Tuesday, March 18, 2014

The Pregnant Special Needs Mom

Well, we've done it.  We decided to take the leap from crazy into full-blown madness by adding another family member to our already-hectic lives.  While the response from everyone has been loving and positive and supportive, I would not be surprised if some people were saying to themselves, "Are they nuts?" or "That's pretty selfish."  I concur.  The decision that any parent (or would-be parent) makes to bring a child into this world is always a difficult one, no matter what your situation.  But when you are already caring for a special needs child, there are so many factors to consider.

Until his forever name presents itself, we call him "Chuck"

Why are you doing this? In our case, it started with a simple, "Do we want another child?" We had always wanted "2 or 3", so after 3 years of raising Anabelle, we finally looked up and said, "Oh crap, we're old!"  It was time to decide if we were doing this again.  For me the answer was simple.  YES.  I was not done as a mother.  I still felt robbed of the "parenting" that I do not get to give Anabelle.  Because while I am her mother and her caregiver and I learn so much from HER, her level of cognitive impairment really restricts how much PARENTING she needs.  I did not teach her to eat, I did not teach her to talk, I did not teach her to walk, I do not help her work through moral dilemmas or learn how to face adversity.  I do not get to share my love for art and orchids and reading with her, and watch her own interests form and take root.  And with my older daughter at the age of 6, I am already seeing things in the way I have parented her that I would love to "perfect" with another chance (this has nothing to do with the amazing person she is, but with the feeling that her road would have been smoother if I had managed things differently).

My husband, ever the more logical, was more trepidatious.  In a previous post, I have already outlined all the ways in which we are NOT there for our typical child (http://www.anabellerose.blogspot.com/2013/05/what-i-want-you-to-know.html).  Would we be adding to her life with another sibling, or taking away?  And then, of course, the BIG question: what if the new baby also had special needs?  Genetic testing had shown that neither my husband nor I were carriers of the gene mutation that caused Anabelle's lissencephaly, however, there was a very small chance that one of us was what is called a "mosaic", which means we DO carry the gene that CAUSES the mutation to occur.  While this is very rare, if it does turn out one of us is a mosaic, there is a 50% chance any future children will have the same mutation.  And there is no way to test for this.  So while the odds were in our favor, we were still taking a leap.  We know many families who have chosen NOT to take that chance, and I think it is a very brave and selfless decision.  Were Anabelle our only child, I might have been convinced to not take the chance.  However...

Enter Exhibit A: At the end of the day, I think what really made the decision for us was our oldest, typical child.  I will be the first to gush over the amazing relationship that my two daughters have.  Where it is rarely clear when Anabelle has a preference for anything, Elyse is CLEARLY her favorite person in the world.  She responds better to her than to anyone else she has ever met.  And being big sister to Anabelle has certainly brought many wonderful things to Elyse's life that she would not have necessarily experienced with a typical sibling: empathy, compassion, patience (not to mention a vast early understanding of how the human body works!).  However, there are things that she misses as well: someone to play with and the cooperation that comes from shared play; leadership and patience in the form of teaching things to a younger sibling; negotiation and compromise; and hopefully, life-long friendship and companionship (I know some adult siblings who might debate this one, but that's another discussion...).

Sissy bonding time

In the end...there was one factor that outweighed all the rest: Anabelle is not supposed to survive childhood.  Lissencephaly comes with a dramatically-shorted lifespan.  And while medical advances are improving the lives and care of those affected every day, I can still count on my fingers the number of adults I know with lissencephaly.  The thought of Elyse being left alone was too painful.  A scenario in which she loses her beloved sister is too difficult to put into words anyway, but for that to be her ONLY sibling just seems more than we can ask her to endure.  The fervent prayer is that having another sibling will bring comfort when we are finally faced with what we are told is inevitable.

So here we are!  12 weeks until their little brother is scheduled to arrive (and can I add, the fact that the male child finally decided to make his appearance did not hurt in helping his Daddy feel better about the decision).  Any parent of more than one can tell you that the subsequent pregnancies are never like the first.  During the first pregnancy, it is all about that child (and the mother!  Oh, the pampering!).  With the next one or two or four, it is all about the kids that are already there (you know, like EVERYTHING ELSE in your life).  If not for the physical discomfort and endless doctor's appointments, I'd probably forget I was pregnant most of the time.  "I don't have the time for this" is a phrase frequently uttered (ha!  As if there will be MORE time once he is here!).

How is it different?  Well, first of all, is the obvious: lots of extra doctor's appointments and testing.  Because there is no guarantee that this baby will not have Anabelle's mutation, they are monitoring me very closely. We have allowed all NON-INVASIVE testing.  We would not agree to amnio tests, as we were not willing to risk injury to the fetus.  I have monthly ultrasounds to track head size (no problem there, so far he's in the 78%, same as the rest of his enormous, chunky body).

