So I'm sitting here at my computer tonight and I find that I really feel the urge to write. Just to start writing things down. My thoughts and feelings right now. I'm feeling very contemplative at the moment about my life and my family and my hopes and dreams and all that I dreamt my life would be and how my life is and the things I hope and dreamed for my kids and how those things have changed.
People often say to me, "I don't know how you do it" when talking to me about Fragile X and David and Jonathan and Nathan too and then there's Doug and his career and all the many things that are in my life. As for David, he is my first, all I ever have known of what it is like to mother a child so I have never known any different that my life with him and the challenges and joys that have come with him. I have never known any other way to do things for my children than how I do them because I started with David. I did and do what has to be done because I am their mother and that's my job. I would like to say that any mother would do the same but i know that's not true. I do know that the Lord has tested me and pushed me to the very edge at times. There are times I have wondered why He gave me THESE children because I often feel inadequate to give them what they need but I know they are mine because they are meant to be. I adore them. They bring me joys that I never knew my heart could hold! Not only that but I adore Doug for being the husband and father that he is, for giving me the gift of these wonderful, challenging, beautiful children. I can honestly say that I don't know how I do any of this some days. Some days I want to lock myself in my room and cry for hours. Some days I feel so strong that I think I can conquer the world. Some days I just want to hold my babies and never let them go. It's not so different I don't think than any other parent in this world. I love my kids. They are my babies, no matter how old they are, no matter how big they get, no matter how hard it is to really hold them anymore, they are and will always be my babies.
I struggle. I cry. I smile. I laugh. I yell. I scream. I pound my fists into my pillows in rage and/or frustration. Sometimes all in the same day. Sometimes I think I just float through the day without really noticing anything.
My anxieties are increasing. Sometimes I am nervous to leave the house. Sometimes I can't actually do it. I can't explain it but it's there. I think the new meds are helping but I'm not sure yet. I just have to keep trying and see. The kids suffer too because of my anxieties sometimes. I hate that.
I don't worry about Doug at work as much as I always thought I would. I think 2 ride-alongs helped with that a lot. To see him in that role, is so strange. He is so different when he is working. He's still DOUG, he's still funny and fair and all of those things but he's so serious too. He is so professional in his work. I can see that his instincts are strong and he is extremely good at what he does. He seems to KNOW the truth even if he isn't getting it from a person at times when I was there I honestly would have probably believed some stuff but I would have been wrong. He is a huge asset to his department and his team. I am so proud of him for what he has accomplished and what he has overcome to get where he wants to be. I hope that he will continue in that strength. He inspires me.
David is struggling right now. It breaks my heart because I don't have a clue how to help him. He is so anxious and angry and agitated so much of the time and I just can't fix it. I wish there was a magic pill that when a person takes it, it just knows exactly what is wrong with you and becomes what you need it to be to fix you. I wish there was that magic pill for David. He was doing so well, so happy, making so much progress and then suddenly he went backwards! I hate these backwards trips! I hate to see him lose the progress he has worked so hard for! He works so hard for every simple thing in life the that rest of us take for granted and to see him regress just kills me. I want to wrap my arms around him and just make it better but that has never made it better for him. I want him to be happy again and to do the things he loves and enjoy those things. I want him to feel JOY! He deserves to feel those good, sweet feelings in his heart. He deserves the rewards for all of his hard, hard work. I can see in his eyes when he comes home from school that he is exhausted from working so hard to keep it all together and when he gets home he just collapses on the couch. He is so tired. I think if I had to work as hard as he does just to remain in control and lately he just can't seem to do it all day. He's so tired but he's been waking up a few hours after he's gone to sleep and seems to have a hard time getting back to sleep. I just worry so much for him and it hurts to see him so unhappy when we've seen him so happy so recently too!
Nathan is improving at school now that he's started taking some medicine for his attention issues. He has been finishing all his centers almost every day but he has lost some of the skills he had last trimester and that is frustrating. We are having to reteach him some of his sounds and letters and numbers. He is so eager to learn but he has a hard time at school. He is really fighting for some independence right now. Not only from mom and dad but also from David. He hates that David gets into his things and gets on his bed and stuff. He really wants to be in his own room. He says he wants to be where David can't hurt him anymore. It makes me so sad because I know he loves David but it's true that David pinches and hits him. Nathan isn't innocent by any stretch of the imagination. He has been known to frequently push David's buttons and then he gets upset when David does those things. He knows what will happen but he continues to push him. I still feel bad for him though. He fights back now which is not really what I want but at the same time it has taught David that the things he does actually hurt people. He hasn't fully made the connection yet though. I hope he does eventually but I'm not sure that he will. Nathan is so sweet to his brothers though. He is always trying to get David involved in playing with him and doing things. He loves Jonathan and is always dragging him all over the house. He gets him out of his crib, his exersaucer, his high chair, wherever and just takes him where he wants him to be. On the down side, when Jonathan wants to explore, he's got David and Nathan running after him and dragging him back to the same "boring" rug and toys! LOL! Poor baby! I worry that Nathan doesn't know that we are proud of him and that we love him! We tell him and we try to spend special time with just him and we try to help him understand that he is special in his ways that are different from the other boys. Sometimes I think he gets it and other times I think he suffers from a serious case of middle child syndrome! He is such a great little artist! He loves to draw and paint and color and build things and do all of those crafty things. He gets better and better all the time too! I love to see what he builds and draws each time. He is so creative. I think he must have gotten that from Grandma. I think it skipped me and went straight to him! He has all these ideas and he's so good at implementing them! I am amazed at the things he creates sometimes. His imagination is something I have never encountered before. It's amazing.
