Today started off great! Payten woke up this morning with that sparkle back in her eye (that I was describing in my last post) smiling and ready to start her day! She was happy for most of the day, yippee! Which is indeed very exciting because days like these, have been few and far in between since her seizures have become uncontrolled. Anyways, I was super excited about Payten and how well she was doing, that when my Mom called and invited me to breakfast, I gladly accepted, for it has been awhile since I went and did something fun. At breakfast though, something very sad, yet disturbing happened. I say disturbing because you don't think that anyone can be so uncaring or cold hearted and it is truly shocking then they are! But I should not be surprised by this at all, which is very sad to say, but the truth is, I should be accustom to the ignorance of others when it comes to my disabled daughter, for this type of conduct happens more often than it should, which is truly disheartening if you really think about it.
Let me explain, while at breakfast today, we were greeted by a very self centered, unkind person. I know these are harsh words and harsh judgments to say, but honestly how she acted is exactly that, self centered and unkind. While we were sitting enjoying one anothers company, (meaning my Mom, Dad, Emmett, Payten and I), this Lady approaches. Now, there are plenty of seats in the restaurant for her to sit, but she "chooses" (key word) to sit by us, which we would not have thought twice if it weren't for her actions. As she sits down, you can tell she is very annoyed, which at first I thought, Oh! poor lady, she's having a bad day. But then quickly I realized that we were what she felt was her bad day. After she gets settled in, which was a whole other scene, she starts sighing and huffing loudly, glaring at Payten. Who by the way was not doing anything, she was actually very well behaved if I do say so myself, Payten sat there happily playing with a toy I gave her. Yes there was a little drool coming out of Payten's mouth, but that is Payten, she can't help it when that happens. Which I think was the major concern/complaint of the lady, for it disgusted her to see, which see made clear through mumbles under her breath and other rude comments. Then she proceeds to say to us, you know I really need space, I am going to be here for several hours. Well, congrats-a-damn-lations to you lady! Go sit somewhere else, if my child is bothering you so much! (I did not say that, but I did think it! Thanks Kym for the awesome reference word! LOL) This woman's actions continued for quite awhile until she finally she started bugging the Man on the other side of her, asking if he was going to be finished soon, so she could have his place, which meant further away from the nuisance of a child! (I really don't think that of my child, that is just how she was acting) Until finally, the Man got sick of the way she was behaving and how she kept asking him when he would be done, that he switched places with her.
This whole scenario really should not have bothered me as much as it did, for I did nothing wrong, nor did my daughter, but it did bother me and to be quite frank, it hurt me and my feelings. I am tired of being made to feel like my daughter in a nuisance to those around her. I am tired of worrying about how I will be treated when I go somewhere. And this ignorance shown by others should not, but does at times, keep me from going places, for I don't want to deal with the cruelty of others and the nonsense and ignorance and therefore I choose to just stay home. Why can't we as a society learn tolerance, understanding and love for one another. Why do we feel it necessary to treat others this way? Especially those who don't seem to fit the mold we as a society feel they should fit? Is it really that hard? This whole experience reminds me of a post, that I posted years back, shortly after Payten was born. It was the first time I had ever gone out with Payten since she had been released from the hospital after her tracheotomy and G-tube placement. And before I go any further with my thoughts, I want to share that post with you. Here is the post,
(Today was the real first day out on the town with Payten. Not really on the town, she had a Doctor's appointment. Anyways, while I was on this adventure I met two different kinds of people. Which really got me to thinking who I was like and whom I wanted to be like. Let me explain.... When I arrived at my Doctors office, I was having a hard time because there is a lot of things that go with taking Payten out. There is an O2 tank, Suctioning machine, catheters, Feeding pump, Trach and other medical supplies, Diaper bag, and her medical folder. (I don't think I'm forgetting anything!) None of which are small! So you can imagine how bad I was struggling, being new to this and all. But when I arrived at the door, I was greeted by a wonderful lady who helped me with my things and with Makenna. Not only did she help me, but she did it with a smile on her face and she asked me how I was doing. Never did she mention my child or the fact that Payten had special needs, she just talked to me and acted like all was normal. Now please, don't get me wrong I do not mind having people show concern and compassion toward me and Payten, but it is also nice to have someone just act like everything is the norm, which is exactly what she did. Now that's the first person! Here is the second person or persons! The second person I met was the person in the waiting room as I walked up to go back to see the doctor, whom looked pitifully at my daughter, shakes her head and says, "Oh what a shame, that is no life for a child." Really love and affection is no life for a child? I wanted to cry, but had no time to! So I just walked away heartbroken. Then the other persons that fall into the "second person" category, I met as I was leaving the doctors office. As I walked out into the waiting to leave, I was greeted by two women whom had horrified expressions on their faces, which is understandable to an extent, because, yes there is no denying my child is different with everything that goes with her, but we don't need people acting like she is disease infested, which is what happened. Along with their horrified expressions, came fear as they grabbed their children and held them close so that they would not be near my child, they acted as if there children would ketch whatever Payten had. I am so not exaggerating, you should have seen their faces, it was so sad! And then as I am trying to get out the door, which is extremely hard when you have a stroller and your hands full of paperwork and a three year old child. Seriously just imagine it in your head and you will probably see what I was going through. Now, what do you think these two Ladies did? Did they help me? NO! Rather they sat there and stared at me. They didn't even try to look busy, they didn't look away, nothing, they just stared! It was humiliating to say the least and extremely sad. I am not going to lie I was really mad at first and I had to call a friend, well actually, a couple friends to be exact (thanks, Kym and Kayla!) and vent my frustrations to them. After I vented, I got to thinking about how often have I been that second person? How often have I treated someone this poorly? Hopefully not too often, and hopefully not to the extent they went. But how often have I stared at someone in horror or disbelief? How often have I been too busy to help someone? How often have I been to wrapped up in myself to realize someone needed me? How often have I spoken unkindly about someone? Too often, because I too am at fault when it comes to this. I know I have done these things and doing it one time is one time too many. So what did this experience teach me? This experience has made me realize that I want to be that first person! I want to be the person who is happy to help, the person who is paying attention to others needs, the person who is not wrapped up in themselves, the person who tries to make a difference around them without even knowing they are, the person who is always kind in their words and deeds! That is what this life is all about! Making a difference, helping others, and not always putting yourself first! I am grateful for this experience and the lesson it taught me. I hope I can be better by being a little kinder and more compassionate to those around me.)
Now how about that?! Wow! Doesn't that just go perfectly with the experience I had today?! With the exception for the one gal who showed kindness, she was a ROCK STAR and the person of whom we should all follow! But like I said before, these types of experiences happen all too often and I am tired of it! I guess I need to not let it hurt me, but rather allow it to teach me, that I may take the good from it and move on. The good meaning, how not to act. I need to not allow the ignorance of others keep me from living, rather I need to live my life and if I run into ignorance, which I will, I need to remember to just blow it off, walk away and move on, while treating people with respect, love, tolerance and kindness. Before I end, I want to say thank you to all those people out there who do show love and kindness. I don't think you fully understand the impact you have on those around you. By small and simple things, great things come to pass and therefore when you do a simple act of kindness, such as, smile or a simple hello, etc. you have a huge impact on the person you bestowed that act to. These simple things we do, whether it be good or bad, they make a difference and wouldn't you rather be the good in the world and than the bad? I know I would! As we go about our days, we really need to keep that in the back of our minds, we really need to think to ourselves, What good do we want to see if the World today? And then go and be/do that good. This experience today, just like the one a few years back, has reminded me and taught me that I need to be better and strive to better myself each and everyday. I am again very thankful for this reminder, even though it did bring me a little heartache in the process.
Even though the middle of my day got dampened by a dark cloud of unkind actions, it still ended well. Payten did a lot better today, no, she was not seizure free, but she did recover quickly from the seizure she had and she was therefore awake for most of her day, playing and laughing. I truly think that we have found the answer to controlling her seizures, but it will take some time to fully gain that control. Again thank you for your concern, your love, your thoughts, and prayers for my daughter, they truly mean the world to us and we love you.
