The Truth in the Raw

When i decided to start my blog I decided I would post honest feelings... You know the Raw ones no one really wants to hear or read about. I don't want to sugar coat it, or ever give a reader a false truth about my life. I sometimes post allot and others not so much. Sometimes its just a picture or two, and other times it how it is. I am a busy woman, mother, and wife. I hope that my readers understand and learn something from me. My days are hard, I go on little sleep, keep a clean home, and do the job of several people.

Now onto Marriage: You loose your marriage having a child like mine. You give up part of it, so your child can sleep in a bed with you, or on you. You are so afraid of what may happen you get wrapped up in the moment of that child and forget the importance of the marriage. In the 2 1/2 years since Gabby has been born she has never spent a night away from me or John. Other than hospital stays. I don't know if I can hand her over and give another person that burden. Gabby needs care 24/7. I pride myself on doing it my self. I don't want nursing in my home, I want to do it. I know her the best. She is my sidekick. Then we have our other children. They need us to. So for now John and I have put our marriage on a back burner...has it burnt us sometimes...Yes it has. At the end of the day, I know we still love each other. Its a different love. Not that lusty mushy stuff...Its the lets review this weeks appointment's, and watching a movie then falling asleep together still sitting up(yes we often wake up with drool on us lol).... but its the fact that at the end of the day, he is still next to me and I am still next to him. Our future sometimes seems very rocky, There is no easy way when you have a child with a disability. We each have an opinion, sometimes the same sometimes different. Some days its a hug kiss and a pass of of children. Or a late night phone call from the parent staying at the hospital. I know the odds are stacked against us. I just hope we are one of the lucky couples and end up sitting old and grey next to each other in 40 years. My heart does belong to him, and his to me. There is just so much more to it than love......

Onto Children: I never knew the love a parent had for their children until I had my own. Its the I will kiss your dirty knee, to make that ouchy better. Or the I will hold you as you vomit on me. My children are my life. I could not imagine my life with out them. They bring out the best in and sometimes the not so good side of me. We are learning balance..... It is so hard not to spoil them rotten. ( I am guilty of it in so many ways) but all good comes in moderation. They now have chores. (? It works most days). They are growing up so fast. :( Dillon does  lives back in Pa (his peace in life was living with his mom, not an easy choice but one that gave him happiness) It does not mean I don't miss him dearly. Part of my heart is missing with him not here.  He will come half the summer and some visits though out the year. They just never seem long enough! Kiera is kicking but in school! She loves being here, Loves her friends. She is growing into a young lady. Attitude and all. Kirstynn is my drama queen. She is still very small, but a big small. She is so smart its crazy. She loves so much, always wants to snuggle and just be near you.  Jazmyne has come a long way. First couple of weeks of preschool was tears, now she loves school. Her speech is getting better!  I see how Gabby has affected my children in the positive and negative. Gabby gets into her moods, in order for me to get things done sometimes my kids have to help with her(Not take care of her, HELP with her) Such as holding her, or laying next to her while I swap the laundry. (If you think about it, if Gabby was normal child they would do the same, just on a different level) Sometimes they like it sometimes they don't. But I can tell you Gabby LOVES it. She loves when they sing to her, or lay next to her. She loves when they hold her, It brings out the smiles. She don't play like other two 1/2 year old children.....but that does not mean she still don't want to be loved just like them.

Onto Gabby: I have never in my life could have ever imagined what a parent goes through with a special needs child. Never, If you don't have a special needs child (Other than doctors,therapist, family and friends), then you have no opinion that is valid to me about my child. You have no clue what it involves on a daily basis. Kiera once asked me why I made Gabby sick and why I make her have all these surgeries. I was by far very angry over this statement. Someone told her that I was a sick person who needed therapy. I almost flipped a lid. People listen to me very loud and clear: Unless a surgery is medically required we don't do it. We don't do anything extra unless it involves giving her a better quality of life. Gabby cant have a surgery unless a Doctor says its medically needed. Also I only go to the doctors when the doctors ask me to come example being 3 months checks, 6 month checks and yearly.  No one has the right to judge any choice we make with her because you have not walked our journey! (If you have nothing nice to say in life say nothing at all-If you have not choose to educate your self on my child, then you have no right to say anything to anyone about my child) Gabby gives me the gift of: unconditional love: She gives me the gift of an understand that many will never know.

I will give you the truth: If you would have ask me 2 1/2 years ago if I knew what having a child like Gabby would be like my answer would not have been this: Living a life with a special needs child isolates you from almost all of population. Very few people "get it" nor will they. To ask someone to wrap their mind around my daily life is impossible. You cant. I could not have. I never knew I could give so much of my self. The demands are everyday, all day. You don't get to have the normal 16 year old girl watch your child. you cant just pick up and go. Gabby is weighing in around 30 lbs. I lift and hold her most of the time. Her wheel chair is only used for sitting time. I do therapy several times a week. Our doctor appointmentss are endless, and always will be. Having a special needs child is like having a full time job, then you also have the rest of your children and your husband to attend to. I wish I had 3 of me. Heck 4 would be even better. But I don't its just me. I have been pissed on vomited on, pooped on.... and at no point did I yell or get upset. I just just held her until she was done.My child does not understand what she is doing. All she knows is she feels safe when I am holding her. She knows that if she crys I am here, she knows if she is laughing I am laying next to her laughing as well. This is not an easy life my friends, one of trials and tribulations. I feel guilt over some things, but beam with pride over others. Look up gene pomgnt1, The image's are horrid and very scary, the research is very little, but what is there about makes you feel hopeless. But there is hope, joy and love having her. at the end of my day I sit here and think how blessed I am. Gabby has given me a new look on life. She has made me see the little things. She made me slow down. I am the lucky one in this world. I got her as my daughter. My hope for anyone sitting in my shoes is to contact me: I wont have answers just an ear to listen with, a cry to share, and a laugh with you as well. For I get it, I get the truth in the raw. This is not an easy life, but one with so much more than most.