How Am I Going To Do This?

I started my college classes back up today, and I nearly had a panic attack. I'm very excited about the idea of continuing my education and bettering my family's prosperity in the process. However, it feels a lot different now, getting back to learning about my future career specialty, when simply learning about Mira and everything she needs feels like learning a specialty all on its own. 

I'm a psychology major, and the field absolutely fascinates me, it always has. But, with everything there is to learn about Mira and spina bifida in general, I kind of feel like I'm already learning everything I need to be learning right now, and adding college back on top of that is a little overwhelming. I already have all of these overwhelming thoughts in my head all the time; is Mira going to need more surgery soon? On her bladder? Sphincter? Shunt? Foot? Hip? All of the above? What can I do to help her more? What can I learn to help her more? Knowledge is power, and researching her conditions has helped quite a bit so far, so just having Mira and doing the best I can already makes me a full time student. The only difference is that with college, the classes have a start and stop time. You finish the assignment, and you move on; researching for Mira is not like that. It doesn't stop and it never will. Dustin is getting ready to start school, Aryanna is walking and starting to talk, Mira has to be catheterized, medicated, therapy done, doctors seen, appointments kept. I am a stay at home, and I take my wifely duties seriously. The house needs cleaned, dinner needs cooked, my family needs taken care of, and that entails very small things, but those things never end. Very small things, like changing a diaper, cooking a meal, switching the loads of laundry over, and cleaning the floors. These things are not large tasks, but when you pile them all on top of each other, the job never ends. There's no such thing as clocking out or having everything done; household work is never done. There's always something else that needs done. The ABC's need sung, a spider needs killed, a mess needs cleaned up, and a child needs fed or cleaned or hugged. 

Since having Mira, my tasks have all been laid out for me. I am constantly going through a mental check list to make sure I am taking care of everything that needs my attention: the needs of my children, the needs of my fiancé, the needs of my house; and now to add the needs of my classes into that rotation is slightly terrifying in the enormity of it. BUT in my experience, it is usually the case that, things worth doing are difficult. It wouldn't be as meaningful if it was easy. It wouldn't be life changing if no struggle was required. It wouldn't be rewarding if you didn't have to fight for it.

It's always nice to have those days where you can lay around and bask in the absolute laziness of yourself. Where you lay around and do nothing because, hey, why not? Starting school back up is just another reminder that those days are behind me. I can't NOT cath Mira on time, or give her the medicine her bladder requires, or skip my classes because I don't feel like it right now. I can't do stuff like that anymore. And while it would be nice to bask in absolute laziness, it wouldn't be nearly as rewarding as taking care of my children and continuing my education. So while I continually ask myself 'how the hell am I possibly going to do this?', I also know that the question is rhetorical, because I know I just will. I will do this. I am doing this. And I'll be better for it, my children will be better, my life will be better for it, and that's all that matters.

Benefit Dinner

The benefit dinner was on Saturday, June 15th. It was amazing! Words will never be able to describe how moving it is to see a community come together for someone else, my someone else, my daughter. 

My Dad and brother ran the kitchen. My Dad was a chef and restaurant manager for roughly 30 years, and my brother has fallen in his very big foot steps, so needless to say, the spaghetti was cooked perfectly al dente! So many family members helped in so many ways! My sister is a perfect planner and should really consider throwing events for a living because every detail is thought through and planned to the T when she's in charge! It was so beautiful!

Many people came, we had a really great turn out, and it was so nice to see all of our family members together and celebrating for Mira with the community. We had a great time, and we made enough money to where Joe and I agreed that we would share some of the proceeds with a couple other local families that also have babies with spina bifida. 

We wore t-shirts to honor Mira, purple (the awareness color for the Arnold chiari malformation) shirts  with yellow (the awareness color for spina bifida and hydrocephalus) print. I also made tons of little yellow ribbon pins for everyone that attended, and I made a few extra into hair bows for Aryanna and I. 

We had a 50/50 raffle every hour and a Chinese auction that had over 60 items (including steelers tickets, corn hole boards, hundreds of, if not over a thousand, dollars worth in gift cards, and so much more!) The gentleman who won the first 50/50 drawing insisted that I take his winning ticket, and while I don't know your name sir, I thank you, because you were so kind, and I don't think I'll ever forget my interaction with you. It was amazing seeing complete strangers, old friends, acquaintances, and family members alike gathered and having a blast to come support my daughter.

