Thursday, September 8, 2011

Just Like Heaven

*Before I write this post, I thought I would just make a small request to my readers.  I am going to be sharing some religious views I have that mean a great deal to me, so I ask that you treat them with respect while on my blog.  Being respectful of everyone's religious ideals is something I personally take very seriously and strive in my own life to always do, so I just ask while here, you do the same.*

Alright now that's out of the way, I thought I would use this post to share a few of my thoughts on what is going on with my youngest daughter, Elinor.  If you are a regular reader, you already know the story of where we are with her and how we got here.  If not, I will briefly sum up the journey we have had.

When Scout was 18 months old, I was pregnant with a crazy difficult pregnancy that made me feel terrible all the time.  I even threw up a few times a week (for those that know me well, you know what a big deal that was).  I felt terrible, I bled quite a bit, had migranes and I was measuring big.  I went to the doctors  a few times while bleeding to see if I was miscarrying and they always found a heartbeat.  So they sent me home.  One day they couldn't detect one, and did an ultrasound and during that ultrasound we were told that our baby had passed away and that I might get cancer from this pregnancy.  They took the baby that next morning using a high risk procedure that was supposed to cause me to hemorrhage and definitely need blood transfusions and  there was a chance of a hysterectomy.   I woke up to find out that miraculously I didn't even need a transfusion.  The doctor was quite surprised.  After testing, they found out that I was really pregnant with twins, one baby was perfectly normal, the other was a complete molar pregnancy that was made out of abnormal cells that eventually suffocated the twin and invaded my body with abnormal cells (that is what causes the cancer and the need for chemo).  The way they test whether you need chemo or not is to test your hcg hormone with a blood test once a week until it is gone, or starts creeping back up.  Every week mine fell and fell and against all odds, it went to zero naturally.  I say against all odds because for women with a cmp and a twin, they almost always end up needing chemo.  In fact, my hcg on surgery date was 1.8 million which is the highest I have found on the internet, and I think I am the only woman I have seen that came down from the same sort of situation without chemo.  This was exciting for many reasons, but mostly because the time line it took me to get to zero (almost 7 weeks) gave me the green light to start trying for another baby right away.  The loss I had at 19 weeks pregnant made me ache for a baby in my arms as quickly as possible.  Plus, Rob and I had plans to get Scout a sibling quickly.  Two years went by and there was no baby.  The doctor's couldn't figure it out.  Molar pregnancies aren't supposed to cause infertility.  They finally figured out I had a messed up fallopian tube and put me on Clomid.  After 3 months of that, I was finally pregnant!  I was shocked and we were overjoyed.  This pregnancy felt more like Scout's, I felt great, everything was going awesome, but I was nervous.  The last one was such a giant fiasco, you can't help but be scared.  During the ultra sound we found out we were having another girl and we (especially Scout) were overjoyed again.  That summer we had a scare with her heart beat, she had an arrhythmia.    After some specialists, we found out that it wasn't a problem and it went away. 

Birth day came and I was induced.  When she came she had the cord around her neck, and was blue.  She had a terrible first apgar, but a great second one.  The first day she didn't want to nurse and the nurses made a huge deal out of it, but when she finally got hungry, she nursed away like she'd been doing it her whole life.  We took her home and marveled at the sweet little baby we had.  She was the sweetest, quietest little thing ever.  She slept great.  She didn't want anything to do with a binkie after she was about 3 weeks old, but that was ok, she didn't seem to need one.  She started sucking her tongue instead (I didn't know that was what she was doing until much later).  She didn't seem to be able to figure bottles out, which wasn't as ok as the binkie thing, but we managed.  She started using her feet in interesting ways.  She would hold a toy in her feet and play with it with her hands.  Kind of weird, but very entertaining.  She didn't do things as fast as Scout, but I was determined not to compare my kids, so I let her do things on her time.  We managed to get her to sit by herself reasonably well by 9 months.  She finally figured the bottle thing out at 11 months (just in time!) When we got to her first birthday, I shelved the worry that she wasn't crawling yet (let alone walking).  We chalked it up to her being so dang happy and content no matter what she was doing.  She didn't need to go places, she was just fine where she was.  She was so happy!  She started laughing 6 weeks earlier then Scout did.  Her laughs were almost always reserved for Scout.
By 15 months and nothing having changed, the worry was getting harder to ignore.  I finally mentioned my fears to my doctor (they were about the cord being around her neck at birth, I was secretly fearing that she had suffered brain damage).  We took her in for a neuro exam with her ped and she did fine.  He mentioned that we could contact Kids on the Move (they are a program with our local school district that help kids 0-3 that are developmentally behind).  He suggested that these people could maybe get her moving and they often observe more then a doctor that only sees a child during an office visit.  So we did and they accepted her in their program.  Right away, they could see that something wasn't quite right with her.  This started a chain of testing, including appointments with Primary Children's Medical Center in Genetics and Neurology.  We were scared, but couldn't imagine she was really bad off.  After a few more months though, I started accepting that we were probably looking at something more then a child with a few learning disabilities.

