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Wednesday, May 4, 2016

Worry

Niki just finished a particularly painful infusion and cried herself to sleep. This is not the first time and it won't be the last. She has been dealing with unexplained vascular pain during her infusions for the last few years now. Some days she can deal and other days she can't. Today just so happened to be a day that she couldn't. 

During the infusion, I reminded her to breathe through the pain. We've had this talk many times before and it's always in the same tone of voice that I use when my patients complain of pain during their blood pressure checks. I can best describe it as a monotoned, but soft and encouraging voice. I'm have no outward reaction to her shrieks and cryingI prefer to panic internally for fear that any other external reaction will weaken her. Sometimes I let out just a hint of irritation and frustration when she forgets to do her breathing. She knows breathing helps and I'm usually exasperated when she doesn't do it. I know this all sounds cold and harsh, but when my parenting journey isn't as perfect as I'd like it to be, I go with what comes naturally.  I treat her like one of my patients because I hope it will empower her. I feel like babying her will make her feel the pain even more. I'm not her mom in this very  moment, I am her caregiver.

Nevertheless, no matter how many times I've coached myself to emotionally detach during times like this, the negative comments I've heard in the past (and present!) start to echo in my mind. Self-doubt rears its ugly head and I worry if I'm doing this "Mommy/Caregiver thing" right. Am harming her by not coddling her when she's in pain? Should I be gentler and more maternal? Can a "mind over matter" approach really teach a 7yo girl how to cope with physical pain for the long haul?! 

So many questions, but no answers. All I'm left to work with is an amalgam of my own beliefs and people's opinions -- both the good and the bad.  I'm in a constant state of trying to figure things out. The fear of the worst case scenario is always there. These fears quietly whisper  to come out if I'm not strong enough to to shush them away.  So what happens? I allow my moment of weakness to consume me and and let all my worries  flood my brain. Terrible, horrible thoughts take over...

The negative people are right. She truly is suffering because of her condition. What if I have another child die? What will that do to my family? My other kids are suffering because of their sick siblings. It was irresponsible for me to have children knowing I could pass along this condition. Why don't I just tie my tubes and stop trying to be so  optimistic all the same time? Get out of the cloud of happiness and face reality like a real woman! You're going about this mom thing all wrong. People are right to judge, Tiff.

I'm too hard on myself sometimes. I know it. I own it. That's just how I am.

As I stared at the tears drying on my sleeping babe's face, worrying about how much I'm screwing up as her mother, my mind drifted to a conversation that I had with my coworker earlier today.  My coworker is much older than I am and a hell of a lot more devout in her practice of the faith. She is probably one of the most content and kindest people I know. Unfortunately, she has been plagued with medical issues lately and she shared her distress and worries with me. She also expressed guilt for having those feelings. 

We talked about how hard it is to "let go and let God" sometimes. It takes a lot of strength to be able to completely cast your burdens upon Him 100% of the time. If our faith is supposed to be strong, then why do we still worry? It all feels so hypocritical. Shouldn't His presence be enough? How can one claim to have complete faith in God's plan, but still experience worry, fear, and anxiety during trials and tribulations?

During that conversation, we revisited how we believe that man has been created in His likeness. I went a little further and shared my belief that our flaws are an intentional part His creation. All of me -- the good and the bad -- was created by Him. This means that during our creation, the addition of an emotion like worry was just as intentional as the addition of contentment. I've always believed that it is a blessing to have things fear. It is a blessing to have the ability to worry and feel anxiety. It serves a purpose in our soul. Worrying helps renew our faith and reminds us to trust in God's plan. 

How many of us have bargained with the Lord during times of self-doubt or emotional distress? How many of us have ferociously prayed for guidance when something tough comes along and we don't know what to do next? Worry is there so we can reconnect with the Lord during our most vulnerable moments. Just like a child looks to her parents for comfort when she falls, we look to God for very same purpose. There is beauty to be found in the anxiety and stress of worrying. 

