Someday

Someday Benjamin will learn to stand. Someday he will be able to walk next to me, holding my hand instead of being carried everywhere. Someday he will be able to run to his Daddy when he comes home from work. Someday he will be able to say “Mommy” and “Daddy;” he will be able to articulate words and form sentences to communicate his thoughts and feelings. Someday he will be able to feed himself without assistance. Someday he will no longer need diapers. Someday he will have developed the necessary motor skills to throw and catch a ball, to go down a slide, to ride a tricycle, to color a picture, to make a simple craft, etc. Some days the longing for “someday” is more deeply felt than others. Today has been one of those days…

This morning we had an appointment at the local health department with Benjamin’s audiologist to have casts made for new ear molds for his hearing aids. This is never a pleasant process. I have to hold his arms down and keep his head as still as possible while she examines his ears one at a time. After examining an ear, she pushes a small piece of cotton with a string attached to it down deep into the ear canal. She then fills the ear with a soft putty. This has to stay in place for a few minutes while it hardens to create a cast of Benjamin’s inner ear. These are then sent in to a lab that will make his new molds, which we will hopefully be able to pick up in a few weeks. My son hates this process. He doesn’t like things (other than his hearing aids, and on some days that’s still questionable) in his ears, and he struggles the whole time. Being held down makes him angry, and by the time the whole process was complete, he was a mess of tears and snot. I was hopeful that our next activity would be a welcome distraction and cheer him up.

The local health department hosts monthly play groups, each highlighting a different theme. Today they were holding their Christmas play group, with multiple crafts, snacks and a free book from Santa Claus. I had been planning for a few weeks now to take Benjamin, hoping he would enjoy being around other children and gaining some new experiences. The audiologist walked us down the hall to the center of the activity. My son was still teary-eyed, and the commotion of the busy play group seemed to only add to his distress instead of capturing his interest. As I carried him around, examining the different craft options, he continued to fuss and cry, and I felt like all eyes were on me (though that may have just been in my head more than anything). All of the tables were being manned by students from the local technical college.

I decided to start at a table to make a pasta necklace, with dry noodles painted red and green. I awkwardly held Benjamin, trying to talk to him about the craft as I slid noodles over a covered wire. I finished it quickly, and the students helped to secure it around my son’s neck. He was not impressed. Within 5-10 minutes he managed to rip it off, scattering noodles on the floor. Some of the pieces were broken in the process, and his necklace found it’s final destination in the trash can. Sigh…

After making the necklace, we headed over to a play corner that was really designed for babies, but I hoped a musical toy would calm him down and hopefully alter his crabby mood. It was not to be. Benjamin pushed away the toy I tried to entice him with and continued to cry, while a baby about a third of his size sat and played contentedly. I started lifting him up over my head and kissing his tummy which scored me some smiles and giggles, but it was short lived. As soon as our little game was over, the fussing resumed.

We made our way to another table where you could make a candy cane with a pipe cleaner and red and white beads. We didn’t even begin this one. Benjamin tried to dump all the beads on the floor, but we caught him in time, and he continued to throw his fit. I awkwardly excused us and headed to the side of the room to chat with a few of the coordinators, explaining the effects of his audiologist appointment. It was during this time that the pasta necklace met its demise. They were understanding, and I knew I didn’t have to justify my son’s behavior, but I was feeling both disappointed and embarrassed.

My next idea was a trip to the bathroom to give him a brief change of scenery. This appeared to  work, until we re-emerged into the play group room and Benjamin began to cry again. Now, at this point I should have got us bundled up and headed home. I had so been looking forward to this morning, though, so I held on to the hope that something would capture his attention, and we could make a fun memory together. I decided to sit down with him for a few minutes so he could just observe things from a safe place and chatted with the woman beside me. I was waiting for a spot to open at a craft table where we could make an ornament and a Christmas door hanger using foam stickers. When a chair opened up, we headed that way. I was hoping Benjamin would enjoy placing stickers, but he had no interest and continued to fuss while I quickly made him an ornament and a door hanger and tried to talk to him about it step by step.

At this point I knew there really was no use in staying. I did want to get him a free book from Santa, and while we waited for one child to finish up, I took my son to a station where a young woman was hot-gluing pom-poms onto popsicle stick snowflakes to make Christmas ornaments. Each child could pick out the colors they wanted. Benjamin was slightly interested in pulling handfuls of pom-poms out of the bags, but his idea was to then throw them on the floor. He had tried to throw multiple things on the floor by this point and had succeeded with some, including the door hanger Mommy was working on and his right hearing aid. The young woman quickly finished his ornament and handed it to me. I was happy that Benjamin at least played a part in picking out the colors, even if it was by default.

We headed over to Santa’s corner, and his helper presented my son with a small book. He asked us a bit about our Christmas plans and tried to get Benjamin to give him a high-five. My son just looked at him not knowing what to think and continued his complaints. I knew I had kept us there too long. We got our coats on, I strapped Benjamin in his stroller, and we made our way for the door. As we crossed the room, I looked longingly at all the small children happily making crafts and walking from table to table. I knew many of them were probably close to my son’s age, some older, some younger. I felt so alone. “Well, we tried,” I said to one of the coordinators as we reached the doors. She encouraged me “That’s all you can do,” and gave me a flyer listing dates and themes for future play groups. I thanked her and we went on our way.

I felt such disappointment in my heart as we drove home. I recognized some of my own selfishness too. Did I want the experience for my son’s benefit or for my own? When he didn’t respond in the way I wanted him too, I was upset. He hasn’t reached the “somedays” I dream about yet, and I can’t make him get there on my time-table. Today I’ve been reminding myself that while it’s ok to look forward to the “somedays,” I don’t want that longing to rob me of the ability to enjoy my “todays.” I want to cherish every season of my son’s life, knowing that there will be joys and frustrations, victories and obstacles all along the way. The “somedays” I dream about now will some day be only distant memories, and new “somedays” will appear on the horizon. There is treasure to be found in today, though, and wisdom to be gleaned if I keep a teachable heart. All of my “todays” and all of my “somedays” are given as a gift to prepare me for the great “Someday,” when my faith will truly be made sight, and I see my Jesus face to face. I want to live in anticipation of that “Someday,” and I want to raise my son to do the same. His disability is but for a moment; his wholeness will be for eternity.  

