Snuggles is gone......

.......and I am sad.

It's 12:41pm and they just pulled away with him.

It's raining here, literally.

Instead of just handing him over, I carried him to the car, Allen kissed him and said goodbye before I walked out. Snuggles didn't seem to know anything was happening. I buckled him into the seat. Then I covered him up with the blanket I have been rocking him to sleep with every night. He smiled at me. I wanted to cry but instead I just tucked his sippy under his arm like he likes, kissed him on the cheek and said goodbye.

Then I walked in the house, cried and then decided to blog.

Please pray for little Snuggles, my heart goes out to him and I am sad I could not have helped him more. I know that he needs more than we are able to give him right now and so I know we did the right thing. That doesn't make me feel any less guilty about letting him go though.

I am glad we did it. I wouldn't take it back. When I start to ask myself "Why the hell are we doing this?" I think of Snuggle's HUGE toothy grin and it makes it all okay. To know that we helped a child that was in a very scary situation and needed to be comforted is one of the most rewarding things I have ever done.

What scares me the most is that if it is this hard to let Snuggles go after less than five days, I do not know what I am going to do if I am forced to let little J go.....ever.

God Help Me.

So this is going to probably hurt.

Snuggles has attached to me.

I feel great about it and GUILTY at the same time.

Yesterday we went swimming at Granny's. Snuggles LOVED it but would not let ANYONE else hold him or push him in his boat but me. He would cry when they tried and then yell "Mama" while reaching for me. He was very friendly and would smile and laugh at everyone else but would only let me hold him.

I don't know why but I am shocked how quickly he attached to one person.

Last night I laid on the couch with him wrapped in a blanket and that's how he fell asleep. He didn't fight that at all. He didn't even stir when Allen picked him up and carried him to the crib.


J LOVES HIM.

They play together and every time Snuggles does ANYTHING J laughs hysterically.

Last night while we were giving him a bath, he was so happy and having so much fun.

I just started to cry.

I feel so bad for him.

I feel bad that we agreed to take him short term.

I feel like had I said no they possibly would have found a place he could have stayed long term.

Allen says "how do you know they wouldn't have had to put him in a group home (which I know they have done with babies younger than him) or a 24 hour day care the whole weekend"?

I don't know.

I do know that this child was taken out of his home, put in mine and is now being moved again.

Of course I have analyzed every part of the situation as far as keeping him long term is concerned and it's just too much. If Allen was home every day it would be doable. With it being only me four days a week, Makily having school every day, therapy twice a week, a billion appts for her, social workers, GAL's, court dates and all for J.....it's too hard.

I also am being realistic and I know that keeping Snuggles long term means throwing my heart out in the street AGAIN and praying it does not get smashed. I have a constant sense of dread when it comes to J's case and so adding ANOTHER case that is likely going to be LONG and drawn out is not something I can even imagine doing right now.

I also know that with another one in the house it will be INCREDIBLY hard to give them all the attention they NEED and deserve. Maybe if it was a year or so from now. J and Snuggles are only 10 months apart. I am sad for him and I will miss him though. Today he has had a few moments where I KNOW he is missing his mommy. He woke up from his nap and would not leave my lap for almost an hour. He got up and started crying, then ran back to me.

Allen is not leaving until Wednesday this week. The hurricane has backed everything up. He will take Makily to school. I plan on taking Snuggles for his "72 hour appt". They are supposed to have a physical within 72 hours of coming into care but since this was a weekend and then the holiday it has not been done.

I will be calling the agency in the morning to find out how they want to do this.

Please pray that Snuggles will transition well. Pray that my notes will help the next family that gets him. Pray that he is placed in a home that will love and take care of him like he deserves.

Sweet Snuggles.

Snuggles is a great kid.

Last night he went down at 8:30, about an hour later I heard him crying. I went in there, his eyes were closed but he was whining and saying "mama, mama" over and over.

Totally broke my heart.

I picked him up out of the crib and rocked him. He stopped doing it and quickly went back to sleep.

I have been waiting for tantrums, bad behaviors, etc but I have yet to see ANY of that. He is very sweet and he listens when I say "No". He brings Makily toys and LOVES to make Little J laugh. He likes to pull wipes out of the container and wipe off the coffee table. I went in to do the laundry earlier and he followed me and starting handing me clothes to put in the washer.

He is well nourished, his hair is cut, he's happy and says "Mama" very often. I am wondering how much "neglect" he could have suffered. He just "seems" well taken care of. I am sure there may be much more to his story than I know but from my stand point (and I only know and see half the story) it looks like someone has loved and taken care of him.

