Another day, another disheartening diagnosis

I am so frustrated, disenchanted, sad, and downright pitiful feeling right now. Eli had his BAER (Brainstem Auditory Evoked Response) hearing test this morning. He was referred to this test after spending so many days in the NICU. Instead of doing the typical newborn screen at the hospital, they just referred him for this more extensive test at Children’s. I had confided in Chuck a few day ago that I thought Eli couldn’t hear. He suggested that I not worry about it and just wait for his hearing test. Then Cody dropped something and Eli about jumped out of his skin. I started crying tears of happiness because I thought this meant he could hear. We found out today that may not be the case. He failed 3 out of the 4 tests. Fluid was not found in his inner ear which led the audiologist to believe it is not Down syndrome related. We have another test scheduled for the beginning of December to find out the extent of his hearing loss, what is causing it, and solutions to fix/repair it (God willing!).

They say God doesn’t give us more than we can handle, but seriously? I give up. Please stop. My poor baby does not deserve to have so many strikes against him. We accept the Down syndrome. We are dealing with the heart defect and impending surgery. Now you make it so he can’t hear?! I sing to my kids every night. Eli can’t hear me. I tell them ‘I love you’ numerous times throughout the day. Eli doesn’t hear that. He can’t hear when his brother says, ‘Good morning Eli’ or when his Daddy kiddingly calls him ‘Sir Poops A Lot’. Does he live in a world of complete silence? I certainly hope not. All signs point to him having some hearing in one ear. And yes, some is better than none. I’m just not sure why this all has to happen to our sweet boy. He’s already been blessed with a few “extras” that typical children don’t struggle with. Wasn’t that enough? It’s just not fair. I’m sorry, but I’m mad. I’m mad at God. I’m mad at all the people that take for granted the fact that their own children are born perfectly healthy. I’m mad that my child has to endure more. More testing, more disability, more cards stacked against him. We have learned about Down syndrome and what we can do to set our son up for success. Now we are facing a new set of challenges. I know he’s strong. He’s a fighter. Regardless, he will endure. Me, I’m not so sure about. I’m just so sad. It’s like hearing about his Down syndrome diagnosis all over again. It’s scary. The unknown. The “what ifs?”. I’m back to having fears about the future. I just want him to be accepted. To be more alike than different. Each new challenge he’s faced with becomes another obstacle he’ll have to overcome. Now and in the future. It’s just another part of him that makes him special. But not everyone (kids especially) will see that his specialness is what makes him Eli and instead he’ll just be different.

Please keep our sweet boy in your prayers as always. I also ask that you please pray for strength for our family as we face yet another challenging diagnosis.

Two doctors, one baby, a lifetime of love and respect

I thought I’d share a few pics of Eli’s nursery. For those of you who have followed my blog since our journey started, you’ll see a familiar Bible verse, Jeremiah 1:5, on the wall above his crib. That is the verse our OB, Dr. Michael Lawler, quoted to us the day we saw him after our MaterniT21 test confirmed that our baby would have Down syndrome (for the whole story read my very first post to this blog, “Acceptance”). Yesterday, at our last visit with Dr. Lawler before our c-section on Thursday, we showed him the picture of Eli’s nursery wall with that verse. We wanted him to see just how much that verse, quoted to us by him, had impacted us. It changed my perspective on everything. It led me towards acceptance.

I am forever grateful to Dr. Lawler, as well as our radiologist (ultrasound doc), Dr. Kevin Case. These two men have been instrumental on our journey. They have helped us to keep the faith. Both encouraged us at our weakest. They never implied that we should give up on our baby (sadly, many doctors do). We have been so blessed to have these two spiritual, compassionate, honest men lead us down a path we once saw as difficult. Now that we are at the end, we see the light and we give many thanks to these fine doctors for helping us get there. Please keep both men in your prayers – for they truly deserve all of life’s blessings.

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A special thank you to my amazing husband for making Eli’s room absolutely perfect!