It's Baby Day!

May 15, 2009:

We are at St. John’s Hospital again for the first of our now weekly appointments with Dr. Blake. A nurse leads us back to a small room and instructs me to lie back on the hospital table as she makes the necessary preparations for the non-stress test. Benjamin’s only been slightly active this morning, so I hope he will cooperate. The nurse straps a few circular, palm-size monitors over my bulging belly, putting pressure on my womb. She explains that I will need to lay still for the next 20-30 minutes as the monitors track our baby’s movement and heartbeat. A machine close by will be printing out the results throughout the duration of the test. She tells me to relax and leaves Shawn and I alone in the room, saying she will be back to check on us and on the results periodically.

As soon as the monitors are in place, my unactive little boy suddenly becomes very active! He does not appreciate the extra pressure on his little abode. Shawn and I watch with amusement (and for myself with some discomfort as well) as our baby attempts with all his might to kick off the offending monitors! I have never seen my stomach move like this—waves would really be the best description! When the test is finally complete, the nurse unhooks me and explains that the results look good today. (We were sure they would). She then leads us to another room where I will have an ultrasound to complete part two today’s testing. As has been the case each time, a technician performs the majority of the ultrasound, with Dr. Blake taking a look at the end. Benjamin obviously wore himself out during the non-stress test, and he doesn’t move much as measurements are taken of my amniotic fluid levels. He must be napping. We are relieved to learn that my fluid has actually gone up slightly since last week!

Dr. Cook explained to me at our appointment a few days prior that I will probably have to be induced at around 37 weeks gestation; 38 at the latest, in view of my low amniotic fluid. I am currently at 33 weeks. While the idea of an induced labor does not sound appealing, it is exciting to think that we will meet Benjamin within the month! I can’t wait to hold my little boy!

May 18, 2009:

We’re sitting in Dr. Cook’s office again for my weekly check-up. We will be seeing Dr. Blake again at the end of the week. However, he believes that next week’s appointment with her will be the real determining factor on when they will decide to induce labor. He explains that he will be leaving town this weekend for the Memorial Day holiday. While it’s unlikely that I will need to be induced this weekend, he wants us to understand that in the event something should happen, I will be attended to by one of the doctor’s on call.

“It’s probably not going to happen,” he says, concluding his thoughts. We agree. We do follow the recommendation, however, to have a hospital bag packed in the car, “just in case.”

May 19, 2009:

Shawn and I sit in a conference room at Jane Phillips Medical Center in Bartlesville for our third of four childbirth classes. I am so looking forward to the end of the class tonight when all the dads get to take a turn wearing the “sympathy belly.” When the time comes, each man dutifully straps on the 30 pound vest, complete with a bulging belly and breasts, and he must bend down to pick up a pencil on the floor. The room is full of laughter and flashing cameras. Shawn and I have our picture taken together when it’s his turn, but my belly definitely has his beat! His five minutes of baby belly weight is nothing compared to constant kicks, sleepless nights and a squashed bladder! Next week’s class is the one I’m most looking forward to, when we will learn about breastfeeding. I’ve dreamed all my life of nursing my babies, and I can’t wait for that special bond! As an 18-month old nursing child myself, I stood up solemnly in the middle of church one Sunday, lifted my dress over my shoulder, and pressed my baby doll’s face up to my baby chest! I guess I’ve looked forward to this for a long time!

May 20, 2009:

It’s a warm day as summer is getting ready to set in soon. I’m wearing a one piece cotton dress and my newly purchased Croc sandles; the only thing my hot, swollen feet can handle at this point. I’ve wrapped up most of my Christian Education responsibilities at The Salvation Army. All that remains now is to clean out my office space and assist in Social Services as I’m able to until it’s time to deliver the baby! My desk is almost done, but I still have to tackle the bookcase. Sitting on the floor is going to be necessary to clean out and organize the bottom shelves. Getting down isn’t so bad; getting up is another story! I’m so glad Mandy’s close by. What will it be like to be able to do simple tasks like bending over again? It feels like a lifetime ago since I was able to do that. Some days it’s hard to remember what it was like to not be pregnant!..

…Since it’s Wednesday night, Shawn and I are leading the small youth group meeting at The Salvation Army. Tonight we are talking about trusting God. Our current situation creates the perfect illustration:

“We are really having to trust God right now. It’s possible that when I go to see the specialist tomorrow, she will tell me that I can’t go home but must be admitted to the hospital to deliver the baby. We have a bag packed in the car just in case.” (Of course, we have little expectation that this will actually happen.)

We go on to share that part of trusting God is being totally honest with Him. When we’re going through stuff, it’s good to share with Him all the rawness of our emotions. He’s big enough to handle it, and He loves our honesty. We encourage the teens to pour their hearts out to God about any and every situation they face. He will meet them there.

May 21, 2009:

Benjamin has hardly moved this morning. As we make the drive to Tulsa, I talk to him and pray over him. “Come on, baby. You need to wake up and be active so they can monitor you.” Surely he’ll get going again once they strap those intruding monitors in place…

He must really be sleepy this morning. Even with the monitors strapped down, he’s not doing a whole lot today. There’s some movement here and there, but nothing like the waves we saw last week. Surely it’s nothing to worry about…

The nurse keeps coming in and out to read the results as they print. She even brings some other nurses with her. No one is saying anything to us, but this doesn’t feel like a normal silence. Soon I’m being unstrapped, and the nurse says we’ll be going to speak with Dr. Blake now.

“…to do the ultrasound?” I inquire.

“I don’t think there will be an ultrasound today,” she replies.

Shawn and I sit in another room waiting for the doctor to come and tell us what is going on. We are both feeling very uneasy, and we are trying hard not to jump to conclusions. When Dr. Blake finally walks in, she exclaims “Well, it looks like it’s baby day!” We just look at her in shock, trying to process what she has just said. Our minds swim as she explains that Benjamin’s heart rate dropped for over a minute during the non-stress test. While it’s back up again, she feels that it would be in his best interest to deliver him now at 35 weeks. Otherwise, I would have to remain hospitalized and monitored 24/7 for the next few weeks to ensure his well-being. If his heart rate dropped once, it could do it again. It’s possible that this has already been happening.

