Friday, January 28, 2011
We have had to do another pulse oximeter test on Sadie at night to see if she is keeping her oxygen sats up through the night with the CPAP. She is staying around 90-93%. We are awaiting word from the doctors to see if we need to add oxygen at night. However, we don't have a phone, which was disconnected last month. We are really struggling financially. No one can truly understand the fear I have every night as I put her down to bed if she'll wake up in the morning. I try not to think about it, but it's a mother's instinct to worry and get up and check on her a night. I lost my health insurance in December due to the premium doubling and I couldn't afford to pay it. Sadie still has coverage through Medicaid, but as for me I have no insurance now. I'm so stressed anymore about how I'm going to manage financially and looking in the years ahead and as I age and have health issues how I'm going to take care of us. I worry so much about what will happen to Sadie, both here temporarily, as well as eternally. Who was she really in the life before this?. What amazing thing did she do to earn her state? and who will she be in the eternities. Will she remember me as her earthly mother, even without the bonds of the sealing power? I'm so distressed over temporal matters, as well as spiritual. I'm struggling in both areas doing it all alone anymore, that I've bottomed out. January has always been my worst month ever, and yet I feel so alone at times.
Sadie's vocabulary is growing, slowly. Last week after attending the Temple a friend was leaving after dropping me off home and Sadie ran to the door after he left crying "Ba-pa.. Ba-pa" The next day, Sunday, I was watching some youtubes with pictures of Christ in them and Sadie flapped all four extremities with excitement, recognizing who he was in the photos, say "yee-yus.. yee-yus" It brought me to tears. She kept saying yee-yus and ba-pa all weekend. It breaks my heart that I can't give her the family unit other normal family has. Some say she doesn't know what a father is.. but I know she does. She knows more than one would think. I can see it.
I'm also really, really questioning my move here. I really love the area, the small-town feel, the people, my neighbors and church members, and I absolutely adore my little house, and I really truly felt inspired to move here, but why? The reason I thought I was meant to be here frankly is never going to work out and so I question all my inspiration and answers to prayers for so many years.
Yesterday was a big wake up call. I'd been sick, really sick, for 3 days in a row, waking up very dizzy, nauseated, throwing up bile, nearly passing out, fearful of getting Sadie on and off the school bus safely. During the day the few people I could call on had jobs.. and the one person I reached out to several times blew me off and actually got rude with me, which raised a big red flag. He might as well said he didn't care at all. Finally, yesterday after blacking out in the shower I drove myself to Instacare, where it was discovered my blood pressure was dangerously high to the point of a stroke risk and shouldn't have driven myself anywhere. I didn't even have a phone! I'm so pathetic anymore! Look what following my inspirations got me? More alone than EVER. I miss my children and grandchildren. I turned my world upside down for someone who doesn't even notice me or care when I'm sick or stressed. Well the doctors contributed my high blood pressure to stress. Well no kidding.. look at my life!!! What would happen to Sadie if something happened to me? I didn't even have anyone I could leave her with emergently yesterday. I really love my house and where I live, but frankly I'm starting to wonder just how wise it is to be away from family with all my needs. I hate asking others for help, and so when I reached for help and got ignored yesterday really cut me deep. I don't kid around about things. I really needed his help.. at least some emotional support, that I wasn't alone, but I was. I am.
Tuesday, December 14, 2010
This past week the Down Syndrome family had to say good-bye to one of God's little ones, Millie, after catching a virus from open heart surgery. She found the line to Jesus and went home to him. My heart aches for those she left behind; her family and loved ones. With her passing I cherish my time with Sadie more and more. Tomorrow is not promised. The present is our gift in life. Sadie is teaching me more and more to live in the present. She rarely complains and uses every bit of energy she has daily to explore, to learn and rejoice in life. She's taught me to dance and sing more often and pause at the singing of the birds and the beauty and blessings God has granted us.
I'm so blessed with my new home. I know God found the way to move us here and led us to our home and to our church family and neighbors. I have so many confirmations this is where we belong, and yet I still will doubt my reasons for being here as I long to see my children and grandchildren, Dad and extended family.
