Firsts

When parents await their first child, they are bombarded by advice, counsel and stories about “firsts”. First cry. First smile.  First rolling over. First tooth. FirsScan0048t crawl. First steps. First word. First full night of sleep.  These are described as rights of passage, and worn with badges of honor.  For Ted and me, our first child’s firsts were remarkably different.

When you have a child who lives with disabilities, firsts still happen, but differently.  Dot wasn’t able to roll over by herself until she was nearly 3, and after months of physical therapy.  Her first relatively clear word came at about the same age.  It was “daddy”.  Other firsts, such as steps, came with the help of gait trainers, or someone holding her up.  And they were just as magical.

Unique firsts were watching her learn how to grab objects.  For nearly a year we had to place things in her hands and wait as she struggled to wrap her chubby little hands around it.  And the object had to be a certain size.  And gaining head control was a constant learning experience.  At times she could manage it pretty well, but as she grew, she had to learn how to renegotiate control from time to time.

She never could sit up by herself.  When she was little, we could place her legs in a criss-cross position, and she would have some control.  But again, as she grew, she lost the ability to hold herself up without help.

NiceArmDotAnd that was okay.  Our “firsts” with Dot were exciting, and we wore those badges as proudly as other parents. We were okay that our timeline, and her ability, were different.  When she first learned to drive a battery operated chair by herself at age 8, we were over the moon.  She never did learn to have perfect control, and had to have someone with her when she drove, but to see her have such relative independence was a dream come true.

Now, we are facing a whole new set of firsts. Hard firsts. Emotionally difficult firsts.  The first hard “first” was celebrating a birthday without her.  She loved birthdays.  My mom’s birthday came shortly after Dot’s passing.  It was deeply hard.  Then Dot’s 25th birthday came.  She had started talking about it in January.  We knew by my birthday in April that we would take her to her favorite place for birthdays: The Seattle Space Needle.  She talked about going there nearly every time we saw her from then on.  So when that first of her birthdays without her came, we decided to do what she had planned for us to do, and we went to the Space Needle.  It seemed only right.

Then we had our first holiday without her, Halloween.  She loved Halloween, especially the dressing up part.  At first she liked dressing up like Disney characters like CindJojoDoterella, Minnie Mouse, and her favorite, Snow White.  At some point she landed on Jojo the Clown, and that would be her costume for the remainder of her Halloweens.

Then came the first Thanksgiving.  As much as she loved birthdays, Dot loved family gatherings.  It was hard to even think about not having her with us.  We had it at my parents’ house, and a chair and place setting for her.  God how I missed hearing her giggles when either her dad or “Brampa” would tell stories.  And when we go to the part when everyone shared what they were most thankful for, how I missed hearing her say her annual answer, “my famwy”.  We all said it for her.

That first Christmas was excruciating.  We didn’t do much, knowing that it would be hard.  It was much harder than I could have imagined. It just seemed so empty and sad.  She loved getting up and opening presents.  We had just a few gifts this year, and opened them in relative quiet. She loved eating her traditional cinnamon roll, fresh out of the oven.  And she always asked for more.  This year, we made rolls, but hardly touched them.  Our traditional dinner, which we usually ate in our jammies, was not the same, and we couldn’t stay in our jammies.  It didn’t feel right.

The first New Years Eve was uneventful. I no longer cared about having a better year.  Any year without her 470898_4648606100916_269717098_owould never be better. So we didn’t do much.

Then came Emma’s birthday.  Emma had never had a birthday without her big sister.  We made plans for the weekend that included a fashion show, make over, and seeing Disney’s live-action remake of “Beauty and the Beast”.  When the first teaser trailers appeared a year earlier, I shared them with Dot, and told her we’d take her sister for her birthday.  She got so excited.

I purchased three tickets for a 3D version at an Imax theater weeks before, but told Ted that we would not pressure him into going.  His connection with Dot and that movie was so personal.  She loved the soundtrack, and would insist on dancing with her dad to the theme song.  He almost always obliged. When the day arrived for us to see the movie, Ted dropped Em and me off at the theater, then picked us up afterwards.  He felt no pressure to go, and did not want to disrupt Emma’s day with his emotions.  She was so understanding, and just enjoyed having him meet us after the movie.

And now we are experiencing my first birthday without Dot in 25 years.  Because birthdays were so special to her, especially my birthday, we enjoyed letting her in on the planning.  With the help of my parents, last year she made plans on taking me to a pancake restaurant for my birthday.  When we picked her up, she was so excited.  Now, she’d been having more seizures when she became over excited, so we tried our best to keep things calm.  We managed to get to the restaurant without incident. But less than an hour into the breakfast, she had a seizure.  We loaded her into the car, and took her back to her house.  We stayed with her for a while.  She was upset that my birthday didn’t go according to her plan.  We reassured her that there would be plenty more birthdays for her to plan.Scan0030

So here we are, and I’m a wreck.  Yesterday Emma, Ted and I spent a quiet Easter together.  We visited Dot’s marker and left her an Easter basket of flowers.  My parents left a basket the day before.  It wasn’t where we thought we’d spend the day with her.

We did have a small family dinner at my parents’ house with my sister and brother-in-law.  It was part Easter, and part birthday.  I enjoy my family, but I couldn’t shake the feeling that something was missing: a huge part of what made these gatherings so much fun, and worth the effort.  I appreciate my family and how much they are trying to help us all learn to adjust to a new normal.  But my heart is still shattered, and days like this are not what they used to be.  It will never feel normal.

For my birthday, I took the day off from work.  I knew ahead of time that this day would be hard.  It’s Easter Monday, so I decided to do something that represented lifeIMG_9519. I purchased some new pots, soil, compost and plants for our deck.  I spent the afternoon planting, putting my hands in the soil, carefully arranging the plants, feeding and watering them.  I remembered the times Dot helped me work in our garden.  Remembered the life she brought to our lives. Remembered that she overcame death as an infant. Remembering that, though she is gone from us now, we have the promise, in the resurrected Christ, that we will see her again. Hallelujah, what a Savior.

 

 

 

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A Bit More Time: The “Final” Chapter

We planned Dorothie’s memorial service for later in the summer.  It gave us time to contact family, and for our friend, and former priest, to officiate. It really is a surreal experience to be sitting down, with family, planning a memorial service for your child.  I had helped plan services for other family, from grandparents to my in-laws.  But having to plan a service to “remember” your child is a pain like no other. It is unnatural and cruel. And Dot had been such a huge part of our lives for a quarter of a century.

We knew we wanted to have her service at the same church that had been so loving and accepting of her.  She was 6 years old when we first visited our church.  Ted was considering083 taking the job as the church’s director of music.  The interview team wanted us, as a family, to stop by unannounced, to check things out.  From the moment we walked through the doors we were welcomed, loved, and accepted.  Perhaps most of them knew who we were.  It is a small and close-knit congregation, so news travels quickly.  The team interviewing my husband knew about our “special” family.

Our journey to this particular church actually began six years before when Dot was first born, and spent the first two weeks of her life in the neonatal intensive care unit.  Several times during her stay, a priest stopped by to pray over her incubator.  Ted had met him on his way to the funeral home to take care of Sarah’s remains, as the church was on the same street.  Ted felt the need to ask about what to do for our Sarah.  It seemed logical that a church, especially an Episcopalian church, would have the answer.  Ted had been raised an Episcopalian, so he felt comfortable enough in his grief to walk into the office, unannounced, to seek guidance.