Thursday, August 29, 2013
Attitude is everything!
This was my post yesterday on Facebook, 8/27
Oh my! Today is going to be interesting. Payten has already begun inconsolable crying this morning. It seemed to be getting better for her some, (SOME being the key word.) but we will see what today brings. We are suppose to have therapy at 12:30 and then Zachary has OT at 2:30, after that Payten has a 4:20 appointment with Dr. P to discuss sleep study results. (Praying those are good.) Then we have our monthly pack meeting for cub scouts @ 6:30, but I need to be there at 6 to help set up! Where does homework and dinner fit into this? I guess I will find time to make dinner this morning and put it away, all while cleaning the house for therapies at 12:30, getting Payten's medications, feed and keeping her comfortable and Emmett entertained, etc.! My brain is on overload thinking about all this! These are the days I dislike the most! I don't mind being busy, but this, this is too busy? But all are important things, so a forward I will go! ~ feeling overwhelmed
Now I share this with you because like everyone else I am human. I have my moments where I am overwhelmed, discouraged and negative and yesterday as you can see started out with me having one of my "human" moments of pity/poor me. But what I hope people understand is that I do not post these as a poor me, oh, I have so much to do, feel bad for me. Rather I post them, because it helps me. Venting and releasing frustration helps me and since I don't have much adult interaction through my days, I use facebook as my source of venting and frustration outlet. I know, probably not the best place, but hey it helps. And it definitely helped yesterday! Once I released my overwhelming frustrations of how busy I was yesterday, I was able to reevaluate and take a step back and say, Hey, I need to stop, take a deep breath and calm down! It will all be okay, I can do this and if everything on this list does not get done, then it does not get done, but at least I know I did my best and then the whole perspective of my day changed and it got better and better. Now who says attitude isn't everything?! Cause it is! But with that being said, I could not have done it on my own.
Shortly after I posted or rather "vented" my frustrations on facebook, a friend from my Church instant messaged me, saying, Kim, I have some free time this morning, can I come and help you out? Now, let me be honest, the first thought was, really? Oh boy! What did I do? I opened my big mouth and now everyone thinks I am a whiner and fishing for help. And the only reason she wants to help is because she feels sorry for me, etc. etc. Then it hit me, Really? Who am I? What am I thinking? Get over yourself! Yes, maybe people do think I am a whiner! Who cares. I am! Everyone at one point or another whines about something and today I had some good reasons to whine! So get over it and move on. So what if someone feels bad for me and wants to help, let them help. You put it out there, deal with the consequences and swallow your pride and let people do what they can! So, that is exactly what I did. I got over myself and swallowed my pride and allowed this sweet gal to come and help me, which was truly a God send. Seriously, my day probably would not have been as good of a day, if it were not for this sweet gal and her kind act of service. It might have been a small and simple thing on her part, but it had huge impact on my life, which helped me become even more calm, cool and collected, able to see the positive side to a rather stressful, busy day.
With my sweet friends help that morning, I was able to accomplish enough to help set up the rest of my day to go rather smoothly and rather smoothly it went! I ended the day with this post on Facebook,
So the overwhelmed feeling faded today! And a day that seemed impossible, turned possible! It was a great day! A friend stopped by and helped me with Payten while I cleaned. Payten did have a seizure, however, she recovered okay and preformed so, so, during her therapy session. While Emmett was napping and Payten was having therapy, I was able to get dinner made, then I ran Zachary to OT, got home from that just in time to get Payten to the Doctors. In the meantime, Joseph, helped by putting dinner in the oven and having Zachary do "most" of his homework. I got home from the Doctors at 5, we sat down and had dinner together as a family and then I helped Zach finish his homework and off to Scouts we went! To top it all off, Payten's sleep study results were great! She went from having 150+ episodes of centralized apnea, to only 2 episodes of central apnea and a few episodes of obstructive apnea! Can we say AWESOME?! Bye, Bye ventilator and Bye, Bye Trach, for good! Now if we can get these darn seizures under control, we will be doing good! Tomorrow we see Dr. Cook about the seizures and we have an IEP meeting for Payten. She will start preschool next week! So excited and nervous all rolled in one! Counting my blessings! ~ Feeling Accomplished
Now, what changed?! That is a HUGE difference from the post that morning! What changed in those few hours during the day? I tell you what changed, Perspective, Attitude and Releasing total control. I was able to see that as long as I asked for help from my Heavenly Father and I was willing to release control and allow others in who wanted to help me and change my attitude from woe is me, I am too overwhelmed, to, Okay, I got this, I am going to do my best and that will be good enough! I found that I can be Wonder Woman! Seriously, attitude, perspective and letting go of pride is everything. If you can find the right perspective, change your attitude from negative to positive and not allow pride to get in your way, you can and will accomplish anything! I am living proof!
Now, as for today, was it as good of a day? Not so much. Why, you ask? Because I allowed negativity and discouragement to get in my way. We had an appointment with Doctor Cook today and it was a typical appointment, but still hard because we were discussing the game plan for Payten and getting her seizures under control. Payten is still having seizures daily and this has been going on for three plus weeks. She has gone from a little girl who would wake up with a sparkle in her eye, ready to begin the day happy, wanting to learn new things and play, to a little girl who wakes up sad, upset, sometimes angry, not wanting anything to do with anyone, out of it to the point of little interaction/eye contact with others, sleeping the day away. It is truly affecting her quality of life and it needs to be handled. So after a long discussion with the Doctor, we decided to try to up her Keppra (AGAIN!) from 14 mls to 15 mls. Meaning she will be getting a total volume and 200 mgs daily per dosage to weight. That is a lot and it is worrisome because as much as these drugs help, they do have side effects that can be dangerous, so the higher the dose the more risk involved. We are hoping and praying that this will be the solution. He wants us to call him in a couple days and let him know if it has changed anything. If it has, then great we will keep going until it changes again, but if it does not help, then we will look to other medications for answers. It is an extremely frustrating and discouraging process, that becomes hard to remain hopeful and positive during. If the increased dosage of Keppra does help, then all we will need to keep an eye on her liver function, because like I said before, the more you go up on a medication, the more risks they have and Keppra just happens to have to risk of liver damage. So as much as I wanted to have a good day, it was hard because all I could think of was the discouraging, what if factors to Payten's seizure situation.
To top it all off, we made to hard decision to put off preschool for Payten, even though we know it will be good for her to go, we know that right now it is not the time to send her, for we need to figure out these seizures and gain control of them, before we send her into a situation where they are not fully equipped at dealing with them. Or at least dealing with them as well as Joseph and I are. So we canceled the IEP meeting that was suppose to be this afternoon and it is on hold until we can figure out these darn seizures! So again, though I know that it is all about perspective, attitude and letting to of pride, I am still understanding of the fact that I am human and I am still going to have days of discouragement, frustration and grief and that is okay, for I ultimately know that even though it may seem endless/hopeless now, it will get better. And though at times, I feel like these seizures might not ever go away, I will still remain hopeful that they can go away and will go away. I guess what I am ultimately saying is, try to remain as positive as you can, keeping a clear perspective, relinquishing pride, for if you do, I truly believe it will lead you to a happy, productive, positive life, but still remain open to the fact that you are human and therefore will still have bad days, so don't be too hard on yourself. Keep the faith and press forward my dear friends! We love you all very much and we asked that you please keep sending positive thoughts, prayers and energy our way, because it is felt and it truly helps!
