Welcome

This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.







This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.





The content might sometimes get a little heavy. As an understatement..







WARNING:







People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.





If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.



I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.





Welcome along!





Monday, November 26, 2012

An Interesting Morning

OK, we had a small scare this weekend, but I don't want anyone to get all worried after the fact.  Everything is OK, at this time.  So no one freak out, OK?  (boy, three "OK's" in a row)

On Sunday morning I woke up with a dull back-ache and a "menstrual cramping" feeling across my abdomen.  It felt exactly the the cramps I had the week before my last miscarriage, and if you look it up in the baby book, it is listed as a symptom of miscarriage.

So we were pretty worried.  We went in to emergency where we discovered that Baby had a good, strong heartbeat.  And that my uterus was nice and soft (and thus not having hard contractions).  Which was a relief.  We did blood work and a pee test in case my symptoms were the result of a UTI, and they sent us home with instructions for me to take Tylenol for the pain and to rest and take it easy.  They scheduled me in for an ultra sound Monday (today).

We were feeling better as we drove home.  Still a bit worried, though, as my pain was continuing and as the Dr. warned that he really couldn't say one way or the other if I were indeed losing the baby.

Today we went in for the ultrasound.  I was feeling much, much better both physically and emotionally as last night the pain had greatly subsided, and this morning I no pain at all.

The ultrasound was also encouraging.  They check the baby's placenta and the mommy's cervix.  While technically the tech (hee hee, that sounds funny) can not diagnose anything, I took it as a very good sign that there was no emergency since they let me go without a doctor coming to talk to me.  My doctor gets the final report to share the details with me, but I am pretty sure that if Baby was in danger of dropping out of me any minute, they would not have sent me off without warning me and ordering me to stay off my feet.

Baby is beautiful, by the way.  I saw a face, and a brain, kidneys, a heart, bladder, tummy, arms, hands, legs, feet.  :)  I even saw the lips and nose.

Wanna know what I DIDN'T see?  Oh, I just bet you do!!  Well, first let me say that the tech warned us that the angle was not perfect, and that there is enough of a margin of error that she wouldn't record the sex of the baby on the official report.  But we all agreed (even the tech) that baby did not appear able to pee standing up!

(disclaimer) NO REFUNDS IN CASE OF DISAPPOINTMENT LATER

but....

It seems that Baby is a girl!!!!

Which was a total shock to me.  Seriously, I was in shock.  I was expecting a boy, I think.  I still can not believe it.  I wanted to tell Steve to take me out to buy the cutest little dress ever, but I was afraid Baby had tricked us.

Because I can tell you that Baby has a mind of her own.  She did what she wanted to do, and our ultrasound be hanged!  I have never had to flip and flop on an u/s table like that before.  For both boys I lay on my back and I am pretty sure I stayed there the whole time.  The tech never did get one or two of the pictures of Baby's heart that she needed, because Baby just refused to turn to the right angle for her.  I got up to pee to shift her, and while she did move, it didn't help.  I lay on my right side, and then my left side, and then my back and then my right side and then my left side.. you get the picture.  I was very amused, but now I have to go back on Friday for about 5 minutes of u/s photos.  :)

In fact, she didn't let Daddy and Caeden see her face either.  The tech got it and I saw it, but by the time the boys came in, she had firmly placed herself face down.

Hope you are still with me through all this details, I mostly put em in for the relatives who read this and actually care.  The rest of you are welcome to have snored through the play by play.

For now, Baby is moving.  I have no more cramps.  And the ultrasound tech didn't look worried.  So I am going to relax and not worry about it, unless there are further developments.  It looks to me like a false alarm.  Whew.  Thank you God. 

Wednesday, November 21, 2012

Just about half way there!

So, here I am at nineteen weeks....!

I started to feel Baby moving at about 16 weeks, and each week the movements get a bit stronger and more frequent.  I am really looking forward to the day when Steve and Caeden will be able to share in that, because Baby is big enough to make his/her presence known to the outside too.

Baby continues to be more "real" to me.  By which I mean that my brain is starting to conceive the idea that come some day in April, there will be a very small little human being living in my house.  Which is very exciting, but of course, not without it's share of very strong emotions both positive and then the more difficult.