The beginning of our journey is coming to an end

As I sit here pondering what the future holds for my family, I find myself wanting to freeze time. I am scared. This has not been an easy road for me. I am hopeful but filled with doubt. I am accepting but anxious. I am excited but terrified. I need to remember exactly what I’m feeling today. For any day now, life as we know it will change. We will no longer be a family of three. We will grow by one. I will officially be a parent to a child with special needs. I have tried throughout this process to communicate my feelings so that I don’t keep them built up. If I didn’t have my husband and this blog I cannot imagine the emotional turmoil I’d have put myself through. I am so thankful to have these opportunities to express myself.

Now, the months have given way to days and the days have turned into hours – the waiting has begun. I have found myself reflecting on this journey that we started on five months ago. At times, it has been torturous – I won’t lie. Getting a prenatal diagnosis of Down syndrome for our unborn baby was a life altering event. We experienced emotions most people will never feel, and many can never imagine. I often prayed to God to wake me up from this nightmare. But today I have realized that what I once described as a nightmare is really becoming a dream.

We are lucky enough to meet our precious baby boy in roughly 88 hours (or less if these contractions don’t stop!). Our son. The baby we rejoiced and celebrated, then grieved and worried about – will look into our eyes, our hearts, and our souls and take our breath away. Many people do not get the opportunity to meet their babies after a prenatal diagnosis – sometimes by their choice, sometimes not. Meeting our baby will take the scariness out of this prenatal journey and leave us loving a baby – not worrying about his diagnosis.

Our baby was created out of love. God has seen fit to send us a child that will teach the world about love. I know that my story has already touched some people – many have told me so. I know it has certainly changed us. I can’t even begin to imagine what impact my son will have on our firstborn, our friends, our families, and complete strangers. I hope he’ll teach them what he’s already taught me. Tolerance, acceptance, non-judgement, and the power of true love. That is where this “nightmare” turned into a dream. I realized I still had dreams for my child. I had not given up on him – and I never will. I no longer grieve for what I had “lost” but now celebrate what I have gained!

I know the road we’ll travel will not always be easy – but most trips are not complete without a few detours. That’s the best part about journeys – going off route. Stopping for ice cream. Playing in the grass. Pulling over to pet a horse. The best moments are found in the unexpected. Maybe our life had gotten a little too expected. Maybe things were too easy. Maybe we had stopped going off path. Stopped appreciating all the little things that life has to offer. The miracle of our baby has changed all that. I want to appreciate every moment. I don’t want to take anything, or anyone, for granted. I want to embrace the challenges along with the triumphs. I want to live life. Thanks to this journey I have realized that.

There is a story that has often been recommended to me about being blessed with a child who has Down syndrome. It is a wonderful read that helped me change my perspective. I’d like to share that with you.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Although I don’t agree with every statement in this story (that the pain will never, ever, ever, ever go away) I am aware enough to understand she is speaking about her experience and that I am living mine. I was lucky enough to get the new “itinerary” for our life’s journey five months ago. I will board the plane knowing it’s going to Holland. I will not be surprised when we get there. Instead, I’ll take the time to stop and smell the tulips. 🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷

Ten days!

Ten days. In ten days we will meet our baby boy. Wow. I can’t even explain the emotional state I am in. I feel excited, nervous, anxious, ready, not ready. Basically every emotion I’ve ever felt in my lifetime has resurfaced in the last 24 hours. My insecurities are coming out in full force again. Can I do this? Will I be a good mom to a child with special needs? Will we have the support we’ve been promised by friends and family? Will Eli’s arrival make Cody sad? Ahhhhh – that’s a lot of negativeness. I don’t mean for it to come across that way. I’ve just been filled with so much worry again lately. Although, the other day I saw a sign (on yet another country church) that said, “Worrying is worthless” – Ok, I get it. I guess I should listen to Him (since I’m assuming He’s in direct control of all the country church signs that we drive past! 😉) and stop worrying!

