Monday, November 21, 2011

Future Thoughts

With Scarlett's birthday and the birth of my nephew in the last few weeks, I have had lingering thoughts of future babies.  We have never had a set number of kids we wanted; we always said we'd see how it went the first time and go from there.  Now, though I am fiercely in love with my little girl, the idea of future children is even more uncertain.  While I'd love for her to have a sibling in the future, I am in no hurry to have another baby.

When I think about being pregnant again, I am terrified.  My pregnancy was easy, I had a somewhat uneventful delivery and Scarlett was born seemingly healthy (we didn't know anything was wrong for two months).  We have even been joking that it seems like I have fully forgotten the aches of pregnancy, the pain of labor and delivery, and the discomfort of nursing.  However, my pregnancy experience will always be tainted by the gloom of cancer.  

Scarlett's tumor was congenital, which means she was born with it.  It grew alongside her brain all along, from some point very early in her development.  We know this because the tumor was not just pushing on her brain; it actually replaced nearly half of her brain.  The right side of her brain has learned to take on the job of both sides (and is doing a pretty good job of it so far!).  The left side just never grew, and it never will.

There was a single moment, early in my pregnancy, when that one brain cell went wrong.  In an instant, her future and mine was forever changed.  What was I doing in that moment?  Was I doing something I shouldn't have, eating something I shouldn't have?  Did I drink enough water that day, take my prenatal vitamin, get enough rest?  Did I even know I was pregnant yet?  These questions will never be answered, and yet I think about them often.  We have been told repeatedly, ad nauseam, that there was nothing I did or did not do to cause this.  It was a single cell mutation that happens at random.  Not all cancers are random, but this one seems to be.  Regardless, I am still haunted by the idea that this happened to her while she was inside me.  My one and only job during that time was to keep her healthy, and I didn't. 

The chances of another baby being born with this tumor are basically zero.  There is no hereditary or genetic component (though there are with some other types of brain tumors).  And I fully recognize that anything can happen to any pregnancy, so I'll never get a guarantee of a "healthy" baby.  How will I ever feel safe to take the risk again?  

Maybe all moms who deliver "sick" kids feel this way, guilt over something they could never control.  Maybe even some dads feel this way when their child has a congenital health problem.  I am sure we all would do anything to take away what happened, to go back in time and change whatever it was that led that one cell to mutate.  But we can never go back, and the fear of what could happen lingers.

I know of a few other families who have been brave enough to have another baby after having one with cancer.  They have beautiful babies, and their survivor kids are doing great.  I can only imagine a life where I won't be haunted by the thought of what could go wrong; I know too much, have seen too much to ever be blind to it again.   It will be a few years before we even consider it, if we ever do, but I can't help but wonder when I'll feel safe again, like my own body won't betray me and my child. 

(Note: When I read this to Chris, he said it was pretty intense.  Sorry about that.)


Just the Tip said...

I don't think it's intense, I think it's honest.

So many people are able to be very "puppy dogs and rainbows," about these kind of things. For lack of a better phrase.

I can basically 100% say that if Morgan wouldn't have been a surprise baby we would have not had anymore biological children, ever.

My pregnancy was awful, (both) and I had to be on blood thinners the 2nd time around, and I was in/out of the hospital more times then I can count.

Now that I have TWO sick babies it's so hard to divide the time, and the appointments (my god!) are never ending. I always have to decide who/what is more important, and that's a bad way to have to go about things.

We had literally JUST got Peyton's dx of cerebral palsy the same week I found out I was pregnant.

It was tough to deal with an 'unwanted' pregnancy especially with the emotions of a dx, which has only grown longer since then.

I am thankful that the choice was made for me in a way...we don't have a lot of family & I have no brothers/sisters so they will always have each other. Which is a positive.

It's hard to accept sometimes that you did everything right in your pregnancy, and others do nothing right and still have perfect babies. I still have trouble accepting it and I still have anger issues with it as well. Maybe as the girls get older It will be easier for me to let go of the guilt...but right now, I can't.

All of your reasons/feelings are completely valid, so intense or not, they are yours & they are true.


A girl in the world said...

