Learning to play the hand dealt...

It has been a year of new information, new routines and lots of new information. About a year ago, June, we got confirmation that our daughter Millie was not developing typically. She was showing more than a two year delay in expressive speech, and shocking delays in all other areas as well. I knew she was developing slower than her peers, but until I got the evaluation from Early Intervention, I had no idea how bad it was. The word 'autism' got batted around all year, me trying to avoid it landing on Millie and her therapists trying to get me to accept its application to her. On June 24, 2009 Millie was officially diagnosed with moderate autism (closer to the severe end of the spectrum than the milder end). The monster I had been trying to avoid all year had finally and ominously landed on my precious little girl. It felt like the wind had been knocked out of me, like I had been beaten up and left for dead. Well, almost.
Over the last 3 and half weeks I have been trying to figure out how to play this hand I have been dealt. I have realized that Millie is still my precious little girl, she is not her diagnosis. However, there is a monster on her back. I intend to fight that monster, weaken it, and hopefully remove it from her never to return. I'm reading as much as I can about autism, how it is treated and what others have done. I know that I want to get Millie started in ABA therapy, with discreet trials. The problem is getting the money to pay for it. Medicaid will not pay for it, nor will most insurance companies. It is the best therapy for autism out there, will great success stats. So, I have begun the process of applying for disability Social Security supplimentary income. I also intend to go after private funding. Millie will get OT, PT and ST paid through Medicaid. We hope we can try KinderMusic, cranial sacral therapy and horse therapy. All of this depends on finding money. My getting a payroll job is not a viable solution (we'd get more help without it and I don't have time). ABA therapy is usually managed by one or both parents, and it is a full time job in itself. I'm also looking into how we may want to do the school thing, from public school to home school using the Charlotte Mason approach. So much to learn, so little time to do it.
We have also been told that our chances of having another child with autism, because we have one and because she's a girl, are 1 in 6 (25 times greater than the average population). This throws a wrench into our plans for more children. My having had two miscarriages makes that scary enough, but the risk of another autistic child makes it much harder. We both still want more children. We think we are willing to take the risk of having another autistic child. We are praying about it. We are also getting information about adoption. So much to process, no fast decisions are going to be made!

On Making Much of Time

In thinking and dealing with the home-going of my niece Elli and my children Bridget and Kasey, I have been reminded to make the most of the time I have. Just yesterday I read a very timely devotional reading in Streams in the Dessert by L.B. Cowman, it reads:

" 'I was among the exiles by the Kebar River, the heavens were opened and I saw visions of God ... There the hand of the Lord was upon [me].' (Ezekiel 1:1, 3)

there is nothing that makes the Scriptures more precious to us than a time of 'captivity.' The old psalms of God's Word have sung for us with compassion by our stream at Babel and have resounded with new joy as we have seen the Lord deliver us from captivity and 'restore our fortunes, ... like streams in the Negev' (Ps. 126:4).
A person who has experienced great difficulties will not be easily parted from his Bible. Another book may appear to others to be identical, but to him it is not the same. Over the old and tear-stained pages of his Bible, he has written a journal of his experiences in words that are only visible to his eyes. Through those pages, he has time and again come to the pillars of the house of God and 'to Elim, where there were ... palm trees' (Ex. 15:27). And each of those pillars and trees have become a remembrance for him of some critical time in his life.
In order to receive any benefit from our captivity, we must accept the situation and be determined to make the best of it. [emphasis mine] Worrying over what we have lost or what has been taken from us will not make things better but will only prevent us from improving what remains. We will only serve to make the rope around us tighter if we rebel against it.
In the same way, an excitable horse that will not calmly submit to its bridle only strangles itself. And a high-spirited animal that is restless in its yoke only bruises its own shoulders. Everyone will understand the analogy that Laurence Stern, a minister and author of the eighteenth century, penned regarding a starling and a canary. He told of the difference between a restless starling that broke its week struggling against the bars of its cage and continually cried, 'I can't get out! I can't get out!' and a submissive canary that sat on its perch and sang songs that surpassed even the beauty of those of lark that soared freely to the gates of heaven.
No calamity will ever bring only evil to us, if we will immediately take it in fervent prayer to God. Even as we are taking shelter beneath a tree during a downpour of rain, we may unexpectedly find fruit on its branches. And when we flee to God, taking refuge beneath the shadow of his wing, we will always find more in Him than we have ever before seen or known.
Consequently, it is through our trials and afflictions that God gives us fresh revelations of Himself. Like Jacob, we must cross the 'ford of the Jabbok' (Gen. 32:22) if we are ever to arrive at Peniel, where he wrestled with the Lord, was blessed by Him, and could say 'I saw God face to face, and yet my life was spared' (Gen. 32:30).
Make this story your own, dear captive, and God will give you 'songs in the night' (Job 35:10) and will turn your 'blackness into dawn' (Amos 5:8). Nathaniel William Taylor

Submission to God's divine will is the softest pillow on which to rest.
It filled the room, and it filled my life,
With a glory of source unseen;
It made me calm in the midst of strife,
And in winter my heart was green.
And the birds of promise sang on the tree
When the storm was breaking on land and sea."

