Author: Joanna

Categories
down syndrome imperforate anus surgery

The Full Story

IA

Two little letters, vowels, that quite honestly have changed me. I have debated for a long time about how detailed I would get in sharing Ben’s medical journey. Partly for his privacy, partly because it gets pretty technical and hard to explain, but mostly it was just because it was something I was hoping to wipe away as part of Ben’s past and pretend like it never happened.

I found myself last December trying to ask for detailed prayer requests, hoping that the puzzle piece clues I was sharing would be enough. That somehow I could be vague in my prayer as well, asking the Lord to take away this difficultly without my family really having to go through it. But through it, we went.

01/17/19 dawned in with the usual mundane routine that I would have to go to my doctor’s office for the umteeth time, sit for 30 minutes on monitors checking for my contractions and watching Ben’s heart. Ever since we discovered Ben had a heart defect when I was 19 weeks pregnant, this was my routine 3 days a week. NSTs (Non-stress Test) and a once weekly BPP (Biophysical Profile) became my routine. I was looking though the archive feature on Instagram and saw that I even posted a picture commenting sarcastically on how beautiful the carpet was in my doctor’s office on this day. The first several tests were nerve-wracking, but after more than 30 of these tests, I began to think they were useless. However, at 36 weeks 4 days, my BPP showed that the amniotic fluid was all but gone, we would need to go for an emergency c-section. (Don’t ask me where it went, I still don’t know that answer. haha)

Cody and I hurried home and got our bags and met the doctor at the hospital. Anxious, but excited, we were so glad to still be in Amarillo, after doctors in Fort Worth gave us the all clear that Ben would not need to have surgery for the first several months of life. After a successful procedure I heard Ben cry and I cried, I got to kiss his sweet cheek and I sent Cody after him as he went to the NICU for testing. As any c-section mama knows, that time on the table after the baby and husband are gone can be so hard, traumatizing I have even heard, because you are just wanting to be with your baby. However, I was radiating. I had done it – I delivered Ben, in Amarillo and was awake to hear his cry. This was especially exciting for me, because I had to be put under general anesthesia with my daughter Genevieve due to a complication with the regular spinal block, so Ben, as my second child, was the first that I heard take his first breath. A special moment I will always treasure.

Mom and Ben in the operating room
Meeting for the first time.

On cloud nine, partially because of the aforementioned euphoria, partially because I was quite drugged up, I was wheeled to the recovery room where I saw Cody standing waiting for me. Confused but glad to see him I remember just saying, “We did it!” He smiled and held my hand. The anesthesiologist came in and explained some of the things to expect recovering from the procedure. Cody waited until he left the room and turned to me. I could see something was wrong and I caught my breath. Cody explained, “Ben has another congenital defect. The neonatologist is coming in to explain it. It is called Imperforate Anus (IA).” Eyes swimming, we listened as the doctor explained that Ben did not have an opening on his bottom. He explained that he was talking with the pediatric surgeons in Amarillo, but it was highly likely that Ben would need to be transferred immediately to a Children’s hospital to preform the procedure. Ben would not be allowed to eat until he had surgery.

My cloud nine euphoric balloon deflated immediately. Cody walked next to my hospital bed as I was wheeled back to a regular room where our family waited. He explained the circumstances and the neonatologist came back in to let us know that Ben would indeed be flown to Fort Worth Cook Children’s hospital to receive surgery. The nurses graciously worked with me and against protocol to get me out of bed so I could go to the NICU and see Ben. I got to hold that sweet little baby for 45 minutes before he was loaded up in what looked like an incubator being launched into space.

Mama holding Ben for the first time
Mama holding Ben for the first time, before Ben flies to Fort Worth.
Ben in the flight incubator.
Ben ready to fly.

Cody and his parents set out in a car chasing the jet. Ben received his first surgery on 01/19/19 where Cody was able to be with him and care for him. I was recovering in Amarillo from my own surgery, but was able to make it to Fort Worth the afternoon after Ben’s surgery was performed. The best way to explain his surgery regiment is to watch this video from Colorado Children’s hospital. Ben thankfully did not have any sort of connection to his renal system, but everything else is a very accurate depiction of his surgeries last year.

Ben made it to Fort Worth
Ben made it to Fort Worth.
Ben in post-op incubator.
Ben in post-op incubator.
Getting close to leaving the NICU
Getting close to leaving the NICU

01/19/19 – Ben has colostomy placed so he can begin to eat.

04/11/19 – Cardiology decided Ben’s heart is taking too large of a toll on his lungs and that we can’t wait any longer to do heart surgery.

04/12/19 – Ben has his AVSD repaired at Cook Children’s hospital.

We need to wait at least 6 months post heart surgery before attempting surgery again.

10/12/19 – Ben has his pull through surgery. This surgery creates an opening on his bottom and the doctors pulled the lower colon through the opening. This surgery was done laparoscopically, and we went home the same day. (*insert terrified wince*)

12/5/19 – Ben goes in for his colostomy closure. It is 5 days before he passes any stool, and the whole time his tummy keeps swelling and he barely eats.

12/11/19 – Doctors decide the previous surgery has failed and we must place the colostomy again. Ben returns to surgery and it is discovered that his bowel had opened internally at the surgery site causing stool to cover his abdominal cavity. The doctor did a thorough cleaning and replaced the colostomy. Back to square one.

12/15/19 – Ben develops an infection from the stool that was in his abdomen, and his wound dehisses (stitches open). We are given a wound vac and a central line to administer antibiotics.

12/23/19 – We are discharged and allowed to continue our wound and infection treatment at home.

