How about some good news?

For once I am not whining... I actually have some good news.

MM appts went well this week.

She saw the immunlogist on Monday- no RA, no lupus. She just has a poor immune system, possibly related to her prematurity. We are to continue to keep her away from sickies, etc (who would have thought after 4 yrs we would still have to live like hermits in the winter). He said a simple illness could be a major one for her- which is true. He is amazed that an illness hadn't hospitalized her yet- we have come close many times, but I have just managed her at home. They will recheck her blood in a year though. Sometimes the bump in ANA is a precursor to lupus & it just might not have showed up yet.

She saw the opthamologist on Thursday. Again, good news. The bifocals seem to be working for the moment. We will continue with those & see how she does. We will go back in April & recheck her. He said there isn't a rush to surgery if the interventions are working. He said they used to rush into it & kids ended up needing another surgery to correct it. I am okay with waiting it out, so long as we don't miss our window to fix it. He said the window to fix is a lot longer than it used to be. So, good news x2!



FINALLY


We have a milestone moment....


MM's crib was convereted into a toddler bed! She asked for a big girl bed & wanted princess bedding. She still has a rail we added to it, but she did great! She slept in it last night for the first time, no problems! She did not want to get out of bed this morning! I can't believe that she is finally out of a crib! It only took 4 years, 4 months, 2 weeks & 1 day- but who's counting! LOL! My baby is growing up.. **sniff, sniff** Happy tears though!



Here are some pics of her trying out the new bed! Nana bought the bedding & made a frilly dust ruffle for it. She is also going to make us some very girly curtains.






Who wouldn't want to sleep in this bed!


Doesn't she look happy & content?

And that, my friends, is one post without whining, complaining or grousing!

Worry...

Got a lot on my mind at the moment.

(Nice pic of a lot on the mind, eh??? Gotta love google image search)

MM starts her new school tomorrow. Her teacher is coming here in about an hour to meet her. The few conversations I have had & the one my mom has had with her have been quite interesting. Interesting not in a good way. She seems to be quite ditzy. I hope this is just an impression and she does a great job for Meghan. I can only hope. XXXfingersXXX


With MM starting school, I am feeling relief (and guilt for feeling relief). It has been a very trying summer. It has been an eye opener as to her disabilities. She has made some gross motor gains this summer, minimal fine motor ones though. We struggle daily with getting her out of her routines & regimines and engaging with us. With the lack of therapy for summer, her speech has become mostly scripted. It is heartbreaking and scary for I am terrified of "losing her". Losing her to her own little world- we have to fight EVERY day to keep her in ours.


We go on the 20th to the immunologist to get the results of all the blood work she had done. Her ANA is moderately to high elevated. I wasn't really worried at the beginning, but I am concerned. They again mentioned lupus and are very concerned about JRA (juvenile rheumatoid arthritis). I am praying it is nothing for we don't need or want any more labels. We also go on the 23rd to the eye doc. This is supposedly the appointment to decide on eye surgery. I say supposedly cause they have said this before. We will see. A busy month for doc appts. I still have to make her 4 year well visit (I know, I know late!!!), but we had to wait to see the immunologist first.


Lastly, I am worried about my hubby. He seems to be having a hard time lately. He is finally moving in the grieving process of MM's disabilities. He lived so long stuck in denial. He is now in the anger/sadness part. He is also feeling alot of anxiety. It is so hard with men cause they don't talk the way we do. He told me this morning that he could barely sleep last night worrying about things- money, bills, his job, MM's problems, MM starting a new school plus a whole lotta of other family drama. Can anyone say pass the Xanax??? I am worried cause even though he has been in denial, he was more of the rock around here. He dealt with MM better at times and I could always count on him for his undying patience. I guess his patience is not undying for he also is getting tired of dealing with this. As I stated earlier, it has been a very trying summer.