Today as I was enjoying the fall weather with Millie and delighting in making her laugh in the bath, I thought of the poem "To the Virgins, to Make Much of Time" by Robert Herrick

Gather ye rosebuds while ye may,
Old time is still a-flying;
And this same flower that smiles today
Tomorrow will be dying.

The glorious lamp of heaven, the sun,
The higher he's a-getting,
The sooner will his race be run,
And nearer he's to setting.

That age is best which is the first,
When youth and blood are warmer;
But being spent, the worse, and worst
Times still succeed the former.

Then, be not coy, but use your time,
And, while ye may, go marry;
For, having lost but once your prime,
You may forever tarry.

Millie's Smile

Toward the end of June a family friend of ours approached Royce with some concerns about Millie. He was seeing some signs of autism in her behavior, language delays and trouble with social interaction. We called First Steps (Kentucky's Early Intervention program) and had her evaluated. She showed major developmental delays in language and motor skills. They determined she would highly benefit from Occupational Therapy, Speech Therapy and work with a Developmental Interventionist. The OT zeroed in on her need for help with her sensory system. Both the OT (Emily), the DI (Jennifer) and I believe that Millie has what is called Sensory Integration Dysfunction. Her sensory system has trouble processing sensory input and regulating input. We have been working with First Steps for about 6 weeks now. Eye contact along with meaningful back and forth interaction have been major goals. Today at breakfast I feel like we had a major breakthrough. It was a big moment for me as a mother anyway! I was getting Millie's breakfast ready for her and told her (while she was looking at my face) that I was going to put Strawberry jam on her toast. Her whole face lit up with the most brilliant sunny smile! She seemed to glow with genuine pleasure and to have that sort of response from her is huge! Over the past week she has been looking at my face at meals and responding to the silly games I have been playing. She smiles and laughs with me and just today started to do things to make me laugh (and getting such a kick out of it too!) The bubbly laughter and fun we had was priceless. I started to think about her smile, and thought of an old Bad English song called "When I see you Smile". It made me cry, and it made me think about what being Millie's Mom means to me and about the work we are doing to help her.
Here are the lyrics:

Sometimes I wonder
How I'd ever make it through,
Through this world without having you
I just wouldn't have a clue

'Cause sometimes it seems
Like this world's closing in on me,
And there's no way of breaking free
And then I see you reach for me

Sometimes I wanna give up
I wanna give in,
I wanna quit the fight
And then I see you, baby
And everything's alright,
everything's alright

When I see you smile
I can face the world, oh oh,
you know I can do anything
When I see you smile
I see a ray of light, oh oh,
I see it shining right through the rain
When I see you smile
Oh yeah, baby when I see you smile at me

Baby there's nothing in this world
that could ever do
What a touch of your hand can do
It's like nothing that I ever knew

And when the rain is falling
I don't feel it,
'cause you're here with me now
And one look at you baby
Is all I'll ever need,
you're all I'll ever need

Chorus

Sometimes I wanna give up
I wanna give in,
I wanna quit the fight
And then I see you baby
And everything's alright,
everything's alright

So right...

Peanut butter and cheese ... Man oh man!

I met a new friend recently, Stacy, who lives down the street from me in our complex. She has a daughter about 9 months younger than Millie named Tia. We have been getting to know one another and watching our kids play together. Over the last week or so that I have know her, I have been reminded to enjoy Millie. It was a needed reminder, as I had become far to serious and intent on teaching my daughter to use the potty and to obey without whining. We had the girls playing with dolls, a toy kitchen, bubbles, the sandbox, and a wading pool. Stacy told me about the crafts and activities she was doing with Tia and I was reminded of how much fun a toddler can be.

Some Millie-isms from this week are especially funny. I'm not sure where she picked up this phrase but, one day this week as I was taking her to the potty she said, "Man oh, Man!" The inflection was hilarious! She has been saying it a lot this week, not just for potty time. It just cracks me up to hear her. :-) Today when I asked her what she wanted for lunch, peanut butter sandwich or cheese tostada, she said "Peanut butter cheese!" So I thought, "Why not? A Peanut butter and cheese sandwich actually sounds pretty good." She devoured it! I think I may try one some day soon. :-)

We all joined the Summer Reading program at the library today, and I am really excited about biting into some juicy books! Millie will get a free book and some coupons. Royce and I will enter a drawing for a gas card and an i-pod. Let the reading begin!