Since the surgeries we had in December, we have taken a break from surgery all together. Ben was worn out and so were we. We needed to allow him to just be a kid again, and he has thrived. In June, we decided to go get a second opinion from Children’s Colorado and received the devastating news that the surgeries in October and December of last year have done more harm than good. Basically it all boils down to the decision to do Ben’s pull through laparoscopically. Our new surgeon, Dr. De La Torre, explained that due to the complex anatomy of the muscle structures around the anus, it is not a surgery that is well suited to be preformed laparoscopically and requires a full PSARP (<- very detailed video). He explained that because of the stool covering his abdomen and subsequent cleaning – Ben’s serosa (outermost layer covering the intestines that allows them to be slick and not stick to each other) would be damaged. That brings us to this month.

On September, 16th Ben will have the PSARP surgery. The lower part of his colon that was used during the last pull through, is damaged and will need to be removed. Dr. De La Torre will take the intestine from Ben’s current colostomy site and pull it down to his anal opening and create a new opening. He will then turn Ben over and create a new colostomy to allow the anal opening to heal. Due to the damage to the serosa, he will also preform exploratory surgery through his abdomen to release any scar tissue that may have formed since Ben’s last surgery.

So all of this long explanation, I provide, to ask you for this. Please join us in praying for these very specific prayer requests:

  • Ben is much older and much more active now, please pray he would be content to be still when his body calls for rest, and eager to engage when therapy requires it.
  • Pray the blood supply to the active part of his colon would be strong and healthy.
  • Pray that the damage to the serosa would be so minimal that little scar tissue release would be required.
  • Pray Ben’s body would be reactive and healthy to heal the surgical openings and stitches would hold well.
  • Pray for Ben’s medical team, that they would be well rested and alert when I know they are weary from the long months effected by COVID.
  • Pray that infection would stay away, and Ben’s immune system to stay strong.
  • Pray for our hearts, they are heavy and anxious in walking back into something that has caused us so much pain in the past.
  • Pray for safe travel.
  • Pray for my sweet girl, Ben’s big sister, Gennie, as she stays in Amarillo, until we get past the hospital stay in Denver.

We are so grateful for everyone walking through this journey with us. And while I am sure this blog was too much information, I hope it provides some clarity to our story that allows you to feel empowered to take these requests to the Lord. We know He is faithful to walk us through this as we enter back into a season of surgery, and we are praying for healing. Six to eight weeks after this surgery we will have the colostomy closure surgery and are praying that these decisions and surgeries provide Ben more comfort and independence as he grows. We are so proud of our guy, Ben.

Ben Today
Ben Today
Categories
surgery

1 Year With a New Heart

One year. It is hard to believe and seems long overdue all at the same time.

Last picture of Ben's chest pre surgery.
Last picture of Ben’s chest pre surgery.

On April 12, 2019 I woke at 5:30 in the morning, quickly brushed my hair and teeth, changed clothes and then scooped my little man out of bed. I prayed silently over him and snuggled him close breathing in his familiar scent and running the tip of my nose along his sweet little jaw. Our hotel room was quiet as I let his dad get ever ounce of sleep he could out of our sleepless night. We eventually were all up, dressed and ready. We applied the antibiotic cream the surgery staff gave us to Ben’s nose that would soon have a ventilator placed inside his tiny nostrils and would help our son take his first breaths for the second time in his life.

We held each other and cried and prayed, and by 6:00 we were in the car headed to the hospital. The intake was smooth and the nurses busied themselves around me taking Ben’s blood pressure, temperature, quizzing me on his past feeding schedule to make sure his stomach was empty, and graciously allowing me to hold my sweet boy all the while. We waited several hours for the surgeon to be ready, since he had a late night emergency surgery the night before. We listened to worship music and just prayed. Prayed for peace, for steady hands, for sharp minds, for confident decisions, for smooth working machines that would be functioning to keep our son alive while his chest was still and being operated on.

Waiting for surgery.
Waiting for surgery | April 12, 2019

I will never forget the feeling of a rock in the pit of my stomach as I walked him to the operating room, each step was heavy, as my heart was torn to want to run away, but knowing that this procedure was necessary to see my son live. That is truly something that I cannot adequately describe. My heart desperate to give Ben a future, and terrified that the very procedure that promised life, would be the one to take it. The nurse that helped us through our intake walked along side me, pushing Ben’s bed. She squeezed my hand, and I looked up with tears streaming. I saw compassion mirrored on her face. Tears fell from her own eyes, and that level of commitment to her job, to feel my fear and wade into the weight of the day with me, is something I will always cherish. The OR nurses met us in the hall, and promised to take their best care and would be with him for the entire procedure. And they took him from my arms.

We cried as we walked back to the waiting room where we met my mom and Cody’s parents. A strange sense of peace settled over us as the procedure got underway. Shortly after it started, my sister who lived three hours away surprised us by coming to be with us. We chatted and watched the clock and sat by the phone waiting for updates. The surgeon completed the procedure in three hours and then during the echo after the procedure, decided he wanted to make an adjustment and moved forward with opening Ben’s chest again. Ben’s cardiologist who was watching the surgery came out to reassure us that Ben was doing well and that this small adjustment would be best for Ben.

After a total of 7 hours we got a text that Ben’s heart was beating again. He was doing well. Recovery from heart surgery is nothing to downplay, but we definitely rejoiced that the scariest part was behind us.

As we were nearing the one year anniversary, and I realized it would fall on Easter, I have been drawing on the experience of Ben’s heart surgery to learn new depths of what Easter means for us. The long and heavy walk I experienced as I took Ben to heart surgery, makes me feel a closeness to the heart of Jesus as he cried for the Lord to take the cup of death away from him. He knew the life that crucifixion would bring, but this human aspect of Jesus’s experience, to wish for another way. To cry out to the Father to make another way, is a prayer I have prayed far too often over the last year.