He is a VERY GOOD eater and realllly likes to eat grapes. I had to cut him off for fear he would have massive diarrhea. I am trying to do a daily log of what he is eating, likes, dislikes and what his behaviors are like so the person that gets him on Tuesday will have something to go off of. All the info we had was his name, birthday and reason for removal (which is summarized into one sentence). He did not come with much. A few onesies (in the wrong size), a sippy cup and a couple of diapers that were too small. My parents went and got him some clothes and things last night. It was a huge help because Allen did not get home til 10:30 and I had NOTHING that he could wear and minimal stuff that I could feed him (I am sure he would not appreciate Jenny Craig food or J's purees).

He had a rough time going to sleep tonight. Didn't want me to put him down. When I finally did he grabbed my hand and so I stood there hovering over the crib with my hand on his heart. I tried sneaking away once he fell asleep but he would immediately wake up and cry. So I laid on the floor next to the crib with my arm inside it so he could hold my hand. :-) I felt sort of like the Statue of Liberty. Allen came in and sang his version of "Lullaby and Goodnight" to Snuggles. Allen's version is a little odd I might add and it actually includes the word "pickle". I had to stifle laughing at him because I didn't want to disturb Snuggles. Allen's warped song worked because he fell asleep....for about 20 minutes. Then he woke again and ended up falling asleep in my arms on the couch.

So all is well in our home tonight. The babies are tucked in safe and sound in their beds.

I am going to bed.

*Huge Yawn*

It's Official, I've gone TOTALLY MAD!

Today I got a call from the agency saying they have a 19 month old boy they need a place for.

I almost immediately said no but instead I said "tell me about him".

She gave me his history and then I asked her if this would be a long term or short term placement.

She said possibly long.

She went on to tell me that they have placed all of his siblings but have no where for him.

I told her I would have to talk to my husband but that we could only keep him through the weekend as we don't really have the room in the car or the house. She said that would help a lot as this is a holiday weekend and she was having a hard time finding anyone else to take him. I said I would call her back.

I called Allen, he was on his way home. I told him and he IMMEDIATELY said yes.

So we have another little boy right now.

He was scared when he first got here and cried which TOTALLY broke my heart for him. He must be so scared and confused. I sat on the floor and played with him and within minutes he was giggling and laughing.

He is already following me all over the house. :-)

My only fear is that they will NOT place him elsewhere on Tuesday and then we will be in trouble. The van is not big enough for three carseats and Makily's wheelchair. I can make it work short term but there is no way I can do this for a long time.

He ate a good dinner and I gave him a bath. He has been VERY sweet and he looks like a really healthy little guy. I rocked him for a little bit and he went to sleep.

We'll call him Snuggles.

Can we get off this roller coaster ride?

My head is spinning and my heart is anxious tonight.

The last three weeks have been near bliss. Things have been TOTALLY in our favor as far as J is concerned and I was actually getting comfortable.

I should have known better than to get too comfortable.

I can't share too many details and I am not sure how many I will leave up once I put them up so read fast.

Bio-Dad is now saying he is going to work his case plan to get little J back. I knew that likely he would go back and forth with his decision to relinquish to us. It just hurts like Hell now that it has happened. One moment I am TERRIBLY angry at him for this then the next I find myself just thinking of what the pain of loosing J will be like and so I understand why he is doing this.

I also was advised that the family member that I was told was disqualified has NOT been. Reason being is that someone (who shall remain nameless) has not done their job. I am angry, but what's worse is there is not much I can do about it. Someone is going to try and resolve the problem but at this point I am not sure how this is going to pan out.

I sat holding Little J for quite a while earlier sobbing. He smiles at me and I just melt. The smallest things he does just make me fall more in love with him. Since I started Jenny Craig I have been eating at least one cup of yogurt a day (ya know the good ones like "Key Lime Pie" and Strawberry Shortcake"). Little J has discovered that he LOVES it and immediately crawls over to wherever I am when he sees me with it. I get IMMENSE joy out of sharing my yogurt with him. It's the little things......it really is.

I have cried on and off today and I am out of tears. Allen initially was upset, then angry and now he is my rock AGAIN. He is striving to be as positive as he can which motivates me to be the same way.

I know God has a plan for us and deep in my heart I do believe that his plan includes J staying in our family forever. It's times like this that my faith is shaken and I find myself sobbing saying "God I am so scared, please help me". I have to believe that God hasnt brought us this far to fail us now.

Please pray for us.

“I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)”

Crazy Days and Nights.

We are all adjusting to Makily being back in school. Doodles (aka Makily) is EXHAUSTED when she comes home. Monday she slept from about 6pm til 6am Tues. morning. I am sure it did not help that she had PT AFTER school that day too. She should have had speech yesterday after school but I cancelled it to give her a little bit of a break.

I am trying to juggle continuing her extra private therapies outside of school. Trying to make sure I have a way to pay for it. She is getting new AFO'S and they are supposed to come to the school to cast her for them in the next several days.