I'm learning to have faith and trust in the Lord and not my own understanding, which interestingly one of my favorite scriptures has always been Proverbs 3:5-6 "Trust in the Lord with all thy heart and lean not unto thine own understanding. In all ways acknowledge him and he shall direct they paths".
This is much like Sadie's first Christmas. She is finally aware of the sights and sounds of the holiday season. She knows now what a present is and that it is meant to be unwrapped. I've longed for this day. I took her to the storybook parade. Well we actually went with Jennifer Ganowski and her daughters, who ate her up.
We went to the display of the Nativities Sunday and listened to some wonderful Christmas music by community members. Sadie was in awe at the live Nativity with the primary kids and at the beautiful musical talent in the church chapel. We then drove around and looked at Christmas lights and in Sadie's own words "wow... wow".
I'm learning so much from this beautiful creation of God. She is truly amazing. Stubborn, full of spice and into everything, but my world, and what a wonderful world it is.
I was so excited and thankful for Jeremy and Laura coming to visit. I get so excited for my kids and grandchildren to visit and see my home. Jeremy wanted to go to Zions and he brought me to the reality of what God's creations are in my backyard literally. I need to get out more. I now vision more road trips in my future!! I can't believe how much fun we had. It was like old times with Jeremy, and with Laura. We laughed and got goofy. Laura seconded that she knows where Jeremy gets his sick sens of humor from. I have no clue what she was talking about...lol Sadie LOVED having company. She cried at the door as the left a couple days later. The kids said they can't believe how much my house is "me" and how perfect it is for Sadie and I. They approve of my home and where I live, but then Jeremy is the one that pushed me to move here 3 years ago he planted the idea and then mom got cancer and I just couldn't leave back then. He told me back then that as he drove through Cedar on the way to Vegas he could see me living here.. that he knew it's where I belonged. So, I guess it's not my own personal insanity that brought me here. I've had so many witnesses this is where I need to be. The hardest.. very hardest part is being so far from family. I miss everyone so much. My dad, my siblings, nieces, nephews, and mostly my own children and grandchildren. It's hard knowing they don't get to see and enjoy Sadie's light on a regular basis and that's what I feel most guilty about.
However, now that I have a home... I have dubbed the weekend after Thanksgiving for my family to come visit, have a campout all over my house and combine Thanksgiving and Christmas during that week with them. I've traveled the road between Fillmore and Cedar more than once in snow storms and as I'm aging I have developed a great fear of the elements and with my poor night vision, etc., I've sworn off winter driving as much as possible.
My children and grandchildren are my world. I wish with all my heart they could truly feel the unconditional love I have for each and every one of them, that I didn't leave or move to be away from them, but only acted on faith and out of inspiration by my Heavenly Father. In many ways I've become closer to my kids in the last year.
I'm so thankful for Jeremy and Laura coming and spending some time with Sadie and I. It meant the world to me. In a way I feel I've already had Christmas with them visiting.
Wednesday, November 10, 2010
We left Saturday morning for our drive, the long way, home to visit family. Sadie travels so well. She loves riding in the van. She thinks, however, every time we stop a fast food restaurant she is getting fries.. and starts saying "hot.. hot" because that's what I tell her after we get the food to wait because they fries are "hot.. hot" so the word for fries is now .. "hot.. hot". The communication is coming, but very slowly, but we have time. We sang in the van on our drive as usual to the Disney Country CD and Shrek sound track and everything else that we could get on and off the radio.
We stopped in Eagle Mountain to visit Jessica, Clark, Braxton and Baylee. Braxton and Sadie lifted their shirts and compared scars and played. Baylee has turned a year old and her hair is still red and thicker. She is a real cutie, wanting to arch her back and hang upside down and play. I got pictures of them, but I had them downloaded on my lap top which has crashed since we got home, but they are still on the camera thank goodness.
We then traveled the long way home on the old highway through Willard and Brigham City to Honeyville with a stop at the cemetery to have a cry and talk with my mom. I sure wished I thought to make her a pine bough with my branches off my tree and pine cones. She loved pine nuts. I remember gathering them when I was very little with her and the family.
