I believe the stress of Payten's seizures, etc are finally catching up to Joseph and I, which I am surprised it has taken this long for it to catch up. We are both getting sick and I know it is because we are run down from lack of sleep and stress. Stress is horrible on the body, it reeks havoc on it. It is no fun, but hey it always could be worse. I just pray we can get over our illnesses quickly, for we don't have a life that allows down time! But honestly who does have a life that allows down time?!
Today Payten had a few set backs. She had several seizures, which she had a hard time recovering from and when she did finally recover, it was pure torture on hers and my emotions, for she was in hysterics for several hours. This is one of the hardest parts of parenting Payten. These are the times Joseph and I feel the most helpless, honestly it is hard not to feel totally worthless during these moments, for we can not do anything for her. Parents are suppose to care for their children and help them through and with their struggles, but with Payten it is not that simple. Most children can express or rather communicate what they are feeling, or struggling with, but Payten can't. She can express herself through different emotions, such as crying and laughing and body language as well as, facial expressions. But what happens when you try everything you can think of or everything your mommy gut tells you to do, when your child appears to be in distress and grief and nothing seems to help? What then? If your child can't tell you and you can't read minds, what then? I can tell you, you sit there watching in disbelief and heartache, praying that either, you as the child's parent can receive some profound inspiration as to what to do for your child or that relief comes quickly for that child. How do I know this? This is what I do, for there is no other choice. There is this choice and crying, and I find myself doing both and doing them very well.
Today, Payten was hurting or upset or uncomfortable or in distress of some kind, but which of these, I do not know and why, again, I have no clue. The hardest part though, is not the unknown of what and why, but rather, the fact that nothing you do, seems to help her. I tried holding her and all she did was cry harder and hurt me. What I mean by hurt me is, she either was ripping my hair out or scratching my face, and other painful things, but when I would set her down, she would get that much more frustrated and sad. It reached the point where I finally I had to walk away. I had to leave the room, for I could not take it any longer. I could not watch my daughter suffer one more second. I left the room crying and praying that somehow something would give and she would begin to feel peace and stop crying.
These are the times I so desperately wish I could talk with her and ask her what she is feeling and needing, but I can 't. This by far is one of my sincerest prayers, that one day we will find a way to communicate with our daughter. That is the one thing that I can't seem to come to terms with and let go. For I desperately want to here her say words! For the past five years, well fives year in a few weeks, I have desperately yearned to here Payten utter these four simple words of, I love you Mom, words that we as parents take for granted. I dream of being able to sit down with my precious daughter and here her sweet voice, but I know that most likely that will never happen in this life. I know that it will be a dream that will have to wait until we are reunited as Mother and daughter in heaven and that it will be a conversation I will cherish. For now will just continue dreaming of that day, until it comes, for I know it will come and that it will be more beautiful than I could ever imagine.
Knowing this, gives me hope and strength to keep going. I know that most likely Payten will not utter words in this life, but I do hope that maybe she will eventually learn some form of communication, such as pointing to things, or hitting a button on a communication device or computer, or sign language, none of which we have had success with as of yet. And in every study done on GTP that is shown, shows that this is the one thing that never seems to come, or happen.
Speech and communication. And that truly breaks my heart. Oh how we take for granted being able to talk to one another.
How would you feel if you were in there somewhere, but you had no way of expressing yourself or communicating? Wouldn't it be scary? Don't you think it would become lonely, aggravating, and extremely frustrating? I know it would be that way for me and I know Payten has to feel this way at times. It has to be a torturous thing to go through, because I can see in her eyes that she wants to communicate more, but she can 't. And for her to be as happy as she is most days and not complain, speaks volumes for who she is and what type of character she has and how strong and amazing a person she is. It makes me love and respect her that much more, yet it breaks my heart for I want talk with her and I can't. I guess I have to remember good things come to those who wait.
This is teaching me patience for I know I will get this opportunity one day, it just won't be in the here and now, rather it will be after Payten has a new body in the eternities and then her and I can sit and talk for as long as we want. This knowledge of the plan of salvation, is what gets me through these days, the hope in knowing that this is not the end and that Payten will be healed and made prefect and I will be there by her side enjoying these glorious moments with her, all while running, laughing, playing and communicating with her. This knowledge gives me the hope that I will hear the beautiful words, that I have to waited a lifetime to hear, the words, I Love You Mom and I know you love me, and I want to thank you for all you did to take care of me. That will be my greatest reward. That will make all the heartache, tears and suffering worth it!
I do all of this for Payten because I know there is a purpose behind everything and I know there is more to this life and that is what makes the sacrifice and heartache bearable. When I am down or I have moments of depression, I am quickly reminded that I have nothing to be sad about, for I am blessed beyond comprehension and I owe all of this knowledge and gratitude to my daughter for she has taught me how to be truly thankful for everything and that graditude is the true path to happiness and Payten has taught me just that, how to be grateful.
Though Payten had a few set backs today, I am still remaining hopeful, that is medication is going to be the answer and Payten will get through all of this and be stronger for it. I can't guarantee that this will be the case, but I will not let fear and doubt cloud my hope. I will strive to see the light through all of this, for I believe that there will be an end to all this torment and heartache she is facing. For I have come to know that there is light in everything and that all things come to an end and get better. I pray that tomorrow is a lighter and brighter day filled with more happy moments than sad. May God bless you all and may you all have a goodnight!
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