I too am worried about money & bills. We had to bare the expense of private therapy this summer since the school system is so lacking. I had to quit going to the psychologist myself so we could pay for her therapy. I hope that getting back to school will help her. New school, new therapists hopefully equals not having to pay out the nose. It has really made things tight around here. I guess we are stressed cause we have never had to feel that pinch except during my illness. We are not rich by any means, but we are used to being comfortable. We have had to tap into our savings for some of this and I don't like not having a big cushion to fall back on. I have also had to take a lot of days without pay (don't get me started on that cause I have TONS of time, my job is just a bunch of weenies at times) due to appointments & such which just puts the squeeze on even farther.

I realize that being a parent is never easy, but at times I wonder when does the true enjoyment begin. It is constant worry & work all the time. I know that is true of typical parents as well, but I don't know if they worry about every small thing like I do.


Guess that is it for now. Not so eloquent & thought provoking.... just what is on my mind!

The REAL Reason for the Blahs

Here is the "other thing" on my mind that I wrote about in the previous post.

Having a special needs child is very difficult. There is lots of joy in it, however, there is also a lot of heartache. Included in that heartache is anger, resentment, sadness & blame. BLAME- one does alot of blaming. It can be something very hard to get over. I often blame myself in many ways for MM disabilities.


Maybe I should have gone to the doctor sooner...

Maybe I should I have been more adamant during labor about her decels...

Maybe I did something to deserve this.


That last one is a big one for me. Now, I realize that with lots of soul-searching & counseling that it is not the case. I don't feel that way too often any more. However, in the last few weeks there has been something that went on in my life that has caused these feelings to resurface. This is a long story, so I will try to keep it brief.


My brother has been dating a girl for about 9 months or so. Even though she lives here, I guess he initially met her on myspace. She blogs alot about her personal life, often some VERY personal things. She added me as one of her friends & I now have the ability to read her blogs. It is interesting to read things from her point of view. She sometimes posts things about my mom or me & my family. She made one post about a past conversation her & my brother had. It was one of their first conversations. I was reading it & got towards the bottom. Here is what I read, I am however removing the names. (His conversation will be in blue, hers in pink)


8:07 PM They moved here then my parents retired to florida and then my sister was in a coma from having a child and then they decided to move here to help her out
me: my family is in florida
they want me to move back down there
8:08 PM damn you and your sister are sickly
8:10 PM no actually that was the first real thing that happened to me
8:11 PM me: i'm just kidding with you
but my sister is and her daughter has cerebal palsey
me: that sucks
8:12 PM i think it serves her right in some ways cause when we were little she used to make fun of the special kids all the time and i used to tell her
dont do that it might happen to yoo
but her daughter megan is awsome
8:13 PM i love her to death she's the cutest little thing

I have loads of problems with this conversation. First, he can't even spell her name correctly. Second, I was never in coma. Third, I very rarely made fun of special kids. He is not so above me, he was acting all high & mighty. I guess he was using it to get some from this girl. NOW, to say that it serves me right. WTF??? I immediately burst into tears. It is the most horrible feeling in the world to have someone, who supposedly loves you, say that about you & your SNK. My hubby went & confronted him about it. At first, he claimed he never said it. Can't claim that lie- it was right there in black & white on her blog. He then said he was angry when he said it. WHATEVER! I don't care how mad you are, you don't attack me by saying I did something to stricken my innocent child with CP. He then emailed me an apology, but has not made any attempts to speak with me. I sure am heck not going to call him. I emailed him back & said I forgave, but obviously I can not forget.

Children are not born with disabilities to punish their parents. Children are innocent. Therefore by the grace of God he goes. What makes him think he did everything right & is deserving of having typical children? He has a whole lot of issues of his own & often depends on my mom, my sister or me to feed & cloth his children. He has no concept of how lucky he is to have two beautiful, completely whole children. I do believe though that is why I was given MM. I am not being punished. I am not sure what I did to deserve this for I am pretty lucky to have MM. She makes me thankful everyday for all the small things. We get to celebrate every little milestone that she passes for we did not know if she would. She was given to me to teach me to find joy in each & every little thing in life, to not take any thing for granted. She was given to me because I am able to provide for her and be a good advocate for her.

