It’s the way you laugh…
The way you smile…
The way you care;
You go the extra mile.
It’s the wrinkles around your eyes…
The color of your gaze…
The way you take my breath;
It sends me into a craze.
It’s the way you open doors…
The way you make me smile…
The way you make me laugh;
I’ll go the extra mile.
It’s the way I’m speechless…
The way I’m breathless…
You drive me wild;
The way you make me smile.
All I have to do is think of you.
It’s the way
You are who you are.
The way you make me smile.
Its’s the simple things…
It’s in the why you say my name…
The way you light up when you talk about your game.
It’s the way my heart beats
When our eyes meet.
It’s the way I look at my phone,
Waiting for the text tone.
It’s the way you’re a gentleman…
The way you’re genuine…
The way you talk;
It’s the way you’ve won my heart.
All I have to do is think about you.
You drive me wild…
It’s the way you are…
It’s the way you make me smile.
~ Written February of 2011 about my husband, Galen Newton.
Time
The sun sets,
The moon rises.
Where does the day go?
The clock ticks
Faster, louder.
The hours chime
Sooner, quicker.
Time goes by
And things are left undone.
No time left
To learn.
No time left
To live.
No time left
To love.
Maybe today ends
To never return
And tomorrow never comes.
So time disappears
Without a trace.
No concern for those left behind,
No pity for the abusers,
Not a single thought.
Just a steady never ending
Rhythm of a reply.
~ Written in 2003 in a creative writing class.
An Emotion
As I held a hand
So soft, so small,
I felt like a cloud
Just floating through the air.
The feeling of love
Is an unexplainable emotion,
And is one in a million
Reasons I live.
I live to watch it have
It’s first word…
It’s first step…
And it’s first tooth.
I feel like a you d child’s spinning top,
Spinning uncontrollably.
I have an emotion that
No one can understand.
But when I wake at night to hear
It’s laugh…
It’s cry…
And it’s silence…
They understand that.
A hand so soft so small.
~ Written in 1997; I was in 7th grade when I wrote this for a poetry contest. Oddly enough, I won.
Part 1: What is the Stigma Around Invisible Illness?
The “Why My Illness is Invisible” Series
“I often wished that more people understood the invisible side of things. Even the people, who seem to understand, didn’t really.” ~Jennifer Starzec
Life is inevitable. There is no pause button. My daughter and husband need clean clothes. They need a clean house and warm meals every day. My husband and daughter need me, my love, care, and attention. My three dogs and two cats need to be walked and fed every day. I have to get up, get dressed, every day; no matter the pain I am in, because I have things that need to be done.
You can’t see my illness by looking at me. You can only see the symptoms and that’s only if I let you. I don’t walk around with my surgery photos for the world to see, to prove how sick I really am. Invisible illnesses are chronic ailments that impair normal activities and daily living. They are different from other disabilities such as a paraplegic, who has to use a wheelchair because they can’t use their legs to get around. You can see what their disability is. However, I have a disability that you can’t see unless you cut me open and know what you are looking for.
The number one symptom of endometriosis is chronic pain. I have other symptoms that I will list in part 3 of this series. There is a huge stigma around chronic pain sufferers. This leads me to try to avoid letting people know I am in pain, or how much pain I am in. I’ve gotten pretty good at hiding my pain level while in public, so people around me can’t visibly tell what my pain level really is. This can lead to misunderstandings that I try to avoid because of the stereotypes and perceptions of people battling chronic pain. The stereotypes and the “stigma” of those with chronic pain is that there is an invalid judgment and labeling from friends, family, employers, and even doctors that we are weak or attention seekers. Sometimes we get labeled as lazy. Due to the current opioid crisis, we often get labeled as drug-seekers, or addicts. This is unbelievably isolating.
I have dealt with these perceptions when it comes to my chronic pain as well as the fact that my particular disorder deals with my lady parts; menstrual cycles and infertility. That’s such a taboo subject. People become uncomfortable when you start talking about your periods, bleeding, infertility, ovulation, and the general reproductive areas.
I understand that it is difficult for others to respond to my illness. It can be hard to understand and the facts of it and it can be uncomfortable to many people. The things I go through during flare ups become hard to explain to those who don’t know anything about endometriosis or reproductive illnesses. Certain aspects of my illness have a stigma around it as well. Some people believe that I suffer from hysteria, that I am emotionally and mentally unbalanced due to an imbalance of hormones. This isn’t accurate. While I will admit that I have PMS that makes me a bit difficult for my husband once a month, I can honestly say that I’m not mentally ill and in need of a holiday at an institution.