The priest invited Ted into his office and explained the options, then prayed with him.  Ted had no idea just how poignant that moment was to our future.

Five years later I found out I was pregnant with our second child.  I was working at a bank, and had every intention of returning after the birth.  When the time finally came, I tried my best, but in less than three months I knew I couldn’t be away from our baby.  Ted agreed, and started looking for a second job.  A choir position at a Lutheran church opened up, and he took it.  It was a long drive twice a week, and the pay wasn’t great, but Ted made the most of it.  The girls and I tried to join him, but there were no programs for children and young families, and Dot, in her manual chair, had to be carried up to the choir loft.  It made it hard to get involved.

When the organist decided to move back to England, we took him out to lunch.  He talked about how much he’d miss us, and we let him know that he would certainly be missed.  He asked if Ted intended on staying at the church, and Ted remarked that he’d stay as long as they paid him.  Then I chimed in, “I just wish there was more for families.  I want our kids to grow up in church where they are treasured and loved, not ignored and unimportant.  I wish there was an opening at the church you visited about Sarah.  I hear great things about all of the programs they have for children and families.”  We all agreed that the best part was that it would also be a lot closer to our home.

God certainly has a way of opening doors and answering prayers.  In less than a week friends of ours told us that there was a music director position open at that Episcopal church.  We were floored.  How could that be?  We were just saying…

So, after a few weeks of interviews, and visits to the church, TedChoir was hired as the music director, and continued in the position for 16 years.  Both of our girls were baptized there. Both girls sang in the children’s choir and attended Sunday school.  I worked at the preschool, then became the director of family ministries for 8 years.  And we developed amazingly strong relationships and friendships with the community.  Dot was loved well, and accepted so beautifully.  She loved going to church there, and would sometimes drive her chair right up front during the sermon, and no one would bat an eyelash.  Unconditional love. It made a huge difference in our lives as a family. Several times, when Ted and I were out of the country for either vacation or a mission trip or his job, our congregation, along with my family, would care for both girls, or just Dot.  In fact, two congregates organized the care schedule for us.  It gave us such piece of mind to know that we could depend on them.  That is how much this community cared about our little family.

So we knew that her celebration of life had to be at one of her favorite places with some of her favorite people. We spent time with our former priest, working on the different elements of the celebration, and talking about Dot.  He teared up talking about his favorite memories, and about how special it was that they shared a birth date.  Because he was officiating at several other functions during the summer, we scheduled Dot’s celebration a month away, in mid-August.  That would allow family and friends enough time to make arSt John'srangements.

The weeks prior to the service seemed so long and sad.  Our youngest had returned to her job as camp counselor, and my husband and I tried to take our boat out on small trips.  Dot had loved the boat, mostly because she knew her dad loved it, so there were so many happy memories of her all around us, and it took its toll.  I had a hard time finding joy in it.  And my husband sensed my lack of joy.

I just wanted to sit in my condo and cry.  Knowing that this amazing child who had brought so much to our family was now gone from us was unbearable.  Even though we’d become used to her living a part from us, the idea that she wouldn’t be calling us 20 times a day, or welcoming us for a visit, or meeting us at the grocery store, or coming with us to family birthdays and holidays seemed unimaginable.  To say losing a child causes a hole in your heart is an understatement.  I really just wanted to sit, and remember, and cry.

One project that helped me deal with my grief was creating Dot’s memorial video.  I love creating videos, something I started to do when I worked at the church.  I dove into the project and had our old reels of 8mm film and video tapes of Dot converted to discs.  I gathered old pictures of her, scanned them, then had them stored on my laptop. I listened to my extensive iTunes collection for the perfect songs.  Then I started to put it all together.  It was hard not to cry seeing her come to life in the pictures and videos.  There were so many things we’d done as a family with her that I had forgotten.  Now I watched them and, through tears, absorbed every minute. It was good seeing and hearing her again.  But it also reminded me of just how much we had lost.  She was CuteDot (2)such a blessing to our family.

Then the day of the service finally arrived.  My husband, youngest daughter and I had spent the previous day fighting.  I actually left the condo and stayed with my parents over night.  I just couldn’t handle any more, especially knowing that I needed to be strong for our family and friends as they came together to grieve the loss of Dot.  I know the largest reason for our anger with one another was our grief, but I was unable to be rational in handling it.  I don’t even remember what the fight was about, and it really didn’t matter.  I just needed to get through the day without completely falling apart again.  The only way that would happen was to have my family by my side.  Somehow we were able to put our anger with each other aside for Dot.

The church was packed.  We knew a lot of people were not going to be able to attend, so we thought there would be around 50, or maybe 75 people. It was standing room only.  And the summer afternoon was hot and muggy.  It didn’t help that the church had no air conditioning.  And yet, these people from the various aspects and years in Dot’s life stayed for the entire 70 minute service.  We had several speakers share their memories about Dot.  They all contained funny stories about her, and these clearly showed that it was her sense of humor and stubborness that defined her.  Thank God for her sense of humor, and her amazing laugh.  I can still hear her snort to this day.

Our friends, who had accommodated Dot in their small mountain cabin several times, provided most of the music.  They performed her two favorite songs “Beauty and the Beast” and “Over the Rainbow”.   A high school friend of mine also sang.  It was a song that spoke of God’s love for us, from the beginning of our lives until the end.  It was simple, and powerful.  Dear friends, who had been so much a part of our church and family life, read scripture. I am so grateful that they were there for her, and us.  My brother in law read letters family members had written to Dot. Somehow he remained strong, and accentuated the humor she was known for. And the priest gave one of the best sermons I can remember.  He spoke honestly of his journey with Dot, from the incubator in the NICU, to praying over her lifeless body at the house.  And he didn’t even try to hide his emotions.  He loved her deeply, and it showed.

The original plan was to have a reception after the service where others could tell their Dot stories.  But the line of people wanting to give us their condolences took over an hour.  We had our coworkers there, some who knew Dot, some who did not.  We had former teachers and para-educators and therapists, some whom we’d never met before.  We had families and friends that had walked the journey with us through our children’s school years.  We had current and former neighbors.  We had camping friends and high school friends.  We had the three other residents of Dot’s adult family home. And we had family.  My loving, supportive and compassionate family, some who’d flown in just to say goodbye, and support us. It was incredible to feel such love and support.  And it reminded us of just how wide a swath Dottie had carved during her time on earth.

On what would have been her 25th birthday, and one month after her celebration, we IMG_7054held another, private service as we interred her and Sarah’s remains in the cemetery across from our condo.  It was a beautiful day, and our priest again directed the short service.  We lit candles for her. Talked about her. Missed her.  Then, before we left for a dinner at her favorite restaurant, we released a purple balloon with white dots.  She loved the color purple, and she was the one who chose the name Dot.  My parents watched the balloon as it drifted into the blue sky.  Then, they both noticed a white bird fly close to, then follow it. They asked each other if what they were seeing was real.  When they looked again both the balloon and the bird were gone.

