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Posted on Dec 23, 2017 in Devotional, Parenting, Spiritual Life, Wisdom | 0 comments

Who Needs Normal?

Who Needs Normal?

I’ve spent a lot of time in Facebook groups for moms of kids with Down syndrome this year. It’s been helpful to me to see other children with Ds, to hear what their moms are going through, and to learn all I can about the ways 47 chromosomes can affect my child.

Recently a mother posted that she had confessed to a friend that she sometimes still grieves that her daughter has Down syndrome. The person she spoke to answered her harshly, saying she should just be grateful that she has a baby at all.

Whoa.

The mother asked us if we ever felt like she does, wondering if she should be ashamed of herself and her feelings.

Goodness, no.

A lot of people in the Down syndrome community really celebrate the diagnosis and claim that they wouldn’t want their child to be any other way. I look forward to the day I feel that way too. But when I found out, I felt like my entire world was crumbling and God had withdrawn his presence from me. My mouth went dry, a wash of darkness went over my eyes so that I couldn’t see for a moment, and my body trembled uncontrollably. We’d been warned the night before, right after he was born, but I hadn’t thought it could be true until that moment. I was in my hospital bed recovering from an unplanned c-section, Rick was an hour away at the nearest NICU with Redmond, and my midwife and the OB who did the c-section were with me. The news came on the phone from the NICU nurse who had just finished explaining all Redmond’s medical concerns to me. I asked her the question, sure she would say no. She didn’t.

Two weeks later we received the results of his genetic test, confirming the suspicion. Young and bright medical professionals encouraged us, smiling as they told us how much we had to look forward to with our son. They explained that it’s a great time to have a child with Down syndrome because there’s been so much research and advancement in the last 20 years. If Redmond had been born 30 years ago, he would not have lived. I am incredibly grateful for the gifts God has given those with scientific minds who seek out answers and find incredible ways of providing healing and hope.

In spite of the bright outlook of the doctors, it took a few months for me to accept that the diagnosis wasn’t wrong. Redmond’s face was so covered in tubes that it was hard to see his distinct features. I obsessed over what “Down syndrome-type features” Redmond did and did not have. He has a strong palmar crease in his hands, but not much of a nuchal fold. He has some pretty crazy toes, but not the typical sandal toes. His fingers aren’t square, his ears aren’t low set, but he has a flatter nasal bridge. Surely the diagnosis was incorrect. He looks a lot like Eliana did as a baby. I considered asking the doctor to run another karyotype, unconvinced that the first one was correct.

I was terrified about what Down syndrome meant for Eliana and Charlie. Had I ruined their lives? Would I be able to parent them like I wanted to while I was caring for a disabled child? I was so embarrassed too. Terrible shame caused my face to flush hot when I thought about sharing the news.

What I was so embarrassed about, I cannot recall. Since that time, I have come to see that life with Redmond will greatly enrich our family, giving Eliana and Charlie a sense of compassion that many people lack. They will be able to see people who are different as individuals, worthy of friendship and love. We care for Redmond as a team. Rick and I are the parents, of course, but I work to actively involve them in everything I can. Eliana is a wonderful physical therapist. Charlie is a terrific diaper fetcher and bath time assistant. They adore their brother and have been told that he has Down syndrome. How much they understand of that at their age is questionable, but it will come with time.

My feeling that God had withdrawn his presence from me was just that – my feeling. God’s presence never left. He’s changed my heart to understand Down syndrome as a gift, to know that we are the best parents for him and we can trust our instincts, and that every moment we have with Redmond is a blessing. Writing those words still causes tears to rise and an ache in my throat. I do not claim to understand this gift. But I believe with all my heart that it is true and will become clearer every day. God has shown Himself faithful and mighty as He has taken this medically fragile baby and healed his body. One thing yet remains – feeding – and I have no doubt that He will soon eat and drink enough on his own to sustain himself.