At the end of the night, Joe and I went in front of everyone, took the microphone, and personally thanked all that attended, donated, and worked so hard. I got about three words into my 'speech' when I started crying. It was really amazing, to stand before a crowd of people, some who don't know me, my daughter, or spina bifida from a hole in the ground, yet to feel how loved and supported we were! To just spend a day constantly seeing and feeling how much Mira matters to so many people, to see how many people are pulling for her, thinking of her, praying for her, and loving her! It was beautiful! It was absolutely beautiful!

Making A Come Back

Yesterday I didn't do much. I laid around, didn't clean, didn't really cook either other than the bare minimum to feed the kids. What I'm saying is that I wallowed around in self-pity. Yes, I know other people have it way worse, I know I need to be grateful that my daughter is alive and thriving, and I know that I need to be strong for her; but even with all of that, yesterday was still a good day to wallow around in self-pity.

It hurt my heart to set her cathing station back up. I got so used to just having a changing table... Diapers, wet wipes, and diaper cream. The only items I've ever needed on a changing table before having Mira, and it hurt to put the catheters back, the containers to separate clean and dirty caths, the lubricant, the paper towels to use as a lubricant surface, the bright light that attaches at the end so I can see what I'm doing to her, the urine collecting cups, the germ-x everywhere to be as clean as possible, and also her medicine and syringes. It hurt to give her medicine for the first time... The medicine is the reason why we have to cath again, but the medicine is what also will keep her bladder and sphincter from attacking each other... I love and hate that medicine. I love that it helps her bladder to relax so her organ isn't freaking out 24/7, I love that it has the potential to teach her body to regulate itself; but I hate that it's a medicine that means she'll possibly always have to be cathed, I hate that it's a medicine that we're supposed to assume she'll be taking for life... because it makes me wonder if there will be more, more medications that she'll have to be on indefinitely. I hate having to add more things to the list that she'll just have to get used to. I hate that these types of complications often lead to surgeries, and surgical plans spread out over the course of several years. So yes, I spent yesterday wallowing.

However; after my day of wallowing, I feel refreshed. I feel purpose. I once again have conviction in my actions. I'm now very excited to meet with Mike tomorrow, our in-home physical therapist, to see if he has recommendations for ways to help with her hip dysplasia. I've printed out another log to keep track of Mira's output amount when we cath. I'm fine tuning a new schedule to stay on top of her medicine three times a day and cathing four times a day, along with eating roughly every three hours, and making sure we're implementing her stretches and massages at regular periods throughout the day. 

So I spent yesterday feeling sorry for my baby girl, sorry for the things that she'll have to get used to, and I'd be lying if I said I wasn't feeling sorry for myself. But that's just it, she'll get used to it, this will all become normal for us both. And in the mean time, today is a new day, there are things I can be doing to make this easier on the both of us, and I'm damn well going to try! 

Underlying Expectations

I learned during my pregnancy through a lot of research that you cannot afford to have expectations with spina bifida. It is a disorder that can have virtually no effect at all on the individual, it could be fatal for the individual, or it could be one of the millions of possibilities in between. Paralysis, incontinence, mental delays, behavioral issues... from physical disability to mental disability... an unending list of ways spina bifida can turn out. This is why I made myself get into the mindset of having no expectations when I was pregnant. Joe and I agreed that survival for our daughter was our only hope, and that anything on top of that would just be icing on the cake! No expectations... don't focus on the worst scenario because it is setting you up for sadness, don't focus on the best scenario because it is setting you up for failure... no expectations. This is what we thought we had.

Then our little Mira Cole got here, and she sailed through the most difficult things I've ever personally witnessed. These horrendous experiences no one should have to go through, and here's this tiny little beautiful baby, taking it all in stride, acting like it's no big deal. I got used to hearing time after time "she's great" "nothing's wrong" "everything went better than expected" etc. etc. I didn't realize that I got so used to hearing the best case scenario, that I subconsciously started expecting everything to always be the best case. After all, she's beaten so many odds thus far. This underlying expectation that I was unaware of is what made today really, really hard.

