Helpful and... less so.

I’ve gotten a lot of really interesting questions lately. Of course, when something major happens in your life, every question seems to carry a lot of weight. (“How are you?” for instance, followed by significant looks.) But one of the questions I got that’s been on my mind lately, is, “What have people said that has not been helpful to you?” What an interesting question to be asked! We have been the recipients of so much service. All of it has been given in love. But this question highlights a pretty common problem: people want to help, they just don’t know what to do, and it’s awkward for them. So I thought I would write a blog or two on what has been really helpful, verses what has been... less so. Keep in mind that this is all written from my perspective, and since everyone is different some of these things may not apply to every individual. But I’ll try to focus on things that are likely broadly applicable. ;)

Not Helpful: Advice on childbearing. 

I am of the opinion that it is probably never a good idea to tell someone how many children they should have and when they should have them. After struggling to have our first and experiencing miscarriage later, I would even advise against asking when someone is planning to have a child at all. Because for all you know, there may be a lot of pain in that answer, and besides, is another family really anyone else’s business, anyway?  Also, I am the kind of person who, immediately after even a “good” pregnancy and birth, never ever ever wants to go through that experience, again! Hah! Asking a recently-delivered mother when she’s planning on the next one is a recipe for disaster in my opinion! Add to that that this was not a normal birth. It was a difficult pregnancy followed by a shocking birth diagnosis accompanied with severe health challenges. LIFE ALTERING. So, when a couple that I had never met before in my life approached me, said they knew about our “situation” and confidently certain that they understood advised, “Don’t let this stop you from having more kids! Our daughter had a child with such-and-such issue and she had more kids and has faced her challenges brilliantly and changed the world and...” it didn’t sit well with me. I mean, good for your daughter, truly, and kids are amazing and all, but I have literally just been handed the challenge of my life. I am not your daughter and our circumstances may not be the same. I am COMPLETELY overwhelmed. Like any new mom, I can barely find time to shower, let alone face open heart surgery/a lifetime of challenges, and in my spare time contemplate having another child and “getting it right” while using this child as a platform to change the world. Just let me love the kids that I have the best that I can and let that be enough, ok? Because trust me, it’s enough. Along the same lines someone else said, “But you’ll have more kids...” which kind of sounds like we need a “redo” because this one didn’t turn out. Guys. She turned out! She is just the way God meant her to be, and I’m not going to start her life by disregarding her and moving on to the next one. 

Helpful: Celebrate my daughter’s birth and welcome her with open arms.  

 I cannot express the gratitude and love I have felt for people who have celebrated my daughter’s birth. Who have thanked me for bringing her into the world, just the way she is. Who have expressed excitement over getting to know her and watching her grow. Who have committed to be there for her, always. Who have said she’s influenced them for the better. While I didn’t appreciate being told I needed to have more kids, I did appreciate that this couple viewed their grandchild with a disability as valuable—because every child is valuable!! And no child needs to achieve a certain academic level, receive a certain award or accomplish a specific task to prove it. They just ARE. No Mom has to write a book to make her disabled child’s life “worth it.” If she does, awesome! But that child was significant all along, and his/her mother was enough, too. 

So to conclude, people mean well and I don’t want them to feel like they have to tiptoe around what they say. But it’s not helpful to give an overwhelmed mother more to do or live up to. It is helpful to be there for her, where she is. Celebrate her baby. Tell her she’s doing a great job. Love her and her child unconditionally, and offer to help lift her burdens. What she needs most is just what she’s trying so hard to give: pure love. 

 I got my girl. Just the way she’s supposed to be. 

I got my girl. Just the way she’s supposed to be. 

Interesting Facts

Sometimes people make comments that illustrate they don’t know much about Down syndrome, which I understand because I didn’t know much about it aside from stereotypes before Lydia was born. So, just for information’s sake: 

We’ve been asked if it runs in our families. Down syndrome in 99 percent of cases is not an inherited condition. Nor does it occur because of something that the mother did or was exposed to during pregnancy. In the vast majority of cases (including ours), Down syndrome occurs BEFORE conception, when either the egg or sperm contains an extra chromosome, just because. Families of those with Down syndrome refer to this as “winning the lottery” =). The only known risk factor is increased maternal age at conception, but most people who have children with Down syndrome are younger than 35 because that’s the largest childbearing age group. Now you know! 