In a way, we (the sufferers of invisible illness) keep the stigma around our illnesses going because we hide ourselves on our worst days. People will see us only when we are having good, pain free days. So when they see photos online, or posts about our pain, or other symptoms on social media, they aren’t sure of the validity of our illness. It goes both ways…some people believe that we shouldn’t be able to do anything at all since we are chronically ill. So if we post pictures of us having fun, traveling, or simply having a good, pain free day, we are seen as fakers. By hiding away on my worst days, then seeing me happy, and pain free, out an about…confuses people. How can someone who is in so much pain and so sick, go out and have fun? Honestly, people would be amazed at what I do even while I am in pain. I still have a family and household to care for, even with a chronic illness.
Don’t judge people when they tell you that they have a chronic illness. Just because they look normal whenever you see them doesn’t give you the right to judge and label them. Think about how often you really see that person, in person. I can promise you, my illness embarrasses me. I want to be normal. I want to feel normal. I need those days where I am mostly pain free, those days of normalcy, to keep me going. And so do others. Invisible illnesses are the hardest for people to understand. It’s important to remember that just because you can’t see their problem, doesn’t mean that there isn’t one.
A Letter to the Daughter of a Chronically Ill Mother
“A daughter is one of the most beautiful gifts this world has to give.” ~Laurel Atherton
To My Little Bird,
You’ve always known that I was different from other mothers. You are old enough to know that mommy has endometriosis. While you may not understand exactly what that means, you know it means that Mommy is sick and is limited by pain. This is the only “me” you have ever known.
I want to apologize for those times when I am unable to do things with you. I am so sorry that I’m sick. I will make it up to you one day. I only want you to be happy. My illness isn’t your fault. The illness isn’t my fault either. I’m only human. I didn’t ask for this, nor do I deserve it. I will always try to do things with you. We may have to adjust the day we plan to play, where we play, or even how exactly we play.
You are my world. You and your father saved my life. Both of you make life worth living. Thank you for the love you give me; unconditionally, even on bad days. Your love is that light at the end of the tunnel even on my worst days. I focus on you and that keeps me going, fueling me infinitely. I love you. I pray that you will never know what endometriosis is like. I pray that you will always be happy, healthy, and pain free. Thank you, Little Bird. You are my favorite person in the whole wide world!
Sincerely,
Your “Super” Mom
A Letter to the Husband of a Woman with a Chronic Illness
I have a best friend as a husband and he is my number one supporter. He’s a family man, and he’s always giving back to God. That is what makes him a beautiful man. We’re not perfect by any means, but that makes us beautiful as well. We’re not afraid to say we’re not perfect. We have our disagreements, but that comes along with marriage. ~ Tamera Mowry
Dearest Love,
I told you about endometriosis the day we met. Things were different then. My illness hadn’t progressed very far. Endometriosis hadn’t taken over my life. I didn’t know things would change so drastically just a few years after we were married. I wish I had known how devastating and progressive endometriosis really is. I wish I had known that I would develop adenomyosis. I wish I had known that pregnancy would be so difficult for us. I would have warned you, that rainy day in February, when we met for lunch.
I carried so much baggage into this relationship. Baggage I wasn’t prepared for, baggage that I had no idea how to prepare you for. When you asked me to become your wife, you were not expecting to become a caretaker. There aren’t many men out there who would have stayed. You dove in head first. You came to every doctor’s appointment with me. You asked questions for yourself, and for me when I was too timid, too shocked, or in too much pain to do so. You’ve spent hours reading about endometriosis and adenomyosis, online and in books. You made friends with women who were like me, and introduced me to women who became my sisters. I hate knowing that you have seen me at my upmost worse. I hate feeling so weak. You have become my rock.
While other people didn’t believe the amount of pain I’ve been in, you always believed me. You understand the effort it takes me to get through a normal day. You remind me to rest on my good days; to help prevent a bad day. You remind me that the disease is just an aspect of my life, and not who I am. Endometriosis isn’t my whole life. You are always keeping me positive. When I feel like a failure, because I’m physically unable to do something our daughter wants to do, you remind me of everything that I do for you both everyday…and that tomorrow is another day. You have carried me, helped me walk, helped me in and out of the tub, picked me up off the floor, helped me sit and lay down. I’ve watched you pray over me while I screamed, cried, begging for death or relief.
I hope that I thank you enough. I hope I tell you how much I love you often enough. You and your love make my life better. I hope that I never take you, your kindness, and your love for granted. You don’t see endometriosis as a burden. You see it as our common enemy, which we need to fight together. You don’t see it as baggage. Having you in my life has been a blessing. I just hope that I’m just as much of a blessing in your life to you.
Thank you for loving me. Thank you for being my best friend and support system. I love you more today than I did when we married. I love you more, and more, every single day.
Sincerely,
Your (super strong) Wife
Are You There God? It’s Me…Alex.
“I believe if you keep your faith, you keep your trust, you keep the right attitude, if you’re grateful, you’ll see God open up new doors.” ~Joel Osteen
There are a lot of circumstances in my life that have led me to where I am now. I tell people this all the time: “you can’t move forward if you are constantly looking behind you.” I have been unsuccessful in burying my past and just hauling tail away from it. Therapy only seemed to be a band-aid because I only succeeded in putting everything in a pretty little box and hiding it in a closet somewhere deep within myself.