46 Days

46 days is how long our baby, whom we have decided to call Kasey Jo, lived inside my womb. We do not know if our baby was a boy or a girl, hence the gender neutral name. Kasey Jo means "Watchful [for] Jehovah increases". We marveled at God's work in our lives when we found out February 25th that we were pregnant! I had been sure that I did not ovulate that month and so was just doing a routine pregnancy test before calling the doctor for a drug to start a new cycle. To my surprise, the test came up a faint positive. I had to call Royce in to check if my eyes were imagining things! I took another test 3 days later and a 3rd test a week after the first. From the moment I knew we had another baby I loved that precious child. We praised God for bringing about a baby when we did not expect to be pregnant. I spent a few minutes each day gently rubbing and patty my tummy, talking to baby Kasey. Over and over, throughout the days we spent together I told my beautiful baby how much Momma loves him/her. I even looked through Target's baby things and picked out a construction equipment crib set for if we found out we were having a boy. I was going to get it after our 20 week ultrasound. At Goodwill, soon after learning of the little life I held, I found a sage green maternity top which seemed to celebrate new life. I never got to wear it. Kasey Jo was at her cousin Elli and her cousin Anna's birthday parties. Kasey rocked with big sister Millie most of her days with us after Millie's nap. We danced to music together and shared stories. I daydreamed of cuddling Kasey and of him/her sleeping in his/her Daddy's arms (putting him to sleep too). Today his/her Heavenly Father cuddles Kasey for us.

March 28th, a Friday morning, I was getting dressed for a day at the library. I felt wetness in between my legs and thought "Oh I hate that, it always makes me paranoid something is wrong." When I went to put new underclothes on I saw the blood, mixed with mucus. Tears streamed down my face as I said, "Oh baby, don't go...I was just getting to know you..God please...please.." I put on a pad and got dressed. Then I called my OB's office and reported the bleeding. They asked if I'd had sex recently, recently strained to have a bowel movement, and some other things. I had been pretty uncomfortable Thursday and strained very hard to relieve my discomfort. They said I was probably fine and was probably just bleeding because of my straining Thursday night, but I could come in for an ultrasound to get some reassurance. I called Royce at work and then went on to get Millie up. I dressed and fed her breakfast as usual. We were watching some Sesame Street before heading to the Dr's office when Royce arrived home. His boss had noticed his white face when I told him the news and sent him home with $20 for gas. We went to the Dr together and Royce kept after Millie in the waiting room. I was tense, feeling a growing tightness in my lower abdomen that I wanted to attribute to nerves. When we were called back to the ultrasound room, I was told to empty my bladder and than get ready for the scan. At 7 weeks along they have to do what is called a trans vaginal ultrasound. Basically they send a stick wearing a condom and topped with gel up your vagina. Fun, huh?! Baby Kasey showed up on the screen fairly quickly and we could see his/her little heart beating, I started to cry. Then the tech tossed some tissues on my belly and proceeded to dig for ore (at least that's how it felt). I told her she was hurting me and she just kept right on going. She said my ovaries, uterus, cervix and baby all looked normal. Through the ultrasound machine we heard Kasey's heart beating at 162 beats per minute. She gave me a printout of pictures of our little Kasey. I got dressed and we headed to an exam room to talk with the nurse practitioner (my OB was out of town, or about to be). She said that everything looked fine, but to refrain from sex and lifting Millie till my next appointment. I asked about exercise, she said walking and stretching type exercise was fine. I asked if they would check my progesterone levels, since women with PCOS often have low progesterone(the hormone that helps maintain a pregnancy). I had blood drawn for that, was told we were looking for a level of 15+, and then we left. We went to McDonald's for lunch, Millie had a card for a free Happy Meal from the Lexington Public Library's summer reading program. I had a strawberry milkshake, a quarter pounder with cheese, and fries. We stopped at the library afterward and I watched Millie in the children's department while Royce made copies of our tax returns. I was really not feeling well, so we headed home. Royce put Millie down for her nap and then headed out to get the stool softener the nurse practitioner had recommended and some pads. While he was gone my bleeding increased. I was trying to hold it back and relax at the same time. I tried drinking water to help me feel better and more relaxed. This meant lots of trips to the bathroom. Each time I got up from the sofa a gush of blood came out. Twice when I was on the toilet I heard a splash as a clot of some sort came out into it. Alarmed, I called the OB's office. I told them that my bleeding had increased to period level and I was passing clots or something. They looked at the ultrasound and said, "You had a good ultrasound just now, you are probably bleeding more because of the ultrasound probe. You are fine, just put up your feet and do nothing. You are on bed rest till Monday. Call us Monday and let us know how you are doing." I still had tightness in my lower abdomen, but it wasn't cramps. The bleeding stayed heavy for 7 hours. I filled 3 pads. The bleeding didn't stop till Thursday of the next week, although it was very light between Monday and Thursday. I had help from friends at church with watching Millie and with providing meals. Monday I called to report that I was still bleeding and to get my lab results. I was told that my progesterone level was a 6 and they were calling a prescription in for progesterone suppositories to a compounding pharmacy near us, when I told them I was still bleeding (but less than Friday) they said to stay on semi-bed rest. I could move around a little but no sex and no lifting (esp. Millie). Thursday I passed something that looked like red tapioca pudding on a piece of a rubber glove about the size of my thumb. I called the OB and was told it was probably something to do with the progesterone suppositories I was using. Sunday morning I got up to use the bathroom and felt a small gush (I thought it might be urine). When I was in the bathroom something that looked like a bloody prune came out. I saved it in a clean medicine cup, wrapped that in a clean sandwich bag and then a napkin, and then stashed it inside a box in our refrigerator. I thought about calling the OB, but Royce said they would probably just say what they had said Thursday (April 3). So we didn't call. I was starting to not feel pregnant anymore around Wednesday or Thursday (April 2-3). That connection with Kasey was broken and in my heart I knew he/she was gone. I wanted to believe the Dr and think that Kasey was still alive and with me. I almost convinced myself that I was just paranoid and everything was really fine.

