Monday, August 5, 2013

Motivated Mondays - Inspirational Homecomings, Inspirational Moments.... my inspirational friend, Eileen

Today's Motivated Monday guest blogger is my dear and wonderful friend Eileen.  Her guest post is going to have a bit of a different format because she is actually someone who I have blogged about before and whose writing itself is inspirational.  And so this blog post today will consist of things I have written, things she has written and will, hopefully, tell the story of this amazing friend of mine, her daughters and how inspirational they have been to me.
I do apologize for the weird fonting and colours at times.  I spent hours trying to fix the glitches but then decided that there was really nothing I could do that did not make it worse.  Here you go....

I 'met' Eileen in the winter of 2011 as she struggled to make decisions and choices. Like Cole, one of her little girls had a velementous cord insertion and a poor placental share. She hoped she would be a candidate for surgery though she was very scared of what that meant. She did have the surgery and like us, learned the next day that one of her sweet babes had gone to be with Jesus. She never referred to her as an angel though she did often say that she knew she was watching over her sister. Like me, she believed that her heavenly baby had lived just long enough to ensure that her sister survived.
When went back through to write this blog post and read through her posts on her blog I realized that, although I knew we had a lot in common in our faith experiences/feelings and in our stories/TTTS experiences, I had no idea how much we could have been writing each other's stories....

 I watched the technician’s face, looking for any sign of what she was seeing on the screen, but couldn’t tell. Then she went to get the doctor and his face was a little easier to read. He seemed encouraged and then dismayed. “Did we lose the donor,” I asked. “Yes,” he said, compassionately. He showed me the screen and told me that Brigid looked to be showing some improvement already, but he also showed me that little Fiona’s heart was no longer beating. The range of emotions was difficult to process. Sorrow over the loss of our little one, thankfulness that she was able to hold on until the surgery, encouragement that Brigid seemed to be doing better, fear that there was a chance that we could still lose Brigid in the days and weeks to come. Patrick and I held each other and cried. It was so terribly bittersweet. I asked the doctor what would happen to Fiona, and he said that she will just stay until Brigid is ready to be born. Thinking about what that day will be like is terribly overwhelming and for now, I try not to.
I had to stay in the hospital for a little longer to finish my dosing of post-surgery antibiotics, and then we went home. I am on fairly strict bed rest now (only up to use the bathroom and shower), hoping and praying that our little Brigid gets stronger. Having our boys here is like medicine for our aching hearts. We have been so overwhelmed by the outpouring of love and support from our friends – offering childcare, bringing meals, helping with groceries. It is very hard for my Type A controlling personality to sit on the couch and watch others run the house or to delegate to people who are here and asking how they can help, but I think I’m going to have to get better at it for at least the next two or three weeks.
The whole experience has been surreal. We were not trying to have another baby right now, but we learned that we were. Then we learned that we were having twins. We learned they were identical and that felt special. Identical twins is something that happens to other people, not to me, but here we were. Then we learned that we had this syndrome and I was going to have in utero surgery and that, too, seemed surreal. Losing a twin makes it feel like that specialness has been taken away. The dressing them alike, comments from strangers – all that has been taken away and it feels like a void even though they haven’t even been born yet. It’s only the second time I get to use the “twins” tag on a blog post, and yet, it’s the last.
Fast forward the story about 8-10 weeks when my Eileen’s water broke and she was hospitalized and began the regiment that all who have a premature rupture of their membranes go through…steroid shots for the lungs and antibiotics to prevent infection. All seemed well and it seemed that her little survivor would remain in utero, like Cameron, for many weeks to come. But then about 5 days or so after her water broke her little survivor arrived…at 28 weeks gestation.  She seemed to be doing well initially but then began to struggle so she was transferred to another larger hospital. She continued to struggle to clear the carbon dioxide from her body but everything else with her seemed to be going well.
I watched everyday on facebook and her blog for updates on Brigid. I marveled at Eileen's amazing faith...
I’d find myself making little deals in my head with God in the car. “Okay,” I’d think. “If I see a rainbow, that means Brigid’s going to be fine.” And then I’d crane my neck all over looking for one, all the while reasoning with myself that even if I don’t see a rainbow, she could still be fine and realizing that I could see one and she could die tomorrow. I’m testing God, I’d think, and then I’d feel ashamed of my silliness. He doesn’t owe me a sign. He’s told me enough about himself for me to have faith in this situation, whether or not I see a rainbow.
It’s not faith that Brigid will be okay that I’m called to have. If that were the case, and she died, my faith would be shattered.
Rather, it’s faith in God’s goodness. It’s faith in the fact that His ways are not our ways. That all things work together for the good of those who love Him. It’s faith that God is sovereign and knows us and loves us and sees our situation. Faith that we’re still in the palm of His hand. It’s faith that if it’s His will for her to heal and grow, she will. And if it’s not, we’ll still be okay. It’s faith that He knows more than we do. Faith that He is trustworthy and that He loves our baby girl even more than we do.
This is the faith that we are called to have. This is the faith that I have to exercise each day, as surely as an athlete exercises his heart and muscles for an endurance trial. God is so good to give us our daily bread – the strength to get through each day, even when we don’t know what is at the end of the road.
I’ll still crane my neck to look for the rainbows.
But not because they have anything to do with Brigid.

