The Waiting Game

I have never been so miserable as I was waiting for the days to pass to get these test results back.  I don’t know how people get through the 10-14 day waiting game when they don’t get offered the FISH rapid results test.  The 3 days I had to wait was beyond torturous.  As I mentioned, it was Labor Day weekend so I had to wait an extra long day due to the holiday.  After we got home from the amnio. it felt good just to do nothing but I have nervous energy and was left in my room alone so I picked up my phone and started searching everything I could about my baby’s problems and what could potentially be the outcome.  I knew that my situation was completely different than anyone else’s or any of these statistics but what I walked away with was that if the baby has a unilateral cleft (which she did) then it was less likely that she’d have a syndrome.  One thing the doc. also told us is that midline cleft are 100% associated with a fatal syndrome and this baby did not have a midline cleft.  Bilateral, or both sides, with a cleft as also associated with a higher chance of a syndrome.  This made me feel a tiny bit better and grateful for that left-sided unilateral cleft.  But the more research I did the worse it made me feel and the more worried I became.  It was all consuming.  Chad and I decided we had to make plans for the weekend ahead to fill the time so that we weren’t left totally alone because we knew if we were that all we would talk about was this baby and the “what ifs”.

So plans we made!  Saturday morning I took Emmett to my friend Michele’s house for a big kid playdate in her backyard.  She made us coffee and coconut chocolate cupcakes with a cream cheese filling.  She’s kind of the best because these muffins were incredible and I LOVE her coffee!!  She let me talk about everything and just listened but didn’t let it take over the entire morning conversation either which was a good thing.  Later that night we had a BBQ with a few families at our house which again was so nice because we weren’t left talking about this baby.  Sunday I felt the need to be in church so I left the kids home with Chad and I went to church.  We went to my parents house for a lot of the day and Monday I made plans with a bunch of friends to go to the Highlands and have lunch at the Denver Biscuit Company in a park while the kids played for the majority of the morning.  It was perfect and when I was with people I didn’t think about the baby.  It was so nice.  But then it was Monday night and the next morning we would have to face the results.  I remember laying down in bed that night and a feeling like my body was suffocating came over me.  Panic consumed my body.  I felt like I was living in a black hole and falling deeper and deeper.  Now I know why people take paper bags to their faces to breathe.  I didn’t think I would survive this.  I didn’t know how I was going to face this.

Backing up to earlier that evening Chad and I sat outside on our porch and talked.  He told me that we had two choices in this matter.  We could let everything wrong with this baby consume us and be super sad about it or we could be the people that inspire others because of what we will have to overcome.  He explained that it’s a choice that we get to make, not that we have to make.  I went on a long walk after that and thought about how drastically my life would change if we had a special needs child.  It would just be a different path than what I had set out for or envisioned.  I maybe could still be a nurse but it would just take longer.  I thought about how I could hold a position on a board of whichever syndrome my child had or how this baby would change everyone’s life around her and it would be my mission to make sure that this baby had a full life and that she would make an impact on everyone she would meet. I decided that night that this baby wouldn’t hold any of us back and that she would only add so much to our lives.  I started seeing every special needs child differently from that day forward.  Parents don’t choose this stuff to happen to their children.  No one would ever want a special needs child but dang they are the best.  These children are so incredible and this entire experience opened my eyes up to that.  These kids are so strong and have to go through so much but it’s the parents who are behind these kids.  You can either fight for your child or let them slide through the cracks and we were going to choose to fight, if it was “just a cleft” or something more extreme.  It just didn’t matter to us anymore.  It was our baby.