Recently, I told my husband that I felt like we were not going to have a baby naturally. That we should just stop trying and go for IVF whenever we were able. My husband, Galen, in his infinite wisdom, said “Do you think, maybe, that’s fear talking? Fear isn’t of God. You know that.”
“For God gave us a spirit not of fear but of power and love and self control.” ~ II Timothy 1:7
The truth is…*DEEP BREATH*…I’ve spent my whole life in the church. My mother was a pastor in the United Methodist Church. As a PK (preacher’s kid) and more specifically a preachers’ daughter, you would think that I would have developed a solid faith foundation. I didn’t. Shocking, I know! My parents both were PhD’s and intellectuals. I understood the concept of faith and how it works. Can I say that I can utilize that knowledge and understanding? NO! I’ve come to realize, during my journey for a second child, that I’ve either lost faith (in God, people, the church, and even myself) or I never had it to begin with. I am a product of my life’s many circumstances. These circumstances have brought me to a place of fear, distrust, hopelessness, and a resulting anger. I am angry.
My whole life, I’ve felt like the only person I could count on was myself. I’m beginning to learn how untrue that is, But that independence…That need to control EVERYTHING…the need for it all to be PERFECT…it created a person who was bitter, resentful, and angry.
Every fear that was whispered into my mind.. I shoved it down. I trudged on. The result was like a pot of water on the stove. I shoved all those fears, all the bitterness, all the pain, into that pot on the stove deep within me. Everyday that went by, where I was trying alone and failing was bringing the heat up higher and higher under that pot. Eventually, it started boiling. I kept trying to stifle the contents, to keep them under control by putting a lid on it. Of course, we know what happens. It will boil over. Instead of trying to swallow it all, trying to control the constant simmer from erupting into boiling over, I should have just gone to the source and cut off the heat all together.
I spent years wearing a mask to conceal not only my emotions but my pain. I thought that this would protect my heart from every disappointment, every pregnancy announcement, birth announcement, and sonogram picture. Not to mention every well-meaning comment from people who are either misinformed or insensitive. The more time that passed, the more fears were growing in my mind. I’ve come to realize that those fears, those negative thoughts, don’t agree with the word of God. I think that was the moment that I realized I’d completely lost faith. At some point, I’d stopped reading my Bible. I’d stopped praying. All my problems, I never gave over to God. I continued to worry over things. I cried to my husband about my anger and my fear. I made a confession to Galen. I may understand the premise of faith, but I don’t know how to put the theory into practice. Especially “giving it to God and letting go”.
I’ve got a lot to learn. Everyday is another day to learn, another day to grow. I’ve been looking for pure, child-like happiness. Peace. How could I have been raised in the church, a preacher’s daughter, but I’m just now realizing that I don’t have faith in God? I believe in God. I believe in Jesus Christ and that He is my Lord and savior, who died for my sins. Something happened…struggling with secondary infertility, pain from endometriosis and adenomyosis constantly, anger and bitterness have started to eat me from the inside out. How do I fix it?
I’m beginning to realize that I look at faith the way bipolar depressives and schizophrenics look at their medication and mental health. When they feel better they stop taking their medication; not realizing that it’s the consistency of their medication making them better. I read the Bible and prayed until I felt better; then I would stop. If I would keep up with my spiritual health and spiritual medication, maybe I would feel better consistently.
“I, the Lord, do not change.” ~ Malachi 3:6
So, if God is constant and the Bible says God is the healer of all wounds and illnesses, if he can give sight to the blind, bring the dead back to life, and make the barren woman fertile…why hasn’t he blessed my husband and I? Why are my husband and I suffering so much? My husband has a great faith. His faith and hope for our future is strong.
Is my lack of faith the reason we aren’t being blessed? Obviously, I haven’t done everything. No one knows us better than the Lord. If I had spent more time getting to know Him the way he knows me, strengthened our relationship, lived my life for Him instead of myself…maybe I could be genuinely happy, and blessed by Him instead of bitter, angry and lonely.
What do I do now?
Are You there God? It’s me…Alex…
I’ve doubted, questioned, argued, rebelled, ignored, and fought God. I’m a scared little girl; angry and bitter because I put my hope and faith in something other than God. I’m realizing that misplaced hope led to my disappointments. God has never let me down. If I look back at my life, He’s carried me through so many trials, kept me alive, kept me out of jail, even.
“Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not be weary, they will walk and not grow faint.” ~Isaiah 40:31
“For my thoughts are not your thoughts, neither are your ways my ways declares the Lord”. ~Isaiah 55:8
Hope doesn’t lead to disappointments. Hope gives strength to endure through the pain, the waiting, the trials.