Eileen amazed me at how well she balanced her home life with three boys, traveled to the NICU daily for Brigid and planned a memorial service for Fiona....

We’re going to bury Fiona today.
It won’t be a large service. Just Patrick and me and a priest from our parish at the grave site for a little prayer service.
I’m not looking forward to it, and yet, I’m glad we get to do something to memorialize her. A song I was listening to yesterday had a line in it that reminded me of Fiona: “Beautiful setting sun, though I can no longer see you, I see the light your daily death has given to the stars.” Fiona lived just long enough to save Brigid’s life in utero and is watching over her now, I have no doubt.
 After a few procedures and surgeries on both her heart and her trachea it seemed that this little survivor’s battles were behind her. There were, of course, scary moments.
I went in today to find Brigid having more breathing issues. Her oxygen saturations were low, despite being on a high oxygen concentration with the ventilator. I found out at rounds that she has a collapse (atelectasis) of the top part of her right lung, so we went from one airway issue to another.
She was very lethargic and a little pale, not her usual feisty self, but they ruled out any infection and feel this could just be secondary to her surgery. Chest PT, frequent suctioning, and turning her on her left side seems to be helping a little. She will get another chest x-ray later today to see if it has opened up some.
How many x-rays can a tiny baby get before she starts glowing, I wonder. I think she’s averaged one per day so far. That’s way more than I’ve had in my 37 years of life.
This road we’re on is such a long one and we are getting weary. At least I am. It’s been a long six weeks so far, and it’s hard to think that we’re still six weeks away from her due date. So we’re only at the halfway point. I’m hopeful that seeing some growth and improvement is what will help get us through the last weeks.
But all in all this little fight seemed to be doing amazing, guided by an amazing guardian angel twin sister. 
And then suddenly our TTTS Survivors with Guardian Angels community got a message from her mom that she was very sick with an infection and they had been called in to the hospital to be with her…. I assumed, just to give her comfort. I was shocked to learn the next day that Eileen's sweet little survivor’s journey was over. Brigid had gone to be with Jesus. I admit…I sobbed so hard I had to sit for a long time to get it all together. And I still feel that way at times. Their story was so similar to ours…and could so easily have been our outcome if Cameron had been born when my water broke at 26 weeks. Even today as I write this... 2+ years after Brigid passed away I have goosebumps. I wrote a blog entry about it myself but I will post Eileen's from that fateful day first...
It’s not the homecoming we’d anticipated.
We had hoped that sometime in the next few weeks, we’d be bringing our baby girl home to live in our house and play with her big brothers.
We’d hoped for some pink things and baby dolls and maybe even a few frilly dresses.
After she had a hard time yesterday, the doctors decided to test Brigid for an infection and found that she was critically ill from a bacteria that she likely developed from being on the ventilator. Her blood cultures showed that she was septic – the infection had taken over her bloodstream – and her little body fought it as well as it could. The doctors, recognizing the severity of the situation, called Patrick and me and told us to come to the hospital right away. She was having such a hard time, but we got to be with her and kiss her and sing to her. The bacteria was vicious and fast-moving, and it only took about 12 hours from the time she started acting lethargic until her body could fight no longer. At about 11:30 last night, Brigid went to be with Jesus.
We thought our homecoming would be a wonderful ending to a long and difficult road, but it would just have been continuing the race that is life on this earth for our girl. Instead, she’s already won the race and received the prize. Brigid’s homecoming was the final homecoming – the one where she gets to live in the mansions and walk on streets of gold and worship at the throne of God and see him face to face.
We are so honored to have been your parents, sweet baby Brigid. I’d been under the impression that I was holding your hand to help you through this difficult time, but now I realize that you were actually helping me by holding mine. Thank you so much. You are the strongest person I know, and I can’t wait to spend eternity with you and Fiona.
Here's a segment of what I wrote back then after I read that post....