Cleaving

My brother-in-law got married, yesterday. It was a truly beautiful and happy day celebrating the couple and the beginning of a new family. The details of the wedding, ring ceremony, and dinner were exquisite. Gold plates, twinkle lights, mountain sunsets, flower petals. It was so well planned and the results were the stuff Pinterest dreams are made of. Sweeter still were the family and dear friends who traveled from all over to share the happiness of those they love.

I’m sure it is because of where I am in life at the moment, but during the marriage ceremony and official remarks/tributes made throughout the day, I heard several times from different sources counsel about weathering the rocky places and storms of life with your spouse. Again and again I heard the counsel to cleave to one another, serve each other, and love your way through. And I remembered so many things... 

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We were babies ten years ago. So in love and so without a clue of what that meant or where it would take us.  Since our wedding day we’ve lived in four states, completed multiple college degrees, had three children. We’ve applied for jobs we’ve gotten and many we haven’t. We’ve kept each other company at parties, reunions, funerals, and in hospital waiting rooms. We’ve laughed, we’ve cried, we’ve argued, we’ve budgeted, we’ve vacationed, we’ve dreamed, and we’ve fallen in bed next to each other completely exhausted. We’ve lived a lot since our “first dance” ten years ago. We have so much living and learning left to do.

Last night I left the party early. It had been a long day, I had two rambunctious boys to put to bed, and a struggling newborn waiting at home who would need to be fed multiple times during the night. And I had a migraine that had reached “every spot of light is painful, I am literally praying I can drive home safely, all I want to do is throw up,” level. If that’s not stepping out of a fairy tale and getting back to real life, I don’t know what is.

With a healthy bit of grace and the aid of my parents who had watched our homebound baby girl so we could attend the wedding festivities, I got home and got the boys in bed before Dan walked in the door and ordered me to go to sleep. I obeyed. And although he was exhausted himself, he then took every single feeding during the night so that I could rest and get better. 

I don’t know if I’ve ever seen bags under someone’s eyes like there were under his, this morning. And I don’t know if I’ve ever loved anyone more.  

The scriptures say “Therefore shall a man leave his father and his mother, and shall cleave unto his wife: and they shall be one flesh” (Gen 2:24). You hear that as a new couple and you feel it in your heart, but as life goes by you become welded together in ways you never imagined. I don’t know how it works, but somehow exhaustion and pain and healing embrace become even more beautiful than flowers and glitz and special occasions. The mundane and sacred everyday somehow refines your relationship, purifies it, and makes it precious beyond price.

For about five sacred minutes this morning, we lay in bed lazy Sunday style and held each other. This is personal, but in that moment I felt my heart reach out to that man, bear hug itself around him and cling there. I feel the winds around us. I feel the stress and the tears and the hard. I feel fear and desperation. I feel the weight of all the challenges of this season—not just baby girl’s health, but the million other big life things we’re facing right now. And I feel him. My rock and friend and companion. The only one besides God who knows how I feel and what this is like.

 “Wherefore, lift up thy heart and rejoice, and cleave unto the covenants which thou hast made” (D&C 25:13). I’m so glad I promised myself to this man ten years ago. I’m so grateful he promised himself to me. We are not perfect and life is not perfect, but I will cleave to him always through the beautiful and hard. Because that’s what real love is, and  I’m so blessed to know it. 

 

The Heart of the Matter

I’ve never taken an anatomy course. English teachers don’t need that. I can diagram a sentence, but I cannot dissect the human body. I mean, I know my basic bodily systems and where major organs are located (...I think...), but ask me to distinguish between the heart’s right atrium and right ventricle and I’ll change the subject real fast. Because I know those things are there but exactly where and what they do besides just ‘make the heart work’...?? I have no idea.

