Despite NMO I have a 3 year old now!

 

 

 

This past weekend we celebrated Sophie’s 3rd birthday and yes, it was elaborate. In truth, I know I can get, um, well, a little overboard but I can explain.

 

Sophie’s birthday is technically the end of this month but as a “long weekend baby”, we’ll probably always celebrate it a week early with our family and friends. On her actual birthday we reserve the day for just the three of us as a family unit.

 

Sophie, like all other children, is a miracle. But to me, her day is very symbolic and extra special. Living with NMO (neuromyelitis optica) I was told having children was not going to happen. They said it was dangerous to come off my meds, reckless, not enough medical evidence, etc. To Mike and I, that was just more heartbreaking news. But I worked hard to get back to an acceptable health. And I did my homework about IVF. Then I begged and pleaded my team of doctors until they agreed, with significant warning, to let us give it a try.

 

And then there was the entire IVF process…that’s a whole other post.

 

But in the end, we beat this disease just a little bit because we have her, our miracle baby. And every year on her birthday I’m reminded of how grateful I was and still am for all the love and support from our family and friends and doctors and medical advancements, and (I can go on and on – this is such a long list).

 

And my heart breaks just a little bit more when I think of how NMO might rob me of time with her. This month has been tough knowing we’ve lost one of our big advocates, Candace Coffee, and how her twins are just a year younger than my little girl.

 

So yes, I throw a party. I take months ahead of time to plan intricate details around her theme (this year it was “Princess”) and we celebrate. For this I won’t apologize, be judged or scolded.

 

And as I watched her have an amazing time with her new school friends, dance class friends and family friends, my heart is filled with more happiness than I could have ever imagined. We beat NMO a little bit yesterday, today and if I have anything to say about it, for a really long time tomorrow too.

The royal princess table setting for 12 kids.

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A special guest, Rapunzel, surprised the birthday girl with a visit.
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It wouldn’t be a party without a royal snack table.

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Hummus carriage (with zebras because we couldn’t find small horses).
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Glam station for when the royal guests arrived.
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And special cupcakes with ring toppers that each guest brought home. 11745600_10153490885309461_5620079337406472899_n

The bouncy “castle” was a real hit. cwvDm9asA3Lw9ZNWAbl5esWzZw-1

Her royal highness, Princess Sophie, is now 3 years old.11753743_10152960304720824_6670494545840344038_n DSC07119 DSC06976

The Birth of Sophie Elise Drolet

Mike and I are pleased to announce the birth of our daughter, Sophie Elise Drolet on Tuesday July 31, 2012.

On Monday night my water broke despite the fact that my due date was originally for August 20th.  We had planned with our team of excellent doctors to have a c-section on the 13th of August since we were all a little uncertain how a regular birth would affect me and my Neuromyelitis Optica (NMO) symptoms.  Would it cause a flair up?  Would I have a relapse?  Would nothing happen?  So naturally it was quite the surprise when my water broke by itself.  I never experienced any contractions so once we arrived at the hospital I was not surprised to find out that I was not dilated.  My options were 1: get induced and wait for the contractions and try for a regular birth, or 2: go straight to a c-section.  In my heart I always wanted to do a regular birth because I wanted my daughter to arrive in this world when she was ready, not when I forced her out.  Now that she did decide when she would arrive, we discussed it at length and went straight for the c-section.  The ultimate deciding factor was the word “emergency”.  If after being induced I still had to do an emergency c-section I would be disappointed and more scared than if I made the decision myself and high stress situations do affect my symptoms.  And let’s be honest: I’ve already had several more moments in this lifetime where I find myself in the hospital with the word “emergency” – thank you NMO (note my sarcasm), so I didn’t need one more.  A little part of me feels like I was a bit of a coward not trying for a regular birth but I’m calling my c-section as a safety so I feel somewhat better.

At 12:44pm on Tues. July 31st, we brought our beautiful daughter into this world.  Sophie weighed just 5 lbs 6 oz and was 18.5 inches long.

In hindsight I will admit that this has been a long journey.  There was a moment after diagnosis that I questioned if I would ever be a Mom.  Over the last couple of years I resigned to the fact that I could still enjoy a fulfilled life if I didn’t become a Mom.  I think my husband did too.  Yet, it was still really important that I tried otherwise I’d always wonder what if.  During IVF I had moments of sadness; the typical “it’s not fair” and “why me” that I questioned in private and would ocassionally find myself crying silently in the tub or under the shower.  Even now, I worry if I’ll ever be a good enough Mom when the NMO strikes.  Is it really fair to Sophie that she has a Mom who might one day have significant health issues and who went into this knowing that?  There are a lot of questions that go unanswered but I can tell you right now that I love her so much that it doesn’t matter anymore.

On day 2 we had a professional photographer stop into our room at the hospital who took wonderful photos of our new family (see below).

Thank you so much to the entire NMO community for cheering me on, believing in me and always being there when I had my doubts.  This wouldn’t have been possible without the love and support of my NMO family.

xoxo

Jenna

 

Jenna turns 30

I’m not a fan of aging.  I have never been a person who couldn’t wait to get older.  I don’t ever think that life gets better with age.  I think wisdom comes from experience and in my 30 years, I’m more experienced in some things than others who were born before me.  I secretly pride myself in being the youngest in my circle of friends and I feel accomplished that I’m as far (or farther) professionally than those more seasoned.

So naturally, I did not look forward to the beginning of a new decade.

