Revisiting The Past

While I've shared my blog with you all a hundred plus times, sometimes I forget what all has happened up to this point. So I decided to go back and read some of my old entries. Wow. Re-reading my own journey was incredibly emotional! The high points and the low points, and as I'm reading them, I get put right back there in reality.

Like the moment I had to let the transport team take Mira after she was born. Only spending a minute with my new baby, and having to let her go. Let her go to get surgery, let her go away from me, let go of her skin which I barely got a feel for. That was one of the hardest moments of my life.

Or when I heard she came through her surgery! When the wait was over, and even though I wasn't with her, not at the same hospital, I knew my baby girl made it through her surgery! That she was alive! That Joe was with her! That the hurdle had been jumped and she was okay! 

Or even way back, at the very beginning, when Joe and I were just a couple that were going in to get a "routine sonogram" done. Just two people hoping to find out the gender of the new addition to our family. But instead, we were alerted to the reality that something was "wrong" with our baby, and we had to wait an entire weekend just to find out what it was. Was it life-threatening? Would she be healthy? Would she be impaired? What exactly is wrong? The only thing I could do at the time was go find my big sister at her work, and cry on her shoulder. We spent all weekend shooting possibilities at each other. Joe thought maybe Down syndrome? I remember saying the words "spina bifida" and having no clue what it actually meant. And when we finally met with the doctor, and had our suspicions confirmed, spina bifida, and Joe and I just held each other in the exam room, and cried.

Or when I got to hold her for the first time! When most of the tubes and wires were gone. When I got to feel her weight, and put her skin to my skin, and smell her hair! When she finally felt like she belonged to me instead of to the hospital. When I finally felt like I was doing my job as a Mother because I could hold her, and feed her, and change her diaper! It was amazing and relieving, and she was so beautiful because I could finally see her whole face at the same time since she didn't have to lay on half of it, because I could hold her! My beautiful bundle! My precious gift! My miraculous Mira Cole!

So yes, while I've shared my blog over and over, and posted the link on my Facebook a hundred times, even I forgot where we started, and the highs and lows, and the emotions, and the events. But if I can toot my own horn, I must say, it's not a bad read. And if I can toot Mira's horn, I must say, wow! You really can do anything, sweety! You can do anything!

Rough Patch

One topic I haven't hit on yet is finances, but I feel like being honest about it is the best way to give accurate information to others that might have gone through this, are going through this, or will go through this. 

When you have a child that has very particular needs, small things add up, and they add up quick. For instance: Mira has absolutely no hold of her bowels, so she poops at a constant rate, requiring constant diaper changes. We've gone through more diapers in her few weeks of life than I can even count. And we cant use cloth diapers because they do not pull the mess away from the skin the way disposable diapers do, leaving a risk of infection on her incisions and actually making her diaper rash worse! Then you add how sensitive her skin is and you're left with only being able to buy certain products. We have to get a particular kind of baby wipe that doesn't have alcohol or chlorine in it. A special kind of diaper rash cream. Very particular types of clothes and blankets. Finding baby socks that don't contain latex has been nearly impossible. All of the medical supplies that aren't covered under insurance, like the sandwich bags to make her butt flaps. Having to replace the latex items in our home, like tape, gloves, Tupperware, and more. The travel costs of always going to see doctors. Not to mention all the work Joe missed during her surgeries and having to take off work for her appointments. Thank God I'm a die hard fan of breast feeding, because I couldn't imagine adding the cost of formula on top of everything else. While I'm not complaining, because this is what our daughter needs and we're fine with doing it, the reality is that it's all very,very expensive.

The reality is that you can't make $1500 worth of bills come out of a $300 paycheck from missing almost two weeks of work during her surgeries and hospitalization. The reality is that once you start playing catch up with your bills, it takes months to get caught back up. The reality is that we even planned for this and paid most of our bills months in advance before she was born. But, the reality is that this is an unavoidable part of having a baby with special needs. 

However, it's a rough patch. It's called a rough patch because it goes away. This will pass, things will get easier, the bills will get paid, and there's always light at the end of the tunnel. We're blessed with friends and family that have helped in many ways. They're planning a benefit dinner for Mira as we speak. Others have held fundraisers through their personal businesses. Family members have brought us groceries and babysat the kids for us so we weren't paying for child care during doctor visits. And some have simply stopped by to help me with housework while I sat on my porch, enjoyed a cup of coffee, and was simply able to breathe. 

It is all so overwhelming. Making sure we're taking care of our family the best we can is overwhelming, and the last thing you want to have to care about during all of it is money; but we live in a world that requires it. The best advice I can give is to plan. Plan for it. Plan for the loss of income, plan for the one pair of baby socks that are going to cost 20 freaking dollars because they're latex-free, plan for spending more on a baby outfit than you've ever spent on your own, plan for falling behind on your bills; BUT don't feel like a failure when your planning only does so much. Don't get discouraged when you inevitably hit the rough patch. It doesn't make you less of a parent to fall behind. It doesn't make you a failure to run into things that you didn't know to plan for. It hurts, it makes you feel like you're less, and it's embarrassing to beg your landlord for leniency; but it's not your fault, and there's only so much you can do, and this is the lesson I'm learning during this rough patch. This too shall pass.