Why in the world would I put such thoughts into words and publish them for the world to see? I have no shame in what I felt and thought, and if it can help one other parent in our situation feel better, it is worth it. It is understandable. We had no frame of reference for Down syndrome. It was a thing that was going to make our life hard, to make our family weird, and we really dislike weird. Oh, how we’ve treasured “easy,” “normal,” and “typical.” But if you know anything about us at all, you know how laughable that sentence is. Rick and I are far from normal or typical, having married for the first time at ages 47 (Rick) and 36 (me). It was not easy to be single for that long. Rick lived with his parents until we got married. We had our first child at ages 48 and 37 and our last at ages 52 and 41. As a single woman, I became an ordained pastor. We are weird! And we LOVE the weird people in our lives. Why we thought normal was so good is absurd.

Hard is another thing. I’d be lying if I said we’d come to embrace hard things. Rather, we’ve come to realize that we can do hard things. Hard things will not break us. Hard things will not break our marriage, will not break our faith in God, and will not break our spirits. Hard things are a part of life and God uses them to grow us into who He is calling us to be. Does God cause hard things? I believe we live in a fallen and broken world and hard things happen as a result of that. My theology isn’t perfectly worked out here, but I’ve learned that formulas do not exist. God doesn’t work that way: if you do A, then God will do B. God’s promises are true, but His timing is not our timing. We still do what we can to please God, to obey His word, but we no longer expect that our lives will somehow be free from difficulty or pain. The rain falls on the just and the unjust alike (Matthew 5:45). Job was a godly man, and yet he suffered terribly. We’ve learned a new level of difficulty and aren’t looking to find any deeper levels.

While I accept Down syndrome today and acknowledge that God has given us a gift, I would be lying if I said I still feel no grief over it. I regularly tell myself to stop borrowing trouble as I try to figure out a future for my son. His future is in God’s hands and I believe God has a purpose for him. I feel sad when I think about sending him to school where he will learn that he is different. There is a tinge of wistfulness when I see typical babies his age who are ahead of him developmentally. But when I tell Comparison and Fear that they are thieves and liars, grief leaves and joy takes over. I immerse myself in what Redmond is doing today. He’s so cute and cuddly. He’s doing amazing things, learning how to eat and drink on his own, getting stronger every day. He’s very vocal and alert. He adores his siblings and is happier when they’re around. He is a treasure. He isn’t colicky or unhappy, he sleeps great, and he smiles with his whole body.

Although I’m writing about it now, during our daily lives I rarely think about Down syndrome. He’s just my precious boy and we adore one another. I’ve had to focus on it more just because I had such a steep learning curve and I hate to be ignorant. I had to know what I was getting into and how to give him the best life possible. And for that precious mom whose “friend” chastised because she was not happy just to have a baby, I send all my love. Although a woman longing for a baby may not realize it, there are worse things than not having a baby at all. I have waited in the lobby of children’s hospitals and seen the families that go through there. I’ve seen the heartbreak of children who are severely deformed, unable to communicate at all, unable to do anything for themselves. What is Down syndrome in relation to the things I have seen? It’s NOTHING. It’s definitely a gift. But even with the gift, we are allowed to mourn the idea of what will never be.

Special needs parents – we swallow down our pride and grief, we stop concerning ourselves with petty things (will our child will be the best dressed or most athletic?). We push ourselves beyond our limits, going from doctors to specialists to therapists, learning about medical conditions and procedures we never wanted to understand. We try to find time to grocery shop, pick up the toys, and take a shower in between changing bandages or reinserting feeding tubes. We cry a little in private, and then we suck it up and give our children our best smile as we try one more time to get the baby to eat or sit up. We make the most of what we’ve been given, squeeze every ounce of good we can out of it, and try not to think too much about the unknown future. But we certainly grieve and there is nothing about that to apologize for.

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Posted on Jul 20, 2017 in Devotional, Health, Love, Parenting, Spiritual Life, Wisdom | 14 comments

Peace

Peace

***This post is a continuation of my previous post, Fear, about the birth of my recent child who had severe medical complications and Down Syndrome. To read more about Redmond and our story about him, you can see my public Facebook posts beginning March 1, 2017, and click here.***

 

In the middle of my struggle with fear surrounding Redmond’s birth and the first couple months of his life, there were pockets of peace too. Although fear threatened to swallow me up, I didn’t have panic attacks. I didn’t come undone. I kept putting one foot in front of the other, and I used the tools at my disposal to get to peace.