Dr. Blake instructs us to head down the road to Hillcrest Medical Center, where Dr. Cook happens to be practicing that day. We’ve never even seen the facility. We were planning to deliver at the St. John’s branch in Owasso. In a daze we check out at the front desk and head to the car. I am so grateful now that we had the presence of mind to pack a bag, though it’s a fairly meager one. As Shawn drives I call my mom and tearfully give her the update, requesting that she fly out as soon as possible. My heart sinks as I realize that she won’t be able to be with me during labor after all. I had pictured her and Shawn and possibly our friend Myong staying with me through labor. They all bring such a calming presence. I’m so scared. This is all happening so fast; so unexpected. We knew this was a possibility, but I feel so unprepared. The nursery hasn’t been completed yet. Shawn was going to finish painting the dresser this weekend, and we were going to get everything arranged just right for Benjamin. How can this be happening?!

It's a Boy!

January 16, 2009:

Shawn and I sit in a large waiting room at St. John’s Hospital in Tulsa, OK, waiting for my appointment with Dr. Blake, the specialist who will conduct the ultrasounds for our unborn baby. After what feels like an extremely long wait, we are escorted back to a small room. I am instructed to lie on the examination table and Shawn takes a seat in the corner. We notice a flat screen monitor attached to the wall, easily viewable from both of our vantage points. A young woman steps in and explains that she is one of the technicians who will be conducting most of the ultrasound; Dr. Blake will take a look at the end and visit with us.

We are both so eager. The only ultrasound I’ve had so far was at the very beginning of the pregnancy and only revealed what looked like a peanut-sized blob but was actually our baby, whose heart was already beating! We can’t wait to see what our child will look like at 17 weeks gestation and hope that the little boy we believe him to be will be clearly identified! We are slightly anxious about what the ultrasound will reveal, though we feel mostly confident that the quad-screen test was a false-positive for Down syndrome.

The technician has me lift my shirt over my rounded belly and smears a warm, clear goop all over. She then takes the ultrasound wand and starts to slowly move it across my womb. A picture appears on the screen, but at first it’s hard to make out what we are seeing. She is very accommodating, answering our questions and identifying for us what we are viewing on the monitor. She explains that the ultrasound will take awhile, as she must take detailed measurements of every part of our baby. I appreciate the she always refers to him as “baby,” not “it,” or “fetus” or some other sterile word. This is our baby, and his life is precious.

We are thrilled by some of the images we see. Our little guy is so active, swimming all around in Mommy’s womb. We recognize a side shot of his head and are captured by his profile. He lifts a tiny fist up to his mouth as though he’s getting ready to suck! We see an arm; we see a leg; we see many things we can’t readily identify. We are awe-struck that we are actually watching our baby move around inside my body. He’s really there, and he’s really coming! He also seems to prefer to tuck his head down into my right side, making it difficult for the technician to get some of the measurements she needs. She has me take a bathroom break, hoping my movement will cause him to move as well. Once back, we ask her if she can determine our baby’s sex or not. Seemingly on cue, Benjamin spreads his legs wide, as if to proudly declare, “I am Benjamin, and there’s no mistaking it!” We really are having a boy!

We notice that the technician keeps going back to look at his heart. She says that she’s having a hard time seeing all that she needs to see. We think nothing of it, and are excited the ultrasound is lasting a bit longer. After awhile she explains that she will need to ask Dr. Blake to get those parts of the measurements; she’s not been successful in obtaining them. She graciously excuses herself and tells us the doctor will be with us shortly.

Shawn and I are so excited. She printed some pictures for us before leaving, and we can’t wait to get back to work and show them off! Benjamin is Benjamin! A few minutes later Dr. Blake steps in. We can tell from the beginning that she’s not going to be one for much conversation but is there to accomplish the task at hand and then move on to the next one as efficiently as possible. She also takes some extra time examining our son’s heart, but we figure it must be difficult to measure something so small, especially when the baby’s so active. When she finally completes the ultrasound, she explains, much to our relief, that our baby’s measurements look normal. She does not see any obvious markers for Down syndrome. He weighs a whopping 7 oz., and his heart is beating at 123 beats/min—all within normal range. She says she would like to schedule two more ultrasounds, six weeks apart, just to keep an eye on his development. We are a little surprised by this, but the thought of seeing our baby two more times before he is born is exciting! We witnessed a miracle today. How could anyone deny that the active little life inside of me is a baby, and his life is so valuable!

May 8, 2009:

It’s raining cats and dogs this morning. We are scheduled to see Dr. Blake again in a few hours for our last of the three ultrasounds. The second one in March was less dramatic than the first. Since Benjamin had grown (as he should), it was very difficult to identify anything we were seeing on the screen, which was a bit disappointing. His measurements still looked normal, and we were sent on our way. I really don’t want to go. My body has gone through drastic change, even just in the last month. My belly is huge! I’m carrying Benjamin all out front and low. My ankles and feet are swollen, and I can’t walk without waddling. I’m exhausted from broken sleep every night. I can no longer sleep on my side and instead sleep in the living room in a recliner. I say “sleep,” but it’s more like a series of short naps throughout the night. Benjamin is moving like crazy, and though I love seeing and feeling him move, some of his activity has become painful. We are already driving to Owasso, forty minutes away, on a weekly basis at this point to see Dr. Cook. The thought of an hour drive to Tulsa this morning is not appealing. Everything has been fine so far, and while it would be neat to see the ultrasound (maybe), I wonder if it’s worth all the energy it will take. “Lord, if you want us to go, please let it stop raining. If not, I’m going to call and cancel.”