It’s taken me almost a month to write this particular post. As I fought and cried, I realized God had been hearing me. His response has been to poke me in the forehead until I quit being a stubborn child and opened my eyes, my arms, and my heart, to Him…completely.
My focus should be on God first and foremost. My relationship with Him is more important than getting pregnant again. If I can strengthen our relationship everything else will follow.
The peace I’ve come to find in the last month has been eye opening. What is faith? Faith is knowing without a doubt that we will be okay. Faith and loving God is very similar to a marriage. I trust that my husband will never do anything to hurt me or my family. I trust that my husband will care and provide for us. We have to have open communication. It’s worth the work to keep our marriage strong. I know that the same goes for my relationship with the Lord. I trust Him. I communicate openly with Him daily. The Bible is there for guidance, support, and comfort. My life has more of a positive outlook. One I can honestly say that I have never seen before.
Are You there God? It’s me…Alex. I see You! My focus is planted and I will work hard to keep my faith rooted, growing and strong. My whole life I thought that my mother was the only constant thing I had. But it was and is You. You are the reason I have my husband and my daughter. Nothing is impossible with You by my side and in my heart. Please, Father, forgive me for being caught up in doubt and details. Continue to renew my hope and strengthen my faith. Heal me, Lord. Heal my broken heart and soul. Heal my empty womb. Heal my endometriosis and adenomyosis. Take my pain and make me whole. You are the Greatest Physician. You are the Creator and Maker of life. Help me conceive, carry without pain, and grow to full term. Bless me with an easy, trouble free delivery and quick recovery. I am joyful because I know you hear me! I know you will answer when the time is right, because my faith is not wavering and my hope is in you.
Thank you for having faith in me even when I was being a stubborn, scared little girl. I love you! In Jesus name I pray! Amen
International Bereaved Mother’s Day
Miscarriage, Spontaneous Abortion, Pregnancy Loss = I am 1 in 4
Pax
Two lines-barely visible,
Told me that you were there.
Other signs screamed of your presence...
But life's not fair.
We tried for so long;
Years you took to make.
But our happiness was gone in a blink...
Why did God choose your to take?
I didn't even get to see you.
8 months too soon.
Oh, yes! I felt you there, my love.
We were over the moon!
I knew when you were gone, Little One.
You left me as quickly as you came.
The pain rips through my heart!
I'll never be the same.
My heart is broken;
I have gut wrenching pain,
And still so many questions...
My tears fall in a torrential rain.
I can't stop thinking about you,
How I never felt you kick.
I'll never see your face.
All the while I'm just making myself sick.
Was it my fault?
Did my actions cause this?
Am I being punished for a sin unseen?
All of these I dismiss...
Have I failed my husband?
Will I never give him a son?
What of this large family
He has his heart set on?
I'm scared that I'm faulty.
That my womb is defective;
Diseased and unacceptable.
This loss was terrible;
Future losses would be unbearable.
You are forever my angel,
Named for peace to the max.
We need that now more than ever,
The perfect unborn, Pax.
Your time with me was a whisper,
But you left a resounding mark.
You will be acutely missed,
And forever in our hearts.
My God hold you close,
And love you as we do;
Always and forever,
No matter who ends up coming after you.
You were too beautiful for Earth.
I'll carry you in my heart
Since I'll never hold you in my arms.
In heaven is where your life will start.
We need hope, strength and courage.
God hear my prayer!
Take care of my precious Pax...
Because...
Life's not fair.
~Alexandria Newton August 2017
I carry your heart with me (I carry it in my heart) I am never without it. ~ E. E. Cummings
Miscarriage is a truly devastating loss. It affects not only the woman, but it affects the whole family. It’s painful physically, spiritually, mentally, and emotionally. It’s an incredibly taboo subject and many women don’t talk about their experiences with it.
It’s more common than people think. 1 out of every 4 women experience the loss of a pregnancy. It’s taboo because it’s uncomfortable to talk about. There’s a level of shame and guilt that is carried with it. We (women) feel like it’s our fault. The medical profession even calls it “spontaneous abortion”. Like my own body turned against me and ended the pregnancy. Geez! Let’s be honest…the word miscarry even sucks. It applies that I mis-carried my baby. I already beat myself up enough with out having to say, “My body failed to do it’s job and I mistakenly or wrongly carried my baby.”
During the loss of my pregnancy, I was in so much pain physically that after my doctor examined me in her office, she then sent me to the hospital for further examination. I was receiving an ultrasound and my doctor said, “Yeah, the womb is empty.” I looked at my husband as those words were being spoken. The pain on his face was real. It was tangible. He experienced that loss as deeply as I did.