From the moment I knew I was pregnant with Redmond, a sense of dread and unrest came over me. I spent the first two weeks after that positive pregnancy test praying desperately for God to intervene in whatever was wrong. I gave Him my permission (as if He needed it) to take the baby if there was something terribly wrong. I waited for a miscarriage. I could not shake the sense of dread.

After two weeks of crying out to God, I felt His presence one morning like a soothing balm pour over me. My hands flew to my belly and the words that came to me were, “Life and health, joy and peace.” Peace came with those words. Every time the fear and dread tried to return, I comforted myself with those words.

The morning of our 20-week ultrasound, which was an extra-fancy one for high risk pregnancies, I felt like I was trying to walk in mud. My feet simply wouldn’t go. I was stuck. It was everything I could do to lift them up and move them forward, so afraid of what I might find out that day. After the hour-long ultrasound, we were ushered into the grim-looking doctor’s office. As she launched into a lecture about managing gestational diabetes, I struggled to comprehend what she said.

Finally, I stopped her and asked bluntly, “Is my baby okay?”

“Hmmm?” She looked up from her paper, confused.

“Is. My. Baby. Okay?”

“Oh, your baby is fine. It looks perfectly healthy. Were you worried?” Clueless doctor.

“No Down Syndrome?” I remember that I specifically asked about that. They measure EVERYTHING in this ultrasound. A friend told me how she was warned that her daughter had a shortened nasal bone, which is a soft marker for Down Syndrome, but her baby was born just fine.

The doctor explained to me that they can’t tell for sure without several more tests, and even then they can only tell you something like if there’s a one in four chance that the baby has DS, but she’d be happy to run them if we wanted them. At the point where we were, she felt confident that there was only a slight chance that the baby had DS.

Relieved that the extensive ultrasound had shown no markers for DS or other birth defects, we again declined further testing. We agreed that we would love and accept any child God gave us, and there was little point worrying ourselves to pieces about it before we could know 100%.

I spent the remainder of the pregnancy feeling harassed and annoyed by the management of gestational diabetes and hyperemesis gravidarium (which included extreme motion sickness, making me sick even when I walked). Pregnancy is a real challenge for some of us, but I determined that 9 months of difficulty was worth the lifetime of joy that a child brings.

Towards the end of the pregnancy, I received weekly ultrasounds and non-stress tests. The baby’s heart never did what it was supposed to during the NSTs. It was supposed to go up 15 beats per minute for 15 seconds, but it never did. So I’d get another ultrasound, which would confirm that everything was okay, and we’d go on another week. We also knew that I had high amniotic fluid and the baby had a small amount of water around the kidneys. Both of those can be indicators of DS, but DS babies typically measure small, especially their heads. Redmond topped out in the 98th percentile with an average head size.

There were multiple tests and concerns from the doctors with my previous pregnancies and everything worked out just fine. I kept reminding myself of that, repeating the words, “Life and health, joy and peace“, and doing my best not to worry.

On the morning Redmond was born, I watched a YouTube video by a naturopath about managing anxiety. I’d seen it before and was looking for it to send to a friend. During a time when I should’ve been the most anxious, I was fairly calm. When Rick came back that morning, I firmly told him we had to get to the hospital. I was very concerned about the baby, but I wasn’t freaking out. When the nurse told me that the midwife was coming to break my water, I stayed calm. When they told me that the baby was in distress and I was headed toward a c-section, I handled it well. The words of the doctor replayed in my mind. I had a choice how I would handle the situation. God had promised me “Life and health, joy and peace.”

As I stumbled through those first few days of Redmond’s life, I found it hard to comprehend the things the doctors said. The words they used were terrible, and they definitely brought fear with them, but I also had a sense of peace. My baby would be okay. He didn’t have Down Syndrome. It may look like that, but the test would come back clear. Wouldn’t it?

I had to sort through what was numb denial, what was actually happening, and what might happen in the future. God might have promised me life and health, joy and peace, but at that moment I was facing sickness, fear, and sadness.