Oh my! Today is going to be interesting. Payten has already begun inconsolable crying this morning. It seemed to be getting better for her some, (SOME being the key word.) but we will see what today brings. We are suppose to have therapy at 12:30 and then Zachary has OT at 2:30, after that Payten has a 4:20 appointment with Dr. P to discuss sleep study results. (Praying those are good.) Then we have our monthly pack meeting for cub scouts @ 6:30, but I need to be there at 6 to help set up! Where does homework and dinner fit into this? I guess I will find time to make dinner this morning and put it away, all while cleaning the house for therapies at 12:30, getting Payten's medications, feed and keeping her comfortable and Emmett entertained, etc.! My brain is on overload thinking about all this! These are the days I dislike the most! I don't mind being busy, but this, this is too busy? But all are important things, so a forward I will go! ~ feeling overwhelmed
Now I share this with you because like everyone else I am human. I have my moments where I am overwhelmed, discouraged and negative and yesterday as you can see started out with me having one of my "human" moments of pity/poor me. But what I hope people understand is that I do not post these as a poor me, oh, I have so much to do, feel bad for me. Rather I post them, because it helps me. Venting and releasing frustration helps me and since I don't have much adult interaction through my days, I use facebook as my source of venting and frustration outlet. I know, probably not the best place, but hey it helps. And it definitely helped yesterday! Once I released my overwhelming frustrations of how busy I was yesterday, I was able to reevaluate and take a step back and say, Hey, I need to stop, take a deep breath and calm down! It will all be okay, I can do this and if everything on this list does not get done, then it does not get done, but at least I know I did my best and then the whole perspective of my day changed and it got better and better. Now who says attitude isn't everything?! Cause it is! But with that being said, I could not have done it on my own.
Shortly after I posted or rather "vented" my frustrations on facebook, a friend from my Church instant messaged me, saying, Kim, I have some free time this morning, can I come and help you out? Now, let me be honest, the first thought was, really? Oh boy! What did I do? I opened my big mouth and now everyone thinks I am a whiner and fishing for help. And the only reason she wants to help is because she feels sorry for me, etc. etc. Then it hit me, Really? Who am I? What am I thinking? Get over yourself! Yes, maybe people do think I am a whiner! Who cares. I am! Everyone at one point or another whines about something and today I had some good reasons to whine! So get over it and move on. So what if someone feels bad for me and wants to help, let them help. You put it out there, deal with the consequences and swallow your pride and let people do what they can! So, that is exactly what I did. I got over myself and swallowed my pride and allowed this sweet gal to come and help me, which was truly a God send. Seriously, my day probably would not have been as good of a day, if it were not for this sweet gal and her kind act of service. It might have been a small and simple thing on her part, but it had huge impact on my life, which helped me become even more calm, cool and collected, able to see the positive side to a rather stressful, busy day.
With my sweet friends help that morning, I was able to accomplish enough to help set up the rest of my day to go rather smoothly and rather smoothly it went! I ended the day with this post on Facebook,
So the overwhelmed feeling faded today! And a day that seemed impossible, turned possible! It was a great day! A friend stopped by and helped me with Payten while I cleaned. Payten did have a seizure, however, she recovered okay and preformed so, so, during her therapy session. While Emmett was napping and Payten was having therapy, I was able to get dinner made, then I ran Zachary to OT, got home from that just in time to get Payten to the Doctors. In the meantime, Joseph, helped by putting dinner in the oven and having Zachary do "most" of his homework. I got home from the Doctors at 5, we sat down and had dinner together as a family and then I helped Zach finish his homework and off to Scouts we went! To top it all off, Payten's sleep study results were great! She went from having 150+ episodes of centralized apnea, to only 2 episodes of central apnea and a few episodes of obstructive apnea! Can we say AWESOME?! Bye, Bye ventilator and Bye, Bye Trach, for good! Now if we can get these darn seizures under control, we will be doing good! Tomorrow we see Dr. Cook about the seizures and we have an IEP meeting for Payten. She will start preschool next week! So excited and nervous all rolled in one! Counting my blessings! ~ Feeling Accomplished
Now, what changed?! That is a HUGE difference from the post that morning! What changed in those few hours during the day? I tell you what changed, Perspective, Attitude and Releasing total control. I was able to see that as long as I asked for help from my Heavenly Father and I was willing to release control and allow others in who wanted to help me and change my attitude from woe is me, I am too overwhelmed, to, Okay, I got this, I am going to do my best and that will be good enough! I found that I can be Wonder Woman! Seriously, attitude, perspective and letting go of pride is everything. If you can find the right perspective, change your attitude from negative to positive and not allow pride to get in your way, you can and will accomplish anything! I am living proof!
Now, as for today, was it as good of a day? Not so much. Why, you ask? Because I allowed negativity and discouragement to get in my way. We had an appointment with Doctor Cook today and it was a typical appointment, but still hard because we were discussing the game plan for Payten and getting her seizures under control. Payten is still having seizures daily and this has been going on for three plus weeks. She has gone from a little girl who would wake up with a sparkle in her eye, ready to begin the day happy, wanting to learn new things and play, to a little girl who wakes up sad, upset, sometimes angry, not wanting anything to do with anyone, out of it to the point of little interaction/eye contact with others, sleeping the day away. It is truly affecting her quality of life and it needs to be handled. So after a long discussion with the Doctor, we decided to try to up her Keppra (AGAIN!) from 14 mls to 15 mls. Meaning she will be getting a total volume and 200 mgs daily per dosage to weight. That is a lot and it is worrisome because as much as these drugs help, they do have side effects that can be dangerous, so the higher the dose the more risk involved. We are hoping and praying that this will be the solution. He wants us to call him in a couple days and let him know if it has changed anything. If it has, then great we will keep going until it changes again, but if it does not help, then we will look to other medications for answers. It is an extremely frustrating and discouraging process, that becomes hard to remain hopeful and positive during. If the increased dosage of Keppra does help, then all we will need to keep an eye on her liver function, because like I said before, the more you go up on a medication, the more risks they have and Keppra just happens to have to risk of liver damage. So as much as I wanted to have a good day, it was hard because all I could think of was the discouraging, what if factors to Payten's seizure situation.
To top it all off, we made to hard decision to put off preschool for Payten, even though we know it will be good for her to go, we know that right now it is not the time to send her, for we need to figure out these seizures and gain control of them, before we send her into a situation where they are not fully equipped at dealing with them. Or at least dealing with them as well as Joseph and I are. So we canceled the IEP meeting that was suppose to be this afternoon and it is on hold until we can figure out these darn seizures! So again, though I know that it is all about perspective, attitude and letting to of pride, I am still understanding of the fact that I am human and I am still going to have days of discouragement, frustration and grief and that is okay, for I ultimately know that even though it may seem endless/hopeless now, it will get better. And though at times, I feel like these seizures might not ever go away, I will still remain hopeful that they can go away and will go away. I guess what I am ultimately saying is, try to remain as positive as you can, keeping a clear perspective, relinquishing pride, for if you do, I truly believe it will lead you to a happy, productive, positive life, but still remain open to the fact that you are human and therefore will still have bad days, so don't be too hard on yourself. Keep the faith and press forward my dear friends! We love you all very much and we asked that you please keep sending positive thoughts, prayers and energy our way, because it is felt and it truly helps!
Sunday, August 25, 2013
Summer of 2013
Wow! You are probably thinking four blog posts within days of each other!? Yep, I think that is a new record for me, oh well I try! Today I am taking advantage of the fact that it is a peaceful Sunday afternoon and I am at home with Payten while the others are at Church and since Payten is sleeping, I thought that it was as good a time as any to sit down and blog, so here goes....
School has now been back in session for a couple of weeks and with that comes the end of summer, which brings bitter sweet feelings. I think my daughter Makenna said it best, "Ugh! Why can't it still be summer! I never see you or Dad anymore, cause this School thing gets in the way!" Yes Makenna, yes it does! Unfortunately, school does get in the way of family time and therefore we have to be more creative with our time, so that we still are able to have quality family time, despite school and other obligations. Though Makenna is right about Summer being awesome and fun with all the time we get to spend together, she forgets that school is a necessary part of life and it brings good things with it too, such as structure, routine, and learning! Now, two of these three things I mentioned are what makes the end of Summer, beginning of School so appealing to me, routine and structure! My OCD side of me screams for routine and structure, and that, my friends, is why I say with the end of Summer and the start of School brings mixed emotions, for I do miss all the time as a family, but I love the routine and structure that comes with the School year!