So here I am, several hours after that conversation, thinking about the beauty of His wonderful intentions. The downfall of being transparent and wearing my heart of my sleeve is it leaves me vulnerable. I've experienced unsolicited hurt and judgement from others along with the positive support, too. It is human for me to fear and worry about what other people think. It is human for me to have these visceral reactions to things that have potential to hurt my soul.

My heart was filled with anxiety and inadequacy earlier, but it is full of peace again. It's full because I've reconnected with God through the gift of worrying and self-doubt. I still don't have all the answers, but I find comfort in knowing that I'm not alone. Although I don't know what lies ahead for Niki, Noah, or any of my other Cubbies, I find solace in knowing that God is there for them in His perfection even when I'm flawed. Whatever it is, whatever may come, it is well with my soul. I won't worry for very long. 

Monday, November 24, 2014

Saved Seconds

Remembering to take a picture of a happy moment comes naturally to people. If you know me well, then you know that I take pictures of both the good and the bad.

Why do I do this?

Because my biggest regret about Ethan's passing was not taking pictures. At the time, I thought I wouldn't want to ever re-live that moment. Now, almost seven years later, I regret not documenting how beautiful his funeral was and how blessed we were (are!) to have so many people love and support us.

I learned long ago that there is always something to be grateful for even in the worst times. You just have to look real hard and have faith that the epiphany will come to you. Life is beautiful even at its darkest hour...believe me when I say this! While I may not always see the beauty right away, I have hope that I can look back on a specific photo of a "bad time" and learn something new about myself.

My faith plays a huge part in how I'm able to survive (and how we are able to survive as a family!) despite so many hurdles thrown our way. Being able to look retrospectively at yourself is essential to maintaining endurance...and sanity, of course. Every experience we have is a learning opportunity and there is always room for personal growth. I'm a firm believer that anyone in our shoes would be able to do the same. All parents  have the ability to channel amazing strength when it comes to their children.

So, what's the deal with this picture?

This photo was taken in the recovery room after Noah's surgery. It was a long, worry-filled day to say the least. Now that I've had the time to look back on the photos from that day, this particular photo stood out to me. It may seem insignificant, but the revelation I got while staring at it hit me like a ton of bricks.

This guy right here is my soulmate.

Our love is far from perfect, but he is one of the biggest blessings in my life. I really don't think I could endure any of this without him by my side. I often take him for granted. And... I forget to appreciate him in all the chaos that comes with raising six little lions. He brings me dinner in bed when I'm feeling sick (which is often.) He will wake up at 3am to get me drink because I'm still afraid of ghosts and the dark at 32 years old. He doesn't give me a hard time about it either...most of the time. And that's just naming a few of my oddities...

I guess what I'm trying to say is that he can be brave when I am weak. He is my match. Looking at this photo 3 days later made me remember how lucky I am to have this man by my side.

Wednesday, April 30, 2014

Noah

Dear Noah,

You're 5 days old today. These last 5 days I've felt completely out of control because I can't protect you anymore. I'm trying so hard to mask my fears. I'm supposed to be a veteran, but I feel like I have no idea what's going to happen to you. You're doing great considering the circumstances, but for whatever reason I don't feel like you're "mine" yet.

Often times I'm so afraid that it almost feels like you're only "loan."

It's probably just my hormones enhancing my greatest fears. I'm just so terrified to lose you that it's hard for me to believe that everything is going to be fine. I'm by your side so much that the nurses have to remind me to go outside and take a break. The day you were born and I finally got to hold you for the first time, I didn't even realize that I bled all over the place. I was so focused on you.

In the last 5 days you've been such a trooper. Three blown IVs, countless times they fished and poked  your tiny limbs trying to draw blood, a scare during your transport, head ultrasounds, and yesterday's wake-up call during your surgery....too much for a such a tiny baby.

I feel guilty. I want to take all your pain away. I have to fight every urge to cry along with you. Holding you is the only thing that gives me peace. And....I can only hope that you feel that same peace, too.