At my command, Rick left my side to be with Redmond and calmly talked to him and held his hand so our baby would sense something familiar in all the chaos. When I squeaked out the words “Down Syndrome” and “sickest baby in the NICU” to my sister, barely able to make my mouth form the words, she dropped everything and flew to my side. When the doctors determined that Redmond needed the last-resort heart and lung bypass (ECMO), my mom came to be with us. My dad, who was working and couldn’t take time off, hit his knees. For that first week of my son’s life, my dad fasted and prayed. He barely slept, waking every few hours to get back on his knees and pray some more. He prayed for Redmond, but he also prayed for me and the rest of our family.

When fear tried to take me over, I had a husband like a rock, standing firm and telling me it was all going to be okay, I had a sister and mother helping me laugh and letting me cry. I had a daddy interceding for me. He reminded me that I found strength and felt God’s presence in music. Thanks to his prompting, I turned on the praise music and sang my heart out.

Every morning while I got ready to go to the hospital, I sang. When I went to the pump room for 20 minutes every three hours, I listened to praise music and sang. I sang over my son. I sang praise to God. I couldn’t concentrate to read the Bible much. I barely had words to pray. But I sang and sang and sang. Phrases that stand out to me from that time…

The waves and wind still know His name
It is well with my soul
This mountain that’s in front of me will be thrown into the midst of the sea
Through it all, through it all
My eyes are on You
Through it all, through it all
It is well.

When I listened to the words of the doctors and nurses, when I got my eyes off Jesus, fear snuck in. I’d often find myself staring at objects, trying to figure out if I was crazy for believing that my baby would be okay, if I needed to accept reality and stop living in denial. But I had this peace that he’d make it through. We’d take this precious boy home with us. He wouldn’t need heart surgery. Surely by the time we left, he’d be off oxygen and his feeding tube.

During my pregnancy, “It’s Your breath in our lungs, so we pour out our praise, pour out our praise…” were song lyrics that swept over my heart. I’d think of the baby growing inside me and pray for his lungs. Another song that ministered to my heart said, “Your love is like radiant diamonds, bursting inside us, we cannot contain… God of mercy, sweet love of mine, I have surrendered to Your design. May this offering stretch across the sky, these hallelujahs be multiplied.” I’d think of the cells inside me, dividing and growing (bursting!), only able to be contained for about 9 months. I’d think about my “offering”, submitting to another difficult pregnancy and trying so hard to be gracious and patient through it, and beg God to honor my sacrifice. As I sang those songs, there was no medical evidence that he had any issues at all.

My main problem finding peace during the storm was not questioning God, but questioning myself. Was I sane to believe Redmond would be okay? Was the peace I felt actually shock and denial or a gift from God? Or both?

Much of my fear stemmed from the knowledge that God is running the universe. He has very seldom seemed to take my wants or desires into account as He does, so I braced myself for the gut punch of disappointment, the disbelief that what I had hoped for was gone. My brain played tricks on me. Strong medication taken for pain from surgery affected me. I felt acid rising in my throat, burning me when I tried to pray for God to save Redmond’s life and heal him. Hope and peace were mingled with fear and dread. Surely God would do what was ultimately best for us, but how much was I going to hurt in the process?

I submitted myself to His will and waited to see what He would do. I asked my friends to pray because I couldn’t. I allowed the Holy Spirit to intercede for me with those groans I hear so much about.

Romans 8:26 – 27 says, “Likewise the Spirit also helps in our weaknesses. For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us with groanings which cannot be uttered. Now He who searches the hearts knows what the mind of the Spirit is, because He makes intercession for the saints according to the word of God.” (NKJV)

Please save my son, Lord. But not my will but Thine be done.

I kept hearing the words, “He spared not His own son.” I had no guarantee that He would spare mine.

Please hear this point before you close your computer and shut out these horrific thoughts… Please understand me. I knew that if God did not spare my son, He would give me the grace to get through the horrific loss. I had no doubt that if my son didn’t make it out of that place alive, God was indeed running the universe and it was somehow in His perfect will for my life to take Redmond home so early. The thought horrified me, but even in the worst moments, I knew that God would walk me through it all. I was not alone.

Knowing so well that God owes me nothing, that any loss I face is nothing compared with the trauma of His own son’s death, I relish even more, savor, and bask in the beautiful YES that He gave me.