But with that said, I am truly sad for this particular Summer to be over. The Summer of 2013 will always be a special summer I believe for our entire family. This was the summer we were able to take a family vacation. Now some of you may think, really?! Isn't that what everyone does during the summer, family vacations?! Though, you are right, a lot of families do spend their summers vacationing, but for our family it was the first vacation in seven years and so that is why it is such a big deal and will be a Summer to remember!
This was a much needed trip for everyone, especially Payten. Don't get me wrong, I think everyone deserved this vacation, for it was long over due, but I say especially Payten, because her life is an hour glass of time, that is ticking away, with no real idea of when the sand will run out and the clock will stop. So we felt an urgent need to take this time to go on vacation, because the hour is close at hand and we did not want to say goodbye, feeling as though we had a "bucket list" of things that we never accomplished with our sweet Payter Tater. Though, that was one of the major factors behind this vacation, it was not the only factor. We also wanted to show our other children our appreciation for them by taking them on a fun filled adventure/vacation.
I don't think anyone can fully comprehend the sacrifice that is involved on everyone when there is a special needs child in the family. Our children have had to sacrifice so much, in order to allow Joseph and I the time that is needed in caring for our sweet Payten. Zachary and Makenna have had to sacrifice so much in their short lives. Such as, having to let go of the idea of having their Mom volunteer in their classrooms or go on field trips with them, etc. They have had to sacrifice extra-curricular activities, so that Payten could have the necessary therapies and other appointments that she needs to help better her life. They have had to sacrifice play dates and birthday parties, etc. in order to accommodate Payten and her needs and with all this sacrifice has come very little, if any, complaints on their end. They have been such troopers through all of this. They are so caring and understanding towards it all. I remember when Zachary was in kindergarten and they were having a field and he said to me, "Mom, I really wish that you could go with me, but I know Payten needs you more and therefore I understand and know that no matter what, you love me and that if things were different you would be there, but right now Payten needs you more than I do." This coming from a 5 yr. old's mouth, is incomprehensible, but it is true. These words have had to come out of my children's mouths more often than you think and though it is heart breaking at times to hear, it is also heartwarming to know deep down that your children are so understanding and forgiving and confident in the knowledge that you love them. Joseph and I have been truly blessed with some awesome kids and therefore we wanted to give back to them some of the sacrifices they have given to us. This trip was truly a blessing for all involved.
It took a lot of effort on Joseph and Mines part and a lot of prayer. I worried up until the day we left, that somehow we would have to cancel the trip and break hearts, due to something going wrong, such as Payten being sick or car troubles, etc. I remember trying to get the kids excited for the trip and Zachary saying, "Makenna, don't get your hopes too high, it may not happen, we don't know that it is a sure thing until we get there." Now that statement is the story of our lives, we mean well in planning fun things to do, but many a times they are sacrificed due to the needs of Payten, whether it be illness or hospitalizations, many a times have we had to cancel a fun outing because of these things. And though I am accustom to this, it was still heart wrenching to hear these words leave my ten year old's mouth. So, after hearing him say that, it made this trip that much more of a priority then ever before and my prayers became that much more demanding in my pleads that everything would fall into place and that Payten would be well. And let me just say, my prayers were heard, everything fell into place perfectly and Payten was the healthiest she has been in awhile. This vacation was truly a gift from God.
We had such a great time! First we went to San Diego and stayed with Joseph's sister, Rebecca, in her lovely guest house. It was luxury living at it's best! It felt like our home away from home. We are truly grateful for their hospitality in letting us stay there. It was so fun for the kids to see their cousin's and play with them. The highlight of San Diego, was Coronado Island and it beach! The kid's loved the beach there! They had so much fun running and playing in the water, as well as building sandcastles in the sand. Payten loved the breezed and sunshine, she also loved the feel of the sand between her toes and the cool ocean water, that she was able to stand in. It truly was a dream come true. I remember as kid, loving the beach! I remember going with friends and family and playing in the water and building sandcastles, while around a bonn fire. I remember the joy it brought me, as well as the serenity and peace it brought my soul and I wanted to give those same memories and feelings to my kids, especially my Payten. Why Payten, because, Payten can not live on her own, Payten needs everything done for her and part of that is living. I don't mean just eating and breathing, I mean truly living and living life to the fullest! When I think of Payten, I think of the song, I hope you dance, by Lee Ann Womack, which goes like this,
I hope you never lose your sense of wonder, You get your fill to eat, but always keep that hunger, May you never take one single breath for granted, God forbid love ever leave you empty handed, I hope you still feel small when you stand beside the ocean, Whenever one door closes I hope one more opens, Promise me that you'll give faith a fighting chance, And when you get the choice to sit it out or dance,
I hope you Dance....I hope you Dance. I hope you never fear those mountains in the distance, Never settle for the path of least resistance, Livin' might mean takin' chances but they're worth takin', Lovin' might be a mistake but it's worth makin', Don't let some hell bent heart leave you bitter, When you come close to sellin' out reconsider, Give the heavens above more than just a passing glance, And when you get the choice to sit it out or dance. I hope you dance.....I hope you dance.
Now this song is not necessarily for Payten, but rather it is for me! It helps me to remember that I am Payten's voice, her hands, her feet, her everything and I will dance for her! I will never have her sit out, I will always help her dance! And that is why it was especially important for me to have her experience the beach and all of it's wonders, because it will not be her fault if she does not see all that this life has to offer, but rather it will be my fault as her mother and I do not want to live with regrets after this sweet child leaves my arms, rather I want a heart filled with memories of the times she danced! And Payten dipping her feet in the Ocean, while her Daddy held her up will be a forever memory of a time when Payten danced!
Not only did we see the beach in San Diego, but we went to the Zoo while we were there too. That was an adventure in itself. Have you ever been to the San Diego Zoo? Well, if you have, then you know the hills throughout, which are not a big deal, until you are pushing a wheel chair that weighs 80lbs. and a child in it that adds another 40lbs and then another child hitching a ride on it that adds another 50lbs and a couple bags filled with diapers and food, etc. probably adding an additional 10lbs, up the massive hills, then it becomes HELL! LOL! Seriously, it was extremely difficult pushing Payten throughout the Zoo, but again it was worth every minute of memories made. We loved all the animals and shows that we were able to see there. It truly added to the experience of our vacation.
After we spent 5 days in San Diego, we set off for more fun filled adventures at the Happiest Place on Earth, Disneyland! Before I go any further in our experiences at Disneyland, I need to say thank you to my Mother and Father, for if it were not for their help, we would not have gone to Disneyland and been able to make the memories that we were able to make there, so to them we say thank you. Disneyland by far was the funniest part of the vacation, but why wouldn't it be, after all it is the Happiest Place on Earth?! We were able to receive the total Disney experience by staying at the California Grand Hotel and Resort which is a Disneyland Park Hotel and by ordering the Disneyland dining package, which included character breakfasts and lunches. Which in my opinion, was worth every penny! We loved the character dining, it was Emmett's favorite part of the whole trip! Food and cartoon character's, two of his favorite things! Payten loved it too, not the food, but she loved seeing and interacting with all the Characters, it was truly priceless to see.
