So, for any of you who actually like to read my blog you have been sorely disappointed, but for those of you who just like the pictures it has been fun for you... sadly if you are a picture viewer of my blog only, then, you may want to just skip forward to the picture and skip my honest candor...
OK, here's the honesty:
I am overwhelmed!
Three kids with Fragile X is no small task and like I told a good friend of mine I think that Heavenly Father may have mixed me up with another Rachael who could handle this challenge better than me.
Let me explain why I am having my little tantrum...
I used to do stuff with friends on a fairly regular basis. Now most of my friends probably feel like I ditched them. I have no time for friends, really. I am too busy trying (and miserably failing) to provide the best I can for my kids and with that "best" calms a strict routine. Which means that at all times possible I have to forget what I want (or need) to do and just keep the routine for the kids. And, for some reason, I (me the mom) have to be there for their routines because I am whom they have decided is "part of the routine." Like right now I am out of Sister's ridged routine and she is yelling my name telling me she is ready to go to her aunt Jessie's house and I am down here telling her "just hold on!" all because I just need to get all my thoughts out here before I explode...
So, anyway, if any of you think that I don't want to be your friend anymore you are so mistaken. I just don't have time for you. Sounds rude huh. Well, sorry, but I guess that my friends will just have to know me well enough that when I do finally get a chance to spend time with you, you will see that I treasure you so much and it will be as if we never skipped a beat.
Sister is my hardest one. No lie (remember this is "honest") I don't want to give too many details as I have found out that sometimes this blog can work against me and my kids (long story). But, Sister brings on challenges that I dreaded I would face and now I do. I have always had a hard time with kids who have challenges and are also aggressive, I was always so thankful that Brother was so even tempered and sweet. I just figured Sister would be that way too. I have some interesting scabs from being scratched but, more so, emotional scars from being physically assaulted by her. Don't get me wrong, she is sweet, so sweet and happy. But, when her anxiety and hyper-arousal kick in she just can't see straight... it's hard. And that's as much detail as I'll go into there.
I have a real hard time with people using the word "retard" or "retarded." Now, I am quite OK with people using those words in a sense of musical explanation or even to scientifically explain what my kids struggle with, but, I HATE!!! when people say "I am so retarded." "That was retarded." or "What a retard!" And yes, I hear this a lot. For some reason this word has become and acceptable way to say "stupid" or "dumb." Just know, right now, if you use this word casually—don't use it around me. It makes my blood boil. I won't say anything to you, I will just let it roll of my shoulders—but just know, I don't like it!
I also am really starting to feel the effects of my kids not being mainstream or up-to-date with the kids there ages. Notice I don't say that my kids aren't normal. Many people say that my kids aren't "normal"—hmmm—what is "normal" for you may not be "normal" for me, but "not normal" makes it sound like you are saying my kids are aliens. Be careful how you use that word too.
But, it is hard, I will not lie, to see kids within weeks of Baby's age who are crawling, pulling themselves up to things, etc. Baby is behind, already. Not that I should worry, but, I do. I do. Period. She is babbling lots! Awesome! She is my best talker out of my 3 kids by this age! So that is exciting, but, I'll tell you what, sometimes it is hard to focus only the little things, sometimes I just want to fall apart and cry because I can't really brag about what my kids are doing. Instead I have to try to "brag" about what they can do compared to other FXS kids because I can't even keep up with the Joneses! You know what I mean? Sometimes I just want to brag about, well, other stuff that other kids can do too.
I have a young girl who is the daughter of a friend of mine who comes anywhere from 1 to 4 times a week and stays anywhere from 3 to 10 hours just to help me while I am here at home. Kind of like a nanny. I feel guilty. I should be able to do this on my own, because this is the challenge I was given, but, I can't. I can't do it all by myself during the day while Marc is gone to work. This young girl, whom I will name Peanut, is amazing with the kids and Sister LOVES her to pieces and cries when she leaves. She has a friend. That's one thing that is hard for my kids to really have. Friends. No matter how you slice the pie, my kids are different and their friends start to realize that and it becomes a "service" to be their friend instead of an exciting priviledge. Now don't get me wrong, I know that they have some great friends, but my kids are different from others. I hate it when other people say that, but, when I say it, I guess it is OK.
This whole post I am typing through tears. This is hard. So hard. And I don't even have it as hard as others do. But I am isolated. People try to understand but, until they are in my shoes for a couple of days they don't know.
We stayed as a family with our friends at their family cabin. After one night my friend understood a little more what we deal with on a day to day, night to night, basis. She was amazed... it is hard.
I want to be what everyone else sees as "normal" but I am realizing that my "normal" is just a setting on the dryer! Tee hee! Normal for here is chaos trying to be controlled by routine and sensory input. Somedays the only way I remember what day it is when I see what letter is on the pill organizers in the morning.