My husband is hugely supportive. During every aspect and every turn of events, my husband has been right by my side, facing the pain and trials head on with me. Sometimes, he’s carried me when I’ve been unable to continue through the storm. Galen has been more supportive than any other boyfriend I’ve ever had. Once he heard I had endometriosis, he learned everything he could about my disease. He went to every doctors appointment, read all the books, and made friends with endo-sisters along with me, online. I’ve heard of boyfriends and husbands who have left their significant other because they couldn’t handle the effects of the disease. They didn’t believe that endometriosis cause their pain or that the pain was that severe. They blamed them for the miscarriages, and for the infertility. I’m beyond blessed, because my husband will actually take care of me during flare ups. He cared for me during my first pregnancy when I was put on bed rest and was stuck in bed for months. He’s carried me mentally, emotionally, and spiritually when I was struggling with the miscarriages, struggling with the physical pain, struggling with the never ending cycle of trying to conceive and lack of conception. He’s been a rock through all of it. Most men would have cheated, been absent, or just left and ended the relationship by now. But Galen hasn’t. He understands and because he has been so present, he feels everything I do. The pregnancy loss and infertility has been just as painful and difficult on him as it has been for me. Seeing his face on August 5, 2017, as we realized I was actively losing our baby, truly proved how in tune my husband is with me, my disease, and my family.
The evening before I miscarried, I was having tiny, sharp stabbing pains (like a dragging needle prick) that went across my uterine area. The pain increased through the night. I woke up that next morning and went to the bathroom. When I saw the blood, I screamed for my husband. Galen said that his heart dropped when he heard me holler for him . We both knew what was happening. We sat on the floor facing each other, locked around each other, rocking and crying. He kept saying that maybe I wasn’t losing the baby. Hearing the doctor confirm it crushed both of us.
Lord knows, we had been trying for a very long time. We were very happy to be pregnant! We (mistakenly) told people that we had finally conceived. A week or more later we had to tell those same people it was gone. I think it’s much easier to tell people later on that you had had a miscarriage at some point in time. It’s like stating a fact and people can say, “I’m sorry for your loss,” without feeling like they should say or do something more. People seem to be able to respond to statements of past events better than being informed of immediate sorrow. Our own grief and shame make it difficult for other people when you are actively with in its midst. People don’t know what to say or how to act. Seeing our grief and shame make it uncomfortable for them. It’s not their fault; it’s human nature.
I continued to talk about it for a while afterword. I believe that I needed to talk about it as a way to cope with my grief. People got to the point where they ignored me. I think they were trying to let me grieve…but I think they also didn’t know what to say. I also had to deal with my daughter after the loss. She didn’t understand any of it, and still talked about it in front of other people for months. I had a shirt for her that said Big Sister on it.
The thing about this shirt is that it won’t fit her by the time I get pregnant again. I come across the shirt occasionally and it takes my breath away. It’s a painful reminder of what we lost. Yet, for some reason…I can’t get rid of it. There are so many things that go through our mind. Loss, grief, anger, and the ever popular question “why me?” have become common place during our journey for a growing family. Nothing is truly simple. Life is too complicated for that. I’m filled with every emotion God gave us the ability to feel and express. It is up to me to choose how this turn in my infertility journey will define how I look at my future. We are forever changed by the loss of our pregnancy.
I pray that God heals my heart and replaces my pain, anger, and grief with joy and peace. I pray the same healing over my husband. Let us not lose hope…let us not lose faith. I pray Psalm 71 and 86 and ask for strength and courage to continue on this unsteady journey and that Galen and I are united in spirit and filled with peace. While we have endured so many storms, we look forward to a break in the sky and for the first sightings of a rainbow. I pray for hope to be my anchor and my stronghold. I pray for clarity and trust in His plan, not mine. I know my journey, my story, isn’t over. He has my book and is writing my ending. I put my trust in His pen. I know it will be amazing.
I will never forget this awful time, as I grieve over my loss. Yet, I still dare to hope when I remember this: The faithful love of the Lord never ends! His mercies never cease. Great is His faithfulness; His mercies begin afresh each morning. Though He brings grief, He also shows compassion because of the greatness of His unfailing love. For He does not enjoy hurting people of bringing them sorrow. ~ Lamentations 3:20-23, 32-33
Be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go. ~ Joshua 1:9
Secondary Infertility is Still Infertility.
…and you can’t compare it to anything else.
“For every EIGHT people in a room, chances are ONE of them, male or female, is suffering with infertility; a heartbreaking disease of the reproductive system-not just an inconvenience. And sometimes you don’t know who that ONE person is. Therefore can I ask a favor? [Be mindful of what you say or ask.] Because while your [comments and] questions are truly innocent, the person could be that ONE…
That ONE who just experienced a miscarriage but is silently grieving.
That ONE who the doctor has told couldn’t have her own biological child.
That ONE who despite the prayers prayed, vitamins taken, treatments given, and diet restrictions enforced. the dream of becoming a mommy is still not within her reach.
That ONE who despite her body already producing ONE miracle, can’t seem to produce another.