And now, in the nine months since her passing, the world continues to move on.  And yet, our grief remains.  It doesn’t get easier.  It never subsides.  It reminds you, daily, just how much you have lost.  But, because of my faith, I have found joy in the darkest of moments.  God has been good to us in spite of all the challenges we’ve faced during Dot’s life, and death.  The blessings far out weigh the sadness.  So I lean into them, embrace them, breath them in, then continue to take as many steps forward as I can.  I will never not speak of Dot.  I will talk about her every day, even if it is just to myself.  I will cherish the moments, good or bad, that defined her life.  And I will cherish the small, incidental moments.  It is the creation of those moments that I miss the most. We will celebrate our birthdays, which she dearly loved, missing her.  We will celebrate holidays, which she also loved, missing her.  We will watch our youngest graduate from college, get a teaching job, marry and have children missing her. In everything we do, we will miss her.

And my grief journey continues.  But I find comfort in knowing that one day I will have a bit more time with her.  And that will be a wonderful day.

Yet I Will Praise You Lord

Music has always been such an important part of my life.  My parents, both very musical, had a lot to do with my love of music.  My dad, a trumpet player from elementary through high school, loves soundtracks and Sousa.  My mom, a choir member, loves pop and adult contemporary music.  So we had a lot of different types of music playing in our home, and cars, all the time.

Music ignites my soul when I’m sad, happy or indifferent. And it isn’t only the melody.  I always listen to the words before deciding whether I like a song or not.  I want to identify with what I’m listening to, so if the melody grabs my attention, I really listen to the lyrics.

At one time, several years ago, I led our church’s worship team.  I subscribed to a Worship Magazine that also had a service where they would send me a CD of new worship music every quarter.  In the spring of 2001, nearly a year after our church had experienced a major fire that temporarily displaced the congregation, I received one of the CDs.  On it was a song that grabbed my attention because I could relate to the lyrics simply by our church’s experience.  But, for some reason, I didn’t introduce it to my team.

Then, 9/11 happened.  The next day my priest asked my husband and I to find a song that would fit with the all the emotions our country was feeling.  I immediately thought of the song I’d heard months before, and Ted and I shared it the following Sunday in church.  The congregation, a mixture of generations, responded with gratitude, complementing the lyrics and how they so beautifully exemplified how people were feeling.

Since then, that song is something I sing when I feel challenged, or down, or angered.  Walking a life of faith isn’t easy.  We are human, so we will confront things in our lives that will challenge that faith.  For me, that was never more profound than the day Dot died.  But my faith had been challenged, and shaken, before, to the point of walking away from it.

After becoming a Christian my senior year in high school, my faith continued to grow.  But then something happened that literally caused me to turn my back on God, the Church, and my faith.  It was after we lost Dot’s twin, then found out Dot had cerebral palsy.  I was so angry with the idea that God would let such profound grief into our lives, that I literally walked away from my faith.  I’d been a faithful servant, and was so disillusioned with the idea that a loving God would be so cruel. So I suspended my belief, stopped praying, refused to open a Bible, had no desire to go to church, and got rid of all my Christian music.  I was done with it all.

Then one day my neighbor, a Buddhist, came by for a cup of coffee.  I was working for Norstrom, and had a rare day off.  Little Dot, a year old, was having a bad day.  My neighbor knocked at the door.  I was still in my pajamas and it was well past noon.  Usually I’d ignore the knock, but for some reason went ahead and answered.  She had an empty mug, a sweet smile, and asked if I had any coffee.  She was out.

I’m so eternally grateful for opening that door and inviting her in.  We spent the next couple of hours talking, even as Dot fussed, and screamed, and fussed some more.  It didn’t seem to bother my visitor at all.  She even held Dot, and sang to her.  I was absolutely enwrapped by this woman.  She was so calm, and kind, and loving.  We talked about our families.  We talked about our neighborhood.  We talked about our pasts.  Then she asked me a question I wasn’t prepared for: “How is your spiritual life?”  Wow.  Didn’t see that one coming.

I was completely honest with her about my apathy towards the whole religious thing.  She listened as I shared how angry I was that a loving God would allow such hurtful things to happen to me and my family.  Never once did she interrupt or interject.  She just listened.  When I finished, she smiled and asked one question: “So, God caused all this to happen to you for what reason?” I was stumped for an answer.  Then she said, “Perhaps these things just happened as a random part of life, not because God made it happen to you.  I would think it is in this part of your life that God would be most helpful.  That your faith would be of utmost importance.”

Needless to say, that was the reboot of my faith.  I brought out the Bible and started reading it again.  I bought worship music and listened to the Christian radio station again.  And I told Ted that I wanted to connect with a church that we both would like.

My faith was somehow different from before.  God became more loving, and compassionate.  I no longer saw him as the instigator of the problems in my life.  Rather, I saw him as hope.  No matter how tough things got, he was there to help me through the darkness into the light.  He was the light.

So when Dot passed, I didn’t get angry with God.  I was grateful for his presence, for being the light in all the darkness.  I was grateful knowing that he had her and her twin in his loving arms, taking care of them until we were reunited.  And it brought me great peace.  It still does.  And that song I’d found years before came back to me, its lyrics reminding me that God is present, especially when we are hurting, and confused, and sad.

I’m grateful for my parents handing down the love of music.  I’m grateful for my church, allowing me to share songs that touch me profoundly. I’m grateful for my long ago neighbor who reminded me what faith should be.  And I’m most grateful for God’s love, grace and forgiveness, especially during the darkest moments of life.  Even in my brokenness, I will praise you Lord.

Yet I Will Praise You

By Andy Park

I will praise You Lord my God
Even in my brokenness
I will praise You Lord
I will praise You Lord my God
Even in my desperation
I will praise You Lord

And I can’t understand
All that You allow
I just can’t see the reason
But my life is in Your hands
And though I cannot see You
I choose to trust You

Even when my heart is torn I will praise (trust) You Lord
Even when I feel deserted I will praise (trust) You Lord
Even in my darkest valley I will praise (trust) You Lord
And when my world is shattered and it seems all hope is gone
Yet I will praise You Lord

I will trust You Lord my God
Even in my loneliness
I will trust You Lord
I will trust You Lord my God
Even when I cannot hear You
I will trust You Lord

And I will not forget
That You hung on a cross
Lord You bled and died for me
And if I have to suffer
I know that You’ve been there
And I know that You’re here now

© 1999 Mercy / Vineyard Publishing (Admin. by Vineyard Music USA)

Celebrating Emma: 20 Years of Joy

Today, I’m stepping away from our grief journey to celebrate the life of our sweet Emma Joy.  Twenty years ago today she entered the world,  a plump bundle of joy with a wisp of blonde hair and a soft cry.  She has personified joy from the moment she entered the world, a trait that has only amplified over the last two decades.

It was Easter Eve, and she was already a week past her due date.  Ted and I arrived at the hospital around 7:00a.  My parents were at our home, taking care of our other daughter and would be joining us, along with my sister, in a couple of hours.  I was more than ready to welcome our second daughter into the world, and felt a bit frustrated that she was taking her time joining us. The nursery was ready, with bright pink sponged walls, yellow stripes, and Beatrix Potter accessories.  Her name was chosen: Emma, after her paternal great-grandmother; Joy, after her maternal grandmother. And her big sister had been well informed of what it would mean to have a baby sister.  Now all we needed was the newest member of our family to join us.  Apparently she had other plans.