Jonathan is our entire family's joy these days! He brings smiles to every face in this house and all over town. People seem drawn to him like a magnet when we go out. He smiles and interacts and his eyes are just amazing! People are always coming over to talk to him and smile at him and they always say his eyes are just amazing! I know that myself but it's fun to see how magnetic his personality is already. I think that he is such a joy to all of us, partly because he has given us hope. He has given me hope at least. I now can see first hand that Fragile X doesn't have to be so scary and sad and frustrating! He looks at my face and copies me and he talks to me and he looks in my eyes and he reaches out for me. He WANTS me. I never felt that when David was a baby. (Aunt Mandy was his favorite, even over me!) Jonathan is obviously attached to people. He recognizes the voices of the people who are important in his life, even the ones he doesn't see as often, like Nana. If I put the phone to his ear when she is talking, he grins from ear to ear! He plays with his toys and he's so curious! He will tilt his head sideways to try to see better how something works or what it's doing or maybe just for a different view. I don't know but it's so fun to see his personality developing and growing. I have enjoyed him so much! Interestingly, I haven't had the worry that I experienced with David and with Nathan. With David he was my first so I felt scared and worried I was doing everything wrong. With Nathan I worried he was going to be "like David" somehow and I watched for every single milestone and then only celebrated them briefly when the came on time before worrying about the next one. With Jonathan, I was expecting him to be so much less social and alert and "normal" that I think I just enjoy seeing all the things he does. He amazes me! I love to see him smile when he sees David come close to him. He loves to grab David by the ears and give him a "hug". David always says "ow! That kinna hurt." but he smiles and goes back for more. And when Nathan is around him, Jonathan loves to play with him. He loves when nathan carries him which I can't figure out! Nathan's going to throw his back out before he's 7 years old but Jonathan just grins his irresistable grin and waits for Nathan to put him down so he can get right back to what he was doing! He loves exploring the house. Today he came into the office and dissasembled my shoe rack after shaking it and making it make noise first then he left that cause it was no fun anymore and then he moved around the room playing with and looking at different things. Finally he ended up right next to my chair on the floor and he grabbed a plastic bag and started crinkling it. I looked down at him and he just gave me this smile that seemed to say, "oh hi mom! I'm just sitting here totally innocent! I am not doing anything at all!" LOL! It was so cute! He loves sounds. He loves to make things make sounds and see what kind of sound things make in different places, on different surfaces, when banged against other things or dropped on the ground. He goes from the carpet to the wood to the tile and drops things over and over again just listening to the sounds they make. He rubs things on the walls, the furniture, the floor, etc. It's amazing to see his eyes light up when he finds a sound he likes and he does it over and over again. Adorable.
I love them all so much that sometimes I think my heart will burst! I worry about the future and I worry about now. And I know that I can handle all of these things but yet, sometimes I forget that and feel as if I will crumble under the weight of it all. I am so thankful for my husband who has supported me through my many endeavors and encourages me to be better every day. He has never once blamed me for Fragile X in our lives and that is a special thing for sure. We've seen so many families split apart because of those kinds of attitudes and I'm grateful that Doug never once thought of any of this that way. We've been in this together all along and he has taken the time to learn and process it all with me. He has seen how his personal experiences have been able to help others he has come in contact with at work and elsewhere. We both have seen how we can help others who are struggling with so much information and so much emotion when they are "new" to Fragile X. David had taught me things that I could never have learned in any other way than being his mother. I am blessed to have been given David and Nathan and Jonathan to teach and raise in this beautiful world. They are the greatest gift I could have ever received.
I'm sorry if this post is a little scattered. I was just spilling out my thoughts as they came. Someday I'd like to put these thoughts and ideas and feelings in some sort of order and write a book that might help others like me to get through all of this. Someday.
