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.

MEN!!!

My DH makes me so mad! We went to see the physiatrist yesterday. He KNOWS we had to go because I took the day off work to take her. First, he didn't even ask how the appt went. Second, when I began to tell him he started his usual BS of poo-pooing everything & sarcastically questioning things. I asked his stupid questions that he always asks and he asked if I asked about the DAFOs (long story there but the crappy school PT keeps saying she needs a smaller brace or none at all, just a shoe insert, since she never sees her toe walk DUH! She takes the braces OFF to do PT, after she has been stretched with them on! She also only does 30 min which ain't squat!) I told him no, she immediately was on her toes when they were taken off & she stayed on them to walk. Also, how will a shoe insert help pull her big toes out. Also, the school PT said she can't point her foot up in them and the doc said yes she can look, that is why they are hinged now. I told him about her saying to wear the thumb splints at night so she can have them on for at least 10 hrs. His reply- "what good is that going to do?" ~~~fumes & smoke from my ears~~~~~


I then got so mad that I told him I am not going to speak with him and if he thinks he knows better than the specialist go to the appointment for once! JERK!


He half-a$$ed apologized, saying, "I am sorry, I was just asking questions" I told him you were not "Just asking questions" , you were being very sarcastic & second guessing her judgement as well as mine. I still barely spoke to him after that.

I cried myself to sleep last night. Sometimes I really hate him, especially for his complete denial of Meghan's issues.




As far as the appt goes, it was a decent one. Mostly good news as she is making slow & steady progress. We are going back to private PT to help her. Her knees are really turning in do to low tone in her hips. She wants to try to strengthen them & see if we can't prevent it, but she will probably be "knee- knocked" and have the a-frame stance from knees down. She is also scissoring when she tries to run. The school isn't doing enough, giving her PT 1x/month! Why bother? She also made a good point about her going to her zoned school for her preschool SPED rather than being at the one she is at now. The therapists are kind of apathetic there since almost ALL of the kids there have needs. At her new school, it will be way less. As for her Autism treatment, she said it will be better there too. Why? She said to think about it- if it affects 1 in 150 and there are only about 500 kids in her school, then she theoretically is only 1 of 4 with it in her school. Good point!

I WANT to be a SAHM!!!

UGH! I had such a horrible week with work last week. I sometimes enjoy my job, but not as much as I used to. I also HATE how many people have been dying lately. It seems like all the nice ones die and the trashy ones just keep on keepin' on. I guess the old adage is true- you can't kill a roach. The measly raises we get don't help either. They are barely enough to keep up with the cost of living & they raise the insurance way high each year. I work more for the insurance now. The job is so stressful and then the stress of everything at home... what's a girl to do?

I am starting to crack under all this pressure. Whenever I think about all that I do, a sketch from "In Living Color" comes to mind. The one where it was the Jamaican family and they were always talking about "I got fifteen jobs, mon" is the one I think about. I have too many jobs to count- Mom, wife, respiratory therapist, housekeeper, social/case worker, OT, PT, SL/T, ABA therapist, bill payer, errand runner... I could go on. It is way too much and I feel like I need to be at home when I am at work the majority of the time. I am often envious of other moms with SNKs who get to stay home. I so wish to be a Stay At Home Mom (SAHM)!!!

But on some days, (ssssssssshhhhhhhhhhhhhhhhhhhhhh, don't tell anyone) I am actually GLAD to go to work and get away from things.

And then the guilt sets in....

Green-eyed monster

How does one not get jealous? How does one keep the green-eyed monster away?

I have a very good friend who just had a baby. I went to visit him & his wife just a few hours after the birth. I was one of a constant stream of family & friends. The baby was great & perfect in every way. They were all sitting there, the happy little family. I even got to hold the little peanut. I was amazed by all of this. Now, this sounds so "normal". Why was I amazed, you ask?

