Bad Days

             Since I started this blog, I have received so many wonderful and supportive comments from people who have read our story.  People have even commented on how inspiring our faith is and how impressed they are with the good attitude Brock and I have had through this whole thing.  I am so grateful that for the most part, those feelings have been our true, honest, “real” feelings. 

WARNING!  Today is not a day when my true, honest, “real” feelings are noble, inspiring, or uplifting.  Today is a day when my “real” feelings are ugly, selfish, overwhelmed, and scared and I am full of fears, frustration, and anger about this whole thing.  If you want to be inspired today, you may want to go read someone else’s blog, because today I just need to vent.  I’ve felt this way for the last few days and struggled with whether or not I should expose myself in this format.  I have had the prompting so strongly though to write these feelings down, so at first I was just going to write this for my own private journal and my own private benefit.  But then the thought came to me that maybe years down the road, someone else will be on the same path I’m on and will need to know that there are hard days and really raw, awful feelings and it’s okay to feel that way.  Right now, I don’t know if it’s okay for ME to feel that way, so maybe someday the fact that I’m putting this out there will help someone else.  You’ve all had your warning, so if you’re prepared for a little childishness, read on!

I know that someday, I will look back on this and wonder what I was so worried about.  I know that those who have had experience raising or working with special needs children will say that it is the most wonderful experience and they wouldn’t trade it for the world.  I know that someday, when I’ve been through this a little I will feel the same way.  But right now, I honestly don’t want ANYTHING to do with this!  I am terrified of what this whole situation is going to mean for me, my family, and my whole way of life.  I know that when you lose yourself in the service of someone else, you really find yourself.  I have experienced that in many situations.  But right now, I have no desire to lose myself in this! 

I really like the way my life is and the way our family runs.  My kids are great, mature, self-sufficient (for their age) children and I have high expectations of them.  I absolutely adore my kids and love spending time with them, but a lot of the reason I like being with them is because they are well-behaved.   I’m not one of those people who just LOVE kids.  I love MY kids, and a big part of why I love them is because they are easy-going, low-maintenance children.  They are very easy to love and I am very comfortable raising them.  I know things will definitely change as they get older, but for right now, parenting is actually pretty easy.  I enjoy it and it comes pretty naturally to me.  I chose to be a stay-at-home mom, not because I didn’t want to work or because we could afford to do it.  I chose to be a stay-at-home mom because I felt like it was the best way to raise my kids and give them the environment they needed to grow.  However, I have been very careful to not lose my identity in the process.  I take my favorite exercise class at the gym, lock myself in the bathroom to read in the tub for an hour, and schedule days off where I can just go by myself for some alone time.  I make time to do things that are important to me, and Brock is WONDERFUL at making sure that happens. 

And speaking of Brock, I REALLY love him and I REALLY love spending time with him.  I really, REALLY love spending time ALONE with him.  We make it a priority to go on regular dates together and feel like our strong relationship is the most important gift we can give our kids.  About once a year, we plan a vacation without kids – either overnight somewhere or as long as a week away.  Ever since we got married, we have also made sure to go to the temple once a month, whether that meant traveling 2 ½ hours each way to Winter Quarters when we lived in Iowa, or traveling 1 ½ hours away now to Lubbock.  We’ve taken our kids with us on those drives and they have just grown into learning how to handle the long drives and the long wait while Brock and I swap temple sessions.  We have done all these things because they are important to us and because we have a life that fosters those things. 

I can’t help but fear that these things won’t happen in the same way once Flint arrives.  If he has special needs, will I have the luxury of being able to arrange my schedule the way I want so I can take my favorite workout class at the gym, or will my life be dominated by doctor appointments?  Even if I can go to the gym, will I be able to leave him in the nursery there with the babysitter for an hour, or will his needs be so big that this is just not an option.  Will I get a full night’s sleep like I do now, or will I be up all night for the rest of my life, rolling him over every couple of hours because he can’t do it himself and he might get a bed sore?  I have no idea how to parent this kind of child or how to help him achieve his best.  I don’t even know what his best will be!  How will I know what to expect of him or push him to do, when it could be something that he literally CAN’T do because of his issues?  How will I know the difference?  I just honestly don’t know a thing about raising a high-maintenance child and the realities of what that could mean scare me.

Will I be able to have those special one-on-one times with my husband, with weekly date nights and occasional weekends away?  What kind of baby-sitter would I have to find, to be able to leave a child with big needs in their care for even an hour?  I won’t even talk about a whole week away, because who would even know how to take care of him for that amount of time?  And even if I could find someone, will we be able to afford it because of all the money going to pay medical bills and insurance?  Will we be able to still travel to the temple each month, where we are able to worship in more personal ways and feel closer to Heavenly Father, or will that drive just not work when we’re toting along a child with severe handicaps?

I haven’t imagined up any of these concerns.  They are all real-life situations I have seen in people who are “blessed” with a special needs child.  I feel so selfish for being so concerned about these issues, but sometimes, these are the things that scare me to death if Flint survives!  When you have a new baby, you know your life is going to be turned upside down – for a couple of months.  Regular life kind of slows down while you get through the more difficult early months of the baby’s life and then life returns to normal and all is well.  I feel like my reality is that if Flint survives, my life will be turned upside down – for the rest of my life.  I guess that I am really just afraid of losing ME. 

One of the things that most frustrates me about this though, is that my sweet, young children have to deal with this right along with me and Brock.  They are brave, kind, and happy, but sometimes the emotions and worries catch up with them too.  Last night I was showing my dad the pictures we had been given at the hospital of babies with shunts.  We had all imagined that the shunt would be inside Flint’s skull where it really wouldn’t be noticed.  However, the shunt is placed between the skull and their skin, so there’s a long, bulgy line running from the top of the person’s head all the way down to the base of their skull.  In all honestly, it’s quite obvious and looks a little weird.  You can guarantee that if it looks weird to an adult, it’s going to look REALLY weird and scary to a kid.  Even though Duke has already seen these pictures, it just got to him last night.  He came up to me and said “Mom, I want to talk to you.”  When I asked him if he was okay and what he wanted to talk about, he kind of whispered and said “I want to talk to you about Flint.”  We went upstairs and laid on the bed together, where Duke cried and told me he was afraid his friends would make fun of Flint because he’s not “normal.”  He’s afraid Flint won’t have any friends because he looks different and might act different.  He said “Flint has a really cool name and I want him to be just like the rest of us.”  Davis has expressed similar worries, that she might be embarrassed by Flint if he is different.  It doesn’t bother me at all that my kids feel these things because I think it’s a very normal part of the adjustment process for them.  What bothers me is that they have to be in this situation where these feelings are so normal.  Both times my kids have expressed these feelings to me, we’ve talked about their good hearts and the love they have for everyone already.  I have told them that I know Heavenly Father loves Flint very much.  He knows that by sending him to our family, Flint will be very blessed with an older sister and big brothers who will adore and protect him.  I told Duke that Flint is very lucky to come to a family with such wonderful siblings and all Duke could say was “How can Flint be lucky when he’s going to be born this way?”  It’s all about the eternal perspective, but sometimes, it’s really hard to have that!

Anyway, as I said at the beginning, most of the time my real feelings are ones of faith, hope, and trust and I am grateful that I have usually been able to see things in a positive manner.  The last few days have not been that way for me, and even though I probably appear horribly selfish and childish, the reality is that this is where I am right now, today.  I know it will pass, but right now is a scary and sad time for our whole family.  We’re just plodding through…waiting and hoping for a good outcome.  But at this point, it just doesn’t seem like that is going to be the case for us!