I don't personally know you, but have been following your family's story since Feb. I just wanted you to know that I completely understand the fear that accompanies another pregnancy. My daughter had severe complications at birth and had to be transported to a Children's Hospital. After weeks in the NICU and months of doctors appointments we were given the all clear. I have had a constant fear of going through such an experience again, and was just thankful for my finally healthy daughter. I wasn't wanting to have another child, because of my fears. We found out we were pregnant, by suprise, in June of this year. Unfortunately, the fear will never leave you and anyone who has experienced a loss or had a sick baby, understands that healthy and normal may be the exception to the rule in pregnancy. I hope eventually you get to the point that you would like another, because they will always have each other. You always live with the fear, it is about overcoming it, as you have done so many times this year, that makes living happen.

Bonnie said...

I love this post. It is all so very true. My son was born with a congenital defect (not cancer) and so I know something of what you've gone through and the thoughts that you think. While we are hopefully on the other side of things, there is always that fear in my mind that something will happen when I'm not watching, or even while he naps on my chest, and I won't know it. My husband thinks I'm over-protective and need to let go, but there just is no letting go when you've seen how bad bad can get. And even after typing all of that out, I feel so guilty, because there are others out there born with what E was born with that didn't make it like he did. I should be (and am!) so grateful that our case what not as bad as it could have been and sometimes I feel like wallowing is somehow doing a disservice to those who have watched their baby pass.

Anyway, I'm getting off topic here. I'm not sure if you've read this poem but whenever I feel down and sad about what my body did (or didn't do) during my pregnancy it really makes me feel better. Because no matter how bad the experience, it did make me a better person and it really taught me about life.


Thoughts on Becoming a Mother

I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.

I know disillusionment as I have been betrayed by my own body. I have been tried by fire and hell many never face, yet given time, I stood tall.

I have prevailed.
I have succeeded.
I have won.

So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.

I listen.

And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes.

I have learned to appreciate life.


And, I'm pregnant right now. Due in February. This pregnancy feels like a dream to me. I'm so scared to get too attached even though the doctors tell me nothing is wrong. It is so true that we have seen too much to ever be blissfully ignorant again. I can't tell you what I would give to know the joy of a completely healthy pregnancy with no shadows hiding around each corner. But at the same time, Elijah is amazing and I wouldn't go back and change anything either. He is who he is because of what he's gone through and I know he will continue to amaze me in the time to come.

I look forward to reading about Scarlett and how well she's doing. :D You're an amazing mommy

Megan Cox said...

Reading your journal entry was like reading my mind. Although Sabrina and her twin were children 3 and 4...the thoughts about our other children always lingered. Sabrina was also born with her tumor and I wondered why did the many ultrasounds never see it (since it was a multiple birth I had many ultrasounds). Neuroblastoma is something that could be hereditary, but we were told Sabrina's looked like it was not. I thought many of the same things as you about "What was I doing when that tumor grew?", "Could I have prevented it by changing my diet?". I realized I had to deal with it in the present and understand no one can tell me how it developed, but to move on and love our little girl. Having a healthy twin born at the same time...I have to believe it is nothing that we did as mothers. We did have our other children checked out and tested. It was worth the piece of mind to hear our doctor say "all 3 have no signs of cancer".

Thank you for speaking the truth so others can read and try to understand. As a parent of a childhood cancer patient, you deal with more than the is mentally exhausting. I am glad Scarlett is doing so well. She is a beautiful little girl and I can't wait to read about the things she will accomplish in her life.

Megan Cox - Mother to Sabrina Cox, Neuroblastoma survivor (diagnosed at age 3 2 1/2)

Leanne said...

I felt very much this way after having multiple miscarriages in a row. I felt that my body had failed them somehow, and the thought of pregnancy was terrifying. The feelings are very strong, and very real, regardless of whether they're rational. After my miscarriages I suffered from infertility, and then finally got pregnant through IVF with my son. My entire pregnancy was terrifying. I questioned my every move. My past experiences ruined my ability to enjoy pregnancy.

Thank you for so eloquently sharing your feelings. I think so many women who suffer child loss or illness feel this way, but not very many have the courage to say it.

Robin said...