I struggled to keep it together after learning about Brigid but after I read that post I cried harder and marveled at her strength. I didn’t think I could ever be that strong. Later that day I read this posting from her too…

The temptation during a time like this is to ask why? Why did this happen? Why did God do this? Why me? The fact is, this is life on this imperfect earth. Many people before us have gone through similar tragedies and worse, and many people after us will go through them. The better question is why not me?

This is where the rubber of our faith meets the road of life. Sure, it is unbelievably painful. We feel weak. We are beside ourselves. We are undone. How could she have pulled through heart surgery only to be taken by a fluke infection? There are many questions. But these things did not surprise our God. He is, and always has been, in control of this situation. He is good, he loves us, and he has not abandoned us. If we are to have free will, we have to live with sin and death and suffering on this earth - but only for a while. A day will come when "He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain."
We are anxious for that day to come soon.

This time I cried with tears of joy and inspiration. I wrote to her and told her that I was inspired by her to strengthen my relationship with Christ so that I, too, could feel so at peace about the trials of life and of death itself. 
I don’t know if I’ll ever be at this level of peace and confidence…I can only hope. I know that I can’t wait to go to Heaven to see Cole…and all the others who have been so blessed to go before me. I know that I will always have sad moments when it comes to the loss of loved ones but my friend has truly planted a seed in me.

Sweet Baby Brigid…thank you so much for blessing your family for your 6 short weeks here with your Mommy and Daddy and brothers and for the joyful (and I know stressful too) 28 weeks inside your mommy's womb with your dear sweet sister, Baby Fiona. Thank you for bringing such strength and hope to many. Thank you for teaching me some valuable lessons. I am so glad you were able to hold your mommy’s hand as you left this world…not to get comfort and strength from her but rather to give comfort and strength to her. Much love little one, say hello to Cole for me…I’m sure he met you at the gates with open arms and will show you all the coolest places that he has found.
When Eileen and I discussed her being a guest blogger she mentioned Brigid's eulogy and I realized that I had never even read it...somehow it just got missed in midst of the busy times that end of June and early July are for me in education I guess. I so wish I had read it then but then again maybe it had much more meaning now, after my own faith has taken such a drastic leap forward, since I have learned so much more about Jesus, about being a Christian, about the things that Christ did for us and what God has promised to us.  Regardless of the timing, the message is the same and I am so very warmed to my heart and soul by her amazing insights...
Thursday was Brigid’s funeral.
Since then, I have been swallowed up in a tsunami of grief that has left me barely able to function. My mind feels like it is still anchored back in the NICU on the night that she died, and my body has been stretched from that point forward to now, like a rubber band that wants to snap back to that point. To relive those moments before she died to see what we could have done differently. I feel fragile and disconnected and so very sad.
I took a few of the photos I had of Brigid and pieced them together into a sketch of what she may have looked like without all her tubes and tape. When I look at it, it makes me smile. It’s exactly what she would have looked like: a bit of her brothers and a bit of her own person rolled into one.