Not only did we stay at a super nice hotel and get an awesome dining package, but because of Payten's health and physical needs, we were able to receive special accommodations and were given what is called the "Green Light" pass, which we were told is what they give to Make A Wish kids and with that pass we were able to go to the front of the line on every ride and we were given the chance to ride it again if we desired to do so. It was a Dream come true if I say so myself! My kids were in absolute heaven! We were able to ride every single ride at Disneyland and California Adventure at least once, if not more! Examples being, Zach road Star Tours 8 times and we rode Pirates 3 times and Winnie the Pooh 6 and the list goes on and on! Some of the favorites were, Star Tours, Space Mountain, Matterhorn (sp), Splash Mountain, Indiana Jones, Tea Cups, Pirates of the Caribbean, Soaring Over California, Cars Land, Grizzly Mountain and much more! Payten's favorites consisted of, Finding Nemo Submarine ride, Winnie the Pooh, Cars land racers, Monsters Inc., Ariel's under the sea adventure, Toy story Mania, It's a Small World, and so much more! It truly was a blast to watch my kids faces light up as they ran around with no care in the world, but what ride they would do next! It truly was a blessed 5 days of carefree wonder and if I could we would do it Monthly! But I'll take every seven years if that is all we can get! This trip helped put back a sense of joy and laughter that we had forgotten and rejuvenated our souls and I could not help but write it down so that if I ever do start to forget, I can come back and read about it.
This indeed will truly be a summer I will never forget! Time is a wheel, that is always in constant motion, moving along the way, and I do not want to be a person who looks back over theirs years with regret, wondering where their time was spent. Rather I want to fill my years with memories of things accomplished and life moments that were worth living, so that when the time comes and it will come all too soon, for Payten to leave my loving arms, that I will know without a shadow of a doubt, that I did the best I could to fulfill a "buck list"of life's wonder-ments and helped my daughter dance! I hope that we all Dance throughout our life and have summers such as this to remember!
School has now been back in session for a couple of weeks and with that comes the end of summer, which brings bitter sweet feelings. I think my daughter Makenna said it best, "Ugh! Why can't it still be summer! I never see you or Dad anymore, cause this School thing gets in the way!" Yes Makenna, yes it does! Unfortunately, school does get in the way of family time and therefore we have to be more creative with our time, so that we still are able to have quality family time, despite school and other obligations. Though Makenna is right about Summer being awesome and fun with all the time we get to spend together, she forgets that school is a necessary part of life and it brings good things with it too, such as structure, routine, and learning! Now, two of these three things I mentioned are what makes the end of Summer, beginning of School so appealing to me, routine and structure! My OCD side of me screams for routine and structure, and that, my friends, is why I say with the end of Summer and the start of School brings mixed emotions, for I do miss all the time as a family, but I love the routine and structure that comes with the School year!
But with that said, I am truly sad for this particular Summer to be over. The Summer of 2013 will always be a special summer I believe for our entire family. This was the summer we were able to take a family vacation. Now some of you may think, really?! Isn't that what everyone does during the summer, family vacations?! Though, you are right, a lot of families do spend their summers vacationing, but for our family it was the first vacation in seven years and so that is why it is such a big deal and will be a Summer to remember!
This was a much needed trip for everyone, especially Payten. Don't get me wrong, I think everyone deserved this vacation, for it was long over due, but I say especially Payten, because her life is an hour glass of time, that is ticking away, with no real idea of when the sand will run out and the clock will stop. So we felt an urgent need to take this time to go on vacation, because the hour is close at hand and we did not want to say goodbye, feeling as though we had a "bucket list" of things that we never accomplished with our sweet Payter Tater. Though, that was one of the major factors behind this vacation, it was not the only factor. We also wanted to show our other children our appreciation for them by taking them on a fun filled adventure/vacation.
I don't think anyone can fully comprehend the sacrifice that is involved on everyone when there is a special needs child in the family. Our children have had to sacrifice so much, in order to allow Joseph and I the time that is needed in caring for our sweet Payten. Zachary and Makenna have had to sacrifice so much in their short lives. Such as, having to let go of the idea of having their Mom volunteer in their classrooms or go on field trips with them, etc. They have had to sacrifice extra-curricular activities, so that Payten could have the necessary therapies and other appointments that she needs to help better her life. They have had to sacrifice play dates and birthday parties, etc. in order to accommodate Payten and her needs and with all this sacrifice has come very little, if any, complaints on their end. They have been such troopers through all of this. They are so caring and understanding towards it all. I remember when Zachary was in kindergarten and they were having a field and he said to me, "Mom, I really wish that you could go with me, but I know Payten needs you more and therefore I understand and know that no matter what, you love me and that if things were different you would be there, but right now Payten needs you more than I do." This coming from a 5 yr. old's mouth, is incomprehensible, but it is true. These words have had to come out of my children's mouths more often than you think and though it is heart breaking at times to hear, it is also heartwarming to know deep down that your children are so understanding and forgiving and confident in the knowledge that you love them. Joseph and I have been truly blessed with some awesome kids and therefore we wanted to give back to them some of the sacrifices they have given to us. This trip was truly a blessing for all involved.
It took a lot of effort on Joseph and Mines part and a lot of prayer. I worried up until the day we left, that somehow we would have to cancel the trip and break hearts, due to something going wrong, such as Payten being sick or car troubles, etc. I remember trying to get the kids excited for the trip and Zachary saying, "Makenna, don't get your hopes too high, it may not happen, we don't know that it is a sure thing until we get there." Now that statement is the story of our lives, we mean well in planning fun things to do, but many a times they are sacrificed due to the needs of Payten, whether it be illness or hospitalizations, many a times have we had to cancel a fun outing because of these things. And though I am accustom to this, it was still heart wrenching to hear these words leave my ten year old's mouth. So, after hearing him say that, it made this trip that much more of a priority then ever before and my prayers became that much more demanding in my pleads that everything would fall into place and that Payten would be well. And let me just say, my prayers were heard, everything fell into place perfectly and Payten was the healthiest she has been in awhile. This vacation was truly a gift from God.
We had such a great time! First we went to San Diego and stayed with Joseph's sister, Rebecca, in her lovely guest house. It was luxury living at it's best! It felt like our home away from home. We are truly grateful for their hospitality in letting us stay there. It was so fun for the kids to see their cousin's and play with them. The highlight of San Diego, was Coronado Island and it beach! The kid's loved the beach there! They had so much fun running and playing in the water, as well as building sandcastles in the sand. Payten loved the breezed and sunshine, she also loved the feel of the sand between her toes and the cool ocean water, that she was able to stand in. It truly was a dream come true. I remember as kid, loving the beach! I remember going with friends and family and playing in the water and building sandcastles, while around a bonn fire. I remember the joy it brought me, as well as the serenity and peace it brought my soul and I wanted to give those same memories and feelings to my kids, especially my Payten. Why Payten, because, Payten can not live on her own, Payten needs everything done for her and part of that is living. I don't mean just eating and breathing, I mean truly living and living life to the fullest! When I think of Payten, I think of the song, I hope you dance, by Lee Ann Womack, which goes like this,
I hope you never lose your sense of wonder, You get your fill to eat, but always keep that hunger, May you never take one single breath for granted, God forbid love ever leave you empty handed, I hope you still feel small when you stand beside the ocean, Whenever one door closes I hope one more opens, Promise me that you'll give faith a fighting chance, And when you get the choice to sit it out or dance,
I hope you Dance....I hope you Dance. I hope you never fear those mountains in the distance, Never settle for the path of least resistance, Livin' might mean takin' chances but they're worth takin', Lovin' might be a mistake but it's worth makin', Don't let some hell bent heart leave you bitter, When you come close to sellin' out reconsider, Give the heavens above more than just a passing glance, And when you get the choice to sit it out or dance. I hope you dance.....I hope you dance.
Now this song is not necessarily for Payten, but rather it is for me! It helps me to remember that I am Payten's voice, her hands, her feet, her everything and I will dance for her! I will never have her sit out, I will always help her dance! And that is why it was especially important for me to have her experience the beach and all of it's wonders, because it will not be her fault if she does not see all that this life has to offer, but rather it will be my fault as her mother and I do not want to live with regrets after this sweet child leaves my arms, rather I want a heart filled with memories of the times she danced! And Payten dipping her feet in the Ocean, while her Daddy held her up will be a forever memory of a time when Payten danced!