Stopping Ben’s heart so a surgeon could operate on it, was necessary to make it whole. Jesus willingly gave up his life to pay the penalty of sin, was necessary to make man whole. And finally, the relief and rejoicing that came in hearing that Ben’s heart was beating again on its own, is what we celebrate today with Easter.

Matthew 28:6 He is not here; he has risen, just as he said.

We rejoice that He has defeated death. I am resting in this simple truth: the Lord will use any means to draw me closer to Him, to trust in His promises and allow me to point to His goodness, even in fear or despair. For I have this great hope. That because He lives, I believe He will not leave me in my fear or despair or even death. He is risen. He is risen, indeed.

IMG_2162
April 12, 2020
Categories
down syndrome

Difficult

This week I have been struck by a word that seems to be hanging out behind me, I try to ignore it, thinking if I do, it won’t tap on my shoulder and rear its ugly head. The word is difficult. I called my mom this past week about some tough decisions I needed to make, and through tears I ended up saying “Haven’t I had enough ‘hard’ this year? Can’t I get a pass?”

Later that same day I met up with a friend who just wanted to talk. I sat with her and cried as she told me she had just had a miscarriage. There I was swallowed up by the ridiculousness of thinking my silly decisions were hard. This was difficult, I sat with her and I cried.

I read this week about a new friend I have met online because both of our babies have had open heart surgery. She found out that her two year old baby girl will have to have open heart surgery again. This was difficult.

Just now while on a break from work to get some water, I scrolled through Facebook on my phone and read about two other friends who were sharing about their loss through miscarriage, rather than a celebration and pregnancy announcement. This was difficult.

Why do these things happen? Why are we confronted with diagnosis, loss, hardship, and pain? What purpose could be had in something so terrible and painful. I over this past year have had my fair share of questions and begging God for answers. Why would my little baby have life threatening conditions and have to go through traumatic surgeries to correct them?

Personally all I can do to comfort in these situations is to share what I have experienced through my questioning. There has been some relief in seeking out verses that talk about Jesus’s comfort like Proverbs 18:24 “There is a friend that sticks closer than a brother.” Or how Jesus is willing to take all of my anxiety 1 Peter 5:7 “Cast all your anxiety on Him because He cares for you.” Or Philippians 4:6 “Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving submit your requests to the Lord.” How Jesus will provide peace in Matthew 11:28 “Come to me, all who labor and are heavy laden, and I will give you rest.” And countless others, but when my own heart has been broken by “difficult” things, there is a level of disbelief in these words. How can these things be true when my heart hurts the way it does?

The most beautiful description of the character of Jesus and the truth of His words I believe is depicted in His actions regarding Lazarus. In the beginning of chapter 11 in the book of John, Jesus is contacted by dear friends of His. Mary and Martha contact Jesus to let Him know their brother, Lazarus is ill. Jesus explains to them and to the disciples that the sickness and death of Lazarus will bring glory to the Lord. Jesus knows, He will raise Lazarus from the dead and tells them this openly. When Jesus gets to the house, and Lazarus has died, Jesus sees Mary and her friends weeping and Jesus cries with them… Let that sink in. Jesus weeps even though He knows life is on the other side of the door. He knows He will walk in and raise Lazarus from the dead.

I have never before read this with such a closeness to Jesus as I have when my own heart was crushed. Jesus weeps with me even when He knows the goodness of what will come. He is not bothered or annoyed by my disbelief. He does not see me in my lowly state and say, “Joanna, don’t you know there is life everlasting? This life and its hardships don’t matter.” His heart breaks with mine, and He holds me.

My prayer is that in every difficult thing that you may go through is that you would know this in the depth of our heart. Jesus cares. Not just a little, but deeply cares for you. He sees your pain and cries with you. But the good news of the gospel is that we don’t have to sit in despair, there is life on the other side of the door. Christ came, paid the price of death, and will one day return to make all things whole. He will return to give life in its perfection.

Revelation 21:4 “He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.”

But for now, reach out, call out to Him and the people He has placed in your life. Let others help to carry the burden and cry along side you. What greater purpose could we be called to then to connect and breathe life and hope into each other.

Categories
down syndrome

Good Friday Thoughts in the Hospital

I am currently sitting on the bench at the back of my son’s hospital room. Three days ago he had open heart surgery to correct a his atrial ventricular heart defect. He has just had his breathing tube removed and he is doing great. During that procedure however, I was not. I stood frozen in the door way, hands covering my eyes even though I was peeking through. I was unable to help my crying little baby while 4 nurses and a doctor huddled around him to ensure he was doing fine as they took him off the device that was making sure he kept breathing. The doctor turned around once he was satisfied, saw me and said “Oh my goodness mom, don’t worry, he is doing great. Crying means he is breathing.” I tried my best to keep my face positive, but it was taking everything in me to not want to push everyone away so I could scoop up my little guy and comfort him. I waited patiently until they told me I could come in to soothe him; I gave him his pacifier, let his little hand grip my finger, stroked his cheek (the little space not covered by his new oxygen mask) and spoke my love all over him.

The weight of the difference of how my heart was feeling compared to the day when I found out Ben would have down syndrome crashed over me. The love a mother feels for her baby is the truest form of unconditional love I think exists in the world. That is what I wish I could go back and jam into my brain 10 months ago. I wish I could make it where nothing else mattered to me than other than the pure well being of my child. I was devastated over something that has now been replaced with a bursting love that can’t be contained. A love that makes me cower in the corner terrified of the object of my affection experiencing any type of pain. A love that makes me want to tackle someone to the ground so they stop inflicting pain on my baby.