Well, had no idea. Until Lydie was born.

According to one book I read, about 40-60% of people with Down syndrome have heart defects. Whatever the exact statistic is—it’s high. So checking out Lydia’s heart was one of the first things the doctors did. They couldn’t hear any murmur, and our first x-ray looked good. In all the prenatal ultrasounds with MFM, her heart looked perfectly healthy. It wasn’t until we got our first echocardiogram that we learned that Lydia does indeed have heart defects. Four of them.

 First echocardiogram, five days old

First echocardiogram, five days old

When you’re in the NICU (at least in ours) and they run big tests like that it goes like this: tech comes and conducts echo on child. Tech forwards test images to off-sight cardiologist. Tech speaks with cardiologist and asks if more images are needed. Tech leaves. Cardiologist reviews images that day or maybe the next. Cardiologist sends report to hospital which is reviewed by the visiting pediatrician who then conveys the information to the parents. This is all to say we 1) had to wait for the results and 2) got the results through a pediatrician reporting the cardiologist’s findings. Which makes it hard to ask questions and get detailed answers.

Dan wasn’t there when the pediatrician came to tell me the results of the echo. Wish he had been, since Dan HAS taken anatomy and probably could have explained it all to me. As it was, the soft-spoken pediatrician gently wrote down a list of conditions they had found, and when I looked confused drew a diagram for me. I recognized a few terms: “bicuspid valve” and “defect” being the primary ones. I knew what we were talking about was a big deal, but the pediatrician also said things like, “shouldn’t cause an immediate problem,” and “could fix itself over time.” So in my naïveté, I wasn’t as concerned initially as I perhaps should have been. Plus we were literally on our way out the door to have Lydia’s pictures taken for the hospital (more on that later), and I was running on the classic new mom quota of zero sleep, so my mind was a scattered mess. I’ve learned that it takes my uneducated self a couple exposures to medical information before I GET it. I’ve also learned to ask a lot of questions, take notes, and google the heck out of medical terms.

Anyway. With three echos, an EKG, an x-ray and a dozen exams in the books, this is what we know. Lydia has a bicuspid aortic valve, a VSD (hole between two ventricles), an ASD (hole between two atria), and an open PDA (tube that should have closed right after birth). She will need open heart surgery, and we are planning on that occurring sometime this summer.

It is a major blow and continues to be an enormous source of stress for me. Once again this is not the way things were supposed to go and is something you would never want your child to have to face, but here we are.

Having said that, the surgical procedures that they will perform on her are very common and straightforward, and we have access to an outstanding children’s hospital and surgeons, for which I am grateful.

It’s just open heart surgery. On my baby.

I wish I could leave you with a peppy, optimistic view of the thing, but it all weighs pretty heavily sometimes. Not all blogs have to have a moral, right? Especially the kind of blog that is unfolding in real time as you learn to deal with life and that you write so people can know what you’re going through but you don’t have to experience the pain of explaining it a million times?

Having said that, the prognosis is quite positive and the doctors tell me that once she has the surgery, she will likely lead a normal, active life. Her heart condition does affect a number of things right now—primarily energy levels and her ability to eat/gain weight, but we’re working through it. I will be glad once we have the procedure done and it can help her.

The last two months have tested me beyond anything I ever imagined. Things I never considered happening in my life plan are now realities. I’m not a natural crier, but I tear up more than usual. I eat ridiculous amounts of dark chocolate. I pray, I study, I call my mom, I avoid awkward conversations with strangers (and sometimes anyone), and I crash in bed at night. Sometimes there is so much to feel that I just don’t feel anything.

But I also sit and hold my baby and stroke her soft head and force feed her a million times a day so she can gain weight and just try to take it one day at a time and be grateful that we have her. Because she’s the sweetest, her smile is adorable, and her snuggles fill my heart. Sometimes when she’s sleeping I stare at her long eyelashes, analyze the red tint to her hair, or just listen to her breathe. In those moments I do feel. In those moments there’s joy and even peace.