April 9th I went to my appointment, an ultrasound had been scheduled back on my last normal appointment (March 18th). The same ultrasound technician who had done the ultrasound March 28th was doing this ultrasound. I asked her, while I was getting ready, to please be gentle since I had bleeding from the last ultrasound. She was really bitchy and said that ultrasounds don't cause bleeding. I replied that when I called about it I was told it was likely due to the ultrasound probe. She huffed and rolled her eyes. Then she said she didn't have to look at my ovaries so it shouldn't feel the same as the last time. When she started the scan it showed nothing in my uterus. Baby Kasey Jo was gone. The tech said "I'm sorry, I don't see anything today." I said I was afraid of that. Then she really quickly said that ultrasounds don't cause miscarriages. I asked why they hadn't told me I was miscarrying when I called that Friday with more bleeding. She said the ultrasound looked normal. I asked a few questions about my ovaries and about trying to get pregnant again. I got dressed and then was told to wait on a sofa in the hall for an available room to talk to the OB. Once in the room, I looked for a pen so I could write down anything the Dr told me. I didn't have one or see one out. The Dr let me borrow hers. When she first walked in the door, she opened with "Well I'm confused!" She admitted they hadn't evaluated the amount of bleeding properly. She said the ultrasound is what she went by. She said the progesterone level didn't indicate an imminent miscarriage (I'm not sure I believe that). She said we could try again after 1 normal cycle. She said neither Clomid nor Metformin had better success rates than the other for full term pregnancies. She likes Clomid better because it is specifically for causing ovulation, Metformin just brings some greater normalcy to cycle lengths. She said she didn't recommend a full fertility blood workup since we know why Bridget died. The same goes for genetic testing on Royce and I. Personally I want to know I have good eggs, a good uterine environment, etc. before trying to conceive again. Another miscarriage is not something I want to go through. If I'm highly likely to miscarry again, I am done with getting pregnant (at least on purpose). I did bring in what passed Sunday, April 6, and it was sent to the lab to test for information about why I miscarried.

I am angry with how the OB office mishandled my pregnancy and care. They should have recognized a miscarriage when I described one that Friday afternoon and the ultrasound tech should have been MUCH gentler with her technique. I'm looking into if she cause the miscarriage or just did a bad report to the Dr causing a misdiagnosis.