I did not get to experience any of this. I never held my little one when she was just hours old. I never got to experience the joy of a newborn without wires & tubing hanging off of her. I could only see & hold for brief moments. I did not experience the joy of watching my husband hold her & show her off to everyone. I did not have the constant stream of visitors for I was sick myself and I think people are afraid when preemie is born. Unless you work with them or have one, you don't really know what to expect. I also had a falling out with some of my family before I got pregnant and had very little contact with them. SO, only a few came. I did not change her first diaper, feed her first or even get to clean her umbilical cord. I also had to leave the hospital without my little one.

When I left there, I was a mixed bag of emotions. Don't get me wrong, I am OVERJOYED for them- I would never wish the experiences I had on anyone. However, my heart ached. I so dreamed of that picture and it never did nor probably will never come true for us. I don't usually notice the void I have in my heart for things like this until something like this happens. I have come to accept all the things we do as normal. It is our norm, but it is not the world's norm. And when I realize that, every now & then, that ugly green monster comes around &I have to chase him off.

A Little History Lesson

My hubby & I met back in 1997. (Wow, nearly 10 years!) The way we met was unconventional at the time, but we fell in love. (Sounds so romantic) We moved here to Tennesssee, bought a house a year later, got married and waited to have children. When we finally made the decision to start a family, it was a little difficult. We had a miscarriage and then it took quite a while to get pregnant again. As expected, I had a difficult pregnancy. BUT, I proved them wrong and made it all the way to 34 weeks when things went haywire. I felt miserable, but kept pushing myself. By the time I got to the doctor, I was in trouble. We ended up being induced and after a long day, they ended up doing an emergency c-section (I guess I will save that whole story for another time for I feel that this contributed to my wee ones issues). She cried at first and then was quiet. After a quick glance, she was whisked off to the NICU and I did not see her until the next morning.



She was so tiny- a mere 4 lbs 3 oz. We know now that she had IUGR (intrauterine growth retardation), although no one said anything at the time. I asked questions and got vague answers. I was too sick to be able to pursue anything. I kept asking what was wrong with her left foot- it was pointed down and turned in. I was told she would be fine. She had so much trouble feeding. I would ask questions, get a quick answer and then the nurse would go over & whisper to another nurse and give us "the look". I KNOW that look. It is the look we give patients & family members when we know something is wrong, but the doc hasn't told the patient yet. It wasn't until 10 months later that I got my definitive answer as to what was wrong. Our sweet, beautiful little girl had CP (cerebral palsy). Luckily, it is mild. We got all of the things we needed in therapy and early intervention and she was doing well until just after two when things still weren't quite right. More whispering, more looks, more of "have you done this, have you explored that" from therapists. Another trip to another specialty doc and another abbreviation label- ASD (autism spectrum disorder). BLAH! MORE therapy, more work, another thing to make the future uncertain, another stressor.




The loss of a dream, the day to day grind of always needing therapy, everything turns into therapy of some sort, too much equipments, always worrying, always scrutinizing everything, so many abbreviations, so many evaluations, too many meetings....

My attempt at a blog...

Well, I thought I would join the masses. I have been an avid blog reader for the past couple of years, especially the celebrity gossip ones & lots of mommy blogs. I guess I am joining the ranks of the mommy blogs. This will be a little bit of everything.

Why the title?

How many times have you heard that line? "He rode the shortbus to school" "I rode the short bus to school" "Did you ride the short bus?" I know I have even used some of those lines myself. We all know what the short bus means- those kids are "special". Most people also don't think of "special" in a good way when it comes to those kids. I keep typing those kids... one of THOSE KIDS is mine. That has become my new moniker- "It's all fun & games till the short bus pulls up in front of YOUR house".

I have become versed in the language of SNK (special needs kids), learned the abbreviations, spent numerous hours in doctor appointments, lost count of the hours spent getting therapy and am learning how to effectively fight the school system; all this while continuing to work nearly full time. The good news is my child is making great strides & will probably be high functioning. The bad news is we have to work everyday to get her there & keep her here with us in our world.


As time goes, I will share more of my journey and the crazy life we live. This is just the start of many posts to come. (I hope..............................)