At 8:00a I was given the proper protocol of medications that would help induce labor, climbed into bed, then began praying that this wouldn’t take too long.  With Dot I had asked for an epidural.  This time I was hoping to go completely natural.  I loved hearing from other mom’s how empowering and beautiful it was to let labor and all its unpleasantness play out naturally.  The only thing is that when labor is induced, it compounds the pains.  And, by Noon, the pains started coming.  I tried the warm bath.  I tried the tennis ball. I tried the breathing.  But the pain became too much, so at approximately 1p I asked for the epidural. And my attending nurse was happy to oblige.

In fact, the hospital had purchased new, sophisticated and technically awesome epidural contraptions that slowly delivered the numbing medication at whatever level the patient needed, but without over doing it so you could still know when to push but be blissfully numbed in all the right places. Well, that is what they were told.  So, I laid on my side, curled up like a ball, held as still as I could, even though the pains were pretty intense, and allowed the inEmma first bathsertion of the needle, then catheter. Then I waited for the pain to subside.

True to the nurse’s description, the pain subsided quickly, yet I still could feel pressure.  She periodically checked the machine and my progress.  After about an hour my legs started to feel numb.  Now, it is a known fact that a needle inserted in the spine can cause paralysis.  So, my first thought was, oops.  She missed.  Trying not to panic I called the nurse via another little handy gadget attached to the bed and tried not to cry, or scream.  Well, at least if I screamed it would be thought of as labor pains, but I wasn’t supposed to be feeling pain, only pressure. So I chose to panic in silence.

Within seconds the nurse returned.  She had a very sweet and sunny disposition, perfect for someone like me who was about to have a panic attack.  “How are we doing?” she asked with a bright smile.  When I told her I couldn’t feel my legs she looked at me with a blank stare, and the bright smile faded. But she did her best to retain her sunny disposition.  “Well let’s take a look, shall we?” she asked, going right to the machine.  I could tell that she’d not had a lot of experience with it as she looked over the various buttons.  “Let’s just turn this off. It seems that you are sufficiently numbed up.”  And with that, the lights on the machine turned off, but my legs were still numb.

I began to feel nervous.  If I was completely numb from the waist down, how was I to know when to push?  We already have a child with disabilities.  If I can’t tell when to push, how would that affect our baby when she is ready to make her entrance, but I don’t know if I am?

Sensing my concern, the nurse checked to see how dilated I was.  “Looks like you’re getting there.  Not time to call the doctor yet, but close.”  Close.  What did that mean?  Just then I felt a huge pressure, and needed to push.  I looked at the nurse and said, “I think I need to push.”  “No, dear.  You aren’t quite ready yet.  And you shouldn’t be feeling much pressure yet.  Let’s give it a moment. The doctor is across the hall delivering another baby, and you’re not dilated enough.”  The pressure was increasing.  “Um, I really need to push.”  She laughed and said she’d check to see how the doctor was fairing with the other baby.

I looked at Ted and said, “I really need to push.”  “Why?  You’re so numbed up you can’t move your legs”.  “Ted, I REALLY need to push.”  He went to get the nurse.  She came back in with her sunny smile and checked to see how dilated I was.

“Well, looks like you are ready to push,” she said as calmly as she could with a slight panic.  Then she rushed out of the room.  “Do I push or not?” I asked Ted. By then the rest of my team had assembled, and the chatter about pushing or not began.  My family is not short on advice or opinion.

However, having your mom and your sister in the room with you helps when you are unsure about pushing.  “Just try to breath deeply, and wait for the doctor honey,” my mom counseled.  But I REALLY REALLY needed to push, so her usually reassuring advice was just annoying.  I started to feel my legs coming back to life. And pain.  Intense pain. By then the nurse, with several other nurses, rushed into the room, moved things around, and sweetly barked orders about this, that and the other thing.  Soon the epidural machine was gone, and trays and tools and other machines were put in place.

“The doctor is just finishing up next door.  So, we’re starting without him.”  And, with that, she asked Ted to hold my hand and help coach me through the pushing and stopping of the pushing as we had learned in class.  He looked a bit startled, grabbed my hand, and squeezed the living daylights out of it.  “Ted, can you not hold my hand so tightly?”  He just looked at me blankly, at first, then laughed, which helped me calm down, but now I couldn’t feel my hand.

The pushing and stopping began.  If you ever wondered what being in labor is like, try pushing a concrete wall just a few inches. Just then, my doctor came rushing in with a nurse behScan0023 (4)ind him helping with his scrubs.  He was wearing a baseball cap, with our local team’s logo on it.  He loved baseball, and had gone on a dream trip the week before to the team’s Spring training camp and was obviously still in the afterglow. I couldn’t help but picture him crouched down below me wearing a big mitt and ready to catch the baby as you would a ball.  “Where’s your mit?” I asked.  “Well, I did just come from a game.  It is still in my car, if you think I need it.” He had such a great sense of humor, which is why I loved having him as my OB/GYN.

Everything went pretty quickly, and even though my legs were still slightly numb, I managed to push with all my might, and within minutes Emma started inching her way into the world.  Ted was a great coach, and pushing was a bit easier than I thought.  I was feeling exhausted, but there is a weird adrenaline rush when giving birth.  It sounds more romantic than it is.  It really is just that moms are tired of the bloated feet, achy back and looking like a whale.  So the pushing part is just our way of saying  “You’ve overstayed your welcome and we want our body back.”

Now, my dad had been charged with the duty of cameraman, even though he was not known for his talent. If you want random shots of a foot, hand and whatever ground he is walking on, he’s your man.  He’s also good at shots of him trying to figure out how to turn the camera on.  But dad had apparently been practicing, knowing he’d been given a big task for the arrival of his newest grandchild.  And it would be the first time any of the grandkids’ births had been caught on camera.  However, no matter how cool it is to capture such a wonderful occasion, I’d given him some ground rules so that the footage could be shown to G rated audiences.  There was a definite boundary he was not to cross.  Dad forgot about the boundary. Literally the entire arrival of precious Emma is now available for the world to see.  Thanks dad. Now we can show Emma’s boyfriends way more of her birth than should be allowed.

Everything went way better, and faster, than I’d imagined. I pushed, Ted held my hand and the doctor, in his baseball cap but no mitt, sat poised ready to help Emma make her grand entrance.  And, after about 20 minutes her plump little head popped out.  I could hear Dot keep asking my mom, “Baby?”  And Ted was given me the play by play.  Now, Hollywood likes to romanticize the birthing process.  So much chaos, and the women looking professionally made up yet still sweaty and tired and in great pain.  And the husband, the first of the two of you to get a glimpse of your new child, is weeping with joy about how beautiful the whole thing is.  That is not what happened for us.  While Ted was excited to meet his daughter, he was not too excited about how much liquid accompanied her, and shared his feelings. Out loud. And as the liquid kept coming, so did his commentary.  I felt like apologizing to and taking a punch at him simultaneously.

But then it finally happened.  Emma, in all of her glory, slid out into the world.  By the time she made it up onto my tummy, she was crying, but looking a bit puzzled.  She got that inquisitive look from her dad.  She kept trying to open her eyes, I’m sure feeling confused and bewildered going from a quiet, dark space to a bright, loud and open room.

And Dot was beside herself.  The moment she heard her baby sister’s cry it all sunk in, and she was trying to claw her way over to see her.  I could hear her slightly panicky voice saying, “Baby? Baby?”  Within minutes Emma was swaddled up tightly, topped with a little hospital beanie, and handed over to her father and big sister.  So happy that my dad wisely caught this moment on video.  It is such a treasure to see Dot’s reaction and Emma’s continued bewilderment.