It stopped raining. Somewhat reluctantly, we load up in the car for the long drive. We are so blessed to have understanding supervisors, who not only allow for me to take time off for my multiple appointments, but who also allow my husband to accompany me. Captain Gargis and his family we transferred in January, and Majors Alan and Cheryl Phillips came in from Florida shortly thereafter. We miss the Gargis family, but we are really enjoying building relationship with the Majors. They are very supportive of my pregnancy. I’m thankful as well for Shawn’s willingness to come with me, especially now that it’s getting more difficult for me to drive, but I know he is getting a bit weary as well…

As we expected, it is very difficult to identify what we are seeing on the ultrasound screen unless someone explains it to us. Benjamin is just too big at this point. The abundance of amniotic fluid around him in the first ultrasound provided the perfect backdrop to distinguish his movements and features. He takes up most of the space now, and only a trained eye can recognize what they are seeing. As usual, Dr. Blake takes a few moments to discuss the ultrasound with us. Our baby’s measurements still look good, though his belly measures two weeks bigger than the rest of him. It looks like I’m carrying a little chunk! We are startled however, when she shares that my amniotic fluid is measuring low. What does that mean? How does that happen? She explains that there’s not a clear reason why it happens, but if my levels drop too low, our baby can be in danger of settling on top of and pinching off the flow of oxygen and nutrients from the umbilical cord. If my amniotic fluid drops below a certain level, it will require an emergency delivery. My levels are not to the danger point yet, but they are not good. She wants to see us back weekly until the baby is born to conduct both a non-stress test and an ultrasound. Our hearts sink. We have 5 weeks to go until my due date. How can we keep up with this pace?!

Later in the day I call our trusted friend Myong, who has been a spiritual mother to us for the last few years. I tearfully tell her about the doctor’s report. I’m not sure what to think or feel. I know our baby will be ok, but I’m scared too. This was so unexpected. I’m so exhausted, which is only heightening my emotions. She prays with me on the phone, and she is fired up. She’s going to fight in prayer for our baby’s well-being. She encourages me that Shawn’s and my prayers for our son are so important and so powerful. She encourages me to worship through this; it will be life to me and life to our baby. I place my hand on my stomach and silently pray over my son. I am comforted by his movement. I remind myself of the many promises spoken over him throughout my pregnancy. He is going to be ok.

Unexpected Results

I've recently started going back in my writing to fill in the gaps from the early parts of our journey.The following captures the time during my pregnancy when we first discovered that our child may have Down syndrome... 

January 7, 2009:

I’m a few weeks into my second trimester. The queasiness of the first trimester has disappeared, and the early fatigue is beginning to lessen. I feel so relieved that I never experienced full blown morning sickness. I’m delighted with my growing “baby bump,” and  I’m enjoying my new wardrobe of maternity clothes. The faint flutters I occasionally feel in my womb are thrilling evidence of the life growing inside of me. I love being pregnant!

I have an appointment scheduled with Dr. Cook today, and I can’t wait for another chance to hear our baby’s heartbeat. I’m disappointed when I find out they will be drawing more blood today. I’ve never liked needles (who does?), but I remind myself it’s for the baby. The anticipated joy of our coming child is worth all necessary discomfort. After the nurse draws my blood, Dr. Cook explains to Shawn and me that this test is called a quad-screen test, which screens for potential birth defects or genetic abnormalities. I politely listen as he explains the details, though I am confident that none of this could possibly apply to us. He explains that an abnormal result on this blood test does not diagnose a condition, but rather verifies the increased likelihood of a possible condition. For curiosity sake, I ask what would be done in the case of an abnormal test result. He mentions amniocentisis or specialized ultrasounds as the means for obtaining an actual diagnosis. I tell him that I would not be comfortable with an amniocentisis because of the potential risk of miscarriage connected with the procedure. He already knows our stance on abortion; nothing could ever convince us to take our baby’s life. I feel a bit funny that we are even having this discussion. I know that our baby will be healthy and whole, and I don’t see much use in discussing the “what-ifs?” Dr. Cook assures us that if for any reason my test comes back abnormal, he will call us personally; otherwise he will discuss my test with me at the following visit. “I know everything will be fine,” I say, and he smiles as we wrap up the appointment. Though I didn’t feel like all the information was necessary, I am thankful for a doctor who takes the time to explain things to us.

January 12, 2009:

I am sitting at my desk at The Salvation Army where I am currently employed as an overseer for the small Christian Education department. While working, I chat on and off with my friend and co-worker Mandy who shares the office with me. We are interrupted when my cellphone rings.

“Hello?”

“Dana, this is Dr. Cook.”

I feel like my heart stops beating. There’s only one reason he would be calling me this week.

“I’m sorry to tell you that while most of your test results came back normal, there was a positive result that you run a heightened risk of carrying a child with Down syndrome.”

How do I begin to process what he’s saying? I feel so numb.

Dr. Cook gently goes on to explain that a woman my age typically runs a risk rate of 1 in 956 to give birth to a child with Down syndrome. My test results increase my risk factor to 1 in 270. He says he will refer me to a specialist to schedule an ultrasound in which they will measure my baby’s bone growth and look for any “markers” for Down syndrome. He assures me again that the blood test is not diagnostic and often further testing yields normal results. He encourages me that I can feel free to call if I have any additional questions and that I should be expecting to hear from the specialist soon. Fighting to contain my composure, I thank Dr. Cook for calling and hang up the phone.

“Is everything ok?” Mandy inquires. Her face is full of concern from what little she heard from my end of the conversation. I’m sure my expression gives it away as well. With a shaky voice I relay back to her my conversation with the doctor, saying periodically to comfort myself, “I’m sure everything will turn out ok.” My friend doesn’t know what to say and tries her best to offer some word of encouragement. I quickly excuse myself to go find Shawn.

I find my husband at the other end of the building, alone with his laptop and a book. The moment I walk into the room he asks, “What’s wrong?” The tears begin to flow as I blurt out with a sob, “Everything’s going to be ok!” It hurts me to tell him, knowing the pain he will feel as well. We sit together in shock, silent tears running down our faces. How could this possibly be happening? We wanted a baby for so long. We pray over my womb every day. We envision the perfect, healthy baby boy scheduled to arrive in the summer. Surely the test is wrong!

