Thursday, February 26, 2015

The Courage to Be Broken (final, for now)

This morning has been rough. My Mason is struggling with a recurrence of chronic pain and my heart is aching as I cry out for God's healing. I say this to you, my dear readers, as I begin the third and final installment of our story as I shared it with the young mothers group last week. I share it to assure you that though my time with the MOPS group had to come to an end, I could in fact talk and talk and talk to you about the obstacles my children (all four) have to overcome daily in this walk; I could talk about my ongoing grief as it cycles during big life events (last year's prom sent me into a dark dark place) and especially, oh most especially, when I have to watch my precious ones hurt and suffer pain. And if you are on this journey as a special-needs mom, then consider yourself hugged today. I am here. I am walking with you. And I understand. (If you need to read parts one and two, click here!)

Here's the next (and final for now) installment of our story:

I wish I could tell you that I embraced the idea of grieving immediately. I didn’t. My heart felt broken but it wasn’t until I received a call that my sweet friend had delivered her triplets at 35 weeks – considered full-term for multiples – that I broke into tiny pieces. I had prayed mightily for my friend and those precious babies. But instead of rejoicing in a healthy delivery I threw myself a pity-party.

 “God doesn’t love me as much as he loves my friend. More people were obviously praying for her. Her faith must be stronger than mine. God must love her more. That must be it, God loves her more.” 

Oh it was quite the pity party -- I had balloons, cake, everything!

That very week, God gave me scripture centered around an imprisoned John the Baptist. When John’s disciples went to Jesus for help, they asked him, “Aren’t you the one who is to come?” Basically saying, aren’t you the all-powerful Jesus or do we need to look elsewhere? Do you understand that? They wanted to know if this was the miracle worker, the One who could save their friend!

In Luke 7:13-28, Jesus assures them that he is the ONE and yet, he doesn’t even consider saving John the Baptist from prison – and imminent death. Jesus continues to speak of John, actually describing him as being:

…Among those born of women none is greater than John.”

Yet Jesus did not save John. It was not God’s perfect plan. John was greater than any other human born from a woman and YET, Jesus chose not to save him.

That was a turning point for me. That was the day. The day, when I realized God loves me. God loves me and God loves my boys. That was the day that I cried out to Him and asked him to help me put my broken pieces together. That was the day I called my grief grief, and felt courageous enough to embrace it and then leave it alone.

And ladies, because God is….well, God, He did the coolest thing. He used my boys to help me learn how best to cope.

I told you Benjamin was five when he started using a wheelchair, by the first grade we thought we had the logistics down pat – van, ramps, sidewalks, etc. But in the middle of that first semester in school, my Benjamin got in trouble. He needed a bathroom break at an apparently inopportune time for his teacher. His aide would take him but he hated waiting for her to wash up, etc and so he began to drive himself back to class. The teacher felt strongly that her door remained closed and so without his aide, Benjamin could not get back into the classroom. So this bright boy, not wanting to miss any more school than necessary, devised a way to alert his classmates to open the door. He would ram it with the tray on his wheelchair as his way of “knocking.” Oh boy, his teacher did not like this. And one day she gave both Benjamin and I a stern encouragement to come up with a different system. 

After I settled the triplets into bed that night, I heard Benjamin crying. I knew – as Mama Bear knows, that he was crying about his teacher fussing at him. I went to assure him that I would take care of it the next day. I was fairly fuming by the time I knelt beside his little bed.


“Yes, baby, what is it?”

“Mama, I’m worried.”

“About what sweetheart? I can fix it.”

Here it comes I thought, he is about to tell me how upset he is about this teacher. Oh I was getting worked up.

“Mama, I am worried that when I get elected president of the United States, they won’t let you live in the White House with me.”

Cue the confused look on my face, followed by complete understanding of the awesomeness that is my son:

“Oh baby, I promise that when you are elected president you can make them let me live in the White House. I promise.”