The days have been filled with some positivity too! Cody picked out his “welcome to the world” toys to give to Eli (a stuffed football and a security blankie/stuffed dog thing we call an ‘ahgoo’ in our house) and we picked out the “I’m excited to be your little brother” toy that Eli will give to Cody (a large stuffed Spider-Man, Cody’s newest character that he loves – although the only thing he’s ever seen of Spider-Man is a pair of pajamas he has!). We finished Eli’s room. Our hospital bags are packed (just in case!). We’ve spent quality time together as a family of three. It was a good, productive weekend!

I’m anxious for Cody to meet his little brother. I know he’ll feel jealous but I think part of him is excited too. Although, I’m not sure what, if anything, he expects will come out of Mama’s belly (he knows that’s where “Eli” is). I’m especially worried about not being able to pick Cody up after the c-section. We love to cuddle and he likes for me to hold him. Hopefully I’ll be able to rest and relax a lot so he can spend time cuddling with me in the bed or on the couch. Ha! Relax with a newborn! I guess I may be a bit delusional. But, rest will definitely need to be in my future. I learned after Cody was born – A happy mama equals a happy baby!

In ten short days I’ll be meeting the little man that has already changed my life for the better. I’ve met great people, opened my mind and my heart, and accepted all God’s gifts. Such a blessing! I cannot believe this part of our journey is coming to an end. Eli has changed so much in our lives. Our perspective is different. We are more accepting. I care more. I love deeper. Soon, my littlest boy will teach me more than I can ever teach him – in fact, I think he already has.

Believing

I lay here in a dark bedroom, one dog lightly snoring next to me in the warm spot my husband just left. He is now on his way to work. Something he does 5, sometimes 6, days a week, without complaint, to solely support our growing family. My old dog is pacing back and forth at the foot of the bed. He wants to get up here. He wants me to pick him up to do that. He doesn’t care that I’m too tired and pregnant to pick up his 14 year old, 45 pound body. Last night Cody woke up at 3am, and then again at 4am. As I sat there rocking him I reflected on the times I did that with him when he was a baby and then started thinking about our upcoming nights where I’ll be doing that with Eli. I spent a lot of time in that rocking chair when Cody was little. He still loves to be rocked (hence why the rocker is still in his room and not in Eli’s). It’s a ritual we do every night before bed. We read books, sing ‘You Are My Sunshine’, say our prayers, and rock. Many nights recently I have noticed my tears have wet the top of his head. I can’t help but feel a twinge of sadness. Apprehensive of
what the future for us holds. I cherish our time together, just the two of us. My little boy has taught me so much in the past two years. He taught me how to be what I am most proud of, a mommy. Yesterday, while on the way home from the grocery store, I said, “I love you Cody” to which he replied “I love you too Mama”. That was the first time he has said that so clearly. It’s usually more like, “I too Mama”. Hearing him say that melted my heart. I am excited to see how Eli changes the dynamics of our family – but it is also what terrifies me most. I’m hoping to feel a sense of completeness. I’m hoping it all ends up how it is meant to be. How God intended. It’s taken me awhile but I fully believe in His plan.

I recently read a post on a baby board about a woman who terminated her baby when she found out it had Down syndrome. Afterward, she was filled with regret and despair. Her and her husband got pregnant again and she started to feel hopeful once more. Then, at 24 weeks, her baby was prematurely born. He’s now a child with special needs. His needs are worse than those children she’s met with Down syndrome. It’s interesting how life works out. What I took from that story was that God fully intended for her to be the mother to a child with special needs. She could try and change that path but God was determined. He must’ve seen in her that which she could not. She still had regret about her previous decision, hence her post on this particular baby board. She was telling her story to ask other mommies to fully consider their decision, the emotional consequences, and what path their lives were supposed to take.

As the days fade into night and I rock my son before bed, I spend that time being thankful for our blessings. Thankful for the future. Thankful for this path that God has chosen for our family. Thankful to once again believe. Believe in the future, believe in our family, believe in myself, and believe in Him.