Today was tough.  You're wiped out and I can feel it. I can feel you trying, too. You're strong already, my boy. I hope tomorrow is better for the both of us.

Love you,
Mommy




Wednesday, April 23, 2014

Protect You...

Dear Baby,

You'll be here soon and I don't feel completely prepared. I wish there was more I could do for you. I wish I knew how this will all turn out. The fact of the matter is I don't. I can only hope for the best and prepare for the worst.

Faith is all I have at this point.

No matter what happens, I can only hope that you know that I did everything in my power to protect you. There are so many things that I want to share with you, but words escape me right now. I can only find comfort in knowing that you can feel me right now. And as you kick and squirm inside of me, I know that in this very moment, I could guarantee that you were safe.

I love you more than words can express,
Mommy

Tuesday, November 5, 2013

And then there was seven...

Our Baby Announcement. I don't think people got it the first time.

I'm fourteen weeks pregnant today. The seventh extension of my heart and soul is living and growing inside of me. Lucky Number Seven. We weren't trying to get pregnant, but it happened anyway. God had other plans for us. He always does.

Once the initial shock of discovering our little stowaway subsided, everything seemed to be going well. I was tired, but I barely had any morning sickness or heartburn.  I even got an appointment for CVS relatively quick this time around. I guess going through this process so many times makes things easier for all parties involved. I knew what to expect having undergone a CVS with Blaise and our genetics counselor was very familiar with our case. She was our champion advocate when I became pregnant with Noie. She was the one that found the one out of three labs worldwide that is equipped to test for Factor VII Deficiency. I think she was meant for us.

I bled terribly when I had my CVS with Blaise -- in fact I thought I lost the pregnancy. This time around I was lucky enough to have the test done through my abdomen. It was similar to the amniocentesis I had during my pregnancy with Noie, but just a bit more painful. 

The extraction process

Our first detailed glimpse of "Lucky"

I had the test done on October 10th and by October 22nd, we got our first call from our genetics counselor. So far everything looked good. No signs of any genetic anomalies and we were expecting a boy! It would just be a few more weeks before we found out the results from the lab in London. 

The next few days were filled with our usual Halloween fare. Tailoring costumes, filling goody bags for class parties, school parades and of course, trick-or-treating. I completely forgot that I was waiting for some pretty important test results. 

Halloween Carnival Fun

Taken before we went trick-or-treating at Colma
I was at work when I saw the missed call from the Genetics Department. It was November 1st -- All Souls Day. I immediately called our genetics counselor back, but she didn't pick up. It took her nearly two hours to call me back, but I didn't think anything of it. With Noie and Blaise it took forever to get our results back. I didn't think I was calling her back for test results.

Well, the results came in earlier than expected. 

I was hoping that this phone call would end just like my pregnancies with Noie & Blaise. Surely, I'd have another carrier.  After all, there's a 50% chance that we'd have a carrier, 25% chance of a normal, and 25% chance of a deficient. Why wouldn't I have another carrier? I thought that our seventh baby, our fifth boy, would walk away from the genetic risks unscathed.

I was wrong. God had other plans for us -- for my son.

The rest of the call was a blur. I was at work so I couldn't allow myself to process the news or react emotionally. I still had patients to deal with, so I had to fight back the tears. To say my heart was broken is an understatement. My genetics counselor was very gracious and apologetic. She told me that she would support me in whatever decision I chose to make. Part of a genetic counselor's job is to be familiar with how religious faith can come into play. She gently reminded me that I could choose to have a D&E if that was what worked best for our family. She also sent a consultation to Hematology should we decide to move forward with the pregnancy. Most importantly she reminded me to take care of myself and to know that I was not alone.

I would be lying if I said that I didn't for a millisecond honestly consider discontinuing this pregnancy. 

I've always had genetic testing done for the sole purpose of preparedness -- not as a means to make a decision. I had the tests because I wanted to know -- and wanted to know early -- what preparations our family needed to make "just in case." I got so used to our genetics tests resulting in good news that I wasn't emotionally prepared for the "just in case" to become a reality.