We make our way up to Captain Gargis’ office. He is our current supervisor and pastor, but he and his family will soon be transferred to another Salvation Army Corps. Over the last year and half, he has mentored us in his fatherly way, and he has always willingly offered a listening ear. In his wisdom, he doesn’t try to find a quick answer to make us feel better. He listens to us, cries with us, and shares in our shock and pain. He assures us of the love we will have for our child regardless of his or her condition and takes the time to pray with us. He also gives us the option of taking the afternoon off so that we can have some time to process the news we just received. Shawn tells me he will take an extended lunch break with me, but he will have to return in the afternoon to do school pick-ups for the after school program he directs. He will come home again as soon as he can get away.

Our drive home is marked by tears and prayers, but surprisingly, by the time we pull into our driveway, an unexpected peace has descended on our hearts, and we know others are praying for us. Once inside I quickly grab my pregnancy book to see if there is any information on Down syndrome and the testing I just received. As Shawn and I read about some of the common traits of a child with Down syndrome, it feels so surreal to think that this could be our child. We don’t feel at all ready to accept that reality and are encouraged to read that things such as a miscalculated due date or even the presence of twins can result in a false-positive reading. Surely this is the case with us. As I take time to read and pray, I receive strength from Psalm 138:3, 7-8….

In the day when I cried out, You answered me, and made me bold with strength in my soul…Though I walk in the midst of trouble, You will revive me; You will stretch out Your hand against the wrath of my enemies, and Your right hand will save me. The Lord will perfect that which concerns me; Your mercy, O Lord, endures forever. Do not forsake the work of Your hands.

After supper we head out to meet up with some friends from Nightwatch, a weekly prayer and worship gathering we have been a part of for the last few years. Tonight we will be carpooling to a neighboring town to listen to a guest minister at a church whom we have gone to see before. On the way Shawn and I ask the Lord to speak to us specifically tonight about our unborn baby.

The service is good, but it’s hard to fully focus with this unanswered question hanging over my mind. There is still a peace guarding my heart, but there is the presence of pain as well. Near the end, the guest minister is walking through the congregation, quietly asking the Holy Spirit to highlight people to him and give him words of encouragement to share with them. As he does this, he continues to share some and tell stories. He is a delight to listen to—very funny at times, but when he speaks, our hearts are so stirred for Jesus. The Word of God continually flows out from him because he has taken the time to really get it inside of him, and he walks very closely with the Lord and hears His voice. When he is close to our section, I silently pray again, “Lord, please speak to us tonight about our baby.” Within moments, he stops in front of Shawn and I and begins to engage us briefly in conversation. He then points to my pregnant belly and declares, “I speak John the Baptist over your baby. He will be full of the Holy Spirit from the womb.” (Incidentally, this same thing was spoken over Benjamin on three more occassions during my pregnancy by three different ministers, none of whom were connected to one another!)

Shawn and I are thrilled! John the Baptist was born in seemingly impossible circumstances and was set apart for God before he was even conceived. He walked closely with God and prepared the way for an entire generation to recognize and receive Jesus when He came. How exciting to think that our baby will be one set apart from the womb, whose life will prepare the way for many to meet Jesus. (How easily we forgot that with every calling, there is a cost).

More encouragement comes before the night is over. A layman in the church is a close friend to the guest minister and has travelled with him before. He is invited up at the end to share anything that he feels the Holy Spirit has been speaking to him. Without hesitation he points me out of the crowd and says, “I’m supposed to tell you that God is going to put a lot of vitamins and nutrients in your blood, making it rich with iron.” I almost fall out of my chair! This feels so incredibly personal after lamenting all day over my abnormal blood test! He shares words of encouragement with two more people and then asks for Shawn and I to come over to where he and his wife are so that they can pray for us. We tell them all about the test and the call that day. They encourage us, pray for us, and promise to be praying for us regularly. He asks us to bring the baby back to meet them after he’s born. Our hearts are soaring!

Before leaving, we purchase a book from the guest minister and ask him to sign it. He does so and jots down the scripture reference Isaiah 44:3-4…

For I will pour water on the thirsty land, and streams on the dry ground; I will pour out My Spirit on your offspring, and My blessing on your descendents. They will spring up like grass in a meadow, like poplar trees by flowing streams.

We feel like we are floating out of the church. With so much personal encouragement tonight, how could our baby possibly have Down syndrome?!

The Power of Weakness

I wrote this on October 30...

In many ways, I feel as though in the last two and a half years I have been in a school of weakness; yet sometimes I think I may still be in kindergarten! Becoming a new parent and raising a child with special needs has caused me to recognize my own weaknesses and limitations in ways potentially nothing else could have. Observing the weaknesses in my young son over the months and now years has taught me more about the kindness of God and His unconditional love for weak human beings. The lessons, though still elementary, have been invaluable.

I have so many thoughts spinning right now with what direction I should take in writing, so I guess I will go with what's been right in front of me. This last month especially I feel like God has been highlighting weakness to me on so many levels. He is inviting me to embrace my weakness without shame and to completely rely on His love and strength. Near the end of last month our church embarked on a 21 day Daniel fast (no meats, sweets, or choice foods), and a handful of us met nightly to pray and seek the Lord. We were fasting to see breakthrough on many levels: in our personal lives, in our church, in our city, in our nation, and even around the globe. As we came night after night feeling more physically and emotionally weak from the fasting, one thing became undeniably clear—we have NOTHING apart from Jesus. Our need of Him is so deep, so far reaching into every sphere and pocket of life. There is nothing we have to bring to Him that He didn't first give to us, even our love for Him (see 1 John 4:19).

My physical sense of weakness was increasingly heightened before, during and now even after the fast. Days before the beginning of our fast, I had an unexpected re-occurrence of what I had thought was severe acid reflux—a condition that has plagued me off and on since Benjamin's birth. Over the next few weeks I had a handful of episodes that left me screaming in pain on the floor, in addition to daily feeling at least some level of discomfort every time I ate. Near the end of the fast I discovered through a series of events, including an ER visit, that I had been misdiagnosed for the last two years. While I had been treating myself for acid reflux, my gallbladder was filling up with more and more stones, to the point that almost anything could trigger an attack. I consulted with a surgeon, and a week after completing our fast I went in for out-patient laproscoptic surgery to have my gallbladder removed. That was four days ago, and I am still very weak physically. Shawn has been caring for me and Benjamin, as I am not able to pick up our son yet. My mom is on an airplane as I write this to help me for the week since Shawn has to return to work. Friends have offered prayers, encouragement, and food while I walk out my recovery time. The physical limitations and discomfort have been frustrating, but again I am faced with my own weakness and my need for Jesus and for the Body of Christ.

