The unknown is one of the hardest parts about parenting Payten

This video is just on here to indicate how Emmett and I felt about it already being Monday, for we were not wanting the weekend to be over yet! Emmett just happened to more vocal about his disapproval than I was and for several hours, I might add. It seriously was one of those Mommy moments, where I wanted to pull my hair out because I could not take the crying much longer! That Mommy moment came shortly after the third hour hit and he was still crying. Seriously?! Who cries for three hours? Apparently, Emmett does! Thankfully nap time came shortly after the three hour mark, when this Momma was about to lose her cool. Oh how grateful I am for nap time, especially on days like these!

Such an angel when sleeping and usually an angel when he is awake, but for whatever the reason, he was not having it this Monday morning! Oh well, we all have our days like this, it just happened to be his day. Thankfully his nap time lasted a good three hours. The only crappy part was that I still did not get a break, due to Payten still needing a lot of things done, such as administering medications, CPT and breathing treatments, all before the first therapy appointment at 10:30. Luckily with Emmett falling asleep earlier than expected, I was able to get it all done, with time to spare!  Payten and I were even able to have some alone time, which is a rarity in our house and I must say, it was quite nice to have that time together. The frustrating part was that right as the therapist knocked on the door and between getting up to answer the door and returning with the therapist, Payten fell asleep. Seriously, I had just been playing with her and now she was dead asleep, snoring the day away? The therapist was surprised that Payten had been awake just a few short minutes prior to her arrival. We tried everything we could think of to wake her, with no luck. It was beyond frustrating, for Payten needs these therapies and yet she can't benefit from any of them because she is always sleeping. I know it is because Payten is still getting use to the new medication, but come on! Can't something give already?! Hopefully with time, it will get better, but as for now, I guess she will continue to sleep her days away. The feeding therapist and I, did discuss switching her time to 8:30 in the morning to see if that would help with Payten's availability. It's worth a shot, right? I am crossing my fingers that we will see improvement with the time change. I am also hopeful that the other therapist will be willing to make changes to Payten's schedule if needs be, in order for Payten to fully benefit from what they have to offer.

 Physical Therapy was just as frustrating if not more frustrating. During feeding therapy, Payten's PT called to touch base and make sure we were still on for our session, considering everything that has been going on with Payten. Which I informed Miss Anna that Payten was sleeping right at that moment and that I was unsure she would be wake for the session. The PT felt that an hour and a half would be plenty of time for Payten to rest and be up and ready for PT. Therefore we to proceed with the appointment and we also decided that instead of me lugging Payten and Emmett to the clinic, Miss Anna would come to us, that way Payten could rest longer and hopefully be that much more willing and able to preform during PT. Boy were we wrong! Payten did wake up, like Miss Anna said she would, right at 12:30, however right when Miss Anna showed up, Payten went back to sleep. I really am starting to wonder if Payten's body has some kind of radar that alerts her as to when her therapist come, which allows her body just enough time to shut down in order to get out of therapy, all because Payten does not feel up to all the hard work that will be involved during the therapy session. I know it sounds crazy, but I really wonder. I am frustrated with myself, because I feel I should have roused her more while she was awake, prior to Miss Anna getting there, but I didn't not want to brother her too much because I knew PT was coming and what hard work PT entails, therefore I wanted to give her time to relax and wake up on her own, to ensure that Payten would have enough energy for her session. Well, I found how well that worked out and next time I will know better and try rouse her more. Again, this sleeping during therapies is beyond frustrating. And what makes it most upsetting, is the fact that there is nothing I can do about it. It is completely out of my control, as well as Payten's.