That ONE who has to hold their wife as she sobs over year another month gone by without seeing two pink lines.
That ONE who has to endure thousands of dollars and hours of doctor’s appointments just to be given a chance to carry life within her womb.
That ONE who feels less of a man because he has ben unable to make his wife a mother
That ONE who has been waiting countless months, even years, for an adoption match.
That ONE who can’t walk by baby aisles without shedding tears…
You see, you never know who in the room is struggling with the pain that infertility brings and how those innocent questions [and comments] could open up a painful wound. I am that ONE.
I am ONE in EIGHT. ” ~ Elisha Kearns, Author and Manager of waiting for baby bird, blog and Facebook page.
There is a reason I started off with this particular quote. It is exceptionally accurate in explaining what it feels like to have Primary Infertility and Secondary Infertility. I’m probably going to sound like I’m ranting a bit here, and I guess you could say that I am. If you notice, Primary and Secondary Infertility is just mixed into the category of “Infertility”; both descriptions are considered to be “1 in 8” people. There’s no specification. I feel like there is a huge gap in knowledge and understanding when it comes to this issue. Let’s look a what Secondary Infertility is; which is technically what my husband and I are going through. It is when a woman has successfully given birth to a child (possibly even more than one); but after that birth, they cannot conceive again, and they have possibly miscarried as well.
I have overheard comments recently where a person was comparing my situation to another couple’s situation. First of all, this is impossible to do. No infertility journey is the same, just as no pregnancy is the same. I’m constantly hearing how my situation “isn’t that bad”. Then it is followed with this gem: “They already have one child so they aren’t hurting as bad as [said couple]”. Listen up! Those of us who are suffering from Primary and Secondary Infertility don’t judge each other. We don’t sit around and say, “Oh, my suffering is worse than yours because of [this, that, and the other].” In all reality, we don’t tell people everything that is going on. Think about it; when you ask someone how they are, you don’t want to listen to all the things that are really going on….Unless they won the lottery. We don’t want to listen to Aunt Mabel talk about her bunions and diarrhea. The same goes for infertility journeys.
Let me tell you about my journey thus far and what the comments really feel like when I hear them. First, I need to tell you about my pregnancy and the delivery.
My husband and I got married May 28, 2011. I found out I was pregnant sometime in December of 2011. That’s about an eight month time span. We weren’t exactly trying, but we were passionately enjoying our marriage. So we were surprised but not completely. I had been told by doctors my whole life that I couldn’t get pregnant due to my endometriosis. My pregnancy was miserable! I was experiencing pitting edema in my legs at 4 months. 
My blood pressure was way too high. I was put on bedrest at 6 months. The headaches were horrible. Constantly keeping track of my urine output for the hospital. Finally, I started having contractions two weeks early. My daughters heartbeat would drop with every contraction which worried the doctor on call. Of course, wouldn’t you have guessed it? MY doctor went on a Disney cruise and wouldn’t be available.
So I was induced; I believe that was a Saturday evening. My labor was worse than the pregnancy. Both of us could have died; at about two separate times I actually thought that I was staring at my inevitable death. I’ll say this: God has a way of helping you forget certain pains. My husband had to help me fill in some of the details. I thankfully, don’t fully remember some of it. My water finally broke on Monday morning (July 30, 2012) at one am. I was only dilated 1cm. The contractions became exceptionally strong at that point, so the doctor offered an epidural which I jumped on quicker than a child who sees a bouncy house. That particular doctor left at 6 or 7 am. The next doctor on call…well I’ll just say that she made me really miss the first doctor. At about 8 am I was fully dilated and the nurses had me “practice pushing”. I don’t know who they were kidding! The doctor didn’t even come in while I was trying to push a watermelon out of my completely numb nether region. That “practice pushing” lasted THREE HOURS! It turned out that my daughter was face up. She wanted to see the world apparently. Being face up isn’t good. She was also stuck in the birth canal. Finally, the doctor comes in around 11am and checks me and says I need to be rushed in for an emergency cesarean. So, there I am, tied to a bed with my arms out like Christ on the cross.