And now there I was in the thick of reality.

I'm Catholic, but I also respect a person's right to choose. However, I will admit that I've always staunchly decided against abortion for myself because I know what I am/am not capable of handling. Hence the seven little lions in my den.

The pain of losing Ethan is too complex to describe in one sitting. But I will say this... it was heart-wrenching to have to make the decision to withdraw care. Even though he was already declared "brain dead" a huge part of me felt like I was "playing God" when I signed the paperwork to withdraw life support. I didn't want to decide -- even if it was just for the sake of legality. I wanted the hospital to tell me that they had to withdraw care. But my friends, that's just not how it works. At 25 years old I had to "choose" to discontinue my son's lifeline. 

I can't make that choice ever again. 

As soon as I got off the phone with our genetics counselor, I called John to tell him the results of the test. We've had it rough this past month with his unexpected job loss and preparing to move, receiving our youngest son's test results was just the icing on the cake from hell. He didn't take the it well and I was still reeling from the news myself. Our discussion was quick and filled with a lot of f-bombs and self-pity. Because seriously, what more can you say other that "Fuck!" when you feel like life is screwing you left and right?  We both did what we do best whenever crisis initially hits -- we cocoon into the isolation of our individual emotions. When our incubation periods are over, we try to emerge with clearer heads. 

Sometimes we succeed, and sometimes we don't. 

Luckily, my best friend works in the same department as me. She came to the rescue and spent her lunch hour listening to me cry, hope, dream, fantasize, hate the world, and exhibit some pretty horrible cynicism. Generally speaking she witnessed me lose my shit. I love her. She was with me through that first storm of emotions. I still had the whole work day ahead of me and somehow I was able to suck it up and survive it. Probably couldn't have done that if I didn't have the opportunity to offload my feelings at that moment.

When I got home that night, we were both still in our cocoons. We tried to talk about it, but it was hard. I did a lot of thinking in bed, cocooning myself into the bed sheets. I thought about what was best for our family and what we are/are not capable of as parents. I thought about what's fair/unfair to the rest of the kids. How could I ever explain losing another sibling to the kids? I thought about how amazing our lives have/have not been having experienced the joy/love/fear/pain that Niki & Ethan brought into our lives. Mostly, I thought about the tiny heartbeat inside of me. I knew that night that I would not be the one to choose if that heartbeat should stop. I was ashamed with myself for even momentarily considering it. 

I know what I am/am not capable of as a mother.  

That night I struggled to define what "suffering" and "selfishness" really means. Those words are heartlessly tossed around quite frequently for parents in situations similar to ours. I thought long and hard about my suffering, my selfishness. My baby's suffering. Ethan's suffering. Annika's suffering. I thought of Niki and how amazing she is and how much she has overcome in just this year alone. I thought of Ethan and the tragedy of his life being cut so short so soon. I thought about my son inside of me. I could protect him now, but not forever. Would he be born into this world only to suffer? Did Ethan suffer? Is Annika suffering? Am I really selfish for continuing to have children who are less than perfect?

I thought a lot, but didn't have concrete answers. Just opinions. And opinions don't count.

Being diagnosed with severe Factor VII Deficiency isn't an automatic death sentence, but it can be. I would be living in denial if I didn't acknowledge that. I know that reality all too well after losing Ethan and especially after Niki's brush with death this year. John and I were told long ago that the severity of our particular mutation isn't supposed to be compatible with life. It's a miracle that our children have been able to live. Regardless of what society may say, they are my miracles and I love them. I will do anything in my power to protect them. 

The truth is, I'm not the strong one in all of this, they are. I'm just their Mom and I leave it all in God's hands. Even though some people may have a different opinion, I know that they have a Higher Power watching over them. God is not allowing my children suffer. He is not making me suffer. 

Most importantly of all, I know that it's not possible to be selfish when things are done for the love of your child.


"Lucky " 10/30/2013