Now if I’m being honest, and I always am on this blog, I had panicked moments about this baby and how much she’d potentially change our perfect little life.  I was scared to do the hard thing.  I didn’t want things to change.  I liked how things were going.  I am a selfish person sometimes and I need time to myself and I need to run and I like blogging and going out with friends and going on vacation with my husband without my kids and want a career someday that’s out of the house that doesn’t involve raising kids all the time.  These things all sort of started to crumble as I thought about how much attention I’d need to give to this baby.  But then I took a step back again.  I remembered back in August before we found out about this baby and her defects that I went to a triathlon to watch my dad race in it.  I saw one of the most marvelous sights that really got to me and made me cry while we were there.  I saw people with severe disabilities doing the race with the help of other human beings.  The people with the disabilities were able to “do” the race with the help of large carriers that the other people without disabilities were carrying.  In the swimming event the people with disabilities were able to lay on rafts while the other people without disabilities swam with a rope attached to the rope pulling them through the water.  In the running event the people with disabilities sat in a large stroller looking device while someone pushed them.  In the bike event the people with disabilities go to sit in a wagon cart looking thing while someone else pulled them along and peddled.  It was inspiring and touching and also now felt like foreshadowing.  I felt a very strong pull to volunteer to do something like this some day for someone else.  I thought about it on my walk that night and thought to myself that I could still do everything I like doing but it would just look a little different than how most people do things.  It felt good to remind myself that life would still go on and we could live it fully, just differently.  And ya know what?  No one is any more or less deserving of the privilege to take care of someone with special needs.  I am not a huge spiritual person or anything of that nature but I do believe in a higher power and I did start believing that if God did give me this special person that I needed to do my best to make sure she would always be protected.  I started feeling so lucky that God trusted me enough to give her to me.

Tuesday morning was approaching quickly.  So after panicking Monday night and feeling as though I was falling into a black hole that I could never pull myself out of I fell asleep and woke up to Tuesday morning.  I had all the emotions that day.  One second I was full of excitement thinking about how there could be potential good news and we could move forward with a peaceful pregnancy.  At other times I was filled with sheer and utter fear that something was drastically wrong with my baby and she may not even survive the pregnancy.  It was horrible.  So I did what I do best and tried my hardest to distract myself.  While also staying glued to my phone.  Chad told me he’d work from home and I took him up on that so that when the call came he could be right there next to me.  I threw the kids in the double BOB and went on a nice 4 mile run because running always helps me view situations in a different light.  I cried several times on that run but had to pull it together rather quickly so that the kids wouldn’t see me crying 15 times in 40 minutes.  After we got home I regrouped and the kids and I walked over to a park that is close by to be with friends.  By this point it was about 10:30am and I thought for certain I would have received the call by now.  So I did the unthinkable and left my phone at home.  I didn’t want to get the news while we were at the park with my friends and their kids.  I knew that good or bad I wanted to be in the comfort of my own home with only my family.  I knew that the call was going to come while I was at the park and I also knew that I could reach the doctor or the geneticist later.  I also sort of figured that if they were going to leave a message at least I would know immediately just by who was calling that something was or wasn’t wrong.  Either the geneticist would leave a voice message to call him or her back and I would breathe easy while dialing because I would know that everything came back fine or I would hear a voice message from the doc. and I would know while dialing them back that something was horribly wrong.  Either way I knew that there would be a voice message waiting for me when I got back to the park and I wanted to enjoy my last few moments of peace with my children and friends before receiving potentially life altering news.

So off we went.  And of course all I could think about was how I left my phone at home and how badly I wanted it back with me.  The suspense alone almost killed me!  I met up with two of my close friends and we had a really nice time.  We talked a lot about the baby.  One of my friends enlightened me big time as she used to work with developmentally disabled adults and told me that there are support groups everywhere for every syndrome and that help is always just a phone call or email away.  She told me I could absolutely live a normal life, go to school, go out with my husband on dates and raise a family while having a developmentally challenged child.  It changed everything.  I was back on the train of “we can do this!”, with a huge fist bump.  I thanked her immensely for talking to me and keeping things real.  I left the park feeling so empowered and ready to conquer any challenge that was waiting for me at the end of the voice message that was probably waiting for me on the kitchen counter.

With each step we took that got us closer to our house my heart beat got louder and faster.  By the time we approached the house Chad came out with my phone and told me there was a few missed called and some voice messages but that he didn’t listen to them.  I was completely out of breath as my heart was racing faster than it would have if I were running a marathon.  I composed myself, took the phone, and listened to the voice message.  It was the doctor.

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