Today we had her hip ultrasound, to make sure her hips are growing in properly, and her CMG. A CMG is where they measure the pressure in her bladder and monitor the activity of the bladder, bowels, and sphincter. I thought today would be pretty routine. The only thing I was dreading was finding out whether or not we were going to start her casting and surgeries on her club foot. Don't get me wrong, I'm happy her foot can be helped, but I wasn't looking forward to starting more surgeries on her when she's just barely healing from her other surgeries. 

So orthopedics came in, and I was super relieved when he said we're going to wait probably another six months until we work on her foot. This will give her skin some time to firm up and not be so susceptible to skin damage from the casting. Phew... I sighed an internal gasp of relief. But then he pulled up the computer and looked at her hip ultrasound from that morning. He told us that by now, the hips are supposed to be settled properly into their sockets, but Mira's right hip has failed to do so. If it doesn't settle into the socket properly in the next four weeks, she's going to have to wear a brace that will go up over her shoulders, mount to her legs, and pull her legs up towards her chest. This position will force the hips to settle into the sockets in the proper alignment. This was kind of difficult to take in because it has kind of been the first bad news we've received when monitoring her progress. Okay, four weeks, I thought "you can do this baby girl, no big deal, a socket isn't going to take you down,". I chewed that over while I waited for the last doctor of they day to come in. Urology.

We've been anxiously awaiting our next meeting with the urologist to find out if not cathing is still okay. Well, we got some very unexpected news. It turns out the CMG revealed some troublesome results. Mira has been wetting her diapers, which is a great sign... usually. But in her case, it was actually a symptom of something else. In a baby her age, the bladder is supposed to be relaxed almost all the time. For Mira, this is not the case. Her bladder is constantly convulsing, which is why we were hardly getting anything when we were cathing, because her bladder wouldn't allow anything to stay in it for long since it was always agitating itself and pushing everything out. Another problem is that when the bladder convulses to push urine out, the sphincter is supposed to open to allow Mira to urinate without complications. Unfortunately, Mira's does the exact opposite of what it's supposed to do. When Mira's bladder contracts and pushes out urine, her sphincter also contracts, and doesn't allow the urine to come out when it should. This causes her sphincter and bladder to kind of fight with each other instead of work together the way they should. This is also when the concern of kidney damage comes in. If the sphincter doesn't allow the urine to come out, it will reflux backwards though the system, into the kidneys, and start damaging the tissue. This is the number one thing you want to avoid because the kidneys do not heal themselves. Once they're damaged, you're on the track to dialysis or a transplant.

All of this was a lot to take in, and I was fighting back tears the whole time the urologist was explaining what her system is dangerously doing to herself. Then the treatment options were discussed. We are now cathing again... that alone made a tear or two escape from my eyes as soon as he said it... but now we're also giving her medication three times a day presumably indefinitely. This medicine will force her bladder to relax, and her dose will be upped every six months to a year. If the medicine does not cause her bladder and sphincter to act accordingly by the time she is five or six years old, surgeries will be required. He said sometimes the medicine can fix it, but that only applies to a very small window of children, so to monitor her progress, but don't expect this to fix it. There's that word again "expect". We should expect to be cathing her and medicating her indefinitely, and expect that more surgeries could be around the corner by the time she's school age. Geeze, and I was dreading surgery on her foot... I was not expecting to discuss surgery on her organs today, let alone staring into the cold, hard eyes of this being a likely reality. Expecting, expecting, expecting. The things I was expecting, the things I was NOT expecting... And in all that time, I forgot that I wasn't supposed to have any expectations. Had I stuck to that rule, today wouldn't have hurt so bad. It wouldn't have knocked the wind out of me, or hit me in the gut hard enough to do so in the first place, but I unknowingly had underlying expectations. 

I'll have to remember this lesson, and remember it hard, because I don't want blindsided by my own feelings lurking in the shadows like this again. What I want to focus on is the fact that her overall health is great. She is gaining weight, and today hit her own personal record. She is officially nine pounds, her heaviest yet, eating great, sleeping great, and... (Drum roll, please), she started smiling at people the other day!!! Actual smiling, not having gas stuck and smiling in her sleep, nope, she is looking right at me and giving me a beautiful, genuine, ear to ear grin that is pure amusement! 