I have been realizing more and more how quickly I try to rely on my own strength and ability, my own understanding of things, and my own emotions and opinions, which can so easily be swayed. Physical wellness impacts emotional wellness, and both can fluctuate so quickly. I am becoming more and more convinced that I can't rely on what I feel but only on what God's Word says, for His Word is unchanging. Yet, I so often look to myself or others when faced with a need instead of acknowledging my complete barrenness apart from Jesus. He wants me to come to Him in my weakness and vulnerability, to throw myself on His mercy and grace and All-Sufficiency. How easily I forget that He loves weak, powerless human beings, and He rises to show Himself strong on our behalf. Indeed, it is in the very acknowledgment of my complete lack that He steps in with His complete abundance. All He wants is that I trust Him absolutely, yielding myself to His ways that are always superior to my own.
I learn so much watching Benjamin. He doesn't worry or fear but has a simple trust that Mommy and Daddy are going to take care of him. He doesn't consider his inabilities to meet his own needs and try to figure out how to get around them. He doesn't question where his provision is coming from or try to figure things out before they happen. He lives in the present moment, confident that he is loved and cared for, free to be himself and to learn and grow. He demonstrates to me day in and day out the simplicity of a child's trust. I was recently reading in a book called The Seeking Heart by the 17^th century Fenelon and was struck by the following:

“Your only task is to bear the weakness of your body and mind. Strength is made perfect in weakness. You are only strong in God when you are weak in yourself. Your weakness will be your strength if you accept it with a lowly heart...

Trusting in God is a simple resting in God's love, as a baby lies in its mother's arms...

The point of trusting God is not to do great things that you can feel good about, but to trust God from a place of deep weakness. Here is a way to know if you've actually trusted God with something—you will not think about the matter any longer, nor will you feel a lack of peace.”

Like the apostle Paul, I want to know in reality, not just in theory, that His power truly is made perfect in my weakness (2 Cor. 12:9). The all-powerful, eternal God promises to dwell with those who are contrite and lowly of heart, who recognize their absolute need of Him (Isaiah 57:15). I want to live so close to His heart. It's time to know and embrace the power of weakness!

The Waiting Area

A few days before Benjamin’s recent eye surgery, we headed to Tulsa for his pre-operation appointment. Since we had scheduled for the afternoon, we were to check in at the main hospital instead of the children’s hospital where he would actually have his surgery. As we made our way to the check-in desk, I saw the familiar waiting area next to the coffee stand. I realized that the last time we had been to this particular waiting area was the day before Benjamin’s heart surgery. We have gone to the children’s hospital for every other pre-op appointment since. I was not prepared for the wave of emotion that hit me as we checked in and took a seat to wait.

The first thing I noticed was the built-in play area in the center of the waiting area. There were colorful beads to move along a maze of colorful wires, spinning dials and squares, a tic-tac-toe board, etc. I was transported back to the day before our tiny son’s heart surgery. Shawn and I sat in the waiting area in an emotional daze before being called back for one of the most difficult afternoons of our life. Shawn needed a distraction, so he sat on the floor and began to play at the play area, much to my embarrassment. After awhile a little girl joined him (he’s always been a magnet for kids), and he continued even after she left, despite my pleas that he come sit with me again. In my stress, I wanted the comfort of his presence next to me. In his stress, he couldn’t bear to sit still and was looking for anything to take his mind off of the painful situation at hand.

“Benjamin Hemminger?” My thoughts were brought back to the present as I heard my son’s name being called. I didn’t want to walk back into the pre-op area. I wanted to go home. I felt silly for feeling this way. I was directed to a small desk area where I signed some paper work before being sent back to the waiting area again. As we waited, I thought that Benjamin might enjoy the play area, so I pulled him out of his stroller, and we knelt down in front of it as he began to reach for the beads. It felt a little bittersweet in a way to have Benjamin playing at the same spot his Daddy had over two years prior.

“Benjamin Hemminger?” Our play time had only just begun when we were called back for the second time and again I felt a slight feeling of dread come over me. Since I was already holding my son, I just carried him back in one arm and pushed the stroller with the other. The first order of business was to have him weighed and measured. Before we could begin, I noticed the parked stroller start to tip back, weighted down by the diaper bag. Out of instinct I lunged to catch it, giving my poor boy a bit of whip lash in the process. He, of course, began to cry, adding strain to my already strained emotions. I felt so bad. Thankfully it didn’t take him too long to calm down and after being weighed and measured, we were taken back to one of the nurses’ stations that were set up as pods one after the other with a curtain to draw across the entrance. I was grateful that we were not taken to the same station as we had been two years ago, though all of them look virtually the same.

As I waited for a consultation with an anesthesiologist, I remembered again our last experience in this place. It was essential that our son have blood drawn before such a major surgery, but his little veins had all been tapped while in the NICU. We watched helplessly as the first set of nurses tried multiple times to draw blood from our two month old baby’s little body, with failed attempts in his arms and legs. He screamed and screamed, turning bright red, with no concept of what was happening to him and why. When the first group failed, a team of pediatric nurses was called in. Since the stations were small, we were eventually asked to step outside. Though the curtain hid our eyes from seeing the continued failed attempts to draw Benjamin’s blood, it did nothing to drown out the sound of his screams. After the new team’s multiple failed attempts, we were allowed back in to comfort our son until the surgical assistant arrived. Knowing that getting blood from Benjamin’s arms or legs was proving to be too difficult, he tried to draw from our baby’s neck. His attempts failed as well, and we continued to be tortured by the screams of our tortured son. Finally, one of the surgeons, Dr. Barth was called in. She ultimately had to make incisions in Benjamin’s hips in order to draw the necessary amount of blood. All we could do through-out each episode was to hold on to each other and cry. We felt so helpless. When it was all said and done, we were exhausted, and our exhausted little baby looked like a pin cushion, with red dots from head to toe. We wondered how we would make it through his surgery the next morning.