And so _DSC4817-Edit.jpgour family was complete. And perfect. Two beautiful girls. Adventures awaiting us from Disneyland to Jamaica. Trips in a tent trailer, motorhome and boat.  Game nights and movie nights.  Church functions and school dances.  And band. Elementary band. Junior high band. High school band, with dad as the director. Emma was the perfect exclamation point to our life, and she continues to remind us what a huge blessing she is.  We have enjoyed watching her grow into an amazing young woman, and look forward to watching her make her way in the world. Emma, happy 20th birthday.

A Bit More Time, Part 3

From entering the airport in Paris, to waiting to board the plane, less than an hour had passed. The Delta team was amazing. While sitting in the boarding area, away from the crowd, people came to us and gave us their condolences. But I still wasn’t fully accepting the reality. I still was angry with myself for blocking her calls.  Her last calls came the day before she died.  What I would give to have talked with her.  Just one more time.

They boarded us last, and led us to first class.  It was a sweet gesture, but the seats were isolated in an odd fashion, so Ted and I had a wall between us.  We still managed to hold hands when we weren’t curled up in our individual cubbies sA330_DeltaOne_smallobbing into a pillow or managing to grab a few moments of much needed sleep. It was the longest flight I’ve ever taken.  The attendants did their best to console us.  But I could tell how helpless they felt.  It truly is amazing when you witness profound sympathy from a complete stranger.  In spite of what Ted and I were dealing with, our belief that most humans are good, kind and compassionate was proven on that airplane.

Our flight took us from Paris to Minneapolis.  Or Michigan. Or Milwaukie.  I truly can’t remember. I vaguely remember exiting the airplane, being met by two Delta employees, and following them through the terminal. I also recall sitting in a lounge area somewhere in America staring at my feet while Ted made phone calls and arrangements. Delta team members were so kind and helpful in finding a place for us that was private, and quiet.  They checked on us periodically to see if we were hungry, or if there was anything we needed.  Then somehow we were seated again on a plane and heading home.  I once again stared at my feet, my mind, and heart, racing.  Why the hell did I block her calls?  Why didn’t I take a bit more time with her?  Some regrets are incalculably haunting.

We landed and went to baggage claim. One of our bags did not make it. Delta promised to deliver it to our condo the following day.  I can’t remember how we left it other than turning and heading for the exit.  We met our youngest daughter and her boyfriend outside the terminal. Seeing her gave me mixed emotions. I’d managed to call her boyfriend when we were still at the airport in Paris and had him go to her and explain, as best he good, what had happened. She was working as a counselor at a camp. It was the middle of the night when he finally got to her, having driven from several hours away. I can’t even imagine what she experienced.  Being woken in the middle of the night to discover just how horribly your life had changed. I am eternally grateful that a young man grew up in an instant and delivered news so incredibly earth shattering.

Em and I held each other tightly, sobbing and saying how sorry and shocked we were.  It felt good to hold her.  Something so familiar provided much needed comfort, even if it didn’t change the reality slowly settling upon us.  We climbed into the car and headed for home.

The ride was quiet. I can’t even remember what we talked about. I just remember staring out the window at familiar sites, but seeing absolutely nothing. So many times, on our return home from visits to Arizona, California and Florida, I’d point out landmarks and tell Dot and Em about them.  Now these landmarks seemed foreign. When we got to the condo, I just collapsed. It really wasn’t home yet. We’d only moved into it a couple of weeks before our trip. We’d sold the home where we’d raised our girls to move closer to Dot, and to downsize. Dot only visited the new place once. It was Father’s Day. We have a beautiful view of a lake, and IMG_9122she loved it. I can still see her look of awe when she saw it for the first time. In fact, as family arrived, she made sure they got a look at the view.  I loved watching her gaze out over the water, a giant smile of amazement on her face.  I couldn’t wait to have her over during the summer to sit on the deck with me and watch life go by on the lake. But now I would watch the life go by and wonder what she would think or say or feel.

The following morning, after a restless night’s sleep, we met with the funeral home director.  The funeral home was literally across the street from our condo.  When we were considering purchasing it, on our list of reasons we should buy it, along with wheelchair accessibility and a great view, we joked that it was convenient to a cemetery.  That was no longer funny.  It was reality.  And there we sat talking about something no parent should ever have to, and it was unbearable and painful and cruel.  My parents, sister and brother-in-law, who had been with Dot that horrible night, sat with us, all of us worn out from shock and grief. The details were plentiful, but hard to even think about let alone decide upon.  It just didn’t seem real, just mind numbingly disgusting.

It isn’t normal having to make plans to bury your child.  We’ve never considered our lives normal.  But even when the uncommon elements seemed overwhelming, we learned to normalize them.  This was our “normal”.  Having to drive a wheelchair van.  Finding homes that are wheelchair accessible.  Figuring out how to push a manual chair with one hand and a shopping cart with another.  Creatively parking your wheelchair van when there are no handicapped spaces available. Apologizing for a store display that had been toppled by an inattentive wheelchair driver. These became our normal, and were to be expected parts of the remainder of lives.  Now, that normal had been interrupted by something abnormal.

After making as many decisions as we were capable of, they invited us to the room where we would see our precious Dot one last time.  My heart was beating out of my chest.  My stomach turned into knots.  My throat hurt from the lump in it that hadn’t left since we heard the EMTs “call it”.  But I couldn’t wait to see her.  I ached to see her. To hold her. To smell her sweet scent and run my fingers through her beautiful hair. To tell her how very sorry I was that I wasn’t there for her.  And that I hadn’t taken her calls. That we didn’t get to spend a bit more time together.

When they opened the door, I saw that mop of brown hair and ran to her.  She was beautiful.  She had such a peaceful look on her face, a soft smile on her pouty lips, her long eyelashes sweetly closed and still.  But she wasn’t the Dot I knew. Gone was the excited giggle she gave when I entered the room.  Missing was the glee she had in showing me something she’d been working on in her “woom”.  Absent was the bright smile and shiny eyes that lit up the world.  She looked like she was sleeping. And I bent down and kissed her cheek, then hugged her.  She was stiff and cold, but I hope for the miracle that she just might wake up, pleading with God to let her rise again like Lazarus, and Jesus. That this was all just a mistake.  A misunderstanding.  But I knew this was impossible, and it was devastating.

At first it felt like it was only Dot and myself in that room.  But then I noticed my other daughte972248_542642399111173_1426756939_nr sobbing on the floor and I realized that this was hard on all of us. As if she was still alive and breathing, I told Dot that I was going to leave her for a minute so I could comfort her sister.  I went to Emma and tried to hold and comfort her.  Em just wanted to be left alone for a moment.  It hurt to see her feeling such profound grief, and it was out of my control.  I could always find ways to comfort her when she was hurting.  When friends had been mean.  When grades on tests were not what she expected.  When boys broke her heart.  When a pet passed away. But this was different, and I knew that I had to step away and let her be.  And that was excruciating.