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Birth Story

Preface

Journal Entry for March 29, 2018

“I wonder if I opened up this journal and wrote ‘my heart hurts’ every day if it would eventually hurt any less?”

That is the first and only thing I have been able to write in my journal since Lydia’s birth, so far.  Because it’s hard. To relive the memories and the emotions and honestly write them down is hard. But now, now that she’s six weeks old, I’m caught between “I need to write it down… maybe I’m finally ready…” and “If I don’t write it down now, I’m going to forget.” So we are going to try.

But if it’s hard to write, I’m sure it will be hard to read, so if you’re feeling judgmental or weepy, maybe just don’t. Especially since it took an incredible amount of courage and vulnerability to write these things down. And for those who keep going, and maybe even Lydia herself who might read this one day, just know that this is a real life example of “opposition in all things,” “for if they never should have bitter they could not know the sweet.”

 One week before delivery-day.

One week before delivery-day.

 

***

“Did you know? Did you have any idea?”

It’s the question that everyone asks. Friends, neighbors, nurses, technicians. Everyone wants to know: did we know? The short answer is, no. We did not. It wouldn’t have made much difference if we had—we would have still welcomed our girl with open arms—but maybe I would have been a little more prepared for our first meeting.

Of course, I was flagged at my 20 week ultrasound because her lungs “looked a little bright” and her femur was measuring small. The nurse told me not to google anything before going to Maternal Fetal Medicine for a more detailed ultrasound, but of course I did. Searches for bright lungs, the primary concern, revealed a lot of scary conditions that could require surgery after birth. And the short femur, well, that IS a marker for Down syndrome, which completely freaked me out. But her brother had measured exactly the same in utero (I actually looked up his ultrasound measurements and compared them) and he was completely fine. Still, I prayed (BEGGED), “Please, Heavenly Father, PLEASE let her body be fine. Please let there not be anything majorly wrong. And PLEASE bless her to not have Down syndrome.”

So we went to Maternal Fetal Medicine, where the specialist looked her over really well in the ultrasound. They examined everything---the brain, the fluid behind her neck, her heart, her femur. After a lengthy investigation, this is what they told us: “She’s fine. Her lungs look bright because of the settings on their machine and because you scan well. As for her size, I’m not even worried about it. COULD she have Down syndrome? Well, yes. But there is nothing here to indicate it. Everything looks fine. I would say you have the same odds as anyone in the population.”

Exact words.

We had a follow-up appointment with Maternal Fetal Medicine four weeks later, just to make sure things still looked good and to make sure the placenta looked ok (there had been some questions about how the umbilical cord was attached to it). A different specialist looked at the ultrasound. The placenta issue had resolved! Again, they looked at her heart, her fluid, her size, and everything else. This specialist also confidently said, “Looks good to me! She’s fine. Congratulations! You don’t need to come back.”

So at that point, I put my fears aside. I trusted that everything was ok with about 98% of my heart. The other 2% were reserved for her birth, when, I told myself, “I’ll finally FULLY relax when I can see in person that she’s perfect.”

 

I’m shaking. My whole body is shaking, especially my hands. That’s how hard it is to relive this. To get it out.

 

We went to the hospital about 9 pm on Friday night. Dan had spent a grueling day in job interviews up in Salt Lake, then had driven home in a snowstorm, picked up the kids from Grandma’s (she babysat them while I had a doctor’s appointment that afternoon), and we learned that one child was complaining horribly about an ear ache, so Dan ended up taking him to the instacare. Meanwhile, I was in labor, and trying to decide if my water had actually broken or not (it had).  So with kids home from the instacare, antibiotics administered, everyone finally put to bed, and Grandma called to come over, we headed to the hospital where they admitted me and labor began in earnest.