The anesthesiologist arrived and went through routine information about general anesthesia and what to expect; information I’ve heard more times than I’ve ever wanted to. She was followed shortly by a nurse who went through more routine information about check-in for surgery and Benjamin’s required fast from midnight on. He didn’t even have to have blood drawn, as this was only a simple out-patient surgery, but still I felt raw. I was relieved when it was time to go.

As I started to drive, I began to pray, allowing the tears to finally come. I prayed for Benjamin to be healed of any trauma from his early months when Mommy couldn’t be there for him as I wanted to be. I was concerned about what may have happened to him emotionally with so many painful and confusing experiences throughout his hospital stays. I was concerned that he had such limited physical touch for nine days after his birth and for another nine days after his heart surgery. As I cried and prayed, though, I was reminded again of Jesus’ promise to me during that first shaky year, “I never left his bedside.” I have to trust that when I was unable to nurture Benjamin, the Holy Spirit was (and is) present with him, nurturing him and sustaining him. I have to believe that when I felt helpless to care for my son, the Helper was there, giving him all he had need of. I have to believe that the God who is outside of time is able to redeem the time for Benjamin that felt lost in the sterile environment of hospitals, when breathing tubes and wires kept him from Mommy’s and Daddy’s arms. I was comforted, knowing the promise is true, “Never will I leave you, never will I forsake you.”

The Wonder of a Child

I love to watch the wonder in the face of a child as they make a new discovery. In their eyes the world is fresh and new and exciting with so much to see and experience. Currently, one of Benjamin’s favorite toys is a little red train that plays music and cycles balls through its top, down through its middle and up and out at the top again. He drops a ball in the top and then leans forward as close as possible to watch for the ball to re-emerge and begin the process all over. It’s the same cycle over and over, but it brings him wonder and delight each time. He loves to experiment with his train as well. Often if I hear a cry of frustration and notice the balls are stuck in their cycle, I simply have to reach into the train and out will come a sock or a small plastic insert from his ankle braces or whatever else was handy at the time! One day (thankfully during a time the train was not being used), I reached in and found his missing hearing aid!

Benjamin can be fascinated by the simplest of things—the spinning motion of a ceiling fan, hands clapping together (or anything with a rhythm for that matter), the various textures of every day surfaces and objects. I want to encourage his sense of discovery. I want him to explore the world around him. So many times I’ve seen a busy parent pull their child away from an unexpected discovery, maybe as simple as a dandelion in the yard. I don’t say this to be critical; I know I could so easily be guilty of the same behavior when I feel the crunch of our schedule. However, I want to remember to allow Benjamin numerous opportunities for discovery, and I want to share his wonder in each new experience. I know if he could speak, he would have much to tell me about the events of his day. Often while he’s playing, he will look at me with a big smile on his face as if to say, “Mommy, did you see that?!”

I was recently pondering the parallel that can be drawn between the wonder of discovery in a child and the wonder of discovery in a new believer. They are often fascinated by each new experience. God opens up something to them in the Word and they are thrilled, eager to share their wonder with someone. He speaks something to their hearts, and they are in awe. Things are new and fresh, and like little children they eagerly explore. How often, though, are they met with levels of indifference by more “mature” believers? Maybe their new revelation is a truth we’ve long known and have even started to take for granted. Sometimes their enthusiasm seems “over-the-top,” and may even make us uncomfortable. How often has the Body of Christ been guilty of squelching the wonder of discovery in a new Christian? Why do we do this? I think it would be good to realize that just as we have things to teach them, they have much to teach us. I want an ever-increasing excitement to grow inside of me for Jesus and His Kingdom. There will be new beauties and mysteries and facets of His heart to discover for all of eternity; we’ve only just begun. I suppose in that sense we are all just little children. After all, Jesus told us that it is those with a child-like (not childish) heart who will inherit the Kingdom of Heaven.

But I fear that somehow you will be led away from your pure and simple devotion to Christ, just as Eve was deceived by the serpent. (2 Corinthians 11:3, NLT)

But Jesus said to them, “Let the children come to Me. Don’t stop them! For the Kingdom of Heaven belongs to such as these.” (Matthew 19:14, NLT)

May we all re-discover the wonder of childhood as we walk in simple love and devotion to Jesus, eager to seek out each new revelation and experience He would bring our way!  

"Sighting Day"

During Benjamin’s first month at home I was in a fog, trying to get into a rhythm with our brand new life and my brand new schedule. Our little baby slept most of the time, largely due to the three holes in his heart that had yet to be repaired. I would often have to wake him up just to get him to eat. I wanted interaction with my son in addition to our nursing times, so every day for the first few weeks I would lay him on a boppy pillow on my lap and read to him. He would often fall back asleep or quietly look around, but I cherished the time.

During Shawn’s and my dating years, we were introduced to an amazing children’s book trilogy (Tales of the Kingdom; Tales of the Resistance; Tales of the Restoration) by David and Karen Mains. Each book contains a collection of stories that are rich with allegory about the Kingdom of God, expressing His heart with creativity and excellence. In the first book Tales of the Kingdom the subjects of the King (Jesus) live in Great Park, tended by Caretaker (Holy Spirit) and His wife Mercie. On a regular basis, the people of Great Park come together for the Great Celebration—a night of feasting and festivity and fellowship with the King. In addition, the children regularly enjoy a day of fun and games called “Sighting Day.” On this day, the King appears all around Great Park in many different disguises, and the children try to recognize Him in whatever appearance He comes. Afterward, they spend the rest of the day playing together. It was while reading the story called “Sighting Day” to Benjamin in those early weeks, that I experienced an unexpected embrace from the Lord. While so much of that season is a fog in my mind, this particular memory stands out clearly.

As I neared the end of the story (which I had read many times before), I came to the part where Caretaker and a young boy visit Outcast Village, a place reserved for those who had been wounded in the evil Enchanted City, and desperately needed Mercie’s tender care. The following paragraph resonated in the core of my being, and the tears began to fall:

Caretaker explained that on Sighting Day many outcasts were unable to play the game of hunting the King. Some were wounded. Some were blinded. Others were mending from their diseases. Instead the King came to them. He sang songs and told stories. He wove moonlight and the warm night and all good things together until the hearts of the outcasts were comforted because the King had been among them (underline mine).