After talking to her Geneticist, we basically found out that we were most likely looking at a child that had severe mental and physical challenges.  Because of her history and a few other clues (including her extreme sweetness and happy demeanor) the doctor figured she had Angelman's Syndrome.  He also thought it could be Rett Syndrome.  We took her home that day and a feeling of peace and acceptance washed over me.  I was ok with this.  I knew we would have a different life then I had planned, but somehow, this was ok.  Elinor was the nicest baby I had ever been around, so how could it not be ok?  As of now, she has had two Angleman tests (both normal, which knocks out 80% likelihood of that one), one rett test (normal, I don't know the odds) and an MRI which also was normal (that takes away any chance that we are looking at brain damage and tells us what she has is strictly genetic).  We are facing more genetic tests to isolate the genes that Angleman and Rett effect.  Where we go from there, is most likely no answers.  

I do know one thing.  Elinor is exactly the person she was meant to be and she is exactly where she was meant to be.  We went through a lot to get her here and I am grateful every hour of the day that she is my baby.  She makes me feel so good when she is around, it's like she radiates this feeling of peace and love that really soothes my soul.  I don't know what I ever did without her.  Shortly after finding out all this, I came across a sister of an old friend's blog that has a daughter with cerebral palsey and she had a quote on that post I read that has changed my life.  It is from a book called "The Water Giver", a book written by a mom that had a son with sensory issues and pretty big learning disabitlites and she really really struggled with that and they did not have a good relationship.  At 15, he was in a skateboard accident and suffered severe head trauma.  He was in a coma for months and during this time, she totally changed and when he woke up, they had a beautiful relationship from then on, because she learned to accept him for who he was.  She ended her book with this (which is the quote I liked so much):

"Motherhood is about raising -and celebrating- the child you have, not the child you thought you would have.  It's about understanding that he is exactly the person he is supposed to be.  And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be."

I have no doubt in my mind that Elinor is going to be one of my greatest teachers.  I like how she said person instead of mother, because I feel that Elinor is here not just to make me the mother I need to be to my two girls, but the person I need to be to come even close to reaching my potential. 

My church (The Church of Jesus Christ of Latter-day Saints or "Mormons") has some very fundamental views on Heaven and this life on earth.  We believe that we are spiritual beings that are currently living a life on earth and when that life is done, we will go back to living the spiritual life we were living, with this earth life just being a tiny part of our eternal life.  This is the Lord's plan for us.  As part of our spiritual journey, we need to spend some time on earth as a very important part of our plan (important, even if it is a comparably short time).  It is, for lack of a better term, a test.  We are being tested on this earth to see how well we do.  How we treat our fellow man, and how we treat God.  We are experiencing things we can't experience anywhere else, mostly temptations and having free agency to make our own choices.  We can only hope that we do ok here and make some right choices now and then and then move on to greater things after we are gone.  Our families on earth are our families in heaven and have the opportunity to be together forever some day.  

We believe that sometimes there are spirits that are perfect.  They somehow are beings that don't need to be tested on earth.  I am a person that needed to come to earth to go through the ups and downs and choices and to prove myself worthy of living a life in heaven with God, etc.  Elinor needs no such test.  She is there already.  She has a free ticket to heaven (as do I believe, some babies that are taken before they have the opportunity to make choices and live a life here, also included are people that mentally have no way of being accountable for their choices).  A huge part of this "plan" is to gain a body, even if it is just for a short time.  Some babies are taken before they can even take their first breath.  Some, come to this earth for us, not them.  That is what we believe Elles is here for.  She doesn't need this, but we need her.  We need her to teach us that life is about so much more.  I am sure she has a lot to teach anyone that will listen. 

I don't know what the future brings for Elinor.  I don't know how far she will go in life.  I don't know if she will ever walk.  Chances are that she will never talk, we might get a few words out of her if we are lucky, but it looks like she most likely won't develop any real language skills.  If she has rett, I really don't know where our future could lead, she may loose the ability to even feed herself or use her hands with any purposeful movements.  Or, and this one fills me with the most fear, she could stop making eye contact with us.  Although, she used a spoon pretty good for the first time this week and we are over the moon about it.  Her hands seem to have a little more control then they did a few months ago.