I was so afraid of what this life of special needs would look like, and there is still so much that is a big, fat unknown, but what I know now, that I didn’t know then, is a love that would wash over it all.

That, my friends, is EXACTLY how Christ loves us. In fact, his unconditional love goes even a step further. While my fears and doubts have been all speculation over Ben’s life, Christ knows my shortcomings and ugliness in my heart, He knows every misstep and failure and He took the blame. Just as I want to throw myself into Ben’s place and take all of his pain, Christ has already done that for me. He paid my penalty for sin, through death on the cross. He has washed me and made me new.

Good Friday is right around the corner and this is what we remember. I had always heard that having a child teaches you more about Christ’s love than anything else, and that is oh so true. He is good to be there to reassure me where I fall and reminding me of His promise. That in three days He rose again proving He conquered death and promising to do the same for me. There is nothing that I could do or nothing that would happen to me that would make His love and promise fade. I can just imagine Christ is standing there heart aching when I am in pain through anything and everything that pulls me away from Him, and I can reach out to grab His hand and let the love of Lord wash over me.

Christ saw me in the midst of my sin, in the depths of my pain, in the middle of my weakness and said, “I want her, exactly her.” That is what Ben has taught me. In the middle of his pain, in the middle of his weakness, and all of his body – extra chromosome and heart defect – I am saying “I want him, exactly him,” and there is nothing that would change that. I used to be annoyed by things I would read by other mom’s of children with down syndrome when they would say something to this effect, because I felt like it couldn’t be true. How can you not wish that your child’s DNA was “correct”. But today, in this moment of feeling in my heart was completely on that little hospital bed I understand. I love Ben completely and wholly and unconditionally, not in spite of his diagnoses and needs, but because he is Ben.

And Christ knew us completely and wholly and unconditionally gave himself up for us. Remember these truths this week as we remember the Christ’s sacrifice as the truest and purest form of love.

But God showed his love for us, that while we were still sinners, Christ died for us. – Romans 5:8

Categories
down syndrome

Living by Faith

Tonight is the eve of World Down Syndrome Day, and it is the first year I have ever actually known of its existence. I now tally this up to ignorance and a general “head in the sand” experience I have had to anyone who is vastly different than me in the past. Leading up to this day has been a mix of emotions for me. I have enjoyed seeing the new community I have been thrust into, celebrated so beautifully. I have heard countless stories of many family’s experiences, and how children and adults with Down syndrome are thriving as they navigate this crazy life. But I have also experienced a heaviness. A heaviness of uncertainty.

Today, on the eve, I have even reached the point of tears, flat out not wanting my family to have to deal with all of the medical issues that my son, Ben, who has Down syndrome, is currently experiencing. Yesterday we had an appointment with his cardiologist confirming that there was not any improvement to his lung pressures making it necessary that his heart surgery be preformed sooner rather than later. He will be starting new medication with some scary potential side effects. All of this to say, I am trying my best not to be worried, but it creeps in like an ugly virus threatening to consume all of my thoughts.

So today was a day to let it in, to cry, and to try to put some of those feelings behind me. A wise and dear new friend told me today, when I let her know that I was not having a great day, “We are allowed to have these [hard, sad] feelings, but we can’t stay in that place.” It got me thinking, what does it look like to feel emotions, but not to stay in them. I believe it looks like 2 Corinthians 5:7.

For we walk by faith, not by sight.

My emotions of fear are rooted firmly in not knowing the outcomes. Whether the outcomes I fear are Ben’s surgery in a few weeks, concern for his social experience in school in a few years, or wondering about his independence as an adult, all of it is unknown.

The next steps I can take into a vast sea of unknown outcomes are steps of faith. The way I move beyond the waves of fear that threaten to swallow me is to let go and say, “I don’t know, but I will keep walking.” I will keep waking up and snuggling the lovely little boy entrusted to my care. I will not allow my fears to be what drives me and my decisions, but to allow faith to carry those burdens of concern.

In second Corinthians 5, Paul is addressing the members of the church, warning them about the evil that seeks to devour them and encouraging them to lean into their faith:

6 Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. 7 Cast all your anxiety on him because he cares for you.

8 Be alert and of sober mind. Your enemy the devil prowls around like a roaring lionlooking for someone to devour. 9 Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.

10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. 11 To him be the power for ever and ever. Amen.

Reading these reminders have empowered me to not allow what is difficult to consume me. The world suffers. Whether it is the loss of a loved one, loss of security in a job or a home, pain in either mental or physical ailments, or in unexpected news like my family has recently experienced, the enemy seeks to use all of these things to cause a person to lose hope. Even when I do not know what lies ahead, living by faith, I am combating the lies that the enemy tells me.

The enemy tells me I am not enough for Ben.

But Yahweh in me, is enough. (2 Corinthians 13:5)

The enemy tells me that I should fear the worst for Ben’s medical care.

But Yahweh holds Ben in His hands and His plan for Ben’s life is already set. (Job 42:2)

The enemy tells me that I am alone.

But Yahweh holds me close. (Romans 5:8)

These truths chase away the darkness in my heart and mind. They allow me to breathe in and rest when fear should overcome me. They allow me to rejoice in this new holiday I will celebrate for the first time tomorrow, even when I cried over that same Down syndrome today.

May living by faith continue to make me infinitely stronger than living by my sight.

Happy 3/21 World Down Syndrome Day, to you. Wear your crazy socks tomorrow and celebrate this corner of the world that you may know nothing about.