Somehow, I gave her eulogy. It was as if I were a robot. I don’t know how I did it, but I do believe I was supposed to, and so I did.
It said this: 
As I knelt in prayer at church this past Sunday, I pondered Brigid’s death, as I have done every second of each day since it happened.
Specifically, I thought about God as our Father and the giver of every good and perfect gift, who tells us that if we as parents know how to give good gifts to our children, how much more will he give good gifts to us if we ask him.
And I wondered: What about this?How is this a good gift?I’ve told our boys that just because Brigid died, it does not mean that God didn’t hear our daily prayers for her to grow big and strong and come home to live with us. “Sometimes,” I told them, “God tells us no just like sometimes Mommy tells you no when you ask for things. ”They accepted that explanation…but I wasn’t so sure I did.
We all tell our children no when there are things that they want that are not good for them, but as a mother, I tried to imagine the circumstances under which I could possibly tell my children no for something that would break their hearts as much as Brigid’s death has broken ours. Why would I tell them no for something that would make them happy? What would have been the harm in allowing us to bring our healthy daughter home to live with our family? Especially after we’d already lost her sister.
I racked my brain for an example.
It came.  It involved chocolate.  And I realized that it all has to do with perspective.I imagined myself baking in my kitchen. I love to make special things for my family, and I imagined I was making an extra special dessert treat for the birthday party of one of my boys.  Only he didn’t know I was doing it for him.
He comes into the kitchen where I am standing and asks if he can have a few of the chocolate chips that are on the counter.  Because I need to use them for the dessert, I tell him no.
Being the young child he is, he is devastated. “Please, please, please?” he pleads. “Trust me,” I say.  “No.”
He falls to the floor crying and kicking and screaming.  But I do not change my answer.  Instead, I lovingly pick him up, give him a hug, and tell him to go and let me work.  He doesn’t know it, but within a short time, I’ll have used the chocolate chips to create something extra special for his party, and I know that he will love it. This is why I can be a loving parent and yet be unmoved by his pleas.
And then I thought about this example in terms of my perspective on our situation.
To a young child, my denying him the treat that he wanted was devastating. But as his mother, I knew I had a plan for it that was far better. I knew his tears would be short-lived, but that he’d appreciate the final product much more than the chips by themselves. To him, the few hours until the party seemed like an eternity. But to me, it was just a brief wait that was worthwhile for the celebration that was to come.
The small chocolate chips would have been a treat for him and they would have made him happy, but the special dessert would serve many more people and benefit him as well as others.I have to think that our Father, with his infinite knowledge, sees our situation in much the same way that I, as a mother, see things in relation to our boys.
Our wait to see Brigid and Fiona again is nothing more to him than a little boy’s wait for his birthday celebration.  But oh, the celebrating will be so much greater.  The pain of being denied our request feels profound and deep; our tears will flow for months instead of minutes.  But to our Father, this is but a short-lived trial.  Our girls would have enriched and blessed our family had we been able to bring them home to live with us, but incorporated into his plan, they have been used to affect so many others.
Many of you might never have known about our twin girls were this not the plan.  And I’m pretty certain that none of us will ever be the same again. We prayed and we rejoiced and we prayed and we cried.Our prayers brought us to our knees in the middle of the night. They drew us in close to the God who was in control of this situation from the very start. They came from Australia and China and Hungary and Canada and Scotland.  They came from people who were prayer warriors and from people who had never prayed before. They brought glory to God because they made us acknowledge the frailty and wonder of life and realize that there is a power greater than us at work. To know that our girls may have been used as part of God’s plan for someone else is humbling . Our faith has not been shaken by their death.   Rather, it has been toned and stretched and strengthened. We have been brought to the end of ourselves and found that He still gave us the strength to go on. Our prayers for Fiona and for Brigid were really for our benefit too. The act of praying for them tested us and helped us to grow stronger.  And though God chose to answer our prayers with “no,” our prayers were not in vain.

I am sure you can understand now why I say that this dear friend of mine is such an inspiration.  As time went on we became more and more acquainted and connected through various facebook groups.  We shared a mutual desire for change to happen...for more awareness about TTTS within the medical profession, for better ultrasound and monitoring standards. Though Eileen had accepted that this was God's 'lot in life' for her and her family, although she was not angry at Him, she was very angry with her doctors and she decided that she wanted to raise awareness and funds for the TTTS Foundation by holding a walk in her girls honour and memory....

The goal is to make as many people aware of the cause and treatment of  TTTS as possible.  Sometimes, they might have to make their doctors aware.  I know when I asked my OBs specifically about TTTS – because I’d read about it online as soon as I learned we were having monochorionic twins (twins who shared a placenta) – and if I might be able to be seen by a perinatologist earlier for monitoring, they pooh-poohed my concerns.  Both of them (I switched after the first one dismissed my request) felt it was too rare to warrant “extraneous” ultrasounds.  I wouldn’t need one before the usual 20 weeks, they said.  I even called the perinatologist to ask if I might be able to come in on my own, without an OB’s referral.  They said no.
And yet, when we finally did get that ultrasound, at 19 weeks and 5 days, it was much too late.  The disease had progressed significantly and was in the late stages.
In hindsight, I wish I’d demanded it.  What would it have cost them to have me checked out early?  A form?  Probably not even that.  A computer click or two?  Women who are having multiples who share a placenta need not to feel like they are being pushy or silly for being concerned about this very real threat to their babies.  The doctors and midwives at my OBs’ offices are not losing any sleep over dismissing my concerns right now.  They remain completely unfazed by it.
Yet here we are with two dead babies.
I guess this is the anger stage of my grief.  I’m not angry at God.  I’m not wondering why he did this to me or why did this have to happen to me.  I’m angry, though, that my physicians were ignorant, and that, even when I was the one who did the research and brought this disease to their attention at appointments asking to be monitored for it, they did not think it was important.  That is terribly frustrating.  And while I don’t know that it would have made a difference in our outcome, it would at least have meant that everything that could have been done to stop it was done.
So now all I can do is warn others.  Be concerned.  Be pushy.  Demand.  No one loves your unborn babies like you do, and you are the only advocate they have.
And her walk was so wonderfully successful.  They raised $3000 and so much awareness.  As time went on I watched with amazement as Eileen was present on every TTTS board and group I could see, offering support and prayers.  Unlike me at this stage of my grief, she was not there as a way to talk about her girls, only to help others.  And as time went on it became increasingly obvious that we both saw a need for change to happen within the support community.  As a loss mom, Eileen also felt the feeling of 'discontent' and even rejection that many of us were feeling within the largest TTTS support community and soon we were co-admining a new group that offered a 'safe place' for all TTTS of photos and twin stories that reminded all of us loss parents of just what we had lost.  TTTS support needed to be about supporting others, not seeing cutsie pictures of survivors under the guise of 'giving hope'.  Not everyone who goes to those groups is carrying two living babies, not everyone who goes to those groups who currently has two living babies in their womb will come home with two and the reality is that we need to help others be prepared for all outcomes and know where they can go for support. Because she, like me was also disheartened to learn where much of the money she'd raised for TTTS support had gone in the past she became an avid supporter of The Fetal Health Foundation and referred the recently diagnosed to our support group and to Fetal Health for support.
And Eileen not only continued to support the TTTS communities but she supported me.  She knew of some of the struggles in my marriage, in my faith, in my heart.  We talked about our faith at times but mostly we just built a great friendship.  I loved reading the things she wrote/writes (stay tuned for a recent entry that she sent me to share).  
She has reminded me in her writings that life does go on...especially when we have other kids to look after... but that Christ will give us the strength to do just about anything.
But this is where the Lord has me right now. He knew that I’d have three little ones to take care of when our twins died.  He knew that there would be another baby in our family, too.  This is my vocation, caring for these little ones.  I can’t begrudge them their neediness – they’re little.  They’re just being kids.  It is hard work, even without the grieving factor added in.  But He can give me the strength and wisdom to do it.  I can do all things through Christ who strengthens me.  And they are some of the most amazingly wonderful kids in the world.
Today Eileen inspires me with her sketching project and blog,  Through this blog she offers her services as an artist to draw sketches of a family's little angel.  Here is what she wrote when I asked her to tell me what her journey with Brigid and Fiona has inspired her to do....