It was disheartening to find out what my own brother really thinks of me. His words, even if from a while ago, stung so bad. Those words have helped to send me back into a funk. I am trying to dig my way out by thinking of all the positives I stated above. He is just continuing to share the prejudice in the world that goes along with disabilities. Here he was claiming to be "Mr. Don't Make Fun of People" and yet he is just perpetuating one of the stereotypical thoughts people have. I found out how closed minded he really is. How sad it must be to be so closed minded, but I guess "it serves him right". He just has ordinary, typical kids. I have a special one <3

This ~N~ That

We took MM to a waterpark yesterday. It was her first time at an amusement park of any kind. Despite an immediate meltdown in the lazy river for two reasons (sunscreen got in her eyes & she couldn't just go any which way), she did quite well. She made it for 2 1/2 hours and then she was completely exhausted. She was ready to eat & go home. There was no changing her mind- so a hundred bucks for a few hours of entertainment. It was worth every penny though. She was not afraid of any of the baby waterslides we took her on. She really enjoyed the wave pool the best and her repeating "ut oh, here comes the wave" was priceless. She also kept saying "Look at all these kids!" whenever we tried to go from one attraction to another. She refused to ride in her stroller most of the time there and that would be why she was so tired. It becomes apparent how much her CP fatigues her when you see other children her age with boundless energy.

I have been off the last 8 days with a few more to go before I return to work. It has been nice, but I have also had a bad case of the blahs. Hubby was supposed to take off & he never turned in his time. So, I have been off trying to organize the house. Not going so well. I really need some space desperately around here. It makes me feel like such a failure to clean my booty off & look around to see clutter. I guess that is what happens when you have a child. We have all of her toys plus all of her equipment as well. MM has been a little on the trying side during this time off as well. She has gotten into a stubborn streak with her moods. She is really acting like a two year old, which is great for the advancement in development, but bad for they don't call it the terrible two's for no reason. It is often hard to assess if it is her autism or just her naughty behavior. I feel bad for I am not as patient as I should be somedays. I do enjoy being home cause I get a sample of being a SAHM and how nice it would be- a girl can dream, right?


We have our appointment with the Immunologist coming up. I am not too worried, just mildly concerned. I think we will find she has allergies like I do. I don't think I can take any more bad news. I say that, but I will just deal with it. It doesn't change who she is, just changes how we care for her. Her private PT & OT seem to be going okay. The center, however, is not the most organized. It is a small place that grew by leaps & bounds and outgrew the area it is in quickly. It bothers me that I have to keep reminding them how easily distracted she is and that she can not work in a room full of other little ones getting therapy. Otherwise, they have lots of great equipment. She is doing treadmill training. I read about it a while ago (this is a newer article http://findarticles.com/p/articles/mi_hb4384/is_200702/ai_n18901084) and was looking for a center that had it. I am pleased with her success at it.

She is asking for some "OJ", so I better run... Got one more thing on my mind, but I will post that totally separate. July is over half gone!

Sometimes Autism

Sometimes Austism can be funny. Really, it can. Sometimes the "scripting" she uses can be too funny or extremely appropriate. ("Scripting" is repeating a program she has seen or a previous conversation she has heard. We like to call it doing her "schtick" as if she is a standup comedian). For example, she has a Charlie Brown video she likes to watch. Whenever we go to Target, she uses it to get what she wants. In the video, Lucy is going to a show that Snoopy is putting on. MM just does Lucy's conversation.

First, she tells me- "Mommy need popcorn, please" (this is not a script). You MUST get popcorn everytime you go to Target. MM then gets to the counter & says "Popcorn, please". She then says louder "I said POPCORN, please". (I then must order the #1 popcorn combo cause she must have a lemonade to go with her popcorn). She then gets the popcorn handed to her & says "Thank you, kind sir"- doesn't matter if it is a male or a female.

