we got a 2 foot plot in the cemetery to say my world stopped is an understatement, i don't remember much of the following 6 months. I do remember taking it one minute at a time, then one hour at a time, then one day at a time, and so on. It was hard, really hard. I think it took a full 6 years for me to be able to say I do not wish my son back, I miss him. I wish I could just have 1 hour with him. But he has the best life and he is pain free and He is happy. I do not want another life for him. At this point my depression was still manageable I had rough spots but for the most part it was okay.
Then we got preggers with our youngest son, for him i wanted a drug free birth and to breast feed. None of that happened, after 12 hours my hubby couldn't handle seeing me in pain and order drugs. Then Brycen didn't nurse and that was a flop. I felt like a failure, and the depression gradually got worse to the point where I needed help. I saw a variety of doctors / phycharists. then things went really wrong, my children were diagnosed with PH 1 I spent days awake all night long crying and begging God to spare my children. and things got worse, i worked overnights and daughter rebelled and my deprssion got worse. I know how and where I would end my life , I have had times where I sent out a suicide note to family and friends ( which I then erased before my hubby could see it ). I have written letters to my children so when i die they have something from me. I hate having a plan, I wish I could be like "normal" people who don't think like that. It has been a VERY long road and it has been very hard.
I am so thankful for my husband and my family, I know I have the support when I need it, if only in my time of need I had the ability to reach out for it, however when I feel like that I don't reach out. And by feel like that I mean feel like life isn't worth living like I could just die and be done on this earth and that is how i feel, I have a hard time keeping in touch with people because i don't feel like I am worth anyone time. So I don't reach out, there are days where if I didn't work I would not get out of bed. Now my depression is not nearly as bad as it was as long as I take my anti depressants.

Fast forward to today, last night I went to bed begging God for help, this am we went to church and Guess what God spoke in a HUGE way, first my sisters sister in law walked up to me a gave me a huge hug, I needed that, second the sermon was about dark days, and how God is there and is working, i think God was telling me yup he's there, and yup he still cares. So I will allow God to work in not only my life but Ashton's life, I love my children I would give my life for thgem. I love my husband and am so thankful for all his support he has always been there for me always, at the drop of a hat and i love him for that. I am also so thankful for thier support.

I do not however love depression I will not give my life to it, instead I will work to heal from it and allow God to work in my life.