When Benjamin rolls into a room, eyes turn. When he speaks with the spiritual gift of encouragement, people listen.  He was part of teen government when he was 15 and actually did run for president. Waiting outside the convention doors, I heard the roar of excitement and the thunderous applause but had no idea it was for my son. Benjamin had won his party’s primary for president!  I had to smile as I remembered the first grader and his worries. His dreams were never broken.

Mason was five when he required a major spinal surgery. The recovery required him to use a wheelchair for awhile and then a little walker before he was strong enough to use his power sticks again.

When the first week of school, the teacher had them draw self-portraits, I was anxious to know how my little Mason viewed himself? So driving home that day, I asked him, did you draw your picture with power sticks. He said no. I asked, a bit sadly, if he had drawn himself with his walker, he said no. I paused, worried that he had begun to identify himself in a wheelchair. He sensed my pause and jumped right in, “Mom, I drew myself without anything – just like I will walk in heaven!!”

Mason’s dreams aren’t broken. Mason understands courage and how to depend on God for the strength to conquer the hard stuff and see himself exactly as God sees him. Believe me, when Mason lays aside his crutches to encourage a child, to shepherd someone younger, people take notice.

For the last four years, my almost 18-year-olds have been asked to address education students at Arizona State University. Every single time – more than eight semesters now – someone has followed them out of the classroom to enquire about their faith. It is evident in their lives. They are not broken. Their legs don’t work like mine or most of yours, but these boys are far from broken. God is evident in their lives.

Their triplet sister, Claire is passionate about ministering to the marginalized, the hurting, the special needs community as a whole. She plans to be an occupational therapist and work with special needs orphans around the world. Because, dear ones, she isn’t broken either. God’s plan for her was to be passionate about special needs. God’s plan.

Can I share that when the triplets were eight years old, God did this really cool thing? Barely six months had gone by since I had been brought to my knees in my broken place, when I realized I was experiencing some symptoms that caused me to grab a calendar. Are you tracking with me? I counted weeks. And recounted weeks. And finally dropped the kids off at school before rushing to the pharmacy for a pregnancy test….a pregnancy test that turned positive immediately!

My Cate is nine years old today. When she was four, someone asked her her name, and she smiled and said, “I’m Cate. I’m a gift.”  I may have told her that once or twice, do you think?

She has been a light in our dark days. When surgeries loom – and they often do – and grief raises its ugly head, she has brought a balance of silly, and fun and love. She was three the first time someone said something negative about her brothers where she could hear, I caught her just as she pulled back her fist to punch the little boy in the mouth.

Now while I don’t condone violence, I had to smile that she was innately ready to protect her brothers. She is – as she so aptly put it – a gift.

Oh readers, this was not the way I thought my life would look. This was not the cry of my heart when I begged God to work a miracle in my boys. No, this was not my plan. Oh no, because HIS PLAN is far more beautiful than anything I could have ever imagined.

In two months, my triplets will graduate from high school. I am so excited for the opportunities that lie in front of them. And am thrilled that God has me on the front lines of their cheering section. 

As part of their graduation ceremony, they were each allowed a verse to share, they have given me permission to share those with you today. I think it is a fitting way to close:

Claire asked to share Psalm 36:7: “How precious is your steadfast love, O God! The children of mankind take refuge in the shadow of your wings.”

Benjamin chose John 9:3: “And his disciples asked him, ‘Rabbi, who sinned, this man or his parents,  that he was born blind.’ Jesus answered, ‘It was not that this man sinned, or his parents, but that the works of God might be displayed in him.’"

And finally, Mason asked to share Joshua 1:9, his life verse: “Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”

And now, you know our story -- at least a small part -- and I am sure you understand why days spent counting my blessings are far far more important than days spent counting our sorrows.

Thank you, God, for trusting me with these.

And thank you dear ones, for joining us on the journey.

Carol - The Blessings Counter

Wednesday, February 25, 2015

The Courage to be Broken (Part 2)

Today, I am continuing our story as told to a wonderful group of Mothers of Preschoolers last week (MOPS). You can read part one of our story here.  Will you join me as I remember?

At nine months, only one of my three could sit up. By 12 months, only one could crawl. By 15 months, only one could walk – my daughter. By two years, the doctors had diagnosed both boys with Cerebral Palsy.