Not only did we see the beach in San Diego, but we went to the Zoo while we were there too. That was an adventure in itself. Have you ever been to the San Diego Zoo? Well, if you have, then you know the hills throughout, which are not a big deal, until you are pushing a wheel chair that weighs 80lbs. and a child in it that adds another 40lbs and then another child hitching a ride on it that adds another 50lbs and a couple bags filled with diapers and food, etc. probably adding an additional 10lbs, up the massive hills, then it becomes HELL! LOL! Seriously, it was extremely difficult pushing Payten throughout the Zoo, but again it was worth every minute of memories made. We loved all the animals and shows that we were able to see there. It truly added to the experience of our vacation.
After we spent 5 days in San Diego, we set off for more fun filled adventures at the Happiest Place on Earth, Disneyland! Before I go any further in our experiences at Disneyland, I need to say thank you to my Mother and Father, for if it were not for their help, we would not have gone to Disneyland and been able to make the memories that we were able to make there, so to them we say thank you. Disneyland by far was the funniest part of the vacation, but why wouldn't it be, after all it is the Happiest Place on Earth?! We were able to receive the total Disney experience by staying at the California Grand Hotel and Resort which is a Disneyland Park Hotel and by ordering the Disneyland dining package, which included character breakfasts and lunches. Which in my opinion, was worth every penny! We loved the character dining, it was Emmett's favorite part of the whole trip! Food and cartoon character's, two of his favorite things! Payten loved it too, not the food, but she loved seeing and interacting with all the Characters, it was truly priceless to see.
Not only did we stay at a super nice hotel and get an awesome dining package, but because of Payten's health and physical needs, we were able to receive special accommodations and were given what is called the "Green Light" pass, which we were told is what they give to Make A Wish kids and with that pass we were able to go to the front of the line on every ride and we were given the chance to ride it again if we desired to do so. It was a Dream come true if I say so myself! My kids were in absolute heaven! We were able to ride every single ride at Disneyland and California Adventure at least once, if not more! Examples being, Zach road Star Tours 8 times and we rode Pirates 3 times and Winnie the Pooh 6 and the list goes on and on! Some of the favorites were, Star Tours, Space Mountain, Matterhorn (sp), Splash Mountain, Indiana Jones, Tea Cups, Pirates of the Caribbean, Soaring Over California, Cars Land, Grizzly Mountain and much more! Payten's favorites consisted of, Finding Nemo Submarine ride, Winnie the Pooh, Cars land racers, Monsters Inc., Ariel's under the sea adventure, Toy story Mania, It's a Small World, and so much more! It truly was a blast to watch my kids faces light up as they ran around with no care in the world, but what ride they would do next! It truly was a blessed 5 days of carefree wonder and if I could we would do it Monthly! But I'll take every seven years if that is all we can get! This trip helped put back a sense of joy and laughter that we had forgotten and rejuvenated our souls and I could not help but write it down so that if I ever do start to forget, I can come back and read about it.
This indeed will truly be a summer I will never forget! Time is a wheel, that is always in constant motion, moving along the way, and I do not want to be a person who looks back over theirs years with regret, wondering where their time was spent. Rather I want to fill my years with memories of things accomplished and life moments that were worth living, so that when the time comes and it will come all too soon, for Payten to leave my loving arms, that I will know without a shadow of a doubt, that I did the best I could to fulfill a "buck list"of life's wonder-ments and helped my daughter dance! I hope that we all Dance throughout our life and have summers such as this to remember!
Friday, August 23, 2013
Just some thoughts, feelings and emotions, I have been having lately that I wanted to share.
For the past few weeks now, I have been having an internal struggle with myself on so many levels. I have been dealing with so much stress, that it has been hard to see the good in life and that is where the internal struggle has been. I have so many emotions going through my body, it is hard to not allow the negative ones to take over. My thoughts have been all over the place. Many of them keep going back to when Payten was a baby and the emotions I felt back then. Those dark thoughts and fears keep creeping back in, but I need to remain strong and pray those demons away, for we have come so far.
I don't want to live in the past and I don't want to worry about the future, I want to be in the now, cherishing the moments of today. Though it is hard to not worry about tomorrow, the fear inside is so strong at times, that it is truly hard to not succumb to it. I remember sitting in the hospital, surrounded by strangers, crying my eyes out, while pouring my soul to my Heavenly Father, pleading to him to not take my daughter from me, because I was not ready or strong enough, not because I am fearful of death, for I do not fear death, I know this life is not the end all, I know there is life after death, rather my plea was a selfish one, for I could not bare to stand saying goodbye to my child. No mother in this world wants to give up her child and at that moment I was just a Mom, pleading to her Father, asking for anything, but death. I told him that I would do anything, I would take any burden he threw at me, as long as he spared my daughter. I did not understand the impact of what I was asking for, nor did I care, but now I do and I think about that plead often and if I would have changed it, if I could have seen the future? I also I think about a question I was asked a while back by a friend, her question was, Do you regret that prayer? Do you regret that plead? My answer to both these thoughts/questions is simple, it is No.
As much as it pains me to watch my daughter at times suffer and struggle, I can honestly say, I do not regret her. I do not regret her life. For I would not be who I am today or be where I am today if it were not for my sweet Payten. She has done more teaching in her short life, than I have in my 30 plus years and for that I will be forever grateful. Now with all these complications Payten is having, these emotions and thoughts, like I said previously, are all coming back to me and why wouldn't they? I am a Mother of four children, going about my daily life, doing the best I can, while watching one of my children go through undeniable, indescribable pain, still pleading with my Father in Heaven, while crying my eyes out. The difference is I am not pleading for him to spare my daughter's life, rather I am asking him to please remove this bitter cup from her, I am begging him to end the suffering she is enduring, to relieve all pain she is feeling, and to ultimately allow these trials to be over. I am asking for the Father's will to be done.
What that will is, I do not know, but I will put my full trust in him that he will do what is best for my daughter and that is all I can do. If it means letting go and having to say goodbye to my daughter, then so be it, because all I desire is for my daughter to be freed from all this. But if he grants me days and years with my daughter, then he grants me days and years. And if those days and years are filled with pain and suffering, then I hope I gain an understanding that this is what the Lord deems fit for my child for the time being and that my family will learn and grow from all these experiences. For I ultimately know that eventually this Mother's plead will be heard and that the days and years will get better, I just don't know when those days and years will be. So for now, until those days and years come, I will pray, that the Father will give me the strength to stand, the eyes to see the good, and the hope and faith to endure through the darkest of hours back into the light.
Though I am not in as dark of a place as I was back then, when Payten was so small and frail, fighting to live, I still have HUGE mountains to climb and huge mountains I will keep climbing! I will keep fighting and enduring for my Payten, until the day comes when I can no longer do so or until I no longer have to, whichever day comes first. I am bound and determined to live a life of quality with my Payten and enjoy the moments she gives me! Though my life is hard and though I cry often and feel lost and alone at times, I still love it and embrace it. It is through my faith and hope that I ultimately get by.
I share these thoughts we with you, not to boast of myself, or to receive your pity, rather I share them, so that you may have an understanding of who I am. I am a mother, but not only that, I am a mother of a special needs child, who places special needs on me and I am in need of special friends! I don't need friends who pity me or my family or my child. I need friends who will accept me and my life for what it is and be understanding, compassionate and non judging. I need friends who are willing to listen and not talk, who allow me to cry on their shoulder and who serve me without being asked. I need true friends, who know I am the mother of a very special child, who places very special needs on me and I need special friends who can lend special help and care, who will know I am forever grateful to them, though I am not always there!
Thank you, all of you, who are there for me, whether it be by kind words, acts of service, thoughts or prayers, I feel your love and it helps me daily. You are a God send and I love you all. Thank you so very much, I wish there were better words to describe my gratitude. You are the best and Payten and I love you!
