Sunshine Sadie Mae

Friday, November 5, 2010

October 2010

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.

 Finally, after getting directions from LeAnn, we drove up a canyon here to this little lake where the kiddies can fish.  Sadie struggled enough just walking on uneven ground and dirt, but she loved signing and trying to say fish and say Hey-whoa  (hello) loudly over and over to everyone we passed.  I really need to get us out more..
 I went with Sadie's preschool class to the pumpkin patch and to pick out her own pumpkin.  It was really fine seeing her in a school setting, among her friends and teachers.  I noticed she doesn't really interact with other children much.  It makes me sad for her.  She seems to get anxious more.  She holds her hair or pulls on her hair some and does this eye thing when she is tense.  It breaks my heart.  But the field trip wasn't like that so much. We really had a good time.  She loves being around kids. She just doesn't know how to interact and play with them; at least as far as I can tell.

 And "the pumpkin" has been chosen.  She was so proud.  She has a wonderful aide, who is hers alone. She is very very fortunate to have the one-on-one aide, and she is sooo good with Sadie too!  So is her teacher, Carolyn Pace, and her speech therapist, occupational therapist and physical therapist.  I'm so grateful to everyone who plays a part in Sadie's life. 
Sadie, Alisha?and Taylor Roberts (LeAnn's kids) at the DS Awareness walk. Cedar City actually had a Down Syndrome event!  The support here is awful.  Sadie was the only DS little kid, but she got spoiled with attention.  LeAnn's daughter smothered her, but in a good way. 
 A Sadie moment in our backyard.  We love pink. I love Sadie.  She is so amazing and I feel so guilty and bad when I'm short with her or get angry over "spilt-milk" so to speak. She is so sensitive and tender with her emotions.  (gee wonder where she gets that from)  She gets her feelings hurt and her pouty cry is pathetically sad.  But, Sadie all-in-all is just an amazing miracle. 

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).

1 comment:

Suzie said...

She's a beautiful little girl. I have a new blog what I wrote today might help you