Now, to anyone else, they would see this as a young child being polite & getting some popcorn. Only we know that it is a script. That is what is funny to me. She is doing something that appears "typical" and yet it is not. Now, if only there was a script she could memorize for every situation in life, then I would never have a reason to worry.

When Will This Ride End?

Seeing these people stuck upside down on this roller coaster recently is how I have felt this past week. It is bad enough to get stuck on a ride for 30 minutes, but to be upside down???? They were rescued in 30 minutes.

MM has had a scratch on her ankle that didn't heal. It has gotten really nasty looking and the doc just wants to continue to watch it. In addition, she has had elevated glucose levels. They had to take several tubes of blood this week to check her glucose as well as looking for something autoimmune. They can't figure out why she isn't healing well. It is very worrisome. Did I mention her ear tubes aren't working anymore? They appear to be dislodged or have fallen out altogether. Add going back to the ENT doc to the list of things to do.

We also saw the eye doc this week. She more than likely needs surgery, but we are going to try one last ditch effort for 10 weeks. We are now going to be adding bifocals to her glasses and see if it helps her crossing. I am trying to hold out on surgery as long as possible without causing her any danger. I just hate putting her under more anesthesia.

We also saw a new PT this week. I think I am going to love her. She seemed to be on top of things. She thinks we need new DAFOs (braces) that are taller since she has had quite the growth spurt recently. She was afraid to tell us where she is gross motor wise- she didn't have to tell me, I knew. Around the 24 month level- no big surprise to me. Yes, she is 50 months old- (hee hee 4 years 2 months), so she is far behind. AND the school says she only needs PT 1x/month for 30 minutes... WHATEVER!

It has been so hectic & busy... Throw working 4 12 hours shifts in the last 6 days into the mix & I am exhausted!

The constant appointments, the ups & downs of having a child with medical issues feels like a roller coaster. When you have a time where you don't seem to have much good news is just like being stuck on the ride. When it keeps getting worse, it is like being stuck & hanging upside down. Only thing is, when you are on this ride, there isn't anyone coming to rescue you. You have to wait it out, fix it yourself, or hope the ride gets going again.

Straight to the Heart

One of the blogs I frequent wrote something the other day & I can't get it out of my head.

The process of making peace with his disability, was no clear-cut step-by-step denial-anger-bargaining-sadness-acceptance a-la Elizabeth Kubler Ross, but rather intense negative emotions separated by periods of equally intense joy and peace and love and contentment.


I have gone back to read this over & over. It seems to ring true for me. Even in counseling, I can't seem to get through the whole grieving process. Why? I think the reason is I am just now, even after 4 years, starting to really go through the process. The first few years were very intense, emotionally draining, hectic & scarry. I never really had time to think about what was going on. I was running from appointment to appointment trying to get her everything she needed. We still run alot, but she goes to school all morning. I now have time to breath & think.

Breathing = Good Thinking = Bad


My heart is starting to accept that she has some life long disabilities. Will she EVER be typical? No. Can I accept that? No. I still have so many negative emotions about the whole situation we have been dealt. I know all the things about the trip to Holland & God giving special children to special moms. Only problem is, a lot of the time, I don't feel so "special". I feel angry. I feel sad. I feel robbed. I feel cheated. I often feel "why me?".

BUT

Then there are the days when I feel like my heart is going to explode with pride. I don't think I could ever love a human being more than I love her. She makes my eyes well with happy tears when she jumps across the couch. She fills my heart with joy when she actually looks at me & says "Love you, Mama". On days when she now asks "Up- Mama carry you", I feel contentment. I know so many other Moms will never get the joy in celebrating each & every little thing in life. Other Moms will not ever get to see their little ones struggle from the day they were born and keep struggling every day to do all the "typical" things. In seeing this, it gives you the strength, courage & determination to go on & keep fighting to make her be the BEST she can BE. It is in this that I am starting to find my peace.

Thank you, Nelba, for your beautiful words. In your grief, I am finding more strength than you will ever know.