I don't want to live in the past and I don't want to worry about the future, I want to be in the now, cherishing the moments of today. Though it is hard to not worry about tomorrow, the fear inside is so strong at times, that it is truly hard to not succumb to it. I remember sitting in the hospital, surrounded by strangers, crying my eyes out, while pouring my soul to my Heavenly Father, pleading to him to not take my daughter from me, because I was not ready or strong enough, not because I am fearful of death, for I do not fear death, I know this life is not the end all, I know there is life after death, rather my plea was a selfish one, for I could not bare to stand saying goodbye to my child. No mother in this world wants to give up her child and at that moment I was just a Mom, pleading to her Father, asking for anything, but death. I told him that I would do anything, I would take any burden he threw at me, as long as he spared my daughter. I did not understand the impact of what I was asking for, nor did I care, but now I do and I think about that plead often and if I would have changed it, if I could have seen the future? I also I think about a question I was asked a while back by a friend, her question was, Do you regret that prayer? Do you regret that plead? My answer to both these thoughts/questions is simple, it is No.
As much as it pains me to watch my daughter at times suffer and struggle, I can honestly say, I do not regret her. I do not regret her life. For I would not be who I am today or be where I am today if it were not for my sweet Payten. She has done more teaching in her short life, than I have in my 30 plus years and for that I will be forever grateful. Now with all these complications Payten is having, these emotions and thoughts, like I said previously, are all coming back to me and why wouldn't they? I am a Mother of four children, going about my daily life, doing the best I can, while watching one of my children go through undeniable, indescribable pain, still pleading with my Father in Heaven, while crying my eyes out. The difference is I am not pleading for him to spare my daughter's life, rather I am asking him to please remove this bitter cup from her, I am begging him to end the suffering she is enduring, to relieve all pain she is feeling, and to ultimately allow these trials to be over. I am asking for the Father's will to be done.
What that will is, I do not know, but I will put my full trust in him that he will do what is best for my daughter and that is all I can do. If it means letting go and having to say goodbye to my daughter, then so be it, because all I desire is for my daughter to be freed from all this. But if he grants me days and years with my daughter, then he grants me days and years. And if those days and years are filled with pain and suffering, then I hope I gain an understanding that this is what the Lord deems fit for my child for the time being and that my family will learn and grow from all these experiences. For I ultimately know that eventually this Mother's plead will be heard and that the days and years will get better, I just don't know when those days and years will be. So for now, until those days and years come, I will pray, that the Father will give me the strength to stand, the eyes to see the good, and the hope and faith to endure through the darkest of hours back into the light.
Though I am not in as dark of a place as I was back then, when Payten was so small and frail, fighting to live, I still have HUGE mountains to climb and huge mountains I will keep climbing! I will keep fighting and enduring for my Payten, until the day comes when I can no longer do so or until I no longer have to, whichever day comes first. I am bound and determined to live a life of quality with my Payten and enjoy the moments she gives me! Though my life is hard and though I cry often and feel lost and alone at times, I still love it and embrace it. It is through my faith and hope that I ultimately get by.
I share these thoughts we with you, not to boast of myself, or to receive your pity, rather I share them, so that you may have an understanding of who I am. I am a mother, but not only that, I am a mother of a special needs child, who places special needs on me and I am in need of special friends! I don't need friends who pity me or my family or my child. I need friends who will accept me and my life for what it is and be understanding, compassionate and non judging. I need friends who are willing to listen and not talk, who allow me to cry on their shoulder and who serve me without being asked. I need true friends, who know I am the mother of a very special child, who places very special needs on me and I need special friends who can lend special help and care, who will know I am forever grateful to them, though I am not always there!
Thank you, all of you, who are there for me, whether it be by kind words, acts of service, thoughts or prayers, I feel your love and it helps me daily. You are a God send and I love you all. Thank you so very much, I wish there were better words to describe my gratitude. You are the best and Payten and I love you!
Tuesday, August 20, 2013
Emmett Joseph turned 2 yrs. old!
This little cutie patootie, handsome devil, whatever you want to call him, the list could go on and on, just turned 2 yrs old a few weeks ago. But since my life has been so crazy with Payten's health issues, I am just now finding the time to post about Emmett turning 2! Better late than never, right?! (The picture above is a picture of Emmett when he was still in the hospital. I believe he was 2 days old in it)
Then here is he is at a year of age,
And now he just turned 2!!!!,
This boy has grown up to be one handsome little guy, but it has all happened so quickly, it makes my heart sad, for I want him to remain little forever. He is such a sweet, kind, love able kid, who is always happy and helping! I love him more than he will ever know. He may have been my oops baby, but boy was that the best oops ever! This kid is the best surprise that has ever happened to our family and I am so pleased to say he is mine!
For his Birthday, we had a small party with just my (Kim's) side of the family. Reason being, because my sister's birthday is two days before Emmett's and my brother's boys were going back for St. Lewis due to summer ending, so we did a combo birthday with Laura and Emmett and a good bye bash for Travis and Gideon. It was a lot of fun. Emmett enjoyed his own birthday cake and a few presents. Mainly he got clothes and his BIG gift was a potty! Now, you are probably thinking, Potty?! Really he got a potty for his birthday?! Yes he did! He is child number four and we already have tons of toys, etc. So we felt a potty would be a great gift and Emmett thought it was a great gift too! So score on our end! He did however get some toys, he got a few toy cars and he got a stuffed dinosaur named Roary and some little people toys, that are dressed as superheros! It may have been a small gathering and he may have only gotten a few things, but to him it was the BEST day ever and that is all that matters. Below are some pictures of Emmett enjoying himself at his party.
We bought Emmett a small, single size cake and he absolutely loved it! As you can tell from these pictures! He devoured the whole thing and then we took him outside and hosed him off, which he loved that too! Wish I would have gotten pictures of that part, oh well, maybe next time.
These next pictures are of Emmett enjoying some of his toys he got for his birthday,
Overall it was a great day of celebrating Emmett Joseph's Birthday! Here are my final words about this sweet little boy I call Emmett!,
If I could describe Emmett in a few words they would be, Handsome, Rugged, Fierce, Determined, Stalwart, Robust, a little Timid at times, yet Super Outgoing, Strong Willed, Happy, Kind, Tender Hearted, Enthusiastic, Love able kid! Emmett loves to be outside, running and playing. He will climb just about anything. This kids is fearless at times. I am surprised he has not had a trip to the ER yet. Just wait, it will come and I will not be surprised when it does! His favorite things are Sips of Mom's Soda, (I know, I know, not good, but who can say no to that face?!), Reading books with Mom, Playing with Payten on the floor, Wrestling with the family, his stuffed animal Roary, Eating food, Cars, Trucks, Balls, Swinging, Running, Jumping, the list goes on and on! If it is fun, this kid loves it! He is a spit fire of energy, who keeps me on my toes, but I would not have it any other way! I love chasing this little boy, I could do it for the rest of my life and will! He is such a joy and our family is blessed to have him apart of it. I am thankful to my Father in Heaven daily for this little man. I am so grateful that I did not take permanent measures due to fear, before I conceived this little guy, for I do not know where I would be without him in my life. He has brought a sense of laughter and joy back to our home, that somehow faded over the years from dealing with so much stress. His smile is contagious and you can not help but be happy when you are with him. His energy is beyond belief! I seriously do not understand how his little body can hold so much energy, enthusiasm, and life in it! Thank you Emmett Joseph Merrill for choosing our family to join. We love you so very much! Happy 2nd Birthday!
Saturday, August 17, 2013
Against all odds, against all logic, we still hope!
And sometimes against all odds, against all logic, we still HOPE! Even though at times I get discouraged and I think why bother with therapies, why bother with medications, they're not helping Payten. I try to remember that nothing is impossible and I search for that HOPE that burns inside me, that tells me that just maybe Payten will be the exception, just maybe she will defy all odds and she will walk, talk, eat by mouth, etc and that keeps me going. Hope! It is the Hope of not pretending troubles exist, but rather the Hope that they will not last forever, that hurts will be healed and difficulties overcome! It is hope that strengthens our faith and it is faith that will help us to see that there lies within us a source of strength and renewal that will lead us out of the darkness and into the light! Never, ever give up! There is always hope, and with that hope, nothing is impossible!