My precious baby boy, a cuddly bundle of smiles and love, sleeps soundly in my arms. This baby who came so close to death, who should be terribly delayed and have all kinds of problems as a result of the very medical interventions that were used to save his life, appears to be doing just fine. He coos and “talks”, sings with me. He actively rolls from back to front and back again, chewing on his thumb and reaching for toys. He laughs out loud, startling himself with the sound. He’s growing like a weed, wearing nine-month sleepers at 4.5 months old. He sighs deeply when he sleeps, burying his face in my neck, and tries yet again to pull the oxygen tube out of his nose.

He’s still on a feeding tube, still needs supplemental oxygen, which I wish away many times every day. But after all he’s been through, what are these little annoyances? I adjust my attitude to thanking God for these tools that I have to keep Redmond healthy, thriving, and growing. He should’ve had hearing loss, but he hears perfectly. He should’ve needed heart surgery, but the holes in his heart are closing. Pulmonary hypertension is GONE. He’s active, alert, and cheerful. He sleeps through the night like a little champ.

The chromosome test for Down Syndrome came back positive, and it took us a while to deal with that. He has an extra chromosome, which was present at conception and not a result of the complications of pregnancy or the medical treatment he needed early on. With it comes low muscle tone and the possibility of many other physical and intellectual handicaps. I have prayed over this child though, emboldened by God’s miracles in his life so far. I pray that he has the mind of Christ, that his eyes see truth, and so on. I pray that he is ABLE, not disabled.

A few days ago, I whispered to God during a rare moment of quiet, “And please God, would you heal him from Down Syndrome?” Very swiftly and firmly, I heard a voice whisper back, “It’s a gift.”

My heart lurched.

Many parents of children with DS report that they feel very lucky to have a child with DS, and Rick and I have shaken our heads in confusion. Why are we lucky to have a child with physical and intellectual impairments? Is low muscle tone and a congenital heart defect a gift?

But this God I serve, He works in mysterious ways. What is mystery to us is great glory to Him. And so, although I cannot claim to understand at this point, I have decided to embrace this gift in the same way I embrace the God I do not understand.

My child, the one with the extra chromosome I so greatly feared, is Life and Health, Joy and Peace to me. He is Life and Health, Joy and Peace to the entire world. The fact that he has a chromosomal abnormality is not a burden, but a gift.

I will still pray for him to be completely healthy and whole, to have perfect vision and a strong body. I will still pray for him to be able to walk and talk with ease, to be able to comprehend all that he needs to understand in this world. This child, and his amazing siblings who have embraced him with all their hearts, will drive me to my knees more than anything else ever has. I will pray for all three of them with all my heart. But Down Syndrome is off my prayer list. I write this with a thankful heart, full of peace: It is our mysterious gift.

Photo credit: the beautiful, blue, professional ones are all by ErikaMarie Photography. The rest are me.

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Posted on Jun 20, 2017 in Devotional, Fertility, Health, Parenting, Spiritual Life | 7 comments

FEAR

FEAR

Although there are many things I don’t recall, fear is one thing I remember well from the first few days of Redmond’s life.

Unplanned c-section because the baby was in distress. Baby taken from me without so much as a glance. Phrases like “very sick”, “breathing problems”, “Down Syndrome”, and “NICU” scatter through my mind.

Day two of his life, words like pulmonary hypertension and oxygen levels suddenly became things I needed to understand. Lungs and heart that weren’t working right. Ventilators, nitrate, blood sugar, monitors, and nurses and doctors and help. Lots and lots of help.

“Sickest baby in the NICU.”

I was so numb and confused, in shock, the words barely phased me. But they got the attention of the nurses and doctors who cared for me after my c-section. Suddenly, less than 24 hours after surgery, I was showered, dressed, given a fist full of prescriptions, and driven to the NICU an hour away to sit with my baby, hold his hand. The baby’s doctor stared at me in shock. “Why are you here. In JEANS?” I wasn’t sure where else I was supposed to be or what I should’ve been wearing. I wasn’t sure what I was supposed to do. He gave me a lecture about how I needed to take care of myself if I was going to take care of my baby. I was to eat regular meals, sleep as much as I could, and not push myself too hard. I was to remember that I’d just had major surgery and take it easy.

