With Hope by Steven Curtis Chapman

I saw a playlist on iTunes about the loss of a child and this song was on there.

This is not at all how
We thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you've gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you, but ...

We can cry with hope
We can say goodbye with hope
'Cause we know our goodbye is not the end, oh no
And we can grieve with hope
'Cause we believe with hope
(There's a place by God's grace)
There's a place where we'll see your face again
We'll see your face again

And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God's plan
But through the cloud of tears
I see the Father's smile and say well done
And I imagine you
Where you wanted most to be
Seeing all your dreams come true
'Cause now you're home
And now you're free, and ...

We have this hope as an anchor
'Cause we believe that everything
God promised us is true, so ...

So we can cry with hope
And say goodbye with hope

We wait with hope
And we ache with hope
We hold on with hope
We let go with hope

More about triggers and grief...

We are in the process of refinancing our house. In a couple of days we're going to get our house appraised. In order to "woo" the appraiser, we were working on tidying up the house and making things look as nice as possible. I walked into the guest room that was also Julia's room and saw Bob going through a bunch of old medical stuff that once belonged to Julia. He was putting them into to piles: throw away and donate. I was so surprised by my reaction... my blood pressure shot through the roof, my heart started pounding, and I felt total anxiety. I found myself getting very upset and I just couldn't let him throw or give anything away. He wasn't being insensitive to me, he was just clearing things out to make room in the drawers for other stuff so we could tidy. It was very reasonable. But what I discovered about myself is that I'm not ready to be reasonable yet. Tears came to my eyes and I got very sad. Writing this makes tears come to my eyes. I love my baby and I miss her.

Yesterday, a woman from the Silicon Valley Down Syndrome Network came to the house to drop off a meal. She came with her 2 daughters, the younger one having Down syndrome. I found myself sad. Both her daughters were beautiful, but I was especially captured by her daughter with Down syndrome. She had these adorable blonde curls and long eyelashes. She was so sweet. I imagined Julia as older and just as beautiful and precious.

Then earlier yesterday I brought home one of Mattie's little classmates from preschool. We put her booster in the back next to Mattie. After the 2 girls got buckled in, Mattie said to the little girl, "That's where Julia's carseat used to go. But she died." The little girl was very confused so I explained that Mattie was talking about her little baby sister. It made my heart sink.

Visitor from Heaven by Twila Paris

A visitor from Heaven
If only for a while
A gift of love to be returned
We think of you and smile

A visitor from Heaven
Accompanied by grace
Reminding of a better love
And of a better place

With aching hearts and empty arms
We send you with a name
It hurts so much to let you go
But we're so glad you came
We're so glad you came

A visitor from Heaven
If only for a day
We thank Him for the time He gave
And now it's time to say
We trust you to the Father's love
And to His tender care
Held in the everlasting arms
And we're so glad you're there
We're so glad you're there

With breaking hearts and open hands
We send you with a name
It hurts so much to let you go
But we're so glad you came
We're so glad you came

A Man in Grief...

A Man in Grief
It must be difficult
To be a man in grief,
Since “men don’t cry” and “men are strong”
No tears can bring relief.

It must be very difficult
To stand up to the test
And field calls and visitors
So she can get some rest.

They always ask if she’s doing all right
And what she’s going through,
But seldom take his hand and ask,
“My friend, but how are you?”.
He hears her crying in the night
and thinks his heart will break.
He dries her tears and comforts her,
But stays strong for her sake.

It must be very difficult
To start each day anew
And try to be brave~
He lost his baby too.

Poem sent by my friend, Jen.

A Pair of Shoes Poem

My friend Jen sent this to me. Thank you, Jen.

“A Pair of Shoes”
Author Unknown

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.

Happy 4-month birthday, my sweet baby.

Dear Julia,

We are celebrating your 4-month birthday in Tahoe. We just arrived today. It is beautiful. It has snowed just recently and the trees are all covered in white. I wish we could be experiencing it together. One of the things I longed for you to do was be able to feel the snow on your little nose. I can't even imagine how even more beautiful Heaven must be. I'm just so happy you are not suffering any longer. But I miss you. I can't help but wonder what you would be like if you were still with us. I bet you would be smiling by now.