We met Jeana, Harlyn, Jeni and her 3 girls and Thomas at the gym. I finally got my hands on baby Clara. What a doll! I have beautiful amazing grandchildren...and awesome children!! Sadie was right at home running through the gym, cheating and letting others bounce her on the trampolines. She is such an observer. She really wanted to jump and do flips like the older kids were. She was so excited just watching them she would flap her arms and legs and squeal watching them. Harlyn showed off and walked the balance beam, with her mom's help. Of course, Kinely showed off. She is the oldest grandchild and she thinks she runs the gym instead of her father. She is a born leader! Sadie was also fascinated with the zip line and wanted badly to try it. One of the employees would lift her and let her hold onto it the bar and run along with her. She really had a good time. Me and Jeni took the girls to Wal-Mart after leaving the gym and then I took them home. Sadie cried when the girls got out of the car and we backed out of the driveway alone.
Finally, it's evening, and knowing the Jazz were playing we'd stayed at the gym so grandpa could enjoy the game. We got to dad's house in time to watch the ending of the game. Triple over time. Sadie was so pumped watching the game with grandpa on the big screen and making a popcorn mess. She was sure happy to see her grandpa. She loved going into mom's room to wander about and rearrange things. She broke a glass bubble shade of an angel lamp of mom's. Luckily she didn't get hurt. Dad was so patient with her. I know it must be hard having us there taking over the house and Sadie into things, but she is getting better, a lot better.
Sunday, we decided not to go to church. We put a roast in the oven and Jeni and Thomas, Jeana and the girls came by for dinner and visited, and the girls played with Sadie. Randy and Sandy called and came by to visit with us. We had a really good visit. Randy brought up Joni and Steven getting sealed in Dallas this weekend in the Temple and tried to get dad to drive me out there. Ha.. right.. Sandy kept telling me what deals I could find on flights. They really want me to be there. I really want to be there, but I know realistically I can't be there. I couldn't afford my visit with family this weekend. They turned off our TV service, because I can't pay them. I have made payment arrangements with my phone and power, and I don't know what will be shut off next, but I'm plugging along, trying to get back on track. I even canceled my doctor's appointment for today. I just can't afford it.
I drove Dad, Sadie and I out to Providence to Kathy's Sunday evening to be with Timmy when he received the Aaronic
Monday morning I woke up so dizzy with any sort of movement that I started vomiting.. and all I could vomit was bile. I violently throw up inside out. Dad had a doctor appointment, so he was gone. It took me 3 hours to get us dressed and things packed, etc., so we could leave by 11:00. I burst the corpuscles in my face, so I looked like I had measles from vomiting so hard. Randy came out to the van as I was about to head out in the snow storm to get us to Salt Lake to PCMC and then home from there. He told me I looked like shit.. well I felt like shit...lol and offered to drive us to Salt Lake. I promised I'd be fine. I 'd drive slow and not turn my head or vomit in the car, that I'd been lots worse off before, and that I could handle it alone. He met me at Maverik and filled my gas tank (bless him.. I was going to have to get bank charges to get us home), bought me a Diet Coke and Snicker's bar. I have good family. Randy and Sandy are always so thoughtful.
The drive to Salt Lake wasn't bad at all. The snow was wet and the roads just wet. Sadie's chest x-ray looked good and the cardiologist told me he had no complaints, that she is looking good. He did mention her significant weight gain since he saw her in April and asked if I'd had her thyroid checked. I told him she hasn't had it checked for about a year and he suggested I get it checked again and make sure she is on the right amount of Levothyroxine, as hypothyroidism can cause rapid weight gain, so we have that to do.
It was snowing in Salt Lake when we left about 2:30 and was sticking to the ground. The roads weren't bad until we got just past Fillmore and then the next couple hours was hell. I prayed. I cried. I held tight to the steering wheel trying to focus on a line in the road. I know I was weaving from one lane to the next. I can't see at night anyway... let alone in blowing snow. I could hear the road bumps as I neared the edges of the road and the yellow line. The other cars were probably cussing me. I tried to focus for quite some time on a semi in front of me, guessing how to follow and where the road was. I literally felt like I was driving blind. I cried and prayed for God to send some help to guide me and lead me home. I know I never would have made it without help from above. It was as bad as the last winter drive I had through there last New Years Eve. I'm so scared now to drive it again that I won't be going anywhere far til late spring, alone, ever again. I'm grounded to this spot on the map. Sadie does have an appointment in St. George this month. I pray I make it there and back okay. I have much anxiety about driving anywhere at this point. I must be getting old.