I was as prepared as I could be for labor, and it went smoothly. We walked around the hospital halls, looking at the beautiful pictures of newborns that lined the walls, wondering what our sweet baby girl would look like and what she would be like. In the room I bounced on a birthing ball and Dan applied counter pressure during my contractions. It wasn’t until I hit about an 8 that I said, “You know, this day has been long enough, let’s get the epidural.” It was my first successful epidural! The anesthesiologist was great, our nurse was sweet, and we laughed and talked our way through labor, anxiously and excitedly waiting for baby girl.

Before long, I was pushing and then she was here! The cord was wrapped tightly around her neck, and she was “stunned.” They took her over to the bassinet and worked on getting her to cry. None of my kids have been criers at first, so I wasn’t worried about it. Sure enough, before too long they were handing her to me.

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The first thing I saw was a bright red face and a lot of blonde hair sticking straight up. Classic newborn attractiveness. I later realized that there is a picture of me as a newborn that looks exactly the same: swollen red face, blonde hair. Totally not my favorite picture, but also completely endearing now since my little girl looked exactly the same! But I didn’t think about that at the time, because I was busy looking closer. And that’s when I saw.

While the picture above doesn't fully portray what I saw, her face had all the markers of a child with Down syndrome—the shape of her eyes, especially. But wait! MFM had told me she was fine! And all of a sudden that 2% of doubt that I had filed away until I could see her in person came roaring back to the forefront and became my whole reality. I knew.  She did have Down syndrome. I was completely shocked and devastated.

But no one around me was saying anything. The nurses were all busy doing their thing, and nobody acted like anything completely earth-shattering and life-changing was going on. In a brief moment of privacy I turned to Dan. “She looks like she has Down syndrome to me,” I gasped. “That’s what I thought, too!” He said, equally surprised. More frantic glances at the nurses, the doctor--anybody. No response. Finally I turned to my labor nurse, who was a sweetheart, and feeling awkward and almost ashamed in that traumatic moment, tentatively asked, “So… she looks a little… different to me…” “Yes,” the nurse replied, “Someone from nursery will come up to look at her.”

And that was all.

But we knew.

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***

The nurse did come up. By a tender mercy from heaven, she “happened” to be someone who knew Dan growing up. I took so many human and child development classes in college that I lost count of them all, and as the nurse pointed out the markers to me (she couldn’t offer an official diagnosis), I knew what they meant. Poor muscle tone, low-set ears, almond shaped eyes, extra skin at the back of the neck, flat bridge on the nose, single deep crease in the hand: She has Down syndrome.

I made a decision in that moment: I was not going to deny this. I was not going to hold out false hope for the results of the genetic test to come back. This was it. This was the proof. As unbelievable and shocking and hurtful as it was, this was real.

My daughter had Down syndrome.

To be honest, I don’t remember much after that. I remember Lydia nursing well, and how happy and relieved that made me (nursing is always my biggest stress). I don’t really remember leaving the delivery room or arriving in our recovery room. I don’t remember when they took her away to the NICU or why. I do remember them telling me the pediatrician would be by in the morning and that he would be able to “tell us more,” (did that mean give us some official diagnosis?). And I remember being left alone in my room with Dan. I’d never been left without my baby after giving birth, before. It felt so wrong. Everything was wrong. But it was real. And it was night, and we were supposed to be “getting some sleep.”

Thus began the longest night of my life.

I didn’t sleep. They turned off the lights, I laid down on the bed and closed my eyes, but I didn’t sleep. I prayed. All night long.

I don’t even remember what I prayed for. Strength, probably. Perspective? Hope? That, since she was in the NICU, she’d be ok? I think I just reached out to Heaven because more than any other time in my life, I needed Heaven to reach down to me. To be with me. To help me through this. Because if I knew anything I knew this: I couldn’t do this. This was for someone stronger. Someone without my weaknesses. This was not for me. My heart was broken, and I was terrified.

Hours and hours went by. I must have at least drifted into some kind of sleep because I had the sensation of waking up and realizing that it wasn’t just a dream. The nightmare was real. My heart was sick and bleeding. My baby was still gone and Dan and I were alone in the hospital room where a picture of a “normal” newborn hung on the wall looking down at me.