I can't believe it has been a month since your memorial. You are in my thoughts every day. In some ways it seems as if forever has passed since you went up to Heaven. Life has a way of trudging on no matter what. But there are moments when I just long to hold you again. To look into your eyes again. Your sister, Mattie, has not forgotten you one bit. Every night at dinner when I ask what she is thankful for she says she is thankful for sphinx, our cat, and you, Julia. You are almost always a part of her daily play. She considers herself the big sister even now that you are gone. That makes me very happy. I am so sad that you did not get to grow up together. It was one of the strongest desires of my heart and still is. Mattie still loves you very much and I know she always will. Your daddy mentioned your birthday today. He was thinking of you, too. He also mentioned that he was sad you were not here.

Oh sweet baby. Sweeter than this world could handle so God took you up to be with Him. I love you so much. I miss you so much. I just want to love and kiss you.

Happy birthday, my daughter.

Love,
Your mommy.

Don't Cry if You Love Me... Saint Augustin

Sent to me from my friend Maggie. Thank you, Maggie. A beautiful image. But I can't promise not to cry. :)

Don't Cry If You Love Me by Saint Augustin

If you knew the gift of God
and what Heaven is.
If you could hear the angels singing
and see me among them...
If, only for an instant, you could contemplate,
just like me,
the Beauty before which all beauties turn pale.
Trust me.
When the day, which God has stated and knows, arrives
and your soul, which has been preceded by mine,
enters this Heaven,
That day you will see me again,
you will feel that I still love you,
that I have always loved you
and you will find my heart
with all its love purified.

You will see me in transfiguration,
in an ecstasy of happiness.
No longer waiting for death,
but walking with you
and holding your hand along new paths of light and life.

So, wipe your tears away
and don´t cry, if you love me...

Video about Down Syndrome

Along with the article about the lawsuit concerning the birth of a baby with Down syndrome was this video about people who are glad that they gave life to their child with Down syndrome. Here is the You Tube link:

http://www.youtube.com/watch?v=jVxz71ygHbk&feature=player_embedded

How did I feel as I watched this video?

Well, it made me cry. I have had such a mix of emotions surrounding Julia's life and death. Watching that video made me wonder what I was missing out on by not being able to see Julia grow up. I'm sure that anyone with a child with Down syndrome will tell you that I missed out on many good things as well as many really really hard things. One woman put it, "I always feel so overwhelmed that I don't experience the joy." I appreciated her honesty. Another woman responded, "Don't be sorry. You are not alone. Having a child with special needs is exhausting, stressful and sometimes heartbreaking. Nobody really goes around all day in saintly bliss because of their child with DS! When things get overwhelming, it's hard to find the joy in anything! I have been peppered with this same advice lately: "Take care of yourself." Get breaks whenever possible. If you don't miss your kids, you haven't been out long enough! And when the fog clears and you get one of those moments of clarity, where you feel the joy, or wonder, love or just acceptance, write it down." I really appreciated her honest and yet very supportive response, too! (That is what is so great about the people in the SVDSN.) In some ways it feels like our lives have been spared some future hardship from Julia dying so young. But in other ways, it feels like some profound joys and a deeper love than we could ever know have been stolen from us. Ultimately, *Julia* was taken from us. That is what is most tragic. On the video, I look at the pictures of the kids and parents and what they have to say about their child with Down syndrome and it makes me wish I could of had the chance to have been inspired by Julia. I think she was inspiring and would have continued to be inspiring.

I recommend you watch the video.

In case the You Tube link doesn't work, here is the link to the article and video:
http://www.lifenews.com/2012/03/13/couple-wins-suit-doc-didnt-suggest-aborting-down-syndrome-baby/

Lawsuit about Down Syndrome...