My daughter is born and my husband and a nurse take her to be checked. She had a breathing abnormality they were concerned about. Backing up a bit, my anesthesiologist during the cesarean was a different one from the one who did the epidural. The second anesthesiologist had wanted to do a spinal block but the doctor on call had told him there hadn’t been time. After my husband and daughter left the operating room, the doctor started ablating (burning) off any denometriosis tumors she saw before sewing me back up. I started to feel a small pain in my lower back on the right side. So I asked if that was normal. Let me tell you how quickly that pain spread! Like wildfire! I started moving my legs, which if you know anything about an epidural you absolutely aren’t able to do. The doctor starts sewing me up and at this point I am vomiting, screaming in pain, and crying. God bless that anesthesiologist! He petted me, turned my head, wiped my face, whispered in my ear that it was going to be okay. He started screaming at the doctor and the doctor was screaming back at him. According to my husband, the anesthesiologist was yelling “If you had let me do my job and give her the spinal block this never would have happened!” He was genuinely angry at the doctor. I felt everything. I felt her burning off the tumors, I felt her sewing me up. Luckily, I don’t remember the pain anymore. My memory is that I know I felt it. I don’t remember going to the recovery room. But I do remember my husband coming in and seeing me shaking from the pain so badly that I looked like I was having a seizure. The nurse came over and wanted to push on my stomach….I’m sure that wouldn’t have hurt if the epidural had continued to work or if I had gotten the spinal block…but I was terrified and begged her not to touch me. My husband literally stood between me and the nurse (and she was an excellent nurse) asking if she could give me pain medicine first. They were able to but it didn’t make it any less painful. I was on a morphine drip for a day or two. I didn’t even get to hold my daughter until 6 pm, and she had been born at 12:11 that afternoon. I was in the hospital for a week. At one point my blood pressure was high enough that they were genuinely afraid I was going to have a stroke. They didn’t want me to leave a week later but they reluctantly let me go.
Already…you can see that I have a problem carrying a child. Pregnancy is hard for me. Just because I have a child doesn’t mean that I don’t feel the same pain as a person who doesn’t have one. My husband and I are beyond grateful for the child who survived all of that. Having her DOES NOT come close to eradicating the loss of her siblings. I do have a child, but I didn’t get to enjoy my pregnancy with her. We both almost died! I hear constantly: “When are you going to have another child?” “When are you going to give her a sibling to play with?” “You already have a child so you will be able to have another one.” Not to mention my daughter always saying she wants a sibling to play with. I feel like a failure. There is also fear. What if I do get pregnant but I end up losing another one? What if I get pregnant and something goes wrong during the pregnancy or delivery and I die? The fear is real for me. My body is defective. Do you understand that? I’ve miscarried and lost pregnancies. Every negative pregnancy test, every beginning of a period, every negative ovulation predictor test, hearing the doctor say, “The womb is empty”, and watching my husband start to sob….HEAR ME when I say that a little piece of me dies each time. I don’t go around and tell everyone this… about my feelings. Not to mention the fertility treatments. Hormone drugs are exceptionally difficult. They make me crazy! Like I don’t already feel crazy! So far the only thing left to try for me is IVF and adoption. Only one problem; I don’t have 10 grand for IVF or much, much, MUCH more than that for adoption. That’s something that people don’t know. The cost for those put people into debt.
None of this negates our struggle for conception. When I miscarried the first time, I had people telling me that their miscarriage “didn’t hurt like that”. Lucky you! Mine felt like labor. I had contractions, the urge to push and the pain was so bad that my doctor had me hospitalized. Apparently, my endometriosis made the miscarriage much more painful than normal.
Every infertility journey is different. That doesn’t make one better or worse than the other. My husband and I have no choice but to schedule sex. When your sex life is dictated by a smiley face that has pee on it, I can tell you that the romance….well it’s limited. It’s hard on the men too. They feel the pressure to perform, like the ability to conceive is on their shoulders. It’s difficult for me during that time because my pain level is very high during ovulation. Sex doesn’t hurt during the act, but I’m basically bed ridden the next day. The saying is, “Trying is the best part?” Yeah, sure. I’m on day 1,654 of trying. That’s 4 years, 6 months, and 13 days….of trying.
Lastly, infertility whether it’s primary or secondary cannot be compared to anything else. Infertility isn’t the same as wanting a house, or a car, or a puppy. Not being able to conceive or carry a child feels like you are defective…broken…a failure. Like you are not a woman. I don’t think you can compare anything else to that. Yes, I have a daughter and she, straight up, is a miracle. Every time someone says, that we aren’t going through any trials, or storms, because of our miracle daughter, they negate my pain and my husband’s pain. They negate the pan of my lost pregnancies which were very real and tangible to me. They negate the last 7 years of my life. Remember your words have power. Infertility is still infertility.
Things That Have Been Said to Me.
How I Find a Rainbow After The Storm.
Sometimes it’s hard to see the rainbow when there’s been endless days of rain. ~ Christina Greer
As someone who has suffered from pain, surgeries, miscarriage, almost dying in childbirth, the two week wait, and the inevitable BFN (big fat negative pregnancy test, followed by a horrible period), I can tell you that it’s much easier to put my feelings about all of it here than to tell the world what my life is like in real time. If you were to ask me how I am doing, I’m going to respond with a smiling “fine”.
I have told people about my trials trying to conceive, my miscarriage, and my daily struggle with pain and I get responses that are kind of painful. The thing is, I know most of the comments by friends and family are meant to be comforting. Yet, they don’t comfort me. I’m going to give you a list of things that I have heard over the years, from friends, family, and doctors. The ones from the doctors are probably the worst of the bunch. The first group is from doctors over the years.