Because it is all a big, big unknown.  And most days I feel fairly happy and excited about it.  But also...

Two nights ago I had a dream about Baby's arrival.  In my dream, I was newly home from hospital and was caring for Baby and nursing him (it was a boy, and NO, I DO NOT think this dream was in any way prophetic!).    Then in my dream it occurred to me that I was home from the hospital and no one had even checked or tested Baby for PBD.  So I put my hand on Baby's small little head and felt... huge sutures still unknit in the bones of his head and a large fontanel...  In my dream it felt just EXACTLY like Joel's head had felt, even though in waking life, I have been having a hard time remembering exactly what Joel's newborn head felt like.

And then the emotions hit me.  I wept, because Caeden wanted a healthy sister, and he was getting a sick little brother, another Joel.  And I wept for Baby, because I love Baby so much and I want to feel a healthy little head that can grow and develop and not get sick one day and die.  Of course that is what I want.  And in my dream, the emotions of it hit me, and I wept.

Which made for an interesting day of thinking yesterday, after I woke up.  Things do look different in the light of day, though.  Thank the good Lord.

I read an adoption story recently, where a mom shared their experience with fostering to adopt.  That mom was saying that people who foster adopt need to be people capable of faith.  She was talking about having faith that they could love a child and let it go, faith that going back to the child's family really could be best for the child, faith that they could survive the pain of letting that child go.  That sort of thing.  That resonated with me.

Because this experience is all about faith for me too, only I put my faith in God, not my own abilities which are admittedly often quite sparse and unimpressive.  This Baby is a child of faith.  Not that I believe God will give me a healthy child, though surely I hope that very strongly.  The faith part isn't believing I'll get what I wish, but rather that if I get what I do not want, there will be grace sufficient for me to be joyful and peaceful and content, not in getting what I want, but being made able to want what I have gotten.  And in a sense, I am already grateful and happy with what I've got, even if it is not what I want.  Confused yet?

I am believing that God is faithful and will give me the strength to care for Baby, even is there is no sleep, or even when there are doctors and symptoms and stress.  I am believing that God is faithful to give me great love for Baby and still survive the pain of one day losing my child.

None of that faith makes it easier for me to suffer the stress or pain or loss.  I mean, the pain of surgery hurts whether you have trust the doctor knows what he is doing or not.  But it does give me courage.  That is a different thing, and it is not courage that is innate or part of my character.  It is courage that just springs from the trust I have in God that He has carried me through, and will carry me through, even in the darkest and most difficult parts.  Even knowing already a little bit of just how dark and difficult it can be.

And it means that even though now some days are crying days as I miss Joel or think about the difficulties that lie ahead, I am still full of joy about this little one jumping around inside of me.

I still don't have my date for my ultrasound.  It's gotta arrive soon, as they usually want to do it before you hit over 22 weeks.  I can't wait to get that done.  :)  It is scary for me, and exciting too.  It won't tell me if Baby has PBD, but at least I will know that major organs are all looking good.

Awhile back, Caeden admitted to Steve and I that "I was sometimes jealous of Joel."  It was so good to hear him understand that and admit it so we could talk about it.  Whew, what a blessing to have that in the open for him, so that when Baby arrives we can continue the discussion as necessary.  Because sick or healthy baby, Caeden is bound to have some moments of jealously.  Even now, as my lap gets smaller and smaller, it is a bit hard for him.  I'm trying to get across the message that sitting next to mommy with her arm around you is still a good thing.  What I'll do when both arms are holding Baby, only God knows!  But I trust Him to share that wisdom with me, when the time comes.

BTW, my belly is HUGE.  Already.  Yikes!  It's always like that for me, I seem enormous and I'm only halfway through.  I've only gained 8 pounds, which is the lower side of average for my dates, so it's not like I'm packing on the pounds.  But I'm ready to topple over with each step.  Maybe one day I'll put up a front and side picture.  From the front, it really doesn't look bad at all.  Then you get the side shot...  :)  My mother in law would love to see those pictures up here.