“That’s not my baby,” was all I could think.

***

That was probably the low point. In the morning, the pediatrician did come in. He confirmed that she “did have several markers of Down syndrome” (I guess no one wants to give the official diagnosis in a case like that without the genetic test results to back it up). I had already accepted this, but then that sweet man took me by surprise. Tears filled his eyes as he told us, shocked and grieving parents that we were, how special children with Down syndrome are. What a blessing they are to their families and to others. He cried with us and comforted us. In our moment of tragedy and trauma he offered both empathy and hope.

It melted me.

I will love that man forever.

The NICU nurse from the night before was back, as well. When the pediatrician was finished speaking, she added something through her own tears. “You need to grieve,” she said. “It may seem strange, because you just had a baby, but this is not the child you thought you were going to have, and you need to acknowledge those feelings and let yourselves grieve.” The permission to feel the hurt was a gift. Because you feel guilty crying over a precious new baby you’re supposed to be excited about. She was beautiful and strong, true, but completely different than what we were expecting. We were traumatized. We were scared. We were in shock. It was all so much to feel. And allowing ourselves to feel the hurt was the first step toward healing.

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Thoughts on World Down Syndrome Day

I’ve always been awkward around people with special needs. Never knowing what to say or how to act. How to relate and not offend. Feeling like it was easier to just avoid interaction and keep us all comfortable. To love and respect at a distance. That was me.

And then I had a daughter with Down Syndrome and my world changed. Drastically. Pushing me way, way out of my norm and my comfort zone.

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Over the last three and a half weeks I’ve had the opportunity to care intimately for someone with special needs. To make major decisions regarding her care. To be the resident expert on her. And yes, even to be her advocate. And you know what it’s like? Basically just being a mom to my new daughter.

Not to minimize her diagnosis. It’s also been a three week crash course in Down Syndrome; reading books, meeting with doctors and social workers, arranging tests, and planning for the future. It’s been emotional and eye-opening and life-changing. But one of those life-changing elements has been learning to see with new eyes. To look at my Down Syndrome baby and see… Lydia. Lydia the person, instead of her diagnosis. Lydia with her own personality as a unique member of our family and someone new to love. Just, Lydia.

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I’m not an expert on this yet, but I hope that with practice I’ll become one. That some day *Lydia* is all I’ll see. Of course, she’s a newborn, so there is a lot that you just can’t tell, yet. But, while it does profoundly affect our lives, there’s more to her than Down Syndrome.

Who is Lydia?

First, she’s curious. While she still sleeps much of the day, when she is awake she is actively looking around, EVERYWHERE. That little head and those little eyes are going, going, going. Trying to take in the whole world around her. I love that.

Second, you should see this girl do tummy time. I remember subjecting my boys to this most miserable of newborn exercises, and they always gave it a few tries before collapsing in a face plant of infant tears. Yesterday I tentatively put Lydia on her stomach, expecting that with her low muscle tone she wouldn’t be able to do much and would quickly get frustrated. And it’s true, she struggled, but she didn’t give up. She didn’t collapse into tears. She fought. It was pretty remarkable to watch that little girl strain to lift her head, rest, then try again. She didn’t cry. She is fierce and persistent and determined. It amazed me and gave me a lot of hope. We’ll need exactly those attributes.

Finally, there’s a quiet, optimistic peace about this girl that I appreciate. She is gentle and positive by nature, and that is a gift. And she likes to cuddle, which this mama loves.

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I’m so new at this. And awkward. And incredibly imperfect and humbled. But if there’s one hope that I have for my daughter and her future, it’s that people will make the effort to get to know her and love her and respect her for who she is: Lydia. And that they’ll allow and encourage her to be her fullest self.

Today I’m grateful for all those who have gone before. For researchers and doctors and interventionists. For parents and teachers and members of society and friends who have realized that people with disabilities are people, first.

And I’m grateful for Lydia. Who came to earth as her own person, and who already is a gift and a blessing and an expert at opening her mother’s eyes.