A posting just came out from the SVDSN reporting about a couple that was just granted 2.9 million dollars in a lawsuit because their doctor didn't warn them that their baby could have Down syndrome and then was indeed born with Down syndrome. They said if they had known they would have aborted the baby.

I was reflecting on how I felt about that. It pisses me off to think that 2.9 million is being spent that way. It makes me think that the couple is just milking the system. I am compassionate towards people who freak out about their Down syndrome diagnosis. I understand the shock and fear that comes with that. I also understand that it is easier to think about aborting a pregnancy when you haven't met your child yet (though I truly believe it is wrong... but I understand that it is easier to detach oneself from a baby when you haven't felt her kick or held her or looked in her eyes.) However, I don't understand how this couple could STILL say they wished they aborted their little girl after they met her, held her, saw her, looked into her eyes. When Julia was born, my fear about what the future held did not magically go away. However, when she was born, and I heard her cry and I held her, I LOVED her and I thought she was beautiful. As time went on, I barely saw the Down syndrome. I just saw JULIA. This couple has 2 other kids. What is the message that they are giving to their sons? That if either of them wasn't "perfect" that they wouldn't want them either? It is just sad that money is being spent that way and what the message of this court decision is sending out to both the medical community and the public at large. All I know is that Julia only lived 82 days and her life was profoundly significant and impacted so many! I hope that this couple's daughter can show them how significant her life is if they would only open their eyes to look for it. A harder life? Probably. A significant life? Definitely.

The funny things that are triggers...

So Mattie has this seahorse that lights up and plays music that a friend actually gave to Julia when she was born but that Mattie claimed as her own and named Chloe. She has been falling to sleep with this seahorse every night since Julia was born. It is very soothing, actually. I snuggle with Mattie almost every night after Bob reads her books. I usually snuggle with her until she (and all to often I) falls asleep and therefore, I listen to Chloe. Chloe is running low on batteries and the songs it plays are now playing very slowly and at a lower pitch that they should. I found myself feeling a bit of anxiety tonight laying in bed with Mattie and listening to Chloe wondering if Chloe was going to hold out one more night or if the batteries would poop out in the middle of Mattie trying to get to sleep. This would most definitely disrupt her ability to fall asleep and delay the falling asleep process... most unfortunate. As I was thinking about this, it all of a sudden shot me back in time to the last hour Julia was alive. The batteries of this toy running out triggered an image in my head of Julia's heart. Just as the batteries no longer have the power to make Chloe function and sing like it should, the cardiomyopathty in Julia's heart made it so her heart did not have the power to pump and therefore pump blood to Julia's body. In the same way this evening as I was anticipating Chloe to poop out at any second, I sat there in the last hour of Julia's life holding her, wondering with every breath she took if it would be her last. It was weird to be transported like that. The differences are that Chloe's batteries held out long enough for Mattie to get to sleep. Julia's heart could hold out no longer. I can change the batteries in Chloe and make her strong again. I could not fix Julia's heart and nor could the doctors. It seems silly to be comparing my daughter's heart condition to a stuffed animal... but that's just where my mind went this evening.

One month ago...