I heard the doctor and followed his orders. Through blind tears, I allowed myself to be wheeled around in a wheelchair, driven back and forth from the hospital to the Ronald McDonald House, and told when to take the medications I needed for pain. I tried to sleep, but had to wake up to pump every few hours.  Then I’d wake up in a panic every morning, wondering what was happening with my baby and how I could just leave him in the hands of strangers.

The numb confusion started to lift when the phone rang early on the morning of his third day of life. We’d been told the night before that he’d made it for the first 36 hours, so he was not likely to need to be transferred for the one kind of care our hospital could not offer. But when the phone rang, we learned he was to be transported to a bigger hospital, about 40 miles away, to have the chance to go on a heart and lung bypass machine. He might not need it, but they didn’t want to wait any longer to chance it.

Redmond was very sick. He needed more help than what he could get at the hospital he was in. Suddenly, I was very aware that this was serious. My baby might actually die. I jerked into action, signing papers and asking questions and trying to focus on what each person said to me.

Emotions flooded over me. Guilt. So much guilt. I was 41 years old and the likelihood of Down Syndrome increases exponentially with the age of the mother. I had gestational diabetes that wasn’t well-controlled, in spite of my efforts. He had complications from that. If I had been in better shape. If I had tried harder. If I had listened to my gut and ignored the strange rules from the doctors and nutritionists to eat carbohydrates, he wouldn’t be so sick. Shame. I was so ashamed. Memories of studies I’d read stating that the age of the father is now known to affect the baby’s health as well flooded over me. My husband was 52.

Illogical, panicked thoughts woke me up with a jerk every time I fell asleep. I was like King David of the Bible. God took the son of King David and Bathsheba. David fasted and prayed for the child’s life, but when the baby died, he got up, washed, and ate. In my muddled state, I forgot that David was punished by God for serious sin – including murder and adultery. My son was not the result of any sin, but I had irrational thoughts that he would die and I’d have to get up, wash my face, and get on with life. (I discovered that one of the medications I was taking for pain sometimes caused people to have terrible dreams and jerk awake in a state of panic.)

I flew down to the baby’s room at the crack of dawn, walking rather than taking the prescribed wheelchair (because my husband wasn’t moving fast enough for my panicked mind), nearly hyperventilating with fear. I couldn’t breathe. I just knew I’d arrive in his room to find him gone, hospital workers waiting to tell me in person, rather than call and disturb the last peace we’d ever know.

But there he was, laying quietly, an enormous machine run by four people beeping and humming, keeping him alive. ALIVE.

I dissolved into tears, breathing for what felt like the first time in minutes, barely able to stand with the relief that flooded me. As they stared at me, I tried to explain. But the words wouldn’t come. Instead, I stumbled to his bedside, took his limp and swollen hand, and poured out the words that God placed in my heart in that moment. God had felt so far away from me, but in that moment His presence rushed in and I spoke truth.

“Redmond Samuel Wyse, you are a gift from God. Every moment of your precious life is a gift. And whether I have you for six days, six months, six years, or a lifetime, I will be grateful for every single moment. You are an answer to my prayers, and I cherish every moment I’ve had with you – every moment of that horrible pregnancy, and every fear-filled, terrible moment since you were born. You are a gift and I’m grateful for you.”

And with those words that I hadn’t felt just moments before, things changed. Love rushed in, replacing numbness and thoughts that maybe it would be better if he didn’t make it. Love replaced efforts I’d been unwittingly making to protect my heart from the pain of losing him. Love reminded me that in Christ, every life is precious and worthwhile, even the lives of babies with Down Syndrome, congenital heart defects, and pulmonary hypertension. Love rushed in, reminding me that God is greater than any fear, any doubt, and any lie from Satan.

That was very early on a Sunday morning. It would be six very long days before he’d be taken off the heart and lung bypass machine. It would be six scary days of praying that he wouldn’t have a bleeding event. It would be six days of feeling helpless, eating hospital food that was brought to me, pumping to provide milk for him when he was able to eat, sitting on bright orange chairs in front of large windows that overlooked a massive cemetery, riding in a wheelchair back and forth to the Ronald McDonald House, jumping every time the phone rang. But on the sixth day, he was taken off the machine and his heart and lungs functioned well enough to stay off it.