That is another gift she's given us.  I can't describe the feeling we get when she accomplishes something.  What a wonderful feeling it is to see her overcome her limitations and progress.  I don't want to discredit the awesome milestones that Scout has reached.  That is awesome too, but with Elle's limitations, her triumphs are grand indeed.  It's a different feeling and makes me feel a joy I can't describe.  I am so grateful to be able to celebrate a child's little advances in such a way, they each feel like a miracle and miracles are special things to witness.  I look forward to her many triumphs to come.

One of the most remarkable things about all this, is that I have a daughter that I will meet properly only after we have both passed.  I will most likely never have a conversation with her on this earth.  When she sheds this earthly body, she will be whole, and have a sound mind and be able to do anything and everything she can't do here with her limitations.  What a reunion that I have to look forward to!  (But hopefully not for a long, long time........I can wait 60 years or so.)

I think Elle is going to (if I let her), change me in ways I needed to be changed.  What better motivation could I have to be the best person I can be, then to have this shining example of goodness and such a beautiful spirit in my own home?  I am not the person I should be, I make mistakes every day and wrong choices.  I don't do all that I should be doing.  But I want to do better, Elinor more then anything I have ever come across in my life, makes me want to do better.   It gives me pause and makes me feel so humbled that Heavenly Father trusted me to raise one of His special spirits.  I only hope I can endeavor to live a life that makes me deserving of her, and raise her to make my Heavenly Father proud.  I bet she was hard to let go of, maybe that's why it took so long to get her here. 

Untitled from Emily Pugh on Vimeo.

This is a video my brother Matt and his wife Bronwyn (B) made for Elinor.  Thank you so much you guys for making this video for our special little one.
I hope you all like it and can get a glimpse of the joy we feel living every day with this beautiful girl.


Ami Hart said...

Oh, Em. I'm sitting here crying and laughing and just feeling amazed at how wonderful little Elinor and you and Scout & Rob are. This whole post just lifted my spirits. You are such a positive wonderful person and have a wonderful family. Thanks!

The Holdaway Family said...

What a beautiful post. She is a wonderful spirit, I can feel it through your writing and the wonderful pictures you take and the wonderful movie your brother made. You have inspired me to not only be a better mother but to be a better person.

Haley said...

Amazing video and post. I loved them both. That video is great for people who don't get to spend a lot of time with her. She really is the sweetest little thing. Great job on the video, Matt and B. Definitely teared up. She really is an angel.

Pops said...


Neaners said...

Oh Emily! I cried reading and watching this! You have such a gift in sweet Elinor! A truly precious spirit! I do believe that these children are put on this earth to teach us as well. Everyday at work I gain strength from them. I love you and will always be here for you and your sweet angel.

Anonymous said...

i love your outlook. you are a remarkable person. i am wondering if you would be willing to look in to cord blood. If she could qualify for a study they have done some remarkable things. it would involve finding a donor match, and then they would do one or even two transfusion. I know that you still do not not what the genetic cause is but they are doing a lot with cord blood now. and more people are donating their child's cord blood. i am sure that you have done immense research. i hope this is not insulting. i just had a very difficult pregnancy and a tiny baby girl. i am so scared to try to have another baby and i admire your courage.

Beth said...

Em. Thank you so much for writing this post. It has been such a great reminder to me that our kids are precious gifts to us. You have helped me remember what is most important. That Elinor is just a sweetheart. Let's get together. Can I please take her pictures???

Emily said...

Hmmmm, let me think beth- YES! She turns 2 on Sunday, so this is the perfect time to get some pics. She is a little difficult to take pictures of, she rocks a lot and doesn't follow instructions, but she doesn't walk or crawl away and doesn't cry much and she is pretty cute. Let's set something up.

Anonymous- Thanks for posting. I haven't looked into cord blood, but I am open to anything and look into if her doctors/hospital work with that area of medicine. I'm sorry to hear about your troubles and know the kind of courage it takes to try again. Best of luck to you, be strong, I'll add you to my prayers.

Amy said...

That was beautiful Em. Thanks for the reminders. Our family is blessed and will always be blessed for the influence Elles has in our lives. I hope we will all be receptive to the things she can teach us. I'm also so grateful for your shining example to us. I wish we could be there Sunday to celebrate her birthday. Love you guys.

megandjon said...

Oh Emil, there are just no words. You never cease to amaze me. i've been crying my way through this wishing i could share it with some people. do you mind? i might post it on facebook too, with your permission of course!

Emily said...

Of course you can- I've had a few friends and family share it on facebook. This can be one of the ways Elinor can teach people- just by sharing her story.


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