It’s hard to express the tender love and comfort that poured into my heart at that moment. I knew that I was one of the deeply wounded ones without the strength and energy to seek the King. Regardless of my present state, though, in His compassion King Jesus promised to come to me.

Since that day He’s come to me in many ways, sometimes in the disguise of another person, an event, a song, a still, small voice…Sometimes He comes to me in a profound way that thrills and comforts my heart; often He comes in simple ways that I may not even always perceive. Many times He doesn’t come in ways I would expect or would even have chosen. Regardless of how He chooses to come, though, the point is that He comes. He is faithful. And the more Jesus comes to me in my brokenness, the more quickly I run to Him as I experience pain. He is my safe place.

And so the boy (or girl!) discovered that seek-the-King is a wonderful game. Like all games it must be played with a child’s heart, which believes and is always prepared to be surprised, because a King can wear many disguises.

Picture Gallery

Things have been so busy this last month that I haven't been able to find time to write! Hopefully I can sit down soon and get some thoughts out. Anyway, I thought I'd at least post some recent pics of our little man. Enjoy!

Water Lessons

Benjamin is a water baby. He loves to be wet! Bath times have almost always been an enjoyable experience. He loves to watch the water running out of the faucet. He loves to see the light reflections in the water and gets his face down so close, studying the surface from all different angles. He loves to splash. He loves to have me pour water over him, especially on his hands and feet. Rubber ducks make the experience even more exciting! At the end of bath time, he’s fascinated by the water going down the drain and has even started sliding onto his belly to get a closer look.

Recently Benjamin had his first pool therapy with his new physical therapist. I think it is safe to say it was the most enjoyable therapy session of his life thus far (and he’s had plenty)! He smiled and squealed and didn’t even mind getting his face in the water a bit. His therapist encouraged me to give him lots of opportunities to be in the water.  I knew she was planning a swim night for her client families at the local mini water park/pool, and I was sure to mark the calendar so we could be there. As it would so happen, Shawn had an end of the summer event tonight for the Red Shield Club at The Salvation Army- the same night as the pool party. His event began at 6:00, and the pool party began at 7:00. I attended his program until the reception, and then headed with Benjamin to the pool, where Shawn would later meet us.

Benjamin thought we’d walked into a dream land! There was a kiddie pool that led into a larger pool, (no deep end), and there was so much to see and experience. There was cascading water, mini water spouts, slides, etc. He demonstrated his delight unhindered for an entire hour before his Daddy was even able to come. We sat in the water, played with the water spouts, floated around the baby pool in a baby floating device and chatted with other families. If Benjamin could speak, I think he would have exclaimed, “Mommy, why didn’t we come here sooner? Can we do this every day?!”

When Shawn arrived we were walking around in the big pool. He got changed and happily joined us, then took Benjamin around the whirl pool (a circular canal with a gentle current that helps push you along). We placed him in a flotation device again and walked him all over the place. We had a wonderful time as a family, and it was such a delight to see Benjamin so obviously enjoying himself until he was just too tired to know what to do anymore. (The pool party infringed on his normal bedtime!) It was also special to see so many other families there with their children of all different ages and ability levels, enjoying some family time together. There was everything from a tiny baby who is 6 months old but born 4 months pre-mature to a young man who was being walked around in the pool by his mother. There were some children who had no apparent disabilities, to children with Down syndrome and spina bifida, to older children/teens who appeared to need complete assistance in every area of functioning.

I realized again tonight that we have so much to be thankful for. I want to spend much more time rejoicing in Benjamin’s abilities than in grieving his delays. I don’t want to take for granted his smiles and squeals and contagious little personality. I also want to learn to see all people through God’s eyes, regardless of their outward appearance. The Lord was speaking to me about this earlier in the week. When I look at Benjamin, though I’m aware of his disabilities, I don’t see a disability; I see my son who I love so intensely. I can’t help but love him because he came from me, and he’s mine. I felt the Father whisper, “You may look at someone and see their areas of bondage and sin; I look at them and see the child I so dearly love. They came from My very heart. I can’t help Myself but to love them!” God isn’t focused on our disabilities but on His ability to transform us with His love. Whether the disability is internal or external, I want to see the beauty of each life from Heaven’s eyes. I welcome Him to bring more of these “water lessons” my way!

Treasures in Darkness

Before Benjamin was ever conceived, a spiritual mentor in our lives told us she felt like God had showed her that when we had our first child there would be a struggle of some sort, but the Lord would bring a testimony through it all. She didn’t have a clear sense of what this would mean, and neither did we! I’m so thankful that God doesn’t show us everything all at once. Our idea of a struggle looked like a bump in the road compared to the mountains we came up against. If we had known ahead of time all that we would face upon Benjamin’s birth I would have had a hard time believing we could make it through. I believe the Holy Spirit will reveal to us different things about the future as we ask Him and wait on Him, but His desire is that we would always depend on Him in the present and trust Him with the future.

When our struggles met us there was fear and there was shaking, but we never fell. Jesus was so faithful to sustain us and walk us through. We have personally experienced more of the truth of the Word of God:

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. -2 Corinthians 12:9(NIV)

I can do all this through him who gives me strength. –Philippians 4:13(NIV)

The amazing thing is that, not only have we made it through, we have come out on the other side with a deeper trust in and love for Jesus than ever before. He has planted things deep inside of us that can never be taken away!

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. –Romans 8:28(NIV)

I believe there are some treasures that can only be mined in darkness. However, we have to be willing to look for them and open to receive them. We can simply grit our teeth and try to make it through (sometimes getting stuck along the way), or we can keep moving forward and come out with something beautiful and valuable, made possible only by the grace of God. I believe this is the dividing line between tragedy and triumph!

And I will give you treasures hidden in the darkness—secret riches. I will do this so you may know that I am the Lord, the God of Israel, the one who calls you by name. –Isaiah 45:3(NLT)