So tomorrow I will start administering her meds three times a day, and once again, cathing my beautiful, grinning baby. I'll also start doing some hip therapies to try and encourage her hip into the socket properly. I'm sorry that her break was short lived, and I'm sad that she couldn't beat the odds on this one, but she's accomplished so much, and even though I cried and it was hard to take in, this is not the end of the world, and we will be okay. She will be okay. It will be okay. And I will try to get a handle on my underlying expectations, and that, too, will be okay.

6/6/13 Therapy

Today was our first in-home therapy session with the therapist from early intervention. His name is Mike, and he works so very well with Mira. He's very kind to Dustin and Aryanna, as well, and I get really good vibes from him.

Today he showed Joe and I three stretches for her foot, one massage for her legs, and one massage for her back.

The three stretches for her foot, which we hold each stretch for 30 seconds, will help stretch the tissue back to the proper position on her club foot. The massage for her legs, which is just very gentle rubbing, starting from her feet, and rubbing up towards her thigh, allows to help her blood circulate back to her heart. This is why you never massage an extremity away from the heart (which I did not know until today). You are always supposed to push on the tissue in the direction of the heart to help circulation. So we will always start at her foot, and push gently up to her thigh, on all sides of her legs. This will also help the process of trying to awaken some nerves in her legs, and could help her develop some sensation in her lower extremities. The massage on her back is where we tap with two fingers on both sides down her spine. Then apply pressure, using those two fingers, on both sides down her spine. This causes a reflex reaction to the muscles, and makes Mira lift her head while on her belly. Effectively helping her strengthen her muscles and utilize tummy time to the fullest! 

I'm so happy to be learning more ways to help her! I'm very excited to think that some stretches and rubs for a few minutes each day could help her; even if it only helps in the most minuscule ways, it could still make a world of difference!

Getting Help

One of the ways we were trying to get help was seeing if we qualified for a pediatric nurse to care for Mira once I start college back up in less than a month. Unfortunately, today we found out that insurance denied us, so we are not eligible to receive help from a pediatric nurse. While this would have an amazing peace of mind to have, we will find a way to make due without that type of help.

We have, however, been approved for early intervention services, and Mira's new physical therapist, Mike, will start coming to our home to work with us this Thursday. He'll come to our house once a week and teach us therapies to implement in our daily routines that will help Mira gain the strength she needs to meet milestones at the proper times. Like improving her core body strength so she can sit on her own, and improving hand-eye coordination so she can reach for, and play with toys. I'm super excited to have a professional work with Mira and teach Joe and I how to help her to the best of our abilities!

Another way that we are exploring to receive help is by filing for social security for Mira. I've addressed how quickly things can add up, and we're barely scratching the surface of the needs she will have on a long-term basis. This is why we filed for social security. My meeting to see if we qualify is tomorrow morning, so I spent today filling out paperwork, organizing medical records, getting our proof of income/residency in order, sorting through medical personnel contact info, and gathering it all for the appointment tomorrow. Maybe we could use this to pay for a pediatric nurse if it became necessary, or save some money in a fund for her to explore treatments not covered by insurance later down the road. Either way, prayers for a good outcome are always welcome! 

And the most wonderful way we're getting help right now is through our loving family and our wonderful community! My sister and brother-in-law started planning a benefit dinner for us a while ago, which was intended to be a surprise. But she couldn't keep it from us for very long because all of our family members hopped on board to help make it happen. Our community has all pitched in to donate items to raffle, and show their support by RSVPing. It's been really amazing watching how caring everyone is, and the dinner hasn't even happened yet! It's not until June 15th, two Saturdays from now, and I'm so excited for it! I'm so blessed to have so many people that love and care so deeply for Mira! Children are all miracles... Mira just had to prove it in ways many people do not, and to see the love, support, and genuine care from everyone means more than words could ever fairly or accurately describe. I love you all, whether you donated, are attending the dinner, sent up a prayer, or even had a compassionate thought go through your head for my baby... I love you all!

Yay!... Wait... I'm Scared...