The next day, when he was ten days old, I was able to hold him for the first time. I cried the ugly cry, tears and sobs and gratitude all mixed into a snotty mess. He was covered in tubes, wires, cords, and contraptions. It took three people to pick him up to place him in my lap. His ventilator was pinned to my shirt. I couldn’t get close enough to kiss him until they put him back, at which time the nurse held his little head close to mine for a quick kiss. But I was holding him. I sang him songs and marveled at his tiny body, then fell asleep in a blissfully rare moment of relaxation and joy.

For a week after that, I was able to hold him once a day. One time, Rick held him, although he grumbled quite a bit about it, worried he would pull on one of the tubes going in and out of him, worried he might break the fragile boy.

When he was four days old, the day they put him on the bypass machine, I called my in-laws and asked them to bring the older kids up to meet their baby brother. I was seized with fear that he would die before they got to meet him. It suddenly became a terrible fear. How could I explain to them that the baby died if they never got to see him alive?

And so they came, arriving just moments after Redmond’s surgery to have giant tubes inserted into his neck. The tubes allowed blood to be pumped out of his heart, artificially oxygenated by the machine, then pumped back into his heart. It was a terrible time for a visit, straining the nerves of the nurses and specialists, but still very important to me.

The kids were held up by their daddy, allowed to touch the baby’s hand, and then taken out quickly. We went to a play area in the hospital where the kids could get out some energy. I sat in my wheelchair and cried, the numbness worn off, so very sad that my baby was fighting for his life in another part of the hospital. Sad that I couldn’t run and play with my older kids while I had them with me. Sad that I had ruined our perfect, lovely life, free from hardship and pain.

A few days after the bypass machines rolled out of his room, the fear in my heart began to let loose a bit. When they took him off the ventilator, the fear let go some more. Every step along the way, fear has had to go, little by little.

Today, at home with weeks having passed without any need for hospitalization, fear only pops up from time to time. It’s still hanging around, but it isn’t hovering, dark and sinister, taking up all the space in my mind.

“God hasn’t given me a spirit of fear.” It’s the truth. Fear isn’t from God. But it’s very real when a baby’s life hangs by a thread. God gave me ways to manage fear and get through it, but it was very real and present.

Those early days in the hospital, I kept looking around for someone to come and offer me a temporary fix for the fear and sadness. Where’s the wine? Where’s the Xanax? Where’s the massage therapist to work the stress out of my muscles? Where’s the counselor to help me with these crazy thoughts?

The people that kept showing up, over and over again, were my church’s pastors. They prayed. They sat and listened. My sister and mom helped me remember that in the worst of times, we laugh to get through it. We find the funny, even through our tears. The nurses and doctors didn’t offer me a temporary fix. I didn’t take one nerve pill, didn’t drink one drop of alcohol. I slept. I ate. I leaned hard on my husband. I sang praise songs. A few days before we left the hospital, I got a massage. A social worker showed up one day and helped me work through some of my guilt and shame. Then I never saw her again.

I don’t know how to wrap up this post. I could write and write and write. I’m not sure I’d ever run out of words. In fact, I have written and written. Thousands of words. I try to edit them down and just write more. In the coming months, I’ll try to post them. I’ll try to share a bit of what this has been like. And you’ll have to forgive the repeats and the stumbles and the grammatical errors. Or point them out to me so I can fix them later.

All I know to say in closing is that God has not given me a spirit of fear, but fear snuck in anyway. What God did was help me through my fear. What God continues to do today is help me through the fear. Gratitude is slowly taking over as I cuddle and nurture the sweet, sweet baby boy He placed in my arms. My heart is at peace.

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Posted on Jan 9, 2017 in Devotional | 3 comments

Family Photos

Family Photos

Rick gets a little annoyed with me for all the professional (and candid) photos I have taken and take of our family. He’s not sure it’s really “necessary.” He and I definitely have different opinions about pictures. For many years, I felt the sting of loneliness as I saw all the beautiful photo cards of my friends and family with their families every Christmas. I cherished the cards, the sweet letters that updated me on the lives of ones I didn’t get to interact with regularly, and I looked forward to the day I would have my own to share. Rick looked at the photo cards, thought “cool”, and went on his merry way. Men!

