*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.
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
Original Comments
11
comments:
.