After Brigid died, I felt sort of stuck.  It was weird that we were the same five people that we had been before our whole ordeal, but now we had this…this thing that happened to us and changed us and we were nowhere near the same.  Additionally, just as our numbness and shock were starting to wear off, and the weight of our grief was beginning to really press down on us, our little family was dealt another devastating blow.  Yet another something that you hope never happens to your children happened to ours.  It felt as though someone were holding my head under water and I was struggling to come up for air.  I wondered if we would ever be a normal family again.  I wanted to just take us all and live inside some kind of underground bunker for a few years – where I’d know that everyone was with me and safe and we’d all be okay.  I realized that I really had no control and I wanted to get some control back.

I channeled my energy into fundraising and organizing a walk to benefit the TTTS Foundation.  I wrote letters to my doctors asking them to change the protocol for mono-di twin pregnancies and to allow women to be seen by a specialist sooner, something I was denied even though I had asked for it and mentioned that I was specifically concerned about TTTS.  (I was told it was not something to worry about.)  I started writing our story and then doubted that there would be anyone who’d want to read it, let alone publish it.  All the while, I’d look at Brigid’s face in the sketch that I had done for her funeral.  It was so painful, but brought me so much comfort to look at it, framed on our wall – another one of our children for people to see.  And then I thought that maybe I could do that same thing for other people.

While I’d dabbled in sketching and drawing my whole life, I was never formally trained as an artist. I wasn’t sure that I could even do something like that.  Just start drawing?  I’d always been private about my drawings, but these would be for other people to see.  To spend lots of time looking at, actually.  Do people just do that?  I asked a few friends who had lost babies if I might be allowed to sketch their little ones to test the waters and see if it was something I could do.  A handful volunteered and sent me photos of their little ones, and I realized that this was a unique and special privilege I was being given.  I know that people do not just show the photos of their little ones to just anyone. 

I have done several sketches since then, and feel humbled that I get to do this for other people. I know how hard it is to show people those photographs, but it is easy to show them a sketch.  And we all just want some way to make those babies, gone too soon, a bigger part of our lives.  Having a sketch to display gives you something to look at that is peaceful.  It removes the trauma that the photographs can remind us of.  It makes them a part of your family, too.  If it weren’t for the loss of my own girls, I would never understand this like I do.  They have inspired me to share my artwork with other people so that they, too, can feel comforted by it.  I feel humbled being able to do that for people, and I pray each time I do one that the Lord would help me to draw these babies in a way that would bring some peace to the hearts of the ones who are missing them.

I am so glad that God brought Eileen into my life . She truly is the best example of remaining faithful a midst trials and she inspires me, daily, with her positive attitude and her love for the Lord. 

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