2016-11-14-12-08-11When I look at this recent photo, I’m not sure I could be any more blessed. Less than five years ago, I was single. I had hope that life with Rick would lead to joy and arms that were full of love, but I also had a lot of fear. Had we waited too long to marry, to attempt to have a family? Would we have fertility problems? Could I be happy in a rural farming community? What would family life look like for me?

God had given me a few promises to cling to, though. I tried to pray for a job, for a ministry position that would allow me to use the degree I’d earned, but as I prayed only one prayer came to my lips. I earnestly sought God for a husband, children, and a home of my own. In those times of intense seeking, I believe He gave me specific promises from His word to hang onto. One was that I would no longer be barren, but fruitful (Isaiah 54). Another was that my latter years would be greater than the former years (Haggai 2:9). That one may sound kind of odd, but there were days when despair tried to overwhelm me and I wondered if life would ever be more than a series of disappointments, constantly overlapping one another.

As I look at this photo, some much comes into perspective. Rick is a godly, loving husband who pours out his life for me and our children. I wondered if it would be possible for us to have one child, and now we’re expecting a third healthy baby. We have a beautiful home. We are healthy. Our parents are healthy, supportive, still married to one another, and in love with our children. I’m able to stay at home with our children.

2016-11-14-12-10-27-1Nothing is ever perfect, so please don’t read this list and compare your struggles to my blessing list. There are things that I still wish for with all my heart, desires that may never come to be. There are disappointments to face as we work out our new normal and come to terms with the reality of raising children and living out our lives in a community. But if I’ve learned anything in my 41 years, it’s that no matter what blessings we receive, struggles come hand in hand with them. There are problems at every level of success. Some are much better problems to have, for sure! But problems, nonetheless.

2016-11-14-12-09-14-1In pictures, we are well-groomed, smiling, wearing outfits that took time to coordinate, and showing our best selves. I feel there is a place for that. We need to see how good it is, how good it was. We need to remember with sweetness the good times. Who takes pictures of the bad times? Who wants to remember the frustration and sadness?

While I was visiting my sister recently, we went shopping with our mom, who treated us to Starbucks. I was overjoyed. She mentioned getting us Starbucks inside Target, but I put a stop to that. Oh no. I wanted a real Starbucks. I wanted to sit in comfy chairs and drink my fancy coffee and talk to my mom and sister with no children running around our feet and demanding attention.

As we stood in line and I absorbed the delicious smells, the comforting feeling the place gives me, I had to laugh. The closest “real” Starbucks to me on the farm is about 40 minutes away, so it’s a special treat to go to one when I get the chance. But what wonderful memories does it bring back to me? Memories of sitting with dear friends, typically single, drinking delicious concoctions that didn’t involve alcohol, and dreaming aloud together about the day when we’d be married and have children. We’d try to solve the problem of the latest guy we were dating, or wanted to date, or wanted to leave us alone. We’d laugh at our own drama. We’d remember past relationships, or dream up new ones. And here I stood in line, tried to soak it all in, and realized that I had what I had so longed for in those days.

I can still spend hours in a coffee shop with a friend, discussing life’s current challenges, dreaming about the future, and making new memories – no problem at all! For me, there’s a comfort in a warm, homey space that welcomes you to sit and relax with no agenda other than connecting with others. But oh how the topic of conversation has changed…

2016-11-14-12-04-32I knew this was the life I wanted, and I was not wrong.  I didn’t slap a promise from the Bible on my problems, demanding that God change my reality to better fit my plans. I earnestly sought God with my whole heart, responded to His invitation to have a relationship with Him, and allowed the Word to speak to my heart. My relationship with God is the best investment I’ve ever made. As a result of trusting that God knew what was best for me more than I ever could, I am blessed beyond measure. And I want pictures to commemorate this time in our lives! I don’t want to forget what this time was like, daughter roaring, son watching her to decide what he wants to do next, me watching it all in awe of my wonderful Savior. Thank You, Lord.

Photo Credit: ErikaMarie Photography

2016-11-14-12-08-00

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