Pregnancy limbo

I found out on February 25th that I'm pregnant, to my surprise. I had a good first OB appointment in which I got to see our baby on ultrasound, seeing his/her little heart beating. March 28th I woke up to bleeding. I freaked out, thought I was miscarrying. When I called the Dr they asked me some questions and they said the bleeding was probably caused by some over-ambitious bathroom activity the night before. I went in for an ultrasound to make sure all was well. The ultrasound showed our baby with a good strong heartbeat and everything looking normal. When I got home the bleeding had dramatically increased and so I called the Dr back. They said I was probably seeing increased bleeding because of the type of ultrasound they did (vaginal rather than abdominal) and I should put my feet up and not do anything. Friday I soaked 3 pads in 7 hours, but then the bleeding gradually diminished until it disappeared this past Thursday. Thursday I passed a large clot that scared me, so I called the Dr again. They said it was probably due to the prometrium suppository, but to rest and not exert in any way. It happened again this morning, same size and stuff. I don't know whether to feel pregnant or not. Sometimes I am sure I miscarried March 28th after seeing the Dr, sometimes I feel like I am still pregnant. The Dr keeps saying because there was a good heartbeat on the 28th and nothing looked abnormal that I am still fine. This doesn't feel/look like fine in what I would expect from a healthy pregnancy. We are trying to trust God to get us through whatever it turns out to be, whether miscarriage or a difficult pregnancy. This is not easy, but we are not going it alone. God is always with us and has a good purpose in this experience.

A Path Through Suffering

Over the past 13 months or so I have been learning what it means to trust God regardless of how difficult my circumstances are. We lost our daughter Bridget to miscarriage in March of last year and spent the rest of the year dealing with hard financial times. Just last Friday we had a scare with our current pregnancy when I began to bleed. I was placed on bed rest after the ultrasound showed a good heartbeat on our baby, but the bleeding was still heavy. Over the last week I have been able to get a lot of reading done. Just Wednesday I finished Elisabeth Elliot's book A Path Through Suffering: discovering the relationship between God's mercy and our pain. This book has been so helpful in seeing God's love despite my circumstances and learning to apply the following quote from the book: "Our circumstances are not the window through which we understand His love, but rather we must view our circumstances through His love." God's redemptive work in our lives is shown in how He takes death and produces life. God is continually producing fruit and new life from the little (and sometimes not so little) deaths in our lives. I love what Elisabeth Elliot says on page 133 of her book, "What the caterpillar calls the end of the world, the Creator calls a butterfly." What a beautiful picture of how an eternal perspective can change how we see our circumstances. In view of eternity we can say with the apostle Paul, "For momentary light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal." (2 Corinthians 4:17-18)
The appendix to the book give a list of Scriptural reasons for suffering, following fair use laws I reproduce them here:

First, we suffer for our own sake:
that we may learn who God is Ps 46:1, 10; Dn 4:24-37; the Book of Job
that we may learn to trust 2 Cor 1:8-9
that we may learn to obey Ps 119:67, 71
discipline is proof of the Father's
love and of the validity of our
sonship Heb 12:5-11
it is the condition of discipleship Acts 14:22; Lk 14:26-27, 33
it is required of soldiers 2 Tm 2:4
we are being "pruned that we may
bear fruit Jn 15:2
that we may be shaped to the image
of Christ Rom 8:29
to qualify us to be fellow-heirs
with Christ Rom 8:17
to qualify us for the kingdom of God 2 Thes 1:4-5
to qualify us to reign with Christ 2 Tm 2:12
that our faith may be strengthened Jas 1:3; 2 Thes 1:4-5; Acts 14:22
that faith may be tested and refined Is 43:2; Dn 11:35; Mal 3:2; 1 Cor 3:13;
1 Pt 1:7
that we may reach spiritual maturity Jas 1:4
power comes to its full strength in
weakness 2 Cor 12:9
to produce in us endurance, character,
hope Rom 5:3-4
to produce in us joy and generosity 2 Cor 8:2

Second, we suffer for the sake of God's people:
that they may obtain salvation 2 Tm 2:10
to give them courage Phil 1:14
that because of death working in us,
life may work in them 2 Cor 4:12; Gal 4:13; 1 Jn 3:16
that grace may extend to more 2 Cor 4:15
that our generosity may bless others 2 Cor 8:2

Third, we suffer for the world's sake:
that it may be shown what love and
obedience mean the Book of Job; Jn 14:31; Mt 27:40-43
that the life of Jesus may be visible
in ordinary human flesh 2 Cor 4:10

Fourth, we suffer for Christ's sake:
that we may be identified with Him
in His crucifixion Gal 2:20
suffering is the corollary of faith Ps 44:22; Acts 9:16 and 14:22; 2 Tm 3:12;
Jn 15:18-21; 1 Thes 1:6 and 3:4
that we may share His suffering 1 Pt 4:12-13; Phil 1:29, 2:17 and 3:8, 10;
Col 1:24; 2 Tm 1:8; Heb 13:13
that we may share His glory Rom 8:17-18; Heb 2:9-10; 2 Cor 4:17.

I pray this blesses others dealing with difficult circumstances. To God be the glory.