I know you have heard it before, but there is nothing you did wrong. Scarlett is who she is now because that is who God wants her to be. She is a beautiful, special, important little girl, she is Scarlett. I know your road has been long, scary and painful, but try to remember, she was molded in God's hands. She was Scarlett (just how she is) before YOU were even born. She is perfect. This is His plan. Praying for you always!

Mommato4miracles said...

Dear Brandi,
Goodness, my heart breaks for you. I remember having those same thoughts. I always wanted FOUR kids, then my first was sick. Not with cancer, but with an immune deficiency, bleeding disorder etc. We have been in and out the hospital forever. And that will probably be life for him. But he is amazing and a tremendous blessing. I decided I didn't want another child to have to go through what he has gone through, but God had different plans for us. I got pregnant on birth control and was TERRIFIED the whole pregnancy. And our sweet little girl was born and has had ONE ear infection in her life. She is healthy and beautiful, currently there is some anxiety as they found a "lesion on her femur bone" so I am terrified as we are waiting for her MRI, but I am so thankful that God knew better than I and decided to bless us with her.
And then this year we were blessed again but another surprise pregnancy! And our little Preston is amazing. He got meningitis:-( and was sick for a bit but he is home now and is starting to smile and coo now.
All this to say, is that I wouldn't close your book yet. God has a better story to write, and He is the author of the perfect story. Praying He leads and guides your decisions, and that He blesses Scarlet with a life of happiness and miracles!!!
Love your blog!! And am praying...

The Blakes said...

You totally inspire me. I have been following your blog and your sisters as well. I can relate in the smallest form in what you are saying. My daughter was born at 26 weeks weighing 1lb 9oz because of a birth defect. And now that we have taken that leap of faith to try to have another one I now suffer with infertility. Its hard to trust my body when I feel its betrayed me so much. But I have to keep pushing on and just have faith. Thats what makes your story special. Your daughter is amazing and she just takes my breath away! Take care!

Unknown said...

I have been following Scarlett's journey from the BBC October 2010 board. I understand the guilt, the questions, the fear that accompanies a future pregnancy. Our older daughter Avery was born with a congenital heart defect, the kind that has no definite answers about her future. We live with a "wait and see" diagnosis, and it is so hard. We wish there was something we could do to make her future more certain. I have often wondered the same things about my pregnancy with her. When did this anomaly occur, was it before I knew I was pregnant, or after? Was it that concert we went to, with thousands of people smoking all around us? What about before I knew about the pregnancy when I had a few drinks out with friends? The doctors told us that it wasn't anything I did, it was an accident. But how can they be sure? Then in 2010 we got pregnant again. I worried a lot. When I went for my 20 week anatomy scan everything was normal. We had a home birth. At her checkup there were no heart problems. And now we have two beautiful little girls, one with a congenital heart defect, and one completely normal. We are now thinking about trying for a third. It is scary, but life is not perfect and no one is guaranteed a perfect baby. We just love them as best we can while we have them. Thank you for sharing Scarlett and her incredible journey with us. Truly, you are an inspiration.

Unknown said...

I understand your fears very deeply. I was diagnosed with breast cancer when my daughter was 7 months old. She is perfect, it is my own body that betrayed me. I had suffered through breastfeeding issues (supply problems) and had dealt with gestational diabetes. There are links all over the place and I constantly think "could I have done something differently and have avoided this?"... It isn't helpful, it just is. I worry every day that my daughter will lose her mommy. And I'm cancer free at this point. I trust though, that with time and distance from my diagnosis and treatment, that the fear will shrink and someday I can focus on the future without the dark oppressive shadow. I don't think it will ever be gone, but imagine that it will become more manageable. I hope to have more babies too, but worry that my body will betray me again. I do trust that the plan is out of my hands and that whatever is perfect, is exactly what will happen. Good luck dealing with the fear. Just remember, you're still in the trenches and it is very difficult to see much beyond that.

woody1620 said...

i think pregnancy is terrifying, even when you've never delivered a sick baby. so your fears are beyond understandable. throughout my pregnancy, i kept waiting for the other shoe to drop as i'd had one miscarriage before getting pregnant with my daughter. and even now, though she's healthy, i worry. kids can get cancer at 5, 10, 15. as moms, i think we're always going to worry more about our little ones than anyone else. thanks for your honest post. we can all relate.