Echocardiogram #2

Yesterday we had our second echocardiogram. Eli was less than cooperative. The pictures they were able to gather of his heart were not the greatest. But, from what Dr. Vernon, Eli’s cardiologist, could tell it still looks like we’re just dealing with a VSD (hole in his heart). She feels it is very small (4-6mm) and will not get any bigger. She even said that it may not require surgery to fix but that she was pretty sure it would. She certainly doesn’t want to give us false hope. She was just reiterating that it was that small. Because our little guy was uncooperative, she couldn’t really determine anything else. She said he might have an AV Canal defect but if he does it wouldn’t really change up the course of action in regards to surgery, recovery, etc.

We discussed the game plan from here on out. Once Eli’s born (hopefully on the planned date of 10/25 but our boy has certainly taught us to expect the unexpected!), someone from the cardiology team at Seattle Childrens will come to Overlake (the hospital we’re having him at) to perform an echocardiogram of his heart. Depending on what time he’s born, it will either be done that day or early the following day. Dr. Vernon is guessing we’ll probably be in the hospital for a few days longer than I was with Cody – babies with Down syndrome tend to have a more difficult time feeding and are prone to get jaundice. Her “guess” is that we’ll be there 4 days. She doesn’t foresee him needing to be in the NICU for anything to do with his heart. I hope this is truly the case. Obviously, it’s hard to predict what will, or even could, happen when he’s born.

I have been told by many that when you have a child with Down syndrome, you have to learn to go with the flow. Those that know me know that I’m definitely not a go with the flow kind of person. I’m a planner. I like schedules and lists. I like to know what to expect. This diagnosis has taught me that where I once thought I was in control, I actually am not. I am following someone else’s plan for my life. God knew His plans for me long before I did. I guess it’s time to go with the flow.

There once was a young girl, Gloria Strauss, who was stricken with cancer. Her story was chronicled by a Seattle Times newspaper journalist. I followed her story closely. She was filled with so much faith. She knew where she was going if she couldn’t beat cancer. She never wanted anyone to fear for her. She had no doubts what waited for her. Her story was truly inspirational. I’ve thought of her often while undergoing my own spiritual transformation along this new journey of ours. She never wavered in her faith. She always knew. Something she once said has stuck with me. ‘Let go and let God’. I think I should listen to the advice of a wise beyond her years 11 year old little girl. I need to ‘Let go and let God’. Gloria eventually lost her battle with cancer. She continues to teach and inspire in her death, much like she did in her life. Thank you for the reminder, Gloria. I will definitely LET GO AND LET GOD. My hands are up. I surrender. He is in control. I am just along for the ride. And if I know anything, I am guessing this ride will be the adventure of a lifetime.

Footprints in the Sand

The poem ‘Footprints in the Sand’ has gotten me through some dark moments in life. My sister once visited Jerusalem and brought back a scroll with the poem printed on it. This scroll has always hung in my bedroom. After our journey with Eli started, I realized I needed to be reminded that God was carrying me – so, I moved it to the bathroom where I get ready each day. For those that may be unfamiliar with it, here’s the poem:

One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there was one only.
This bothered me because I noticed that during the low periods of my life,
when I was suffering from anguish,
sorrow or defeat,
I could see only one set of footprints,
so I said to the Lord,
“You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during the most trying periods of my life
there has only been one set of footprints in the sand.
Why, when I needed you most, have you not been there for me?”
The Lord replied,
“The years when you have seen only one set of footprints,
my child, is when I carried you.”