Monday, 5/27/2013, was the day we had the all-clear from the doctors to start putting Mira on her back. I've been so excited for this day, this milestone of hers, for what seems like forever, but has only actually been six weeks. I was excited about being able to put her in a real car seat instead of that flimsy car bed she had to ride in since she had to be laying on her belly. I was excited about being able to put Aryanna's old swing together and let Mira use it now. I was excited about being able to lay her down without being terrified that she would roll herself onto her back and possibly cause damage to herself. I was excited about being able to stop putting her diapers on backwards, and being able to stop using the butt flaps now that her incision is healed over. I was so very excited for this day for weeks, and so excited about the possibilities of something so simple, her being on her back, until the day arrived, and it was time to actually do it... Then I was terrified.

When Monday hit, and I realized I could put her on her back, I spent the first half of the day pretending today wasn't the day. I was so scared to actually do it. I was so scared that she wasn't ready. What if she wasn't? What if I hurt her? What if she didn't like it? What if it put pressure in a bad spot on her and caused her pain? What if she choked because she's not used to being on her back and doesn't know how to react if she spits up? ... I was terrified.

These milestones are miraculous and make me so proud of her every time she crosses one, but I'm also so scared to change something with her because I'm so scared of screwing up. Like when they told us we could quit cathing for now. I kept cathing anyways. Not as much, but I still did it every couple days until I was absolutely convinced it was no longer necessary. That point was a huge milestone for her... Peeing on her own... But I was terrified about the nagging feeling of 'what if she's not ready? What if I hurt her? What if, by crossing this bridge, I cause her irreparable damage?' So while I'm so excited and proud to watch her cross these milestones, it's also very scary. 

So I text my friend, Katie, who has a daughter about a month older than Mira, with spina bifida... Miss Lila. Joe and I got to meet little Lila before we gave birth to Mira, and Lila's parents, Bob and Katie have become very valuable friends. So I text Katie and asked her what she did when they gave Lila the okay to be on her back. Katie said they absolutely put her on her back and they couldn't wait! Lila did great, and they were also so relieved to get her out of that stinking car bed and into a nice, secure car seat.

So, I put together the baby swing, and put Mira on her back. I swear I didn't breathe for ten minutes! But my fears turned out to be silly because Mira was so comfortable that she ended up sleeping for four hours in that swing! It's now her new favorite place. She's become more alert since being allowed on her back, she sleeps better, and she's never choked. This also opens up a lot more physical therapy doors because the options were limited while she was belly confined.

My overprotective and overly cautious side had me scared out of my wits to let her finally be on her back, but it turned into another milestone where she never stops amazing me and filling me with unconditional parental pride. 

Letting Loose

May 25th was the day some friends of mine and Joe got married. We had been planning on attending this wedding since before Mira was born, so we figured this would be a good time to let loose and spend a child-free weekend together. This would mean letting Mira be away from me for the first time. A very bitter-sweet concept.

While a child-free weekend sounds fantastic, don't get me wrong, it was very stressful thinking about being away from her. The idea of not being there to watch her constantly, or possibly throwing off my milk supply after working so hard to get it back where it needed to be, or what if something went wrong and I wasn't there? The idea was kind of terrifying. What helped? It helped knowing that I wasn't entrusting her to just anyone. I was entrusting her to my sister. Anyone who has followed our journey knows that my sister, Tammy, is not the ordinary family member. She's been with me since day one. She's my best friend. She loves my children like her own. And she trained with Joe and I in Pittsburgh to learn how to properly care for Mira. She is, without a doubt, the only person other than Joe and myself that I would trust to know how to correctly care for Mira.

The wedding was on a Saturday, so we dropped Mira off at my sister's house Friday night. We said goodbye a hundred times, but kept hovering anyways. It was hard to leave, but the break was also welcomed and relieving. Again, I couldn't have left her with anyone other than Tammy, and I was confident that my sister and Mira would be just fine. I was right.

I never text or called my sister once, and she never had to text or call me either (other than to send me adorable pictures of my little beauty hanging out with my wonderful nieces). The wedding was absolutely wonderful! I may have helped myself to a little too much wine, but the wedding was the most beautiful ceremony and reception I've ever attended! The bride and groom were perfect, and more importantly, perfect for each other; and Joe and I had a wonderful weekend together! 

As much fun as the weekend was, and it was lovely to relax while getting a break, I honestly couldn't wait to get the kids back! Reuniting was amazing! Even after only a couple days, I missed them so much, and it felt foreign to be without responsibility for a good 48 hours.