Milestone birthdays are a funny thing.  They set new expectations and come with a full set of stereotypes.  At 30, I should stop being frivolous, I should have clear direction and a few successes by now.  Basically, I should grow up.  But in a lot of ways, I feel like I hit 30 a couple years ago when I was diagnosed with Neuromyelitis Optica (NMO).  A few friends actually said, “you’re not 30 yet?”  NMO changed me and although the physical changes were unexpected, the emotional maturity I had to find within myself was far more challenging.  Last year at Patient Day was the first time I ever met other NMO patients.  I met a few individuals who were a lot younger than I am and they gave me such hope and encouragement.  Even though one patient told me what she wanted for her birthday, which was for her Mom to let her get highlights in her hair like every other teenager, there was a quiet strength and maturity about her.  So as I reflect on 30, I’d like to think I’m ahead of the game, emotionally.  I’m already used to pill popping the same times every day, I already watch what I eat, monitor my sleep patterns and exercise – and I do that all without hesitation anymore.  I’m even better at saying “no” or “I just don’t have the energy today” without feeling guilty or frustrated with myself.

I still think I’m very young and I’d like to think that despite NMO, I still have a lot of life to live.  As I focus on the day after 30 and the day after that (because all NMO patients take one day at a time) I’m not looking forward to aging but at what I want to do next.  The top 3 things on my list: build a bigger family, start my own business and travel to Indonesia to learn about my heritage.

21
Oct 2011
POSTED BY Jenna
DISCUSSION No Comments

Birthday Meditations

I turn 32 today. When I first met Erin and Jenna, they lamented about turning the big 3-0, as do most of my girlfriends. What is it about getting older that we abhor so much? I understand that being forced to check the next level up in age bracket boxes–age 30-34 instead of age 25-29–can be horrifying, and if you asked me ten years ago, I would’ve said the same. But it’s funny how after all the things we’ve been through in life, age becomes something more to celebrate. Now I find myself embracing each birthday, each increase in year of age. Perhaps it’s because I feel like I’ve accomplished a good amount, suffered through and survived a good amount, and thus, each subsequent year brings a possibility of welcomed surprise: what will I be able to overcome next, what will I accomplish next? So with this fresh and refreshing attitude about turning older, I welcome you, age 32. I say, bring it on!

Growing older, however, should not be without its reflections. Without looking back on how far we’ve come, where we’ve come from, there’s no way to measure our future success. And having gone through something like Neuromyelitis Optica (NMO) and still living to tell the tale, I like to take, from time to time, the opportunity to sit back and reflect on all the things I’m grateful for in life. So here it is, my list of 32 things I’m grateful for these past 32 years. I invite you to also think about what hope you do have, and think about it not just on your birthday or during a special holiday, but a little bit at a time, each and every day.

My List of 32:

  1. Dogs–even though mine seem to cause me more pain than joy, it’s nice to have something I’m responsible for (but that doesn’t require as much responsibility as, say, a child).
  2. The ability to not have to constantly worry about a roof over my head, food for my mouth, a cute dress on my back, kibble for my pups
  3. A spacious, new house that, because we live in Houston, is not costing us an arm and a leg and the shirts off our backs
  4. Houston–as much as I complain about my hometown, there are some of the greatest places in the nation to eat here.
  5. See #4: Not to mention, there are lovely museum and theater districts–Houston does have some culture after all.
  6. Good girlfriends that are willing to drive me places, pick out fashionable clothes and shoes for me, guide me across streets, up and down curbs.
  7. Having many people to whom I could have a good cry to
  8. Bags of frozen peas and corn in the freezer to put on my eyes afterwards (see #7).
  9. Kitchen aids to cook as a blind person
  10. Other aids to sustain an independent life as a blind person: cane, magnifiers, iPhone, Macbook, etc.
  11. A husband when #9 and #10 fail.
  12. The MetroLift–even though I also complain a lot about this shared ride service for the disabled, they’ve brought me to many a class on campus for the past three years [relatively] successfully.
  13. Meeting people I would never otherwise meet because I ride the MetroLift
  14. Open-mindedness–something I’ve acquired more of since I’d been diagnosed with NMO
  15. Compassion–(see #14).
  16. Empathy for the down andn out (see #14).
  17. My NMO family
  18. The Guthy Jackson Charitable Foundation who is pooling their resources and doing what they can to better patients’ lives
  19. Community–through the NMO family online and at conferences, through graduate school, through church, through family and friends
  20. Faith, Love, Hope, and Prayer: things we have when we feel like we have nothing else left
  21. My husband who is also my best friend
  22. Having made it to one happy year of marriage just yesterday (see #21). Happy first anniversary, John.
  23. Friends, family, pastors: and endless supply of people to accompany me to doctor’s visits
  24. The good physicians and neurologists and opthalmologists (and maybe even the bad ones, too, because they make me appreciate the good ones that much more)
  25. Social networks (e.g. Facebook and Twitter) so that we can keep in touch so much more easily (see #19)
  26. The Internet so that we can access information so much more widely and easily (see also #25)
  27. Birthday cakes, chocolate chip cookies, fried chicken, New York-style cheese pizza, my mother’s Vietnamese egg roll recipe, salmon sashimi, French fries
  28. My mother who, even though she died eighteen years ago, leaves fingerprints of herself everywhere in my life–in my face as I get older, in my love for literature and school, in my sassy McSass-sass attitude. Happy Mother’s Day, Mom.
  29. My father who loved me the best way he knew how
  30. My ever inquisitive (and still functioning) mind
  31. Art, which beautifies our often dim world: visual art, performance art, musical art, theater art, literary art
  32. My residual vision and decently functioning body for what it’s worth…and then health insurance for the times when it’s not working so well
09
May 2011
POSTED BY Christine
DISCUSSION No Comments
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