When I turned back to Dot I saw my husband, bent over his precious child, weeping.  I felt compelled to go and comfort him.  We held each other for a long time and just let every ounce of our grief spill out.  The two of us had weathered so many storms in our marriage, and always ended up stronger.  But this storm had us battered and bruised.  To just hold each other and cry over the death of our child seemed unreal.  We held each other after a miscarriage. When we found out that Dot’s twin wouldn’t make it.  When his dad passed.  When his mom passed. We always found great comfort in one another’s arms. And, as so many other times, we held each other tightly, feeling our grief in unison. But it wasn’t comforting.  It just…was.

We finally let go of each other and, together, went to Dot for one last kiss gonickelodeon-gabba-gabba-plush-pals-foofaodbye.  I held two of her favorite stuffed animals.  One was a pink creature that, when squeezed, said, “I love you.” Or, “You’re so beautiful!”  It was given to her from two of Ted’s former students who had cared for her when Ted and I were in China 8 years before. Dot loved it, especially manipulating the voice control. The other was a dog named Krinkels that had been a Christmas gift from Santa to me when I was a child.  Dot loved it because it had belonged to me, and it was her go-to comfort when she didn’t feel well.  The dog had a little bell in one of the ears, and its sound added to my upset as I gently placed it in one of her arms.  I put the pink doll in Dot’s other arm, bent down to kiss her, then touched her face one last time.  I whispered my love to her, went to help my other daughter stand so she could go to Dot and say goodbye, then left the room empty handed, and empty hearted.

I collapsed into a chair, all of the past 36 hours  consuming my heart and my mind, and wept.  Reality had finally settled in.

 

 

 

A Bit More Time, Part 2

Our dream trip would take us first to Paris, then to England, where we would meet our fri_1040513ends to go narrow boating through the back country canals. The flight, though long, was uneventful, and we reached our destination with every piece of luggage we brought. It was late, and the mother of the man we rented the apartment from in the 16th arrondissement met us with a bright smile and disposition, even though it was really late. The Parisan flat was small, but perfect for our needs.  The week was magical, with trips to the Eiffel Tower (dinner included), Notre Dame, L’arc de Triomphe and the L’ouvre, which were better than I’d dreamed. The weather was sunny and warm. We found a favorite café down the street we visited most mornings, and a grocery store we shopped at every day. It couldn’t have been better for our first visit to the City of Lights. We kept saying that we’d wished we had a bit more time in Paris.

Our last morning, we woke early to take a train to London. As we gathered our belongings and looked back over our small appartement, we talked about returning some day, closed the door, took the small elevator to the small lobby, then marveled at how blue the sky was through the all-glass wall and doorway. Just then we noticed a young nun outside walking toward our building, her habit flailing in the wind, her steps quick but solemn. She took a sharp right before reaching our building. It was such a surreal sight, I couldn’t help but think it was some sort of sign. “I hope that isn’t a bad omen,” I blurted out as we picked up our luggage and headed out the glass doors into the bright Sunday morning sun. I looked for the nun when we got to the street, knowing she should still be in our sight. But she was no where to be found. I quietly said to myself, “It’s like she disappeared into thin air.”IMG_6045

Just down the street we found a taxi, told him our destination, helped load our luggage, and went on our way. My husband and I discussed what we needed to do once we got to the train station. Then my phone rang. It was Dot’s house supervisor. I sent her to voicemail, then texted her to text me instead of call, as calling was just too expensive. Her text simply said, “Call me NOW.”

Several months before our trip, Dot had been given a phone she could use to call five numbers, all family members.  All she had to do was push a single button for each person.  My cell phone was first, her dad’s second, sister’s third, and so forth.  She loved to call each of us, mostly one at a time.  There were times when she would abruptly end the conversation and push the next button without hanging up her call.  With the quick tones of the dialed numbers ringing in my ears I’d say, “Dot, I’m still here,” and she’d giggle. She got into the habit of calling each of us at least 10-20 times a day.

The day we landed in Paris her calls started to come almost immediately. We’d read horror stories about phone bills from Europe being 100s and even 1000s of dollars due to roaming and carrier charges.  I tried just silencing the phone, but she still kept trying to call.  So….I blocked her.  I promised myself, and my husband, that I would call her several times during our trip.   I felt tremendous guilt, but didn’t want to have a large phone bill when we got back home.  Besides, I’d ask family to pass along pictures and texts about the trip, along with a big hug and kiss. The week progressed.  As promised, I texted family, reminding them to check on Dot and let her know we loved and missed her. I checked my phone’s blocked calls log periodically, and noticed she’d tried to call several times a day.  I just deleted them, thinking I would have more time when we reached England.  More. Time. The last time she attempted to call was the day before we left Paris.  She only tried two times.  The only thing I could hear in the messages she left were voices coming from her tv.

If only I had taken a bit more time and answered just one call. Just. One. Call.

In the taxi heading to the train station,  I looked for the number of Dot’s house supervisor on my phone, and thought to myself, “What did Dot do now?” Dot hated taking showers, and would throw a fit.  She also got into arguments with one of the other residents once in a while.  And, she wasn’t a great driver in her power chair and had broken a few pieces.  I was somewhat curious about the urgent nature of this call.

The superIMG_4264visor answered on the first ring and simply said, solemnly, “Hey.” I laughed and jokingly told her what I’d been thinking. In a direct and serious tone she said, “Dot has had a couple of seizures that she is not coming out of. The paramedics are working on her, but not getting a response. You need to call the house now.”

It hadn’t dawned on me that this was a Saturday night back home, and the supervisor was not on duty.   Just seeing that she was calling on her day off should have alerted me that something was wrong.  Some how time itself had stood still during our magical stay in Paris.  I still didn’t fully realize the gravity of the situation.  My brain was growing numb. My heart started to race. But I didn’t think it was what it was…

An unfamiliar voice answered the house phone. I just remember bits and pieces.  I think I told him who I was, and he tried to relay all that was happening. The voice said, “It doesn’t look good.” “We tried to give CPR until they came.” “There is no heartbeat.” “She has been out of it for a while now, no oxygen.” My husband asked what the problem was with fear in his usually calm voice. I responded, in a sobbing voice, “They can’t bring her back.” He kept yelling “WHAT?!!  No!! Dot?!” I heard someone in the background say something about calling it, and then a different voice say, “I’m so sorry….”

We asked the cab driver to take us to the airport, and again, a lot of it is a blur. My husband called our friends who’d be waiting for us in England and left them a message.  I called my mom and broke the news through sobs: Dot was gone. We knew she’d had two seizures back to back. We knew they’d worked on her for 40 minutes. We knew my parents, my sister and my brother-in-law had to go to Dot’s house on our behalf and be with her. We knew it would be at least 10 hours before we’d be in Seattle. We were numb. We could hardly speak. We were in shock.  All I could think was, why the hell had I blocked her calls?  WHY???!!!!!

Ted made one more call.  This time it was to a dear friend of ours who used to be our priest.  He loved our girls dearly, and had baptized both of them.  He even shared his birthday with Dot. He told Ted he would go and meet my family at Dot’s house.  Then we just sat in mind numbing silence the rest of the way to the airport.

When we arrived the driver helped us with our luggage.  Cocdg-terminal-2f-ticketing-hall-8_29927.jpgmpletely in a fog, we made our way inside the terminal and tried to look for Delta.  Everything seemed so surreal.  I heard a faint sound of rushing wind in my ears, and my heart was beating out of my chest.  Somehow we found the ticket counter and managed to tell Delta what we needed. The only flight out was not for another 6 hours.  We didn’t argue.  Just stared. They showed us where to take our luggage, and continued to offer us profound, and real, sympathy.  As we picked up our luggage, the lady at the counter told us to wait for some help.  A young male attendant grabbed two of our bags and sweetly asked us to follow him.