Yesterday marked one-month since Julia's death... February 8th. Overall, it was a good and positive day. I had Bible study in the morning and Mattie had a playdate in the afternoon with some good friends. However, as the day went on, I did reflect and replay the events leading up to her death. Just one month seems like a lifetime ago. Life doesn't stop moving. Everyone and everything moves on whether you're ready or not. This is especially true when you have a four year old. So in many ways, life is back to "normal" for us. Even when Julia was alive, our life at home was spent mostly without her so life without her now almost seems more normal than life with her. But I still still miss her. I think one image that keeps coming back to me is the way her eyes would lock into looking at me. If I moved, she would track me. If I spoke, she would turn her head. I remember the doctors commenting about this. The image of her sweet eyes moving is one I replay again and again in my head. Another thing the doctors often commented on was how I got her to calm down like no one else. I remember it was her last morning at the hospital. I had decided to stay at home the night before and get more sleep instead of sleep at the hospital. When I arrived at the hospital, Julia was clearly agitated. The nurses told me that she had been quite fussy and agitated all morning. One of the doctors was there and she, too, could not calm Julia. I remember I went straight over to Julia lying in her bed and put my hand behind her head like I often did and cradled it as I bent over and put my face close to hers. She immediately stopped crying and fussing. It was pretty powerful. She knew her mommy. She knew that her mommy loved her. It ripped my heart in two to think that I was not there 3 hours earlier to comfort her when she needed my comfort. But when your child is chronically sick, you learn you have to also take care of yourself so that you are strong and well enough to take care of your child when she is with you. So I did not beat myself up too hard- but it hurt my heart nonetheless. I know Julia loved me and knew me. She knew my voice. She also knew that I loved her very much. I whispered that I loved her in her ear many times every day. I kissed her sweet face and her head, her hands and her arms. I miss my little baby girl. I do. I am happy she is not sick anymore and in Heaven with Jesus. But I long for the day when I can cradle my hand behind her head and hold her and whisper that I love her in her ear again. When I can brush my cheek along her soft downy hair. When I can gaze into her eyes and she can gaze back with that focus and intensity she once had. I have no idea what our "bodies" will be like in Heaven, but I know I will be able to hold her somehow. And I can't wait.

Oh Lord, please give my sweet girl a kiss on the head for me tonight. Love her. Hold her and tell her how much I long to see her again. Please hold my other 2 babies that I have never met, one a girl and the other only You know. Homesick. I am forever Homesick for Heaven. Lord, sustain me and give me the strength and love I need to pour into Mattie and Bob. And please comfort my aching heart. Amen.

This Sunday's sermon was on suffering...

The passages were Colossians 1:24 and Colossians 2:5

I thought John's points were very good today. So I took notes and I want to post them. I put some of my own thoughts or things I got from each point below.

*Suffering is unavoidable
(That's for sure... but it does seem that some encounter it either more often or more intensely than others. That is what can be difficult or frustrating.)

*Suffering is painful
(Yep. It sure is.)

*Suffering exposes the hidden things of the heart
(A trial can really show your character- what you're made of. It can show hidden fears or weakness. However, I think it can also reveal strength you didn't know you had.)

*Suffering is formative
(It can both form and transform you. If we allow the light of God to shine on our dark places, God can begin to heal us from the inside out.)
Romans 5:1-5 (A significant verse to me especially when going through my trial of infertility.)
James 1:2-4

* Suffering leads us to deeper intimacy with God.
(This I believe is only true to the extent that we ALLOW God into our pain and are able to let Him in. We must believe that He loves and accepts us even in our darkest places and then we have to let Him transform us.)

Good word, John. Thank you for your message today.

Planting flowers

This weekend I planted some dahlias from Julia's memorial in our back yard as well as a rose given to us by the Jensen's. The name of the rose is Julia Child. Barb told me to put "our" between Julia and Child... so it is the "Julia our Child" rose.