Categories
down syndrome

Ben’s Birth Story

Toward the end of my pregnancy, my doctor in Lubbock cleared me to continue to only have my monitoring done in Amarillo, rather than making the trip to see him every few weeks. Our baby’s heart was doing well and he cleared me for delivery in Amarillo, rather than Lubbock or Dallas. Our baby would not need heart surgery for several months, a huge answer to prayer! The stipulation to this arrangement was that I would need go to my OB twice a week for fetal monitoring and then a third time for a sonogram, every week until Ben’s arrival to make sure he wasn’t under too much stress. I quickly agreed and got the appointments set up at the office in Amarillo. Several weeks of testing went by with only a few tests showing small indicators of an issue, nothing to be concerned with though.

On an unusually warm January morning my husband and I got up and went to our sonogram for that week. Upon realizing the rare and beautiful weather for January coinciding with a day he had off, my husband scheduled a tee time for after our appointment. Benjamin apparently heard that happening and decided to make plans of his own.

The sonogram showed that my amniotic fluid had dropped dangerously low in that one week, and it was time to bring our little guy into the world. We were given the time to go get our bags from home and head to the hospital. Our delivery was quick and my experience with this second c-section was significantly better. I heard my baby boy cry and got to kiss his cheek before he was swept away, my husband close behind him, to the NICU to have a full work up of testing. We were concerned about his heart, but knew he was in great hands. I lay on the table talking with my nurse, OB and anesthesiologist while they finished the surgery. (A strange experience, I assure you.)

I was wheeled into the recovery room, all smiles because I had done it. I had my baby and had no complications during surgery. Cody came to meet me in the room, and said he needed to tell me something. However, he was interrupted by the anesthesiologist who came in to give his good report of how surgery went and what I should expect over the next few hours for recovery. I thanked him and turned back to Cody, finally realizing something wasn’t right. Cody explained that Ben had another defect with his digestive tract that could not have been detected on ultrasound, and would require immediate surgery before he could begin eating. I felt tears well up in my eyes as my mind and heart slowly process the news. The neonatologist came in to describe the defect in much more detail.

A few hours later when we were back in the regular room, with both sets of grandparents in the room, Cody and I explained what was going on. The neonatologist returned to tell us that the decision was made that because of his heart defect, the surgical team did not feel comfortable putting him under anesthesia in Amarillo, so far from his heart surgeon, so they would be flying him to Cook Children’s hospital in Fort Worth. Ben would be leaving within the next two hours. We all cried and held each other as it became obvious that Cody and I would be separating. Cody would go to Fort Worth to be with Ben, and I would need to stay in Amarillo to recover from surgery. Cody and his parents left to go pack and prepare a car that they would be taking. My nurse came in and told me she was going to do her best to get approval to get me out of bed before I was really supposed to so that I would get to hold Ben at least once before he was taken. After hustling around for a bit, she and another nurse brought me a wheelchair, and helped me into it. They moved so quietly and quickly, it made me feel like we were committing a crime. I am now so thankful they broke the rules for me.

I got to hold my Ben for about 45 minutes before he was loaded into what I can only describe as a gurney that looked like it was designed by NASA. As he was wheeled down the hallway, with 6 flight crew nurses following him, Gennie was allowed to put her hand in his incubator to see him for the first time. She said, “baby,” and I thought my heart would explode. Cody hugged both of us goodbye and he and his parents left for Fort Worth, chasing our baby in the air.

In a matter of hours, Ben made his whirlwind entrance and then was off to Fort Worth for surgery. My mom and sisters sat with me until the late hours of the night and I was able to get to sleep. I am grateful for all of the support we received in those first few days, and a care team at BSA that made it their mission to get me stable and cleared for discharge as soon as possible. Less than 48 hours after Ben was born I was able to get on the road to be with him. I got the call that he was going into surgery just a few hours before I left Amarillo.

He made it through surgery and I was able to be in Fort Worth with Cody for Ben’s two-week recovery. I may write another time about our experience in the NICU, but for now I will say this: we owe an enormous debt to the nurses and doctors that took care of Ben in those first two weeks of his life. They showed great patience, taking time to answer all of our questions, never making us feel rushed or unimportant. Ben healed beautifully from his surgery and while we were sent home with Ben needing much more medical care and attention than a typical baby, he has been a great joy.

This has been my greatest surprise and evidence again of God’s grace in my life. When Ben was born, he transformed from what I had imagined. The best way I can describe it is to write it this way: before he was born he was my baby with DOWN SYNDROME, now he is MY BABY with down syndrome.

The main focus is now that he is just truly my child. My child who happens to have down syndrome. I spoke with a few mother’s of children with down syndrome who told me this would happen, but it is just very hard to believe when you don’t understand. Just as he has blue eyes and dark auburn hair, he has down syndrome. And that is all.

I have continued to, and I am certain will always experience, hurt or disappointment when I feel like down syndrome does inhibit him, or cause him pain – like in these surgeries, but I honestly am not scared of it anymore. It is not the boogie man under the bed like it was before he was born. I finally am able to peek in the scary corners to see that it is just my baby.

Down syndrome, I am sure, will pose many more unknowns and challenges for us in the future, but for today it has provided me with a snuggly, sweet, almond-eyed baby for me to love. I love this little Benjamin, and I hope he will always know that.

Categories
down syndrome

Finding Rest

The past few weeks have been interesting ones. I think whenever we have trials in our own lives, it makes us more sensitive to other people in our lives. I find myself able to read other people easier, or when I reach out and ask for prayer, I get a list back of things to pray about for the other person.

I am learning to see what a great blessing this has been for me, while I have been experiencing pain. I have found great rest in community of saying, I too have been hurting. It has allowed me to take my eyes off myself for a moment and push my arm under the load a friend is carrying and try to make it a little lighter.

