Sunshine Sadie Mae

Wednesday, August 25, 2010

Sadie's IEPs

 Sadie finishing up her Happy Meal we got at McDonalds after her IEP meetings
Sadie at McDonalds.  She is just learning to "dip" which I guess doesn't seem like a big deal to most parents, but for Sadie this is a sign her motor skills are getting a bit better.  She still grasps whole handed and doesn't use the pinching of the fingers much, but it will come... in time... in time...

Sadie was very excited to be at the school today.. she ran to her classroom and her teacher, open armed and gave her a big hug, then ran to the PT room to jump in the pool of balls.  She loves school and school loves her.  Her "team" all expressed how much they love and enjoy Sadie, and remarked about the glowing spirit she carries about her.  It's always good to hear things like that.  Her teacher told me last year the kids would fight over who got to sit by Sadie. 

They were prepared for her, somewhat.  Her teacher showed me how she rearranged her classroom such that most things were out of Sadie's reach.  However, as we were discussing her goals, etc., she discovered the paper towel dispenser and if you pull on it and rip.. more paper comes from the dispenser.  Good luck with them hiding that!  lol

On the downer side, even though I know Sadie's delayed a lot and that she is more of a 2-year-old developmentally than her age of 4, it's hard to be slapped with the reality of things when I'm filling out papers for school or discussing her abilities and goals with her teachers and therapists.  The hard part for first was forcing myself to fill out her registration papers.   Mothers name... Julie.. Fathers name .... None.  Step-father's name and number...None.   Others in the home... None.  Emergency contact number?? .... alternate drop off for the bus????  and it's times like these that I feel more displaced than ever and I start doubting why I'm here, away from family, etc.,    Am I really doing the right thing? Even though so many times I've had the calming reassurance that I am??

They are keeping Sadie in the 3-year-old preschool class again this year, so won't be moved up to the 4-year-old class until the next school year and who knows when she'll make it into kindergarten.  Not that it matters.  It really doesn't. Sadie is Sadie, but sometimes there are little moments that it really hurts that she's not "normal".

Sadie went to bed by 8:30 last night.  Evenings are so hard on me.  I used to get so much work done in the evening, but now in those long lonely hours my mind travels far off elsewhere, on spiritual matters and on what life is really all about, where I am and where am I going from this point.

I was on such a high the first part of the month with so many wonderful spiritual things happening in my life, and now this slap of reality and back to the real world bit has me down, way down, and I realize it's Satan working on me, but it's a tough battle.

I got on the church web site, looked at my personal geneology and it depressed me further.  I read through the Proclamation of the Family, written by the first Presidency and is considered as modern day scripture. One sentence stands out to me and it eats at me and eats at me, until I've realized I just can't look at my geneology family pages or read the proclamation because I don't qualify for those kind of blessings.

"Children are entitled to birth within the bonds of matrimony, and to be reared by a father and a mother who honor marital vows with complete fidelity. Happiness in family life is most likely to be achieved when founded upon the teachings of the Lord Jesus Christ. Successful marriages and families are established and maintained on principles of faith, prayer, repentance, forgiveness, respect, love, compassion, work, and wholesome recreational activities."  ~Proclamation of the Family~

When Sadie was born the church approached me about adoption. I knew the importance of a 2 parent family, and to be honest, back then I truly honestly felt I could see the future, that Sadie and I would have an intact family, with a mother and a father, and I had reason to believe so.  I'd been told I wasn't going to be alone in raising her.  How wrong he was.  Yet, through my prayers and serious consideration on wanting to do right by Sadie, I truly felt adopting her out was not right and that she would have a mother and a father, that God had a plan for her that involved both.....I've failed her in that respect. 

I know I need to get past my way of thinking on these things, and yet how can I ignore what God wants for us?  Are Sadie and I not worthy of those blessings?   Yes, I've been told Sadie doesn't need life saving ordinances, such as baptism, etc., but she does have a right to an eternal family, and I don't care what people say.. God isn't going to wave a magic wand and just make her mine for eternity.  As mortals we have a responsibility to take the necessary steps for God to grant us his blessings.

And I could go on all day about, but I won't.  It just gets me worked up and down on myself, and I start doubting my personal revelations and Spiritual guidance, and become very depressed, which has been the case the last 2 days.

Life is what it is.   I made the choices I did.  Things haven't gone as I thought they were supposed to and what I thought were what God wanted for us.  Admitting I was wrong in my interpretations is really hard on me, but I have to just put it all out of my mind.

I still feel I'm where I'm supposed to be.  I love my home, etc., but I do get horribly homesick, and yet I know if I went home to visit I'd just be in a hurry to get back here.. to... what?

I'm doing all I feel God has led me to, but somehow the pieces to the puzzle aren't together, yet, and may never be.  There are too many complications and too many other's feelings and beliefs involved, that rule me out.

So, onward... Back to our abnormal "normal" life.  Sadie will be back in school.  Winter will come and I'm already battling the fall/winter blues that hit me every year.  The holiday's are coming and they depress me further. I used to love them so much.   Spending time with my grown kids and grandkids are awesome and I live for moments I see them, and yet attending family things without a supportive other half or immediate family....just Sadie and I the misfits in the crowd..... nothing can replace that one person in your life that makes a family a family... your other half... that's the missing link that haunts me... and I have to let it go.  I have to.