I have to tell you that I had days where my faith was as strong as always. Days where I imagined the testimony we would have when my boys caught up to their sister developmentally. Oh, I knew it would happen.

But doubt was creeping in, my faith was taking a beating, and I had days where being courageous was not even a goal.

I knew we had reached a turning point in our life. Immediately statistics were hurled at us. Statistics regarding whether or not they would walk, talk, be able to feed themselves. Statistics about their life-span, the effect the diagnosis would have on our marriage. Horrible scary, no-room-for-courage statistics.

My best girlfriend was supporting me long-distance. She called after discussing the prayer request with her pastor because he told her I “must be incredibly strong for God to give me two special children.”

I wanted to hug her for trying to encourage me and yet, I was relieved she lived so far away. Relieved because the distance meant she could not see my weakness – could not see how absolutely wrong her pastor was, because I did not feel strong at all. And I certainly did not feel incredibly strong.

I would gain victory for a time. I mean look at these adorable children! My days were filled with the sweetest smiles, the cutest little heads that popped up when I walked into the room and very little time to think of anything else – or even shower. 

Denial is a strong force and I camped out there for a while. Doctors said that if the boys could sit independently for a minute by the time they were two years old, they would walk. I worked every single day to “teach” them to sit independently. I would get Benjamin in just the right position and count as fast as I could, “One, two, three, four, five ,six….” And then try to convince Wade and myself that Benjamin had succeeded.

The preschool years were filled with micro-analyzing every single movement, every single struggle. By three, we were facing what we knew to be long-term disabilities. I kept trying to paint a rosey picture. I kept waiting for a miracle.

But these days were hard. And if I can be honest with you, sitting in a room room with preschool moms would have been a struggle. I tried play groups and Moms’ clubs, but Mamas ticking off the developmental milestones broke my heart. And expectant Mommies exclaiming that they didn’t care if it was a boy or a girl as long as it was healthy….well, I wanted to cry what, what happens if he isn’t healthy? But of course, I didn’t. I just avoided those situations as much as possible. Let me assure you, that is a terribly lonely place to be.

I didn’t want my friends to walk on eggshells, but I kind of needed my friends to walk on eggshells. I didn’t want them to have to think about every little thing they said – but can I tell you that as Mamas, sometimes we DO need to think about what we are saying? I have thought about this long and hard. I wanted to celebrate the milestones my friends’ children were reaching – but some days that was not possible. Can we lay down the right to compare and instead pick up the ability to share? If as friends you are living in relationship with each other, then you are going to be more aware of your comments, and a young Mama like me, is going to be free to say, “This hurts today. I love you, but this hurts.” If you are not in a relationship, then you have no business over-sharing the developmental milestones of your children. You have no idea what the mom sitting next to you might be going through.

And, can we just decide to never again say things like “I don’t care if it is a boy or a girl, as long as the baby is healthy?” That isn’t true. You will not love this child ANY less if he or she is NOT born healthy. Let’s just throw that cliché out the window. Can we? (Stepping off soap-box....)

Mason had been using a little walker to walk since he was 18 months old. He was eager to move and groove. Benjamin was quite content to sit in my lap and love and be loved but around three he started using a little walker as well.

I wouldn’t even allow the physical therapist to use the word “wheelchair” in his presence. I hated the “w” word. For me it represented all kinds of limitations, all kinds of restrictions. And frankly, it screamed that this was not a disability they would outgrow. I couldn’t bear it.  

When the triplets turned four, Mason had progressed from his little walker to the small cuff-crutches – we called them power sticks. He was fairly independent with those and so a wheelchair was not something anyone really wanted to discuss for him.

Benjamin was still using his little walker – and when I say “using” what I really mean is that I would set it down, put him in it and tell him to go. Fifteen minutes later, an exhausted little boy would arrive in his preschool class needing a nap.