Over the past three weeks, I have made a new friend who has received an atypical pregnancy diagnosis, who knew about my own because of a prayer group she is a part of with my sister. My heart leapt at the opportunity to love on this acquaintance of mine because we instantly had a connection in brokenness that I have not been able to create with others who have not walked this path. I found myself wandering around TJMaxx just hours after I received a text from her explaining her situation, looking for small comforts in a candle, a journal, a fluffy blanket. All things that I know could not fill the instant heartbreak she was experiencing, but something I hoped would let her know, I saw her, and I wanted to be there for her.

I have had another friend quietly ask for prayer in return after I asked her for prayer. I have a feeling it was hard for her to ask feeling that her experience and heartbreak was somehow less than mine. Again, my heart instantly latched on, though her experience is vastly different, her mama heart was still hurting for her baby. We talked and cried and held each other. She has been my great confidant in this whole experience and again, that connection blessed me.

Yet another friend casually made a joke about not being in a good “head space” about her self-confidence, when we were out to dinner with a large group. Normally I think my mind would have pushed this off as another sarcastic remark, not worth my time to investigate. But my heart again reached out. I pushed her to tell me more and she reached out a few days later and explained. We talked again, I cried for her and tried to send as much encouragement as I could.

In all of these situations, I can’t help but turn into my faith that I know has much stronger merit, love and encouragement than I could possibly have on my own.

Galatians 2:20 reads, I have been crucified with Christ and I no longer live, but Christ lives in me. The life I now live in the body, I live by faith in the Son of God, who loved me and gave himself up for me.

I am able to be MORE than I can be, not because of extra efforts on my part or because I TRY to be a good friend, but because He is infinitely more than me. My faith allows me to surrender all of these things that are brought to me, along with my own trials and say, “Not me, Lord, but you.” I live by faith, faith in the one who loved me so much he gave himself up. He is my ultimate comfort because where I fail, he stands. Where I am tired, He persists. Where I hurt, He heals.

Because He lives,

I can face tomorrow.

Because He lives,

Every fear is gone.

I know He holds my life, my future in His hands.

I pray in your own trials you are able to find great peace in the one who lives. I pray you are able to seek out other pain in the world and point to the cross and say “That is my strength and my hope. He is the reason, I can be more than who I am when I am broken.” Find rest in that, friends. He is infinitely more.

Categories
down syndrome

Unknown

For the most part my life has played out pretty much according to plan. Even if it wasn’t planned, I can’t say it has been unexpected. As I get older the more and more I realize that this is a blessing I never knew to count. There were no surprises in the stability of my home life. My parents have always cared deeply for each other and loved on their six kids with care for each of us individually. I always had clothes, and even though I joke about having a lot of hand-me-downs, I also had a lot of new clothes to wear. I never once questioned where other needs like food or shelter would come from. Even beyond these basic necessities that I was so blessed to be oblivious to the fact that they are not a given for everyone, my life folded out naturally and easily and with a lot of goodness.

The first real experience that rocked my world, seeming to come from no where, was death. I have now lost several family members, some very tragically, and some as a relief from bodies worn down in old age. I miss them terribly. Loss is hard. Grief can be overwhelming and sneak up on you when you least expect it. Not knowing what life will look like without someone is even more difficult.

It is unknown.

That is what I am struggling with now. The unknown. If you haven’t read my previous post, here is a quick synopsis: I have received a prenatal diagnosis for Down Syndrome with my second child, Ben, and his heart is growing with an AVSD.

I do not personally know a single person with Down Syndrome. All I know is the sweet ads that I have seen run on TV featuring a person with DS (I realize this is a new privilege that I even have this exposure) or the Instagram account I have followed for the past 5 years called The Lucky Few, previously @macymakesmyday, because she did just that. Macy would make my day with a cute face or dancing at her hip hop class. But I would leave it at that. A smile, and then click my phone off and forget all about anyone in the world of Down Syndrome.

I haven’t had a friend I can turn to, and say, “You have been through this, what is next for me?” Being in an unknown space, where you don’t know even where to start to find resources to reach out to is incredibly isolating. A silver lining I am seeing in this is that I have 5 months to prepare. I have been so blessed to have family and friends who just let me talk.

They let me process.

I received the first “DS is a possibility” message from my doctor 10 weeks ago, and after follow up tests, have received the “We are almost certain he has DS” message 3 weeks ago. It is new and fresh, and I have finally gotten to the place where I am giving myself grace for that. It has been my reaction to try to put on a brave face for my family and say I was fine and that I am just taking it one day at a time. My insides were writhing in fear and anxiety of not knowing what the heck my life was about to look like. Here are a few of the things I have heard when sharing our diagnosis:

“Oh, I can’t imagine.”

”Well, I can’t imagine better parents for a child like that.”

“We will love him no matter what.”

When we found out we were pregnant with Gennie, I was scared, we weren’t trying and I just was not sure I was ready to be a parent yet. That fear pales in comparison to my fear of what parenting Ben will look like, and we were trying to have a baby this time! It seems silly to me that I would be trying to have another child, but only one that I have special ordered exactly perfect from God.

All of these things that I had been feeling and not expressing came crashing down last week. I got in touch with another mom that I have come to know through Instagram. @acefaceismyfriend or Micha Boyett is actually from my hometown as well and I have known her family for a long time, but not her personally. Almost 4 years ago, she received her prenatal diagnosis that her son Ace, would be born with Down Syndrome. Last week I stumbled my way through her old blog posts and found some things she had written about her experience in the early days of being Ace’s mom. It shook me, because this is what I had been looking for. A first hand account from a real mom, walking exactly where I am now. I will link a few of the best ones that have helped me work through my feelings here:

I sent her a message to thank her for the things she had written, and to my surprise she wrote back. Her message to me said, “I would love to chat with you more through this season. It’s so hard and the grief is real.” Waves of emotion swelled up in me and crashed through that wall I had built keeping my real emotions from penetrating my heart. Grief is what I had felt. I was grieving the loss of the son I had pictured in my head. I was sad that my day dreaming of what his life would be like and the kind of man he would become were smashed the day I heard the diagnosis. I was grieving, because the son of my imagination, was not my son at all.