The main ways in which it is different, however, is that Anabelle's extensive needs supersede any needs of mine or the new baby.  When I was pregnant with my first, I would not have DREAMED of setting foot in a hospital full of sick people (yes, I know, all the pregnant nurses are now rolling their eyes at me, but what did I know then??).  I have spent two stays with Anabelle in the hospital during this pregnancy, when she was sick and when she had surgery.  I would previously have looked aghast at anyone who suggested the pregnant woman should sleep on a cot, but that's the only option available to parents at a children's hospital.  It would never have crossed my mind to pull an all-nighter when pregnant with either of my first two.  But if Anabelle's night nurse calls out, there are only two parents available to stay up with her, and one of them has to work the next day.  Carrying and lifting Anabelle has become an issue.  She is 30 pounds and supports virtually none of that weight on her own.  I can no longer carry her up more than one flight of steps (which is a problem at bath time, the bathtub being two floors up from her bedroom).  I also would no longer take her anywhere by myself to wrestle her wheelchair in and out of the car, so if I need to take her somewhere, someone needs to be available to go with me.

"She's having a THIRD baby shower?" I, personally, have never had a problem with someone having a shower or sprinkle for every child they have.  I think each baby is a celebration, and also deserves a few new things of their own.  I do get, however, that some people see this as overkill.  I never realized how much it may be necessary, however, until I started preparing for my own third child.  We have virtually the same amount of baby things available for this third as we did for the first.  As a cognitive newborn, Anabelle is still using a tremendous amount of the "baby" things we had.  All diapering items still belong to her (and always will).  She is still in the convertible car seat as she does not have the head and torso control for the booster seat her sister transitioned to when she was was born.  Bottling supplies are still used to mix the formula she gets through her feeding pump.  She still uses the boppy pillow to sleep at night, as she cannot lay flat or she chokes on her own secretions.  All the baby light-up and musical toys are still used in her therapy.  We still have a baby monitor in her room, as we have to be able to hear when any of her machines alarm.  The rocking chair from the nursery is still seating for her nurses.  In addition, because adjusting to her needs made us space our children farther apart than we may have otherwise, anything that could expire (ie. infant carseat) has expired and needs to be replaced.  And of course, there is all the pink...but that's the deal for anyone who FINALLY got the other sex!  So, available in storage for the new baby, we had: one infant swing, one bath seat, one bouncer and one pack n play.  The end.  (I should add that we did have Anabelle out of the crib, but it was too large for the space where the new baby will live, so had to be replaced).

What happens without Mom? One of the biggest things we are facing is how to manage the delivery and immediately after.  I have gestational diabetes, which means my baby will likely be very large.  At 28 weeks, they are already estimating his weight at almost 4 pounds.  That, combined with a uterine fibroid I have that sits in the path of the cervical opening, already has the term "c-section" being bandied about.  A c-section would mean additional hospital stay and recovery time.  We are very lucky to have 16 hours a day of nursing care for Anabelle.  But who is supposed to watch her between 4 pm and midnight if I am not there?  Especially if I go into labor during those hours and need my husband with me??  And how I am I going to care for her when I get home if I can't lift her 30 pounds without risking ripping out my stitches?  These are the questions that keep me up at night.  Well, that and "what if something goes wrong?" but honestly, I just can't...

So, there it is: the journey from pre-conception to "get it out!" for a special needs mom.  Excited, scared, elated, worried, joyful and exhausted.  You know, the mood swings of every expectant parent...


4 comments:

  1. Thank you for posting this. With Layla and Maggie I still feel the need for one more. A discussion Mike and I have put off as he isn't sure he can handle another child...this was insightful!

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  2. Hi! I loved your article on CNN about Pinterest. You are a great mom to both of your girls! I am the mother of 3 girls, the youngest has Rett syndrome. We, too, have turned down the weekend sports clubs-travel all over-nonstop! I live in Texas and was wondering if you have a waiver program in Pennsylvania which provides respite care? Until we got on our states Medicaid waiver program, we also were one parent stays home while other goes to activiities. I just thought I'd ask about your state. In Texas, it's a highly guarded secret and you really have to ask around:). We also have private health insurance which helps a bunch!
    Finally, I love Pinterest. I wish I could send you pix of my Twinkie "minion" cupcakes! From one special needs mom to another-keep your chin up and keep crafting! God Bless! Marissa from Texas

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  3. Hi Marissa,

    Thanks for your comment. We do have a waiver program in PA...the waitlist is 25 years long. Since this vastly exceeds Anabelle's life expectancy, we were told not to even bother signing her up when we tried. I plan on pushing it further, but when I got pregnant it was put on the back burner, because we aren't planning on going anywhere for an extended period of time anyway.

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  4. I'm sorry the wait list is so long in PA. We have what they call a rider 28 program, which you must ask for when you call about our Texas waiver program (back door to Medicaid/respite program.). We have about a ten year wait on the waiver program but if you ask for this Rider 28, you are automatically put in the program (meeting requirements of course.). Respite, Medicaid for your disabled child, many great things. We have wondered about moving to another state, but just worry we might not get the same benefits. We live an hour south of Houston on the Gulf, husband works for a major chemical company so we have great insurance but therapy copays, med co pays, driving to medical appointments can be costly!
    I wish you such a wonderful and healthy pregnancy and know how much I was touched by your beautiful article. The journey you are on is shared by other families and we need to support each other and share info:). Take care! Marissa

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