The weirdness of experiencing death

I had 2 separate conversations this week with 2 different women sharing their experiences watching their mothers die. It was very comforting to talk to someone else who has "been there" and watched someone die like I did with Julia. It is a very surreal experience. It is weird to watch someone take their last breath. They are "here" one second and "gone" the next in spirit, yet they are still "here" in body. For all 3 of us, the experience was anticlimactic, which was a good thing overall. Our loved one died peacefully. But in that, it is difficult to accept they are truly gone when you can look at them in front of you. All three of us seemed to think to ourselves, "Is that it?" when it happened. I have not blogged about the minutes and hours after Julia died yet. I intend to. It was definitely peaceful and not as scary or creepy as I thought it might be. Having Julia in the house for hours after she died was not really that weird. What was and has been more difficult was feeling confused about the transition Julia made into Heaven. I know that there were angels singing and a huge welcoming celebration in Heaven for her. Her short life was significant and impacted people in ways I am still learning about. God used her life mightily and I know He is so happy to be united with her. But for me, I didn't get to hear the angels singing. I just had the hospice nurse tell me her heart was no longer beating. One second she was living, the next she was dead. I am still processing that. I still replay her last minutes in my mind. It has made me wonder about Heaven and question, "Is it real? or is that really just "it?" I've decided to have faith that Heaven is real... but I'm allowing myself to question God and process that for a while. I find what makes me very emotional is thinking about God holding Julia in Heaven tenderly... and wishing I was the one holding her. I miss her. Another friend of mine who lost her dad told me that she gets jealous of God that He gets to spend time with her dad and that she can no longer spend time with him until she joins him in Heaven one day. I feel the same. Eternity is nothing to the person in Heaven but seems like eternity for those of us left here on Earth to miss him or her. Sigh. I am sure that my experience of witnessing Julia's death will be with me forever and something that may take me a lifetime to process. However, I also am sure that God is big enough to handle my questions and my confusion. I am sure He is walking with me every step and that He would rather me come to Him with any feelings of doubt or uncertainty than try to suck it up and blindly believe or try to go it alone. God wants us to be authentic with Him. That is how He can touch our hearts. That is faith- that He will walk with us in our journey. I don't get it ("it" being a general statement about the confusing and conflicting stuff in this life,) but I don't have to get it. And that's totally okay with God. I just have to know that He's there with me and He's not going away... ever! And that that's okay with me!

Hebrews 11:1 Now faith is confidence in what we hope for and assurance about what we do not see.
I Corinthians 2:5 ...so that your faith might not rest on human wisdom, but on God’s power.

Julia's photo may be put in Lucile Packard's CVICU

We brought the large print of Julia to the autopsy meeting today to give to the social worker. Things are in the works to have the print (which is already on a 1" board) displayed somewhere in the CVICU (cardiovascular intensive care unit.) This was the large print that the photographer, Kathleen Dylan, generously gave us for free for the memorial. It was like 24" by 16" or something like that. It is such a beautiful photo! (I'll put the copy of it below.) This would be so special for me for so many reasons. Julia spent time in the CVICU twice during her short life. It just makes me happy that her picture will be hanging up in there so that she will not be forgotten. I am hoping that I can go "visit" the photo from time to time.

Autopsy results

We met with 2 doctors from the heart failure team (a small group of specialized cardiologists) and the social worker today to go over Julia's autopsy results. Fortunately, there were no surprises. That was our greatest fear... that they would come back and tell us, "You know, we actually don't know why Julia died." Thank goodness, that was not the case. Everything confirmed that it was cardiomyopathy in combination with her AV Canal heart defect that caused her death. As Dr. Hollander put it, "One disease made it harder for the heart to work and the other made her heart have to work harder." We found out that her heart was actually twice the size and weight of a healthy heart her age. We still don't have any genetic results back from when Julia got genetic testing. We're waiting on that. It shouldn't be too much longer. However, the genetic tests are not always conclusive. From what I understand, there is only a 60% chance that they will be conclusive. Therefore, Bob, Mattie, and I all have to get echocardiograms this year just to check out our hearts. We're not too worried about it, but we must admit that it a small lingering dark cloud over our heads. Cardiomyopathy is still not a fully understood heart disease and it affects people differently and at different points in their lives. Someone could have cardiomyopathy and die of something completely different at age 92. Then there is Julia who only lived 82 days. All this shows me again how complex the human body is and points to an intelligent Creator. There is so much we know and yet a deep ocean of things we still don't know about our bodies and about Creation (and never will.)

I have to mention again, how cared for I felt by the Lucile Packard doctors. The doctors and staff that work there are a special group of people that obviously are doing what they do for more than the money. They truly love what they are doing and they value the relationships they build with the families. Dr. Hollander basically said, "Once you are part of the Lucile Packard family, you are always a part of it, even if your child is discharged or even passes away." They invited us to call anytime and set up appointments or meetings even just to say hello. I feel so blessed, despite the horrible circumstances, that we were able to be part of the Lucile Packard family.