We followed the agent, who rushed us to the front of the line.  Some young girl yelled at me that people had been waiting in a long line. I turned around, faced her, and loudly and very angrily snapped back, “Sorry.  I’m trying to get home.  My daughter just died!”  She looked stunned and shrunk back, and several other passengers gave us quick words of condolence.

The nice Delta agent told the person handling our bags that our plans had changed.  We didn’t pay attention other than to give him what ID he needed.  We just stood there, looking around, not knowing what to do, think or feel.  He once again asked us to follow him back to the ticketing counter.  He spoke in French with the lady from before, then turned to us and said, “There is a flight leaving in 40 minutes.  We have booked you on that one.  Another attendant is going to help you through security.  Hopefully it won’t take too long.  Please follow this young man.”  He pointed to another attendant who didn’t really say much.  He just looked sad for us, really.  He had us board a little cart, and off we went.

If we went through any security I honestly don’t remember it at all.  I just remember sitting on the cart watching a strange and foreign world go by, trying not to think about the horrible reality we were heading home to, and crying but not feeling. Just so mad at myself for blocSAMSUNG DIGITAL CAMERAking Dot’s calls.  Just a stupid lost chance for more time with her.

When we got to the shuttle that was to take us to the terminal the young man put his arm on my shoulder and sweetly whispered, “I have no words for your loss other than that I am so very sorry.  God bless you.” And with that he got in the cart and left.  Ted and I stood, in silence, and waited for the shuttle.  Reality was trying to settle in. And the world seemed incredibly sad.

 

 

A Bit More Time, Part 1

529493_10202549056155407_1676693927_n-It has been four years since I last attempted to create a blog.  All good intentions aside, like so many things I’ve started in my lifetime, this project was tossed on the “I’ll get to it later when I have a bit more time” shelf.

Isn’t that just like the human experience.  We allow ourselves to become so busy in our day-to-day lives, that we shelve things that we know are important and need our attention.  Usually we look back, see the dust gathering on top of these projects and tell ourselves, again, “I’ll get to it when I have a bit more time.”  Funny how we default to that way of thinking, as if we are promised more time.  And life has a way of reminding us that such thinking can be foolish.  We won’t always have that bit more time we seem to think exists.

While I only managed two posts, I’m surprised I actually completed the first one.  At that time in my life I was facing huge transitions.  My oldest daughter had graduated out of the school district’s special education program, so I needed to leave a beloved job to once again become a stay-at-home mom.  I forgot just how easy it was to lose track of time and get distracted.  I really did want to write weekly posts, but my days became more about being serious about helping my daughter transition to a more independent living situation.  And it was really hard for me to even consider giving up some of the responsibilities of caring for her, even though I knew that it would, in the long run, be better for the both of us.

Most of Dorothie’s life required my constant attention, and to some degree, supervision.  Living with a child with disabilities requires stealth like planning and organization.  I’m neither a planner nor well-organized. While I have good intentions, I get bogged down by the ideas and thoughts I have when planning. I guess you could say I start out with organized thoughts, but pesky squirrels in my brain keep distracting me.  Even when I remind myself it is time to attend to my writing, something inevitably distracts me, and I tell myself that I’ll get to it when I have a bit more time.

So, I stopped at two posts.  I hadn’t even finished the back story of why I had come to want to write a blog.  The first two posts were intended to give the reader a glimpse of our life thus far.  And that is where I stopped.  The transition didn’t go as smoothly as hoped, even though Dorothie eventually got a job and moved into a private adult family home.  It took us 6 months to find a job, which turned out to be worth the wait.  Then it took another year to find a home for her.  That “bit more time” I’d been hoping for never materialized. Or never seemed a priority to find.  And now, looking back, what I would give to have the opportunity for a bit more of that time.

The job was great for Dorothie.  It was as a storyteller and assistant at a preschool minutes from our home.  For the most part Dorothie loved her job, especially the opportunity it presented for her to work with children. And she got to use her beloved iPad, and ham it up as the story unfolded from her tablet.  In return the children enjoyed her enthusiasim and glee.  But, when she moved from our home to the adult family home, her commute grew longer, and she lost the enthusiasim.  He job coach started looking for another similar job closer to her home.  He finally found a non-paid position minutes from Dorothie, but she didn’t seem to have the same excitement as she did before.P1030667

And transitioning into the home was not easy.  She loved getting her room ready, picking out paint color and window blinds. She even helped us paint. We visited the house with her a couple of times helping her get more familiar with the other 3 residents and the various staff of caregivers and supervisors. But when it finally came time to make the permanent move, she got really upset, which really upset us.  We bravely held firm and let her know that we were not too far away, and that we would come visit her often, hoping that would appease her fears.

After only a week in the house, one of the residents she’d most bonded with had to be taken, by ambulance, to the hospital where he remained for nearly 3 weeks.  Then a second resident, whom she also bonded with, was hospitalized as well.  On top of that, the house supervisor had to go on emergency leave to care for a sick relative.  Dorothie was not happy with her new life, and we were second guessing whether it was a good move in the first place. We were ready to wave the white flag, bring her back home, and call it good.

But, the caregivers and supervisor encouraged us to give it a chance.  They told us that if we let the house get back to normal, with everyone back home, Dorothie may become more comfortable with staying there. We agreed, crossed our fingers, prayed for a miracle, and let her stay.  Within a few days she seemed to begin to embrace her new life.  She still missed us, and would cry periodically when we left after visiting.  But she seemed much happier and settled.  And we were much more willing to hand over the responsibilities of her care. Even though I still struggled with the whole idea of “independent living” I could see the benefits it afforded Dorothie.  She became more social, and spent more time out in the community shopping, taking classes, going to parties.CuteDot (2)

By the one year mark my husband and I began planning to go on a nearly three week trip to France and England.  It had been a dream of ours, and we felt, for the first time, we could finally live as the empty nesters we’d become.  A couple of days before we departed, I visited Dot to prepare her as best as I could, not completely sure she understood that it would be a longer trip than we usually took. She asked if she could come with us. I had to tell her as best as I could that we would talk to her during our trip and send pictures to her. I also reassured her that Grandma and Aunt Juju would visit her and update her on our travels. I could see a vague disappointment in her eyes before she started to tell me something about one of the residents. I hoped all would be well while we were gone, listened to her “news” and left. It would be the last time I would ever see her alive.

Paradise Redefined

When my husband and I began talking about having children two decades ago, like other young couples, we had an idea of what our kids would be like.  Most likely they would have brown or black hair, brown or hazel eyes, amazing musical abilities, and might even be athletic.  This was how we imagined them.  And this entire time never once did we envision them as having disabilities.  Instead, our children were beautiful, healthy and, well, normal.