It was about this time that he was at physical therapy and his therapist was working on getting him from the stroller to the walker. She had prompted and encouraged and finally he had slid his little self out of the stroller and into the walker, but he was in it backwards. She asked him what he thought he should do, to which Benjamin immediately replied,

“I guess I should do the Hokey-Pokey and turn myself around!”

My son was smart, kind and clever and I was forcing him to enter every room, every event too exhausted to shine because I was hung up on him "walking". I knew it was time to talk about wheelchairs.

When we went to try one out, my sweet boy – always intuitive – looked up at me and said, “But Mommy, I walk. I don’t need that.”

I wanted to scoop him up and leave but before I could he noticed the joystick and a smile lit his face like I had never seen before. He wanted to try one! The moment he realized he could move around his own space AND talk at the same time, he smiled even bigger than he had when he saw the joystick.

He went to time out for the first time in his life a couple of days later. We were in the hospital heading to physical therapy when he disappeared. We had an all out search. The little stinker was going into patient’s rooms to cheer them up. My little trouble-maker was five years old.

The triplets were the light of our lives. But Wade and I were wrestling with grief. Or at least he was wrestling with it. I was running from it. He could name it and call it what it was. I refused to grieve over my amazing children. I wanted to punch him every time he used the word. I wanted him to join me in my cup being half full. He was smart enough to recognize our cup was overflowing but that we also needed to meet the heartache head on.

When my sweet friend announced her pregnancy at Bible Study, I wanted to flee the room. I felt horribly guilty that I was struggling to celebrate her. “You are grieving,” my husband said.

When another friend’s husband bought their unborn son a baseball glove I burst into tears and had to duck into a bathroom. “Grief,” Wade said.

When I would take the long way home rather than drive by the little league field because it made me cry, I realized maybe, just maybe he was right.

But grief is about loss, I cried. I haven’t lost anything. I have been given something beautiful. And my guy held me, let me cry and  taught me we had lost a dream of what our boys’ lives would look like. That didn’t mean we didn’t adore them. That didn’t mean they weren’t amazing. And it didn’t mean God didn’t have a plan for them. But we needed to recognize the loss.

I will continue later....

Carol - The Blessings Counter

Tuesday, February 24, 2015

The Courage to be Broken (Part 1)

Last week I had the honor of speaking to a couple hundred young moms at Scottsdale Bible Church's MOPS program. I felt at once blessed to a be a part of the group and heartbroken that my babies no longer qualify me for such a group. Perhaps I should start a MOCKS group next year -- you know, Mothers of College Kids! What do you think?

As my family let me practice my talk, they felt strongly I should share it here -- for the one or two of you who may not know our whole story. I have shared so much of this over the years, but in case you missed it, or in case you want more glorious details....I will, over the next few days, share our story from the beginning.

My dear friend and mentor, Tracy, had asked me to speak on the subject of having "The Courage to be Broken." I can assure you that I have not felt courageous in this journey. But oh dear ones, I have felt broken. Let me share our story:

Wade and I married immediately after college graduation. He was the smartest, most amazing man I knew and I was confident in the future I was planning for us – the future I was certain God intended for us to have.

When my aerospace engineer decided after four years at NASA that he wanted to go to Medical School,  I was not sure about being married to a doctor – I need more face time than that – but I was sure about believing in my man, and so to medical school we went.

We decided to start our family half-way through. We had after all, been married a few years. My plan was that – and oh, dear ones, hear the MY in that statement – MY plan was that we would have our first child in medical school, our second in residency and then I would work to convince Wade we needed one more as soon as his training was over (we were in a bit of a stand still about whether we would have two or three children!).

God’s plan was completely different for us however – and our disagreement over the number of children we would have was soon a moot point when our doctor held up three fingers and shockingly told us we were expecting triplets.

My husband didn’t speak for 24 hours. I mean he said a few things in response to direct questions but he didn’t really TALK for 24 hours. Then, over Thanksgiving dinner, he looked up from staring at his plate and muttered: “They won’t all fit in my car.” I died out laughing.

For me the next few weeks were filled with wondering if they would be boys or girls? Should I always dress them alike; should their names rhyme? And while I had fears – my fears looked like “how will I give them all the attention they deserve,” “what will I do if one is crying to eat while I am feeding one of the other two.”