I'm trying hard to accept the fact that I only have 5 children linked to me eternally and that Sadie Mae is only a mortal life loan to me by God to learn from.  I provided her a body and she is providing me earthly and temporal purpose.  Eternally she is God's and only a mortal gift to me.  I have to remind myself this daily and quit trying expect more or feel like a failure because I couldn't provide her a two-parent home or an eternal family.

Sadie is adapting well to her CPAP, though the mask is leaving a rash around her face daily. I've been applying eucerin cream a couple times daily and last night even tried Cavilon on her face in hopes to prevent more irritation, but we'll see how it goes.

Her favorite thing right now is her personal DVD player that she keeps next to my desk with me, watching video's over and over, insisting the radio be on at the same time.  Why am I paying DISH TV?  we don't ever watch it.

Financially I'm struggling to get back on track from our summer "vacations" at the hospital and doctors offices, but I'll get there.  With Sadie gone a few hours 4 days a week I can hopefully get some work done and being in a routine again will be healthy for us both.

Sunday, August 22, 2010

More postsurgery fun..

Amy and Sadie.  Before the sleep study we met up with one of my high school friends from Albany, Oregon, who has been living in St. George since she got married in 1979!  Sadie and Amy bonded right away and we had a fantastic visit.  It was soo good to see Pam after all these years.  It's like our friendship just took off where it was years ago.  I believe we shall be making it a point to visit more often.   Pam was actually able to meet us at the Temple my first time back in 7 years on August 10th.  It was an amazing experience.

 Sadie and I on our front steps one evening after we were home from surgery.

 Sadie with ice cream everywhere on our swing I had bought when we were in Logan before Sadie's surgery. We had a couple friends who came over and put it together for us.. and Sadie loves it. She swings and says.. "wee... weeee"... We love it.

 My first night back at the Temple I was frantically looking for sitters for Sadie, as I hadn't ever really left Sadie while living here.  My friend Sandi's daughters, Stacia and Katie (who both sat at the hospital with their mom, me, my dad and Cassie the 5+ hours in the waiting room during Sadie's surgery) volunteered to drive up from Salt Lake and spend the night with us and watch her.  Sadie loved her slumber party with the big girls. And I know these two lovely girls earned some angelic points in heaven!  Bless their sweet, sweet hearts to provide such a service for me and Sadie Mae.   I'm so blessed.

Sadie's first night wearing the CPAP mask.   Broke my heart putting it on her and hooking her up and watching her throughout the night. She did great.  I was a wreck!

Holy smokes, where did the last month go?  I'll tell you where!!  Sadie had her sleep study in St. George the last week in July, which was a total nightmare.  I expected it to be sleepless, but it was traumatic. They had 21 wired leads on her hooked to a machine, several of which were on her headed, put in place with plaster.  It took 3 hours to get them all on her. They were coming off as fast as they put them on after her tolerance level died 2 hours into the process.  A few never did get hooked up. She had about 12 inches of wire from her to the machine, and her oxygen tubing kept coming loose through out the night as it never got taped down... so the whole night was wrestling match trying to keep things attached and her moving around too much to disconnect it all.

We then had her followup on August 4th with the cardiothoracic docs.  Her heart is doing so well they didn't even hear her murmur at ALL.  Before surgery you could hear it with your ear near her chest!.  They said the right side of her heart is working awesome and they didn't put her back on any hypertension meds. The only medicine she is on now is her thyroid medicine.  A total miracle!!  All those hundreds and thousands of prayers in her behalf were answered.  I was so thrilled.   Suddenly, I felt a change in the wind, that we were being truly blessed and good things were coming our way.

On August 12th I took her back to St. George for the results of the sleep study, which wasn't so wonderful news.  Sadie has severe obstructive sleep apnea, with her breathing stopping about 116 times an hour, soo since I didn't want to even discuss surgery at this point, the doctor told us the preferred option would be CPAP and if she wouldn't tolerate that then it would be the oxygen still at nighttime.  I just wanted to cry.  So, we had to try on masks and fit her for one.. In the meantime her stomach has been sour, so she kinda cut loose on their bed.. it was soo embarrassing. I had to run out to the van for a 3rd diaper and wipes.   5 weeks after surgery and still can't get her bowels regulated!! 

Surprisingly, Sadie has done very well with the CPAP and wearing the mask at night.  We've had one bad night.  Her skin doesn't care for the mask and her face is breaking out with eczema.

The last two weeks have been....crazy.. amazing.. mind rushing... heavenly.. and yet ahhhhhhhh... I'm truly, truly blessed.

Sadie has bounced back to her normal very active, strong-willed Sadie.... and we are both looking forward to her going back to preschool on the 30th.  I have to take her to the school Tuesday for her IEPs with the teacher and therapists.  :D

Also next week she is cleared pretty much to play on playground equipment again, so we will be making our evening walks to the school again to play on the slides and such.

I love summer... and it's hard to see it end.   But, what a rush it has been. Buying my home in the spring, trying to get settled and surgeries set up and done, and rush, rush,, rush.... so sad it's gone without more fun...but good to be done with surgery for awhile now.