All of the things people had been saying to me came from a place of love. I would say thank you, or just nod in agreement, but inside I was shouting, “But I don’t want this!” I don’t want Ben to have DS. I don’t want him or my family to have to experience these specific difficulties. I don’t want to have no idea what his life will look like. The next few days were hard, messy, and filled with allowing myself to just say out loud, all of the thoughts that I had been too ashamed of to say before.

“I don’t even know what to hope for Ben.”

“I don’t want Ben to have Down Syndrome.”

“I am really having a hard time with this, and don’t have any positive emotions about having another baby yet.”

My mom listened. My sisters listened. One of my dearest friends and a cousin listened. Cody listened. None of them tried to offer feedback or advice. They just sat with me in the gap of my sadness and listened. This has been the number one most freeing thing that I have ever experienced in my life. I allowed myself to acknowledge my fears and the unknown and then just rest.

It has allowed me to feel it, lay it down and let it go. I know I will still have hard days. Today is a hard day, but I can surrender those to the Lord. I can lay it all at His feet, say that I am unsure and allow Him to be all that I am not. I still have a long way to go in releasing it, and finding joy in this new life that is unexpected. But what a peace it brings to know that it is not by my strength or my ability that I can do any of it. It is God’s grace that allows me to live today, to have this breath, to write this blog, to pray for my sweet Ben, and to one day meet him. God’s grace will fill the spaces where I feel like I am lacking or unprepared.

His Grace is all I need.

Categories
down syndrome

A New Baby

It started with a conversation. I told my husband, Cody, that I wanted to have another baby. I said we had to hurry and start trying, because I wanted Gennie to have a little sibling close in age like my sister and I. We agreed, and after trying for just one month, we started talking that we may actually want to wait a bit longer.

After I realized I had been acting like a bit of a lunatic, with a few emotional breakdowns over small things, I decided to take a pregnancy test. We were thrilled! Baby two was on the way. We decided to do the early detection genetic testing, like we had done with our first child, Genevieve. I again waited the two weeks, giddy every day to find out what my results were. Was Gennie going to have a little sister or a little brother? Were we going to have two beautiful baby girls or one of each, a boy and a girl?

I got a call after 5 o’clock one day, but didn’t get to it. I immediately tried to call back, but since it was after hours it went to their answering service. I was so frustrated, I would have to wait almost another 24 hours to get the results. I called again in the morning, and the lady who answered the phone said she would have a nurse call me with my results. As the hours ticked by over the morning, I became more and more impatient and frustrated. How could they be taking this long to let me know if I was having a boy or girl?!

Finally I got the call, the number popped up on my phone and I hastily answered it. The voice on the phone made me freeze. It wasn’t one of the sweet nurses I had talked to before, but it was another voice I recognized. My physician was on the phone. This is the reason it was taking so long, because this was news that should come directly from my physician.

She calmly explained that the results were not normal. She explained that there was an abnormal count for Trisomy 21 in my blood. She told me that my results indicated a 38% chance of a positive result for Down Syndrome. My throat was closed, I just kept saying “ok” because that was all I could get out. The next question she asked me will always ring in my ears.

“Do you want to hear about termination options?”

My mouth, again, unable to really talk just said, “no.” I was being robotic. Just trying not to cry, she quickly assured me that we would work through this pregnancy. We would monitor the baby more closely, but that she was there for me. At this point in the conversation, I just wanted off the phone. My mind was miles away from the gender of my baby. She asked me, “Do you want me to tell you the sex?” I answered yes, and she told me, a baby boy.

I hung up and just wept. What was this? How was my baby not whole? How was he not the perfect, healthy bouncing Gerber baby that every child of mine was going to be? My mind was just racing. In an instance, the image of my two babies, siblings that shared all of their life together was shattered. The image of my life with two babies grown with families of their own seemed all, but impossible. What would this life be, shackled to a child with a disability.

I really am so ashamed of some of the first thoughts that I had about it, but that doesn’t change that they were there. I want to be honest about it, because I have had a hard time finding anything that mirrors the emotions I went through. The past 10 weeks since we found out about our little boy’s possibility of Down Syndrome has been a roller coaster.

We were first met with hope in reading and hearing several other people’s account of getting false positives in the early diagnosis testing. Then we went and did a high risk scan at 16 weeks. The doctor told us that our baby, who we have chosen to name Ben, did not show any of the soft markers for Down Syndrome. He was having a hard time getting a good picture of his heart, so he just wanted to see us back in a few weeks to see his heart better.

We were thrilled!

Surely this was confirmation that our baby was healthy! Something in the pit of my stomach though wouldn’t let me let it go. Now I know that was God’s hand preparing me for the news we would receive at the sonogram we had at 19 and a half weeks. As soon as the picture popped up on the screen, it was obvious. The wall in the middle of Ben’s heart was missing. His heart was sharing blood between the two halves. We still waited for another 30 minutes for the sonographer to finish the scan and then the doctor came in to confirm. Ben would need surgery and this specific heart defect all but confirms that our Ben has Down Syndrome. The only way to be 100% certain is to do an invasive test called an amniocentesis, that we have decided to forego.

I spoke a little bit in my last post about how I first wouldn’t let myself feel it. The first two days, I did feel peace, but I was mistaking that for telling myself I didn’t need to be sad. I am so grateful for a peace that surpassed all understanding, that I know came from the Lord, but I would tell anyone going into this type of testing, “It’s ok to be sad. It’s ok to be disappointed. It doesn’t mean you love your child any less.”