Then there is the struggle of still dealing with 13 and 18 being out of our lives. I feel like we are being watched every day through an open window. People deciding how we should or should have handled that whole situation and how we handle it now. Please don't judge us. It is hard enough as it is. I miss them terribly. I know they are right here, but they are not the same and life is not the same without them. Like I have told people a few times. It is as if I had to experience the death of 5 children. When you find out that you have 3 children who have a mentally and physically challenging syndrome, your hopes and ideals for their future that you have always had planned since before they came die with the diagnosis. Then when you have children you have raised for 7 1/2 years leave and then act as if you were never part of their lives it's as if that part of your life died with their departure.
I have had some people ask about Fragile X, sorry I haven't answered your questions yet. Sometimes I just avoid answering because I get so tired of having to answer. Advocating can be tiring. It is an everyday occurrence for me,
"Fragile what?"
"What are the chances you have all 3 children with Fragile X?"
"Why did you have another child when you knew your other two had Fragile X?"
"Do all your siblings have kids with Fragile X?"
"Are you all carriers?"
"Are you the carrier?"
"How do you test for Fragile X?"
"Do you think ______ has Fragile X?"
"What is the percentage of having kids with Fragile X?"
Answers:
X
Guess I am just lucky.
I guess Heavenly Father had a different plan than we did.
No, I am the only one.
No, just me and my two sisters, because my dad is the carrier and he can only pass on his affected X gene to the girls.
Yes.
Possibly.
50/50 but, I guess for me, it 100%.
So, here is my new life.
It is hard, but as you can see from all the pictures I have been posting over the last few weeks, we have a lot of fun too. I just had to get this all off my chest. Sorry if you read it and were just disappointed at my ranting. I just think when I can put this all out there it makes me feel like you know where I am coming from and then I feel a little better.
For those of you who skipped to the end for the pictures:
5 remarks:
Nobody can raise a child with fragile X. They can only help raise a child with fragile x, as an instrument in God's hands. I am grateful to have such amazing people to call family. God chose you and Marc because he knows you would listen to him and stay close to him. No one will ever know the trials of raising your kids but you. No one can give you any true empathy but God.
We love you and think that you are all amazing. Life does and always will push us to our limits.
Most people wait only a short time to see their children talk, walk, or read. They talk about how they can't wait to see their kid do this or that and they don't appreciate here and now. But you do. Most parents aren't willing to go through pain because of love. But you do. That is the most Christlike thing anyone can offer.
There is one sure thing though, you will be required to endure with more faith than them: You will see your kids in heaven. They will be perfect, your joy will exceed that of any parent has ever felt. You inspire us. We are all imperfect.
I second everything Aaron said. When my sister said to me, "I just hope that my baby can cough and swallow, cough and swallow." It puts the little things in some serious perspective. I always felt guilt unloading my comparatively miniscule problems to her when she deals constantly with such life altering circumstances on a daily basis.
Her assurance to me was that we each have our own challenges and we all need support from those around us.
I won't say "you're amazing" because she and I decided that that's secret code for "I'm glad it's you and not me." :)
What I will say is you inspire me. Your life and the small percentage that you allow us to see through knowing you and reading your blog inspires me to be better. To hold tighter to my faith. To find joy in the small achievements. And to thank God that this life is only a piece of the eternities.
You're in my prayers, my friend. One step at a time.
Oh honey, I hear you talking! Two of my three children have Fragile X and I relate so much to what you've said. I hate it when people say kids with disabilities aren't "normal", although I've been known to say "Who wants normal kids anyway?" I also rarely see my friends but I don't have much in common with most of them anymore anyway....the ones who really care keep calling and coming over whether I have time for them or not.
Oh and the aggression....both my boys are aggressive and it's so hard to remind myself they can't help it. I get so tired of being beat up and bitten.
I love what you said about "normal" being a setting on the dryer though....I may have to quote you, that's great!
Thanks for the post! I feel the same way a lot of the time, but in a different way:) It is nice to know that others have a hard time with their day to day lives, and it is very brave to blog about it. And who needs friends when you have a family like yours, that's how I look at it, and I spend 90% of my time with someone in my family. I love ya tons, and have always looked up to you. Keep on keepin on!!!
That is what I love about you, that you are honest! So many people are not honest in their dealings, and it is so sad. I know how busy you are, and your friends (count me as one for sure) know you and know that you are still a friend. I just wish you would not be afraid to lean on us more. We are all there for you! You are a special chosen child of God. Heavenly Father trusted you with these special little spirits and you and Marc will be blessed for all of eternity.
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