I wrote these words down last night as they came to my mind, not because I have mastered the concept of hope or that I no longer struggle with discouragement, but rather to help remind me that hope is still there and I have the strength within me to force the negativity out and allow the hope to shine through. These words saved me last night. I needed so desperately to have them impressed upon my mind. I needed this simple reminder, to never give up, because nothing is impossible with God. And I am so very thankful to my Father in Heaven for impressing upon me these words of encouragement and hope!
These past few months have been tedious and I have hit rock bottom a few times and that is hard when you have a family to care for and children who need you. Payten's health has not been the best lately. It seems as though her health is declining and it scares me as well as upsets me, for I feel like I am slowly losing my daughter and no Mother wants to think those thoughts. Though it has been hard to watch and hard to deal with, these above words are a reminder to me that, no matter what Payten is going through, she is still here, living life and therefore there is always hope for a better tomorrow, ultimately a brighter future. I can not give up, even though the odds are stacked against her and the Logic is telling us it is hopeless, it's not! I can't give in to the negativity, for Payten is still alive and that is a miracle in itself and therefore I will try (I say that liberally) to remain hopeful! Until her fight is over, I promise to not give up, rather I promise to be her anchor, to be her strength and her hope, because if I give up, then she will too and I can't allow that!
Let me back up a little bit, for those of you who do not follow me on facebook and therefore do not know fully what has been happening with Payten, I will explain. For about a month or maybe a little longer, Payten's seizure activity has worsened. It started out a few times a week and now it has increased to multiple times a day. The silver lining is that they are petite seizures and they only last a minute or less, but with that still comes the prolonged postictal state and that is where it becomes heart wrenching. That is what I struggle handling. I feel like she is asleep more than she is awake and that is hard, because I want my daughter. I want her up and playing and doing things, not sleeping! But because of her increased seizure activity, we are not getting our happy, playful Payten, rather we are getting a sleepy, in her own little world, Payten and that breaks my heart. We have increased her medications and we have been in contact with her Neurologist and the game plan is to stick out this last increased dosage of medication a little longer to see if it does or doesn't get better. He says that it sometimes gets worse before it gets better. Well isn't that the truth about most things?! You have to go through the refiners fire before you come out that beautiful diamond! So, I am learning patience and I am sticking it out, to see if it is just time that is needed and not another dosage increase in order to get seizures controlled.
This is not the only thing that has changed in Payten's health, Payten's GTP Cyclohydrolase Deficiency has worsened according to her last Lumbar Puncture. Her Neurotransmitter levels are at an all time low and this tells us that for whatever reason, her medication is not working. The Neurologist is at a loss, because he is doing everything he knows how to do and he does not understand why it is not improving, so he referred us to see a Doctor in Salt Lake City, Utah, who is Nationally ranked as the number one Doctor in dealing with children and the medication Senimet. Senimet is an adult medication, but it is the only medication that will work in Payten's case, so it is an extremely delicate situation, for you can not get the dosage wrong, because you do not want to over dose, but you can not under dose or the disease/metabolic disorder will progress and worsen. The doctor feels that she would be the best person to tell us what our next step is in helping Payten. So not only have the increasing seizures been weighing on my mind, but the fact that my daughters diagnosis is worsening and we need to go see another doctor because our doctor does not know what else to do, extremely hard to swallow. Emotionally drained would be an understatement. Words can not express the pain I am feeling regarding all of this. But, I need to remain hopeful that this doctor in Salt Lake City, will be able to help and that there will be great things in store for our sweet Payter Tater!
All of this though, is not what sent me over the edge, it is not the whole reason I hit rock bottom a few times. On top of all this, I have been dealing with my son Zachary too. The last time I was on here, I shared with all of you that Zachary has Sensory Processing Disorder and we have been further investigating this finding to fully make sure that this was what it was and not something else or something else on top of the SPD. Along with Payten's lumbar puncture, was a lumbar puncture for Zachary. We did them at the same time for scheduling purposes, as well as convenience. Zachary had the lumbar puncture so that we could rule out any question that Zachary could be suffering from the same thing as Payten, GTP Cyclohydrolase Deficiency and though the results were in our favor with that, they still were not the best results. The findings of the lumbar puncture showed that one of Zachary's neurotransmitters is low and therefore not functioning properly. When I look up the neurotransmitter that is low, the first thing that pops up is the diagnosis of GTP Cyclohydrolase Deficiency, but we know he does not have that, because in order to have that, all your neurotransmitters have to be low and malfunctioning, which his are not. So that is a plus, but it still comes with it's disadvantages and challenges and no parent wants their child to be faced with any difficulties, especially when it comes to behavior and learning and that is exactly what he will struggle with and it breaks my heart.
There are things that we can do to help Zachary through this, there is a vitamin supplement called tryptophan that we can try with him and we will continue to take Zachary to Occupational Therapy and if needs be we will start Cognitive Therapy and maybe Vision Therapy. These things should help him to cope with this metabolic disorder, no it will not fully fix it, but it can help and that is all we want. So, like I said before, I have been dealing with this knowledge as well as Payten's knowledge and it has weighed heavily on my mind to the point of not being able to stand life and all that is entails, but I am coming through. I am starting to see the Hope and the blessings and I am getting stronger and more faithful in believing, that nothing is impossible as long as I have God. I can do this, my kids can do this and it will all be okay!
Not only have the beginning words to this post helped me to come through this with a better perspective, but remembering the accomplishments that Payten and Zachary are still achieving even though Logic says otherwise and odds are stacked against them, has helped tremendously too. Seeing them defy the odds sometimes, gives me the most hope of all and I believe that is a blessing from my Father in Heaven. It is my Heavenly Father's simple way of reminding me that even though it is a hard road they have ahead of them and even though it does not look promising at times, there is still hope of a better tomorrow, hope of a brighter future! Some of these things they are achieving or for Payten working on are,
Payten
Standing and taking steps on her own. Her steps may be few and far in between, but they are steps none the less and that gives me hope that one day she may walk to me on her own! (with the help of a walker of course!)
And though it may get tedious and feel like a waste of time, we still hold onto that hope that anything is possible and therefore we move forward and get things that will help her in obtaining these goals we have set for her. Things such as,
Another piece of equipment we got, because we have hope is,
We do all these therapies and we get all these pieces of equipment, etc. to ultimately empower our daughter and to help her live the fullest possible life she can, with little to no limitations! We push her, because we believe in her! We push her so she can enjoy life, enjoy her family, and live happy!
Now for Zachary, here are some things he has been doing and some things he has accomplished by doing so,
Some other things that have gotten better are,
One of my favorite sayings is, Where there is no struggle, there is no strength. I love this saying because it reminds me that there needs to be trials, tribulations, hardship, heartache, etc. in order to become strong, in order to learn and grow and so it makes it easier to bare and it makes it easier to see my children bare these things too, because ultimately I know that in the end, they will come out being one of the greatest diamonds this world has ever seen!
So, with all this being said, I am going to start anew and I am going to try to keep these inspiring, heartfelt, hopeful words in mind and I will try to stay strong and keep chugging along, in hopes of a better tomorrow. Thank you for your love and support for me and my family and for always helping wherever you can, this too has helped me to stay strong and hopeful! Always try to remember that nothing is impossible with God and that where there is no struggle, there is no strength! We all fight a tough battle, may we all endure it with faith and hope and the knowledge that all things are possible, especially if it is God's will!
Those of you who follow this blog and try to stay up on Payten and our family, I want to sincerely apologize for not being better about blogging. I want to write more often, but I find that I just do not have to time to always do so and so I blog when I have that overwhelming feel that I just can't keep it in any longer. So please bare with me! I promise that I will do better in keeping up on here. Stay tuned because soon I will be blogging about the positive, happy events that happened over the summer and I will be doing a post of back to school tributes to Zachary and Makenna, so keeping checking in because sometime in the near future I will have those up on the blog! Thank you again for all your love and support, it truly means to the world to our family!
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