I felt like a broken record for the number of times in those interim 8 weeks, from when we were first told it was a possibility to when we got the confirmation in the sonogram. I said on repeat, “Of course we will love him no matter what, but we are praying he is healthy.” After we got the confirmation it was a few days before I would allow myself to realize that I was sad I was not having a completely healthy child, and that is ok. Just as any parent would be sad for their child to have any other defect, my baby is not whole. Allowing myself the space to feel that has allowed me to accept it. I am still processing and I plan to document my emotions as I walk through this, because I am so desperate to know what others have felt.

This road has been tough, and it is just getting started. I feel like I am standing at the beginning of a trail, and I can only see so far to his birth, and the trail turns off and I have no idea what lies beyond this pregnancy. Every mother experiences this when they become a new mom, but I feel like my fear of what is around the corner is greater, than when I was becoming a mom with my first child.

I will be patient.

I will allow myself to take steps of faith, and reach out when I am not sure. I will learn all that I can, but know that I am not equipped and I have a Father who is there to close the gap where I fall short. I will choose to rest now. I will seek the Lord, as I feel like I already have more than I ever have in my life. I will choose to walk one day at a time. I will focus on today, living each day with my sweet baby girl, and quietly hold my son inside of me where I feel like he is safest.

And for today, that is enough.

Categories
down syndrome

A Secret to Share

Anyone who knows me, knows I am the absolute WORST at keeping secrets. The only exception may be to that is my dad, but as they say “the apple doesn’t fall far from the tree.” For both of us, I believe it comes from an unquenchable thirst for loving life! When my oldest sister had her first baby, making me an aunt, I posted a picture of him to social media less than an hour after he was born. He was here! I was an aunt! I was so bursting with pride over him, I failed to realize I stole the announcement of his birth to the world from his parents. Whoops. Still sorry about that one, Britt.

I just love celebrating. When my brother sends me a new jewelry design he has worked on, I freak out and it takes everything in me not to post it all over my social media, potentially ruining an engagement surprise. My husband and I have been together for 11 years and I don’t think I have ever been able to wait for the actual day to give him a birthday or Christmas present.

Life is short.

I want to soak up every minute of it, and celebrate every tiny win. I often find myself way over excited about something and being surprised that no one else is celebrating the free donuts at work the way I am. It is something I feel like has given me a unique perspective and a way to connect with people that I otherwise may not. Joy can be infectious, and I think everyone could use a little more of it. That is why I can’t contain it.

On the flip side though, I love connecting with people where they do feel comfortable to confide in me. I love listening, and I want to know what is going on in your life. I want people to feel comfortable to share things that they have been holding in and dealing with alone. Jesus calls us to be this. I believe this is what he means when he calls us to be the salt and the light of the earth.

Matthew 5:13-16

13 “You are the salt of the earth, but if salt has lost its taste, how shall its saltiness be restored? It is no longer good for anything except to be thrown out and trampled under people’s feet.

14 “You are the light of the world. A city set on a hill cannot be hidden. 15 Nor do people light a lamp and put it under a basket, but on a stand, and it gives light to all in the house. 16 In the same way, let your light shine before others, so that[b] they may see your good works and give glory to your Father who is in heaven.

Salt preserves. Light chases away darkness. I think it is imperative that we check in on each other. There are a lot of campaigns lately for awareness around mental health. I think often times the Christian response to this is to tell people they need Jesus. While this is so true, and having the saving love of Christ in your heart, knowing that He has already paid everything, can be the greatest comfort. The body of Christ is not called to close themselves in a closet and focus internally on what Christ has already done for us. He calls us to enter the world. He calls us to get down in the painful and broken and point to Him.

People are desperate for this connection, hence the obsession with social media. There are various Harvard Business Reviews I will link, talking about how social media interaction causes a positive feeling from the hormone dopamine that keeps bringing people back because it feels good. However, this one talks about how more and more young people don’t feel like they have any meaningful relationships that are outside of their online social network. And finally this article from Psychology Today discussing the need for strong personal relationships for someone to thrive and contributes the most to a person’s happiness.

I have a very specific reason for writing this post, and it feels like I am rambling to get there, but I want the point to be met that I recognize the need for connection. I recognize the need for reaching out. I want you to know dear friend, that you are not alone. I pray desperately that you would reach to someone close to you that you have been debating about opening up to. I pray that their heart will be open to receive it without judgement so you don’t have to fear telling your secret. And to the person reading this that feels whole, I am pleading with you to check on those around you. Preserve what is good in the world from the evil that is attacking it, and be the light that enhances that world and helps chase away the darkness.

I have recently experienced some darkness, and grief. It is not the way I hope to always describe it, but it is the best way I know how to express what I have been feeling. My first reaction is to pretend it isn’t there. To ignore the pain that I feel with it, put on a brave face, and tell everyone who knows that I am ok. I have been so blessed to have people in my life that have drawn it out of me. Family that is willing to just let me cry. Friends who tell me I don’t have to be brave and that they will just listen. I received a text from a friend I have confided in that simply read, “How is your heart today?” A simple message but one that allowed me the space to be honest, it was not a good day, and I let myself admit that. Finally, I have recently connected with a woman going through my same situation a few years ahead of me, and her first message back to me was not to reassure me that everything would be alright. Instead she said she was sorry, and that she knew it was hard and I was experiencing grief.

I know I will be ok.

I know I will get past my current feelings. I know I will come to celebrate what is currently making me sad, but until then, I will allow myself to feel it and I will share this secret. It is not one to hold in alone, but to feel deeply and share.