We got home around 7:30. I called dad and the kids and let them know I made it okay. The dizziness lightened up between Logan and Salt Lake, and by the time I got us something to eat at a drive through after the hospital I was feeling lots better. Thank heavens. No way I could have survived that drive throwing up bile and popping blood vessels in my face. I'm really embarrassed anymore about anyone even seeing me.
I unloaded the van, turned on the computer, and then started worrying about how I was going to entertain Sadie now that Direct TV is gone and both DVD players bombed out on us the day after the TV went. I signed up for a trial of Netflix online and hoped that Sadie could watch movies from the lap top. Something wasn't right and I started messing with things trying to get movies to play, and well.. I blew the computer. It crashed on me. I spent all afternoon yesterday clearing it with a friend online helping me through it and spent much of today reloading programs, etc, on it again today while trying to work and keep Sadie out of things. She dumped the gallon of filbert nuts I'd gathered from dad's and was just trying to help unpack and such.
I went through bills, checked bank accounts, juggled things and fingers crossed and knees bent that I finally got the mortgage payment covered for November. Money stinks! It's such an evil necessity. I do realize, however, after what I let stress, etc., do to me over the last couple months that I really need to just pull myself together, pull my head out and take care of us. Cowgirl up and deal with life. There is no way I can afford to get sick or be on medications. It broke me within a matter of weeks. How quickly things change in life.
I went from things looking good all around me, having a home, on top of bills, going to the Temple regularly to being so depressed and panic and anxiety attacks, til I was literally sick, not going to church, etc., and though it has been only a month tomorrow since I last was in the Temple it feels like years. My life is like a snow globe in a wind storm.. .turned upside down with a flick of the wrist.
So.. time to get strong. I charged me a big Christmas tree. I'm going to go to the food bank for some food and cook Thanksgiving dinner and carry on with life. Enjoy the holiday's with Sadie and with what family can travel this way or whatever, and be happy. I'm going to be freak'n happy if it kills me ..lol
I'm trying to just turn the rest over to God and leave his plan for me in his hands. I've done all I can and then some in doing my part and God will do his. I have to trust that and let things ride and just be what they are.
I have to for the sake of my health and well-being so I can take care of Sadie. Without her I shudder to think where I'd be.
Friday, November 5, 2010
I was so surprised and very happy the kids came to visit. They can't make it for Thanksgiving when some of the others come for dinner, so they made it up to me early. <3 I have the bestest kids.. <3
Sadie's 2011 Pre-school picture. Dang she is cute!! I'm really surprised she cooperated with the photography. She avoids my camera. She really loves school.
My how time go by.
Sadie is back in school and loves the routine of things, her new aide. I can't believe how she has grown since her surgery. I just boxed up all her size 3Ts and soon 4s will be going too.
The downer side of things is that I've been falling apart ever since surgery was done and all. I guess I'm a delayed reactor or the stress of everything doesn't come out until things are a little better. I broke out with impetigo, lived with it for weeks before I found out what it was. First thing the doctor said was.. You have a lot of stress in your life, don't you? Apparently, that is what set off the impetigo, which is staph infection. over $200 prescriptions that same day, plus the $40 co-pay really helped the situation... NOT. That was just the dermatologist. I then finally, decided after living here a year, having Sadie's doctors, etc., established, that I needed to establish primary care here for me as well, so I made an appointment with an internist to establish care and get refills of my meds and back on anti-anxiety medication. I hated going back on them. I feel like such a failure at life, but I was at a scary point, and have really bottomed out as far as myself goes, mentally, spiritually, emotionally and physically. okay so another $120 have racked up on co-pays and got refills, plus another addition to my meds, and then I broke out in hives (before starting the new medication). Dermatologist crossed it off as stress, again, and prescribed another medication. My glasses were so scratched up I established care for my eyes as well, and another $40 co-pay and $50 in contacts.