While Payten was asleep, her PT and I had a nice long chat about Payten and all of our feelings regarding everything that is going on with her right now. We both expressed how hard it is to see, for this is not the Payten we know and love and we do not know what we can do to help her come back to us. It is so hard, for we know that the seizures need to be controlled, but if the medication is causing her to not function, what good is that doing? It is a hard place to be in as her mother, because I see what the seizures do to her and what state they leave her in and how they effect every aspect of her life, but then I also see the side effects of the medication and how they prevent her from living life and I am left choosing between the two, and trying to figure out what is the best option for her. Believe me, that is a heavy burden to carry, for if I choose no medication, it could leave her in a state of discomfort, pain and unconsciousness, with unknown side effects on her mind and body that could be extremely damaging  and ultimately lead to death. But if I keep her on the medications, it could still leave her in a state of unconsciousness and it might still not fully control the seizures, which could still have similar side effects, that could also lead to death. So here I am left wondering what I should do? I want quality of life not quantity for my daughter, which neither seem to be giving her right now. The only thing I have to rely on is prayer and the impressions and gut feelings I receive after praying. It ultimately boils down to me having enough faith that I am choosing the best path for my daughter and I believe that the right path at this moment is the medication, therefore that is what we will remain doing for her. I just hope that over time she will come around and get use to the dosage she is on, so that she can start living life again, rather than sleeping it away.

Another hard part about today, which I believe was the hardest part of my day, was when I was talking with the PT about how Payten had been in such a good place before all of these seizures, which reminded me of the hope I once had, the hope that I would be able to give Payten a walker for her birthday (which is in a couple weeks) and with that walker, Payten would start taking steps and eventually get the point where our family would see her take a few steps with no help from Joseph and I by Christmas time. What a miraculous gift that would have been, but one we will not see this year. Can we say devastating? Right at that moment, as those thoughts and feelings entered my head, I felt as though my heart was being ripped from my chest and stomped on, for we had come so far and now it was all being ripped away from us. For Payten is no longer in a state where that is even attainable right now and we do not know if she will ever reach that state again. This by far is the hardest part of life with Payten, for we hope and pray that goals will be met and that we will see miracles performed and we come so close to seeing some of these miracles obtained, miracles we have so desperately yearned and waited for, as well as put time and effort in to achieve and it all comes crashing down, because of one minor set back. Words can not describe the pain and frustration that Joseph and I feel. I know that there is still a chance she can get back to this state, because she got there once. But how long will it take for her to get back there? Another five years? Then what? We go through it all over again,  just to be let down all over again, because she has another minor set back? Which leaves us having to start all over again. This is where it becomes too much for our minds to comprehend/handle. This where it becomes extremely hard to remain positive. For you feel like you are fighting a losing battle.  But like I have said in the past, as hard as it is, I have to keep going and keep going I will, with the faith that things will improve and that ultimately hope will conquer all the odds that logic puts forth.

After the PT left, I broke down sobbing, for it was too much to think about. Reality has set in and I am unsure whether we will even get over this hurdle Payten is being faced with. The Doctor, however is still extremely hopeful that within the next two weeks, Payten will be better than ever and she will start regaining her strength again. Which gives me a glimmer of hope that helps during these moments of despair. I hope and pray that he is right and we see great improvements in the weeks to come, for I can not bear to watch Payten live her life like this much longer. My body can not keep going like this either. The stress is becoming too much to bear. I am beyond tired and I ache from head to toe and I know it is all because of the worry and stress that I am under and I desperately need a reprieve from it, for the human body can only handle so much. I do know, however, that all this torture my body is going through and everything Payten is facing, will all come to an end sooner than we realize.  I am just not sure what the ending will be and if the ending will leave me in a more devastated place than I already am in. I know that by saying this, I am living in the future and I know that I should not do that, but honestly, it is hard not to, for it is my daughter's future we are talking about and I love her so much, I can not help but think of that future might entail. I just pray that I have the strength to face whatever is ahead of us and that it will turn out to be what is best for everyone involved. For now, I just have to be thankful for everything I have and the blessings that the Lord bestows upon me and my family each and everyday, for I know we have an abundance of blessings that are beyond compare and for that I am truly grateful. Before I leave I want to ask that you keep Payten in your prayers, for she is in desperate need of them, as are Joseph and I. Thank you for all your support, much love to you all and may you all have a blessed night.