- There is no pain bad enough to keep you from daily activities.
- Are you sure you have adenomyosis and endometriosis? I think it’s all in your head.
- It’s just normal period pain. (I had been bleeding for 6 months…but that was normal. HA!)
- If you don’t conceive in a year, you are infertile. Your only option is a hysterectomy.
- When are you going to give up trying to conceive? How much longer are you going to make yourself suffer?
- You have endometriosis? Yeah, you are infertile. With endometriosis you aren’t going to be able to get pregnant. You have no options left but to have a hysterectomy (at 29 and 30 years old, that’s how old I was when I started hearing this).
As you can see, that’s pretty bad! And that’s all from professionals! None of that is helpful or comforting. Now, let me show you what I have heard from friends and family. Here the thing about this group. I know that the majority of them are trying to be comforting and are trying to show support. For those comments, they hurt, but I know they don’t mean for them to be hurtful. Therefore, I smile and say thank you and move on. It’s the comments that I feel like I have to explain myself that really hurt. The next group is the ones that hurt because I feel like I have to explain myself.
- You were able to have one child without any problems right? Well, you can have another one. Quit worrying.
- Why bother? You have one and that’s all you need.
- You should have quit trying and had a hysterectomy years ago.
- If it’s that bad then why don’t you just have everything taken out?
- There are people out there who have it worse than you.
- See? You think that what you are going through trying to conceive is bad? HA! Look at that family. (And that family was doing exactly what we are doing. They just don’t know)
- When is enough going to be enough? When are you going to realize that you can’t conceive and you quit putting yourself through this? I hate to see you in pain. Just give up and have a hysterectomy already.
- Oh, you miscarried? Are you happy or sad?
- I heard you miscarried. I’m sorry. You know so-in-so is pregnant! We have another little boy around here!
Yeah. Those hurt. Now, then some people really truly try to be comforting. These don’t hurt as bad and I honestly appreciate the way they are trying to be supportive. However, some of these still hurt. I’ll explain after you read them.
- God will heal you, in His time.
- You will get pregnant, in His time.
- You need to quit worrying about it.
- Just relax, quit trying so hard.
- You can always adopt.
- Wait and try when you are financially strapped and struggling and in tons of debt, and that’s when you will have twins.
- Try touching ancient fertility statues at Ripley’s Believe It Or Not museum.
First of all, touching the ancient fertility statues made me laugh. I totally would have done it too, if we had been able to go while they were there. Hey, I’ll try anything! “God will heal you, in His time.” I understand where they are coming with this. I’ve heard this repeatedly since I was diagnosed at 14. I am a Christian and I believe in the healing power of God. I’ve had hands laid upon me and been prayed over more times than anyone knows. If God was going to heal me….You’d think He would have done it within the past 20 years. Instead, I’ve gotten worse. I don’t think that God is supposed to heal me. So when people say this to me, I want to tell them that God wants me to suffer with this for a reason. Here I am, writing this blog. For all I know, someone is out there reading this and maybe I can help someone with my experiences. To me, my suffering with disease, my suffering with infertility, only makes me a stronger person. God puts us through trials and tribulations for a reason. We just have to figure out what that reason is, and what we are supposed to do with it. I pray daily that God will bless me and my family with a healthy conception that I will carry full term. I have faith that it will happen…in His time, of course. I just wish he would HURRY UP!
As for the other comments…I feel like being told to relax is kind of a slap to the face. Sure! I’ll go on vacation and come back pregnant. Because total relaxation is how pregnancy happens. Yes. I can always adopt. I would love to adopt! Maybe I will get that chance one day. It’s expensive and in my opinion it shouldn’t be so hard and so costly to adopt a child. We are financially strapped and in more debt (due to college) than people would believe. So if that was true we’d have a house full of babies! I laugh at that one now. I didn’t find it so funny when it was said to me. But now, I think it’s hilarious!
For those of you reading this who are going through something similar to myself, listen closely (the same goes for those of you who aren’t going through this but you know someone who is; this is what you should say):
I’m sorry for your suffering. You are not alone. I am here for you. I will be an ear to listen, a shoulder to cry on, and a hand to hold. I will be here when you need me. I will keep you in my thoughts and prayers. I may not truly understand exactly what you are going through but that does not matter, because I am here for you.
Understand that there are always going to be storms in life. That’s what makes life interesting. What makes us strong, what keeps us going and growing, is waiting out the storm so we can see the rainbow at the end of it.
Blessed is she who had believed the Lord would fulfill His promises to her. ~ Luke 1:45
Faith is the having confidence in what we hope for and assurance about what we do not see. ~ Hebrews 11:1
Therefore I tell you, whatever you ask for in prayer, believe you have received it, and then it will be yours. ~ Mark 11:24
My Aberrant Life 