January 26, 2011

Pregnancy After a Special Needs Child

Bertrand practices being GENTLE with his baby doll. Not shown? Bertrand trying to give the doll shaken baby syndrome. Guess who won't be left alone babysitting? ;)

Bertrand is expecting a little sister in early April 2011, and several people have asked about this pregnancy. I'd like to be a coward and say it was unplanned, but the truth is otherwise. A lot of research, discussion and consideration was put into the decision to have another child. Some of our journey and thought process is detailed below.

The Nightmare - 2008, 2009
Coming from large, happy families (one of 4 sisters and the other of 3 brothers), siblings for Bertrand were a given when Matthew and I were unaware of his medical issues. Once those issues arose, however, contraceptive measures were taken to give us time to determine the basis of Bertrand's condition.

One doesn't have to google long to find stories of families burying 2 or 3 children from genetic conditions. The suffering Bertrand had already experienced by 6 months-old was heartbreaking, and to imagine it compounded by another child suffering the same condition was impossible for us.

Besides, once Bertrand's condition was found to be severely life-threatening, our sole focus became providing the best of care, attention and quality of life. Fulfilling this alone, never mind managing the search for The Answer regarding his condition, was exhausting. How could we care for another child?

The Awakening - 2010
I'm not quite sure how or when it happened, but at some point our family found it's "new normal". The therapy and doctors' appointments, blood draws and medical research--it all became second nature. Bertrand was set on a roller-coaster ride of treatments ranging from the ketogenic diet to ACTH injections to stem cell infusions, because our goal shifted away from finding The Answer to simply improving Bertrand's quality of life. This meant we could finally make progress--measurable in adorable smiles.

We also met families in similar situations. The advice from these other parents was invaluable, and catching glimpses of their family lives made us finally rethink our own. The families with siblings, both older and younger than the special needs child, were HAPPY. The siblings contributed in countless ways to the care and joy of the special needs child and their parents. Any neglect siblings experienced was really in their parents' heads. The siblings were well-adjusted, cheerful, compassionate, beautiful human beings.

The last factor was community. From the beginning, Matthew's colleagues and the University have been incredibly supportive of our family. We've grown an amazing group of friends who accept our son for the lovely being he is and Matthew and I for the crazy people we are. Bertrand began his academic career--at the Pingree Center for Autism and now at Ensign Elementary's Special Ed Preschool--thereby giving his Mama a break. And finally, Bertrand's aunt Sabrina moved-in, while his Nana and Papa bought a second home close by.

If it takes a village to raise a child, we had managed to amass a nationstate.

The Dream vs. Reality - 2011
We'd heard many times that "there is never a right time to have a child", but I think we managed to get as close to a "right time" as one can expect to get. Currently, Bertrand's condition is remarkably stable. We may be getting The Answer afterall--in the form of our family's full genome sequencing being done at Duke University. Even though there is no evidence of an inherited disorder, we lucked out with this baby being a female (XX). This means that if Bertrand's condition is an X-linked inherited one (X-linked conditions have always been at the top of the suspect list), the baby wouldn't be affected even if she is a carrier.

Medical justifications aside, I was terrified of announcing my pregnancy until almost 20 weeks along. Did I expect to be crucified? I don't know, but the reactions have been overwhelmingly beautiful. Everyone, from our close family and friends to Bertrand's doctors, teachers and therapists, has been excited and borderline giddy! There is even a wonderful baby shower being planned by all my wonderful if insane ;) friends and family. It's clear that little Victoria Elizabeth will be welcomed into many loving arms, just like her brother Bertrand has.

That doesn't mean this pregnancy has been easy! Naively, I expected this pregnancy to be as uneventful as my nine months with Bertrand, but the old saying is true: "every pregnancy is different". From horrific morning sickness to chronic anemia, it's been a rough 30 weeks and coupled with being the primary caregiver to a 40lb. non-ambulatory child. But there are only 10 more weeks to go, so we're in the relative clear.

Interestingly enough, thoughts of prolonged NICU stays, infusions, blood draws, developmental delays, etc., none of that bothers me with this one. I know that Matthew and I can handle that easily! What occassionally bothers me is "what if she's normal?!" Thoughts of babies crawling away through mazes, picking up poisons to drink, sticking swords in electrical sockets (yes, because normal babies apparently wield swords)... We've never had to child proof our house or our life. By October we could be seeing milestones we've never seen or know how to deal with!

But, as I said, those worries only enter my head occassionally. I've gotten better at shrugging them off with "Eh, it can't be that hard. If I can take my child to the NIH, I can put little plastic covers on electrical sockets." If it is harder than that, please DON'T tell me. Okay? Thanks. :)

11 comments :

  1. Whatever may come, you and Matt can handle it. Your nation-state will be here for you and regardless of if Victoria is special needs or "normal" she will be loved and cared for by two incredible, amazing and strong parents. (along with the nation-state!) I love you all so much!

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  2. Did you really just call me insane?
    Why don't we try something like, mentally challenged ;)

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  3. You are awesome. I'm familar with all those feelings. duh. You know that.

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  4. Aw, you guys are going to do fantastic!

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  5. Hey! 1st I've got to say i'm glad I ran into you today!) and 2nd, you are so beautiful! Seriously, you looked amazing and you are so tiny!

    I'm so glad you posted this! In our situation...I know I would already have a 2nd child or a child on the way if Cole was a "normal/healthy" kid. Since he's not, I've really wanted another...but cant bring my self to add another child to care for yet...even though I want to. You are such an inspiration to me. And it REALLY helps me to know that I can...and some day will have another child.

    I hope little "B" feels better soon...his poor little eye :(

    He's so freaking cute!

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