Monday, September 26, 2011

Dear Lord

Dear Lord-
Today was a really hard day. You probably already know all of this but I just needed a friend to talk to and I thought of you. I don't know what to do anymore Lord. I woke up today determined to have a good day, I really did. I took Claire to the doctor and when I tried to pay the co-pay my flex card was out of money. We have reached our maximum for the year in 2 short months. They would not see Claire without a co-pay so I had to swallow the lump in my throat that was probably pride and call my father in law to pay the co-pay. We are so blessed to have him, he didn't even hesitate before saying yes. Once we got into the office they did another x ray on Claire's knee and all I could think was "that's 40 more dollars...40 more..." What kind of mother thinks that Lord? What I should have been thinking was "I hope that she is okay, I hope she's okay." Just like they had told us at the urgent care, it is broken but it doesn't need surgery so that is a blessing. That makes 2 blessings so far Lord and I am thankful for them.
I took Claire to school and then came home and checked the mail. Let me tell you what a mistake that was. On the top was a bill from the hospital for Matt's surgery. The total was 1,900.00 Lord...that is so much money for us. I called to arrange payments and when I told them that we could pay $100 a month they laughed. She literally laughed Lord. She has no idea how humiliating that call was for me and that I was holding back tears the whole time and she laughed. I was so angry at her but I just ask that you bless her with compassion for the next person who calls with the same situation.
Next I tried to refill medication for Claire and Ivan. They have been doing a lot better ever since we started this new medication with them and that is blessing number 3. My heart hurts so much for them Lord. Every time someone makes a judgement of them my heart hurts and the tears well. People just don't understand the stress and heartache that comes with raising a child with Aspberger's and a child that is bi-polar. I feel very alone Lord. I have met other parents that are dealing with similar issues and they have so many resources to help them. So far I have hit dead end's when I try to find resources. The insurance company refuses to pay for the medication for 3 more days and it makes no sense. I got three different reasons from three different people. The woman on the phone did not understand that they cannot go without their medication Lord. She was so mechanical about all of it. These are my children we are talking about. So I have to pay out of pocket for this medication with my father in law's money.
This is just one day Lord. One day in a string of many just like it and worse. I need you Lord. I need your strength. I need some hope. I need to know that it will get better because at this point both Matt and I have given up on a miracle. We used to think it was coming Lord but our faith is disappearing. We love you Lord and want to do what makes you happy. Please help us to make you happy. Please help us to hang on.

Sunday, September 18, 2011

Baptism Preview

Tonight we had the opportunity to go to a baptism preview for Claire. We went to one in our old ward at the beginning of this year but her baptism seemed so far away that it really didn't hit me. Tonight I realized that her baptism is only 2 months away and so it took on a whole new meaning for me. We have been talking about baptism a lot with her and helping her to get ready. Tonight as we were sitting there my mind wandered to my childhood and my adolescence and I realized how much I want things to be different for Claire Bear. These next two months will be so special going to get her baptism dress and make up her invitations. Her Grandma and Grandpa Bradford won't be able to be there and that makes me very sad but Matt will get to baptize her which is something we weren't sure he would be able to do. We will have to work around the oxygen situation but it will be possible. I can't believe that she is old enough to get baptized. We struggle a lot with her, especially me because she is so much like me. I hope and pray that I can use those similarities to direct her down a better path than I chose when I was younger. I made it to the right destination, I just took a lot of hurtful detours along the way. I don't want her to have to take those detours. I am so excited and scared and sad that my baby is growing up.

Friday, September 16, 2011

More of the Same

Today is a hard day for me. I have been so tired (as usual) and so it has been a lazy day and I feel so guilty for it. Being a "stay at home mom" in
someone else's home is really a challenging thing. I do my best to keep busy cleaning and taking care of the kids but there is only so much I can do. It is especially hard on the lazy days because I feel judged. I'm sure it is just my imagination and a large part of it probably comes from the fact that I feel very guilty on said lazy days.

Friday has become a hard day for me. The State of Utah recently changed from a 4 day work week to a 5 day work week and although Matt still works four 10 hour shifts, his off day is Wednesday instead of Friday and it is the same day that my in-laws go to the temple all day. It was really nice to have the house to ourselves when Matt was home, we functioned like a normal family almost but now it is just me and the kids and it is lonely. I pray almost daily for the Lord to help us get into our own house. It is not that living with Matt's family is a bad thing, it's just hard. It is especially hard after living on our own for 10 years.

Matt has an appointment with the endocrinologist this next week and we are very happy about that. I though for sure it would take at least a month to get in and so when they told me they could get us in next week, I did a happy dance in my mind. We were not so lucky with the GI doc and the liver biopsy, those will be in October. He is doing well for now but the swelling in his legs has returned and so that excitement has disappated. It was a huge breakthrough for us to have that swelling gone. It is something we have watched and worried over for a year now. It has been the source of multiple trips to the ER and even a weekend stay in the hospital. You can imagine how happy we were when it went away and how disappointed we were when it returned. Hopefully the Endocrinologist will have some insight for us.

I think I am just generally out of place. I am not un-happy just un-settled. I have stopped trying to find a new normal for our family because everytime I do it turns upside down. For now we just take it a day at a time and hope that there are more good days than bad.

Friday, September 9, 2011

The Latest From These Garff's

Today has been a hard day. Matt has gone back to work and the kids have started school and although it is a load off it proves to be quite lonely sometimes. We are still living with Matt's dad and things are still challenging for our family but we are seeing some progress. Matt is doing well at work, he is still on oxygen but it keeps him awake on the drive to and from and helps him have more energy throughout the day. The swelling in his hands and legs has gone down considerably and the cardiologist has given him a great report so we know that he does not have congestive heart failure! Yay! Now we just have to see the endocrinologist and the GI doc for a liver biopsy. We have to have it done at the U of U so it is nearly impossible to get ahold of anyone! I think we will just have to walk in to make the appointment.

I have been struggling with depression and fibromyalgia. Someone stole 7 pain patches from the house and so we have started locking our bedroom door with a key and I have been in pain for the last 2 weeks. It is so frustrating to be dealing with pain again after having been nearly pain free. I made a police report and the doctor could prescribe more but the insurance won't pay until Monday so it will be a long weekend. I think the depression comes from yet another challenge in our lives and another change in our routine. I just don't seem to fit in my own skin, I feel like I can't quite find my niche. I am hoping with time I will begin to feel better.

The kids are enjoying school and the weather is starting to turn so they are excited. They can't wait for it to snow, I on the other hand can definitely wait. We were able to take them to the drive in last weekend and it was so much fun. We went through 4 oxygen tanks and hit the parking poll with our van but it was still fun. We haven't done "normal" family things like that in some time.

I have had an easier time going to church. I was so afraid to face the people. It just seemed like the walls were closing in on me and we were the center of attention because we were new and for some reason it completely freaked me out. I have gotten to know some very awesome people and that has made it much easier to attend. The bishopric and the Elders Quorum presidency has been to visit a lot during this new challenging time for us and our most AWESOME relief society president has been wonderful to me as well as our neighbors. We have been blessed with a great support system. I have had a great time catching up with old friends and making some much needed new friends.

Although life has thrown us some new challenges, we have seen many blessing and are very thankful for them.