Written by Mary Stevenson

As you may know, I have struggled to keep the faith during this time of fear and the unknown but something always happens that brings me back around. I found this cartoon the other day and it made me laugh as I imagine this is what God may be saying to me. ☺

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Having faith

The day we received the news that we had a 1 in 3 chance of our baby having Down syndrome we went to see a genetic counselor. On the way home, we passed a small country church. On the sign of the church is a small reader board that they change with different quotes, bibles verses, or community events. On that particular day, the quote spoke directly to us and our situation. It said, ‘FAITH: Confident in hope and certainty in the unseen.’ Those words got us through the endless wait to find out the results of the blood test. Back then, I took it to mean that if we just had faith our baby would be ok. Eight days later, on the way home from the appointment where we discussed the phone call that confirmed we were the 1 in 3, I saw the quote and burst into tears. Were we not filled with enough faith? Didn’t we have plenty of hope? Was this our fault?

I passed that sign the other day coming home from the park with Cody. Two and a half months later it is still the same quote on the reader board. This time, I looked at it and smiled. We do have enough faith and we are ‘confident in hope’. That is why Eli was chosen for us. That quote speaks more to me today then it did then. We have ‘certainty in the unseen’. We are certain for our love for our child and we have faith in our future as a family.

Acceptance

May 8, 2012 at 1:15pm our world changed forever. We got the call from the genetic counselor that we had been dreading. The baby I have been carrying for 15 weeks, is not healthy. He/she has Down Syndrome. What?! How can this be? I’ve done everything right. I don’t drink, smoke, take medicine, eat foods I’m not supposed to. Why me? Why us? Cause I’m old? But I’m not old! I’m only 36. What will this do to our family? I’ve gotten mad, sad, anxious, confused. Will I be able to love this baby? What does their future hold? Bullying, dependence, frustration? What does Cody’s future hold? Constant defending? Other peoples intolerance? Jealousy? What does our future hold??? I can’t even go there right now. Everyone assures us that they’ll love the baby regardless and that they’ll always be there to support us. Will they? Will we? Can we? I have felt thoughts that I never thought I could feel about my unborn baby. Those thoughts make me angry, sad, and feel very un-mommy like. I’ve prayed for forgiveness of those feelings. Can I handle this? Can Chuck? Will our marriage survive? Is it worth risking? Right now, I don’t know the answer to those questions. I pray for clarity, for love, and for acceptance. I pray for peace. I pray that everything will just be alright.

I wrote that journal entry a few days after we found out that our baby has Down syndrome. It makes me sad to read it now. I felt so out of control. So desperately trying to understand what was happening. I’d go to sleep and wake up not remembering if it was a dream or real. I would pray it was a dream then remember it was not. We cried a lot. We stopped praying. We felt betrayed by God. We worried and worried and worried. We grieved for the child we thought we were having and didn’t know if we could ever come to terms with the child we were given.

After three long, insufferably challenging weeks my eyes were finally opened when my OB doctor (of all people!) quoted the bible during an appointment. Jeremiah 1:5 “Before I formed thee in the belly I knew thee;…”. All of a sudden, it all made sense to me. We were chosen by God to be this child’s parents. He knows we are capable of loving this child unconditionally. He picked us for him and him for us. I walked out of that appointment knowing everything would be ok. There was a feeling of calmness and acceptance that was such a new, welcomed feeling for me. Chuck still wasn’t there. He was still depressed. I feared he may never get to a point of acceptance like me. What if he never did?

A few days later we named our son. Eli Michael. There is a lot of meaning to his name that I won’t go into right now. But now our baby, our son, had a name. He was real. No longer just a scary diagnosis to us. He became ours.

We spent the following weekend on the Washington coast. If there’s a wonderful place to reflect and gain insight, it’s the beach. We were surrounded by peace. We were filled with love. As we took pictures of the three of us on the beach I had an overwhelming feeling that our family was going to be what it was meant to be. The four of us. Me, Chuck, Cody, and Eli. A family that was chosen. I took a picture of Cody playing on the beach. When I looked at the image on my camera I could not explain what I saw. Instead of one shadow standing with Cody, there were two. I just knew it was Eli. I just knew we’d be ok. That weekend was the best weekend of our lives (so far). We both accepted the child we were given. Not only accepted, but embraced.

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