Then reality hit.  After a rough pregnancy we were faced with a “new normal”.  Our first-born, the one we had been dreaming about, hoping and planning for, was not, in all honesty, what we’d expected.  She had ten fingers and ten toes.  She had two arms and two legs. She was absolutely beautiful.  But, she couldn’t function like other children her age.  She couldn’t roll over.  She couldn’t sit up or stand.  She couldn’t walk, run or jump. She couldn’t even talk, at first.  She depended on us for her every need.Scan0007 (2)

I wouldn’t say the roof caved in, or that the floor dropped.  But it was a shock to learn that she had disabilities.  As we listened  to our friends with children share about first steps, learning how to ride a bike, brushing their own teeth for the first time, we realized just how new and different this normal was going to be for us.  Our one saving grace was that she was our first-born, so we didn’t have much to compare this “new normal” to outside of what we’d seen with our nieces and nephews and heard from our friends.  But I struggled with the guilt of feeling let down and, honestly, a bit envious.

A few years later, as my husband and I continued adjusting to our new normal, I was introduced to an amazing analogy on being the parent of a child with disabilities- A Trip to Holland. Written by Emily Perl Kingsley, the story compares this new normal to trip to Italy that you’d been planning for a long time.  However, when the plane lands you find out your are in Holland. (http://www.our-kids.org/Archives/Holland.html)

For the first time I felt like someone knew what we were going through in our attempts to adjust to Dorothie’s challenges.  It wasn’t horrible.  It wasn’t disgusting. It was just not what we’d planned.  We found new benchmarks to be proud of, such as using her pincer grasp, sitting straighter in her wheelchair, or forming words we could understand.  These became our bragging rights.  And brag we did!  I thought I would melt the first time she said “I yah you” at age 4.  It was a defining moment for her and us as it was her first sentence.  We were so proud.

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I love our family.  I love our life together. It may not be easy.  It may not even be the ideal.  But it is who we are, and that is just perfect.  Sure, we will need to endure hours and hours of Barney the Dinosaur, The Wiggles and The Fresh Beat Band well into our 70’s.  And we will need to cut up her food, change her diapers, open doors, turn on electronics, brush her teeth, comb her hair. For us, it is normal. And it is a part of who we are as a family.

Looking back, we are nothing like we’d thought we’d be.  But in retrospect, we are what we were meant to be.  As wonderful as Italy would have been, Holland is a great place, and perfect for us.  In fact, we didn’t lose paradise.  We redefined it.

Our Journey

Life is a Journey, Not a Destination. Okay.  This is a cliché, and perhaps a tired one.  In fact, reading it myself, I envision a campy poster with a picture of a guy repelling off the side of a cliff high in the air.  You know, the type of poster your middle school English teacher had on her wall. 

Yet, cliché aside, it truly describes what our family’s life has been the past two decades. This month we are celebrating our eldest child’s 22nd birthday.

Like most couples, when we decided to have kids we talked about what our family would look and be like.  We talked about the trips we would take on the boat we would buy.  We thought about which instruments they would play in elementary school, and whether or not they would make drum major in dad’s marching band. We even talked about our grandkids, and how we would be very involved, being their daycare, driving them to preschool, attending all their concerts and games.  We saw the future replete with endless possibilities.

First Home 1989

And how excited we were to discover we were pregnant for the first time.  We took my doctor’s advice and only told a few members of our family and closest friends.  Good thing. I miscarried just weeks later.

After several months, we found out we were pregnant again.  While excited, we felt a bit cautious, so we kept the news to ourselves. 

Then we found out we were carrying twins. Our excitement rose ten fold. We went against our better judgment and told family and friends.  They too shared in our enthusiasm.

Preggers w Dot

However, just 21 weeks into our pregnancy, we were given devastating news.  One of the twins would most likely not survive the pregnancy. A painful amniocentesis confirmed our fears. 

At 26 weeks I awoke in the middle of the night and knew that one of the twins, whom we named Sarah Ruth, had passed.  I broke into hysterical sobs, and reached for a startled Ted.  A trip to the ER confirmed it.  And, my body started going into labor.  I was put on medications to stop the labor, then placed on bed rest.  To allow Dorothie Ann the best possible chance for survival I would have to carry Sarah’s body as long as I could before it became toxic.

After weekly blood tests, at 35 weeks our obstetrician and perinatologist both felt it was time to induce labor.  Dorothie Ann and Sarah Ruth were born in the late afternoon on September 25, 1991.  Dorothie’s Apgar score wasn’t great, but was “normal” for a preemie.  However, she wasn’t breathing well.  After a few minutes of holding her, she was whisked away to the Neonatal Intensive Care Unit where she would stay for two weeks.

NICU Evergreen 91

Then Sarah was born.  We were blessed to have my parents, mother-in-law and sister with us in the room.  Each of us were able to hold our precious child for a few moments to say our hellos and goodbyes.  She was beautiful, and her face so similar to Dorothie’s.  I thanked her for the gift of life she gave her family.  I still tell her that every 25th of September.  

By 8 months it was obvious Dorothie wasn’t developing normally.  Sure, she was a preemie, but in my gut I knew something wasn’t right.  We went to a clinic that specialized in diagnosing disabilities.  We were told Dorothie had cerebral palsy.  She would not progress physically as other children her age, and could be confined to a wheelchair.  We were also told she may also have cognitive issues, but was still too young to fully assess.  Again, we were devastated. 

Arizona

At 18 months we discovered Dorothie had a seizure disorder.  Thus, we began a relationship with anti-seizure medication.  It has not always been an easy road itself.

By the time Dorothie reached elementary it was more than apparent that she was both physically and developmentally impaired.  What lay ahead for her was uncertain.  Could she be mainstreamed, or should we keep her in a contained learning environment?  Would she be able to speak her mind, or would she be relegated to pointing to pictures on a board? Would she ever be independent enough to have a career?  Would she fall in love, get married? And would she be capable of having children and raise them on her own?

Through the years we have adjusted to Dorothie’s needs.  In 1997 we welcomed our second child, a beautiful, “normal” daughter who has grown up into an amazing young woman, and has assumed the “older sister” position in the family.Dad's girls

We decided that rather than boating, “‘rv’ing” might be the better way to travel.  We went from a tent trailer, to a cross between a tent and travel trailer, then a motorhome.  We have camped our way to Disneyland twice.

We also have learned to take Dorothie on airplanes.  It isn’t as easy now that she is bigger, but most airlines are accommodating, especially when they change our seating without notifying us. We’ve learned to check in the night before to make sure things are set. Most times we are okay. Security is the worst part, especially when they ask Dorothie to get out of her chair.  When I explain she can’t, they seem a bit irritated.  I tell myself they are simply doing their job. 

And we’ve learned , as a family, to adjust as necessary.  We allow our youngest some freedom from being the sister of someone with special needs.  Rarely is this necessary, but a week or two on occasion seems to help her.  And she is amazing with Dorothie when we need her to be the caregiver.

Emma VB

This past fall Dorothie graduated from the special needs program in our school district.  It forced me to quit a job I dearly loved so I could help her transition into a job and an assisted living situation outside our home.  These are not easy decisions to be confronted with, but they are our reality.  While we are fully capable of taking care of her in our home, she would do so much better away from us.

And so our journey continues.  Being home with Dot has its ups and downs.  We love to go on errands together, and find projects to do around the house.  But when certain things need my attention, Dorothie can become a bit needy.  I’m needing to read her signals better while Dorothie is learning that I can’t give her 100% attention every second. 

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Yet if I had a chance to do it over from the very beginning, I wouldn’t change a thing.  That might sound strange, but my faith has taught me that God never gives us anything we can’t handle, nor does he make mistakes.  Through him all things are possible, even a journey on a road less travelled.

 

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