I'm upset and feel very selfish for having to put so much into myself lately. I worry so much about losing my home.
The ticker.. that finally was the last straw, I believe, for me was the break up with the boyfriend, AGAIN. Life is so shittty alone. It takes two to hold strong against lives winds and storms, but I stand alone with my Savior there spiritually for me, but I needed him. I know his life is stressful and that he can't love me like I love him, but just to poof and disappear on me again amongst everything else, is just wrong. I honestly will never attempt another relationship. It's better to stand alone than to have someone pretend they like you awhile, date you, take you to the Temple for weeks in a row.. then poof.. gone... without a trace that he gave a rats ass.
I am literally falling apart. We are now so far behind on bills that I had to beg the power company to take payments on our overdue amount. I don't have enough to pay Novembers mortgage payment and it's already the 5th. Here I am far away from family, missed my granddaughter, Clara's birth last month, and I feel like a shitty mom and grandma too. I feel like such a failure at everything.
Anyway enough of my woes. I've also become a whiner.. sheesh. It's gotta end.
Sadie broke her glasses and I'm trying to see if medicaid will pay on a pair especially made for kids with DS, with the lower ears, smaller bridge of her nose, etc. I rigged her glasses with pink duct tape and added a strap and she still tears them off, and won't wear them, and yet I believe her vision has gotten worse with her depth perception specifically. She is even more hesitant about what is a step and what is not, and won't step down them without more support than she has been.
On the upside.. she called me momma two times in a row last week; however, has not said it again, which is typical.
We haven't been able to get her bowels under control since surgery. She gets so backed up and then explodes into a real mess when finally we get it broke up and loose. Last night was one of those explosions.
I sound depressing, huh? Maybe, because at times it is. I've raised 5 children, grown and on their own now, but no experience with them can really compare with life with a child with disabilities. It's a tough job, and generally I do it well, but it wears on one, especially one OLD single lady, trying to do it all alone. I'm not complaining about Sadie. She's the best gift from God, and she does bring me much joy and sunshine.. in my cloudy world.
Communication and potty training (which we haven't even attempted, because she has no clue) are the hardest things for us right now. It frustrates us both to tears. She screams because after several attempts at really trying to show me what she wants or what is wrong.. she can't communicate it to me and I can't read her mind. She is improving, and has done so a LOT. When she wants something in the fridge she'll tap my arm and walk to the fridge, same with the door, etc. She randomly walks up to people and hugs them. Before it was just family and Mr. Dumped Julie. She acts so healthy that you'd never know she had open heart surgery a few months ago. Medicaid is finally paying for her diapers. She is on the biggest size in infants diapers and it's a squeeze getting them on her, but at least I don't have that expense now. Every little bit counts.
Now to count my blessings. I am living one of my dreams. I am a home owner. I never dreamed I'd have my own home and yard, and wah-lah.. God brought me to it. I know.. I know without a shadow of a doubt and that God lives that his is my home and I'm meant to be here. Though, I'm sure are lives here are meant to touch others with Sadie's sweet Spirit, I honestly believe the main reason we are here just walked out on us and told me to move on. He doesn't believe any of it and has used his free agency to walk away from us. I'm nothing grand, but I know I'll be blessed raising Sadie and having her in my life and so is everyone who knows her. She really bonded with him. First when she was still under a year old.. and then last year when we visited and again in February she wanted him so bad in the pharmacy and I blew him off because I couldn't to the rejection thing again... which I gave in and did... 2 more times.. and now I'm done.......Damn him.
Life goes on.
Last week I dug in the shed and got out all my holiday Barbies. Over 25 of them line the peak of my vaulted ceiling in a small landing/shelf like area. I'm gonna paint the house pink (ok not really literally pink) but I'm making my house a girlie girl house and gonna just play dolls with Sadie for the remainder of my days on earth... and to hell with men. I'm using my free agency to be a bitter old lady. so there. (big talker too).