Not so for my husband. He was far enough along in his medical training to know some really scary information about multiple births. He knew how hard the pregnancy would be on my body. He knew that the babies themselves were facing a myriad of problems. He knew way way too much.

But I was certain that God was in control. And can I confess to you that I was almost arrogant in my faith? I believed that God would take care of me and take care of my babies because I prayed it to be.

I received a packet of literature from a Triplet Connection group with frightening statistics, scary photos of babies born too early and an entire article on what pre-term labor felt like. (Unbeknownst to me, Wade had pored over the material before I came home from work that day, so that the information I was reading was not even the most scary. He had hidden one whole packet because he thought it was too much.)

I remember the confidence I felt that this would NOT happen to us. I was strong and courageous – there is the courage -- in light of this pregnancy because it is easy to be courageous when you believe beyond a doubt that bad things won’t happen to you. It is easy to be courageous when you are arrogant in what faith looks like.

I was sitting in a board meeting at 19 weeks when I felt my first contraction. My doctor had told me repeatedly that there would be no false contractions in this pregnancy, that I was to take every single one seriously. I simply stood up and walked out of my meeting. After calling my doctor, I drove from my office on the north side of Chicago home to our apartment in Hyde Park to get horizontal immediately as per his orders. I remember the fear like yesterday. It was the first time I began to doubt that this would go according to my plan.

I was admitted to the hospital later that evening. I was contracting constantly and as I waited for my doctor to come in, a young resident examined me. He didn’t even bother checking the babies’ heartbeats. “They are not viable yet” he snapped at me when I inquired why he wasn’t checking on them.

My courage began to slip.

After a week in the hospital, my doctor released me to home bed rest, only to readmit me six days later. I was 21 weeks pregnant, 100 percent effaced and 3 cm dilated. My courage was at an all-time low when the doctor would not allow me to sit up on his exam table, but rather wheeled a hospital bed into the exam room and transferred me to it. I would not stand again for 8 weeks.

The night we hit the 28 week mark, I felt what I believed to be a gush of water – I couldn’t see beyond my belly but I was certain my water had broken. I hit the nurse call button and dialed my husband (Who was at our apartment down the road because we were dorm parents to 80 undergrads and one of us had to sleep in the building every night.). By the time Wade arrived, the nurses, doctors and residents were gathered and scaring me to death with their pale faces. My water had not broken. I was hemorrhaging. Everyone expected the babies to be born as soon as possible.

But our attending physician felt differently. She wanted to try one more time to stop the labor. When the contractions slowed, the bleeding slowed. She wanted to wait and see how long we could buy. Four days. I made it four more days before I began to hemorrhage again. This time they prepped me for delivery.

I was 28 4/7 weeks pregnant. The operating room was filled with medical personnel. There were doctors, fellows and nurses for me; there was an attending physician, a resident, a fellow and a nurse for each baby (That was 12 people right there!) and there was my wonderful husband. I was scared to death. I was fearful for my babies. I was not talking – which scared my husband more than anything. And I did not feel courageous in the least.

Benjamin Wade, Mason Joshua and Claire Elisabeth were born just after noon on April 18, 1997. Roughly a minute apart. Benjamin likes to tell people that that first minute when he was an only child are some of his fondest memories.

Benjamin weighed 2 lb 15 oz and he was our big boy! Mason was a tiny 2 lb 4 oz and sweet Claire was right in the middle at 2 lb 9 oz. But my tiny crew each gave a little cry to let me know they were breathing before their respective medical teams whisked them away to the Neonatal Intensive Care Unit. It was 24 hours before I would get to see them with my own eyes.

The NICU days are at once some of my most vivid memories and a complete blur. I was weak, couldn’t stand on my own for weeks, and was completely terrified of all the wires, noises, and medicines my trio required.

Two months later, when we had all three babies at home, I was certain the hard part was over.  I was wrong.

I'll continue our story later this week.

Carol - The Blessings Counter