J has an appt w/Early Steps at 3pm. They are just doing an eval to make sure he is on target developmentally. It will be interesting I am sure. I think he is fine but we will see what the pro's have to say.

I have to go to Jenny Craig at 6:20, then my sisters want me to go to dinner with them but I am not sure how well J will do with that. He starts getting crabby about 7ish so we'll see how long he makes it.

As of last week I have lost seven pounds on JC. Wish it were more but I know they say it's better it comes off slowly. They do measurements too and I have lost EIGHT inches so maybe I am gaining muscle.

Nights have gotten rough around here. J used to CRY to be put to bed but now all the sudden he FIGHTS sleep SO HARD. I am going crazy. He just had another tooth pop through and that's when this night time sleep fighting began. I give him a dose of Motrin and teething tablets before bed but the last two nights that hasn't really helped. He is only napping 45 minutes to an hour whereas before he was napping twice a day for 2 hours so it's hard to get things done. He has started doing the "wake up as soon as you lay me down" thing and so that's surely frustrating for me. The Podee is helping but not always.

The picture was of Makily before school this morning. I was walking out and saw that rose was the ONLY bloom on our bush. (we are NOT the gardening type and I thought the poor bush was dead!) Anyway it matched her dress perfectly so I picked it, put it in her hair and sent her to school like that. She looked beautiful as always.

There are still AMAZING people in this world.

As many of you know Makily, my sister Elizabeth and I attended a conference for families with chromosome 22 disorders in July of 2006. On top of being able to attend thanks to FORE THE CHILDREN'S generosity to our family, it was the most memorable trip of my life.

Without the funding for FORE THE CHILDREN we would not have been able to attend that conference. It was in Canada and we could never have financially done it.

My point is that families like mine DESPERATELY need to attend conferences such as these. When your child has a rare disorder there is a strong sense of never fitting in ANYWHERE. I feel "abnormal" most of the time, I had grown used to being "different" and when I went to the conference it was the first time I felt like I belonged.....like my child belonged....like we were "normal" in years. There was no moment that I felt like someone was staring at Makily, she was accepted just the way she is. The love for all of these children was apparent, I connected with people I had known literally hours on levels that I can't even describe. Each child touched me in one way or the other. There were several children that I found myself intently watching with tears in my eyes. Children doing things that I was told Makily NEVER would. Children far surpassing the expectations the doctors gave us for her on the fateful day in April 2004.

This year award winning journalist Jessica Abo has organized a fundraiser that will benefit CHROMOSOME 22 CENTRAL along with assisting families in attending the next conference planned for the summer of 2009.

Jessica does not have a child with Emanuel Syndrome, she had never heard of it or met a child with it. Melissa Rabinovich is a producer and works with Jessica. Melissa's son Dylan was born with Emanuel syndrome. When Jessica learned of Dylan's diagnosis she wanted to do something to help. To read about Dylan and his family CLICK HERE!

2 1/2 year old Dylan

The fundraiser sounds like it will be A HUGE affair. Not only will it help with families to attend the conference and benefit chromosome 22 central, it will raise awareness on what Emanuel Syndrome is. I still find myself educating Makily's doctors about it. I know all the other families go through this also. It's hard enough dealing with all that goes into raising a special needs child but to feel like you are ALSO responsible for being medically educated on it brings it to a whole new level.

I want to thank Jessica Abo, Dylan's family, Stephanie St.Pierre and everyone involved in organizing this event. At times I get so frustrated with with life in general that I find myself wondering what happened to all the good people. Then someone does something so selfless like this and it reinforces my faith in the good of us all.

Check back for further details on information on the fund raiser. In the mean time:

If you would like to help please contact us teamdylannyc@yahoo.com. Thank you for your consideration and for believing that we can help children like Dylan live to see a better tomorrow.

Go ahead....call me a bad Mom :-)

**Note: if you are a fellow CAB gal, please note I am NOT referring to you ladies**

Long ago I was on a Mommy message board.

A heated debate started about something very simple......

a bottle.

Yes just a bottle. Nothing more.

Here is the nasty culprit.



It looks terribly damaging doesn't it?

The debate was simply on whether or not it was "good parenting" to use said bottle.

Several people felt that if you used a bottle like that you were "lazy" and some went as far as saying something to the effect of "if you can't hold your baby to feed them, you shouldn't be having babies." (note: this is not quoted word for word but that was the gist of it.)

HARSH.

Then the topic got onto bottle propping and all Hell broke loose.

Now I am all for bonding, holding, loving and nurturing your baby. I "slung" Makily and have "slung" J since he came home with us. Makily co-slept in our room for a long time. J would have too if it would have been allowed but in the world of fostering it is STRONGLY advised that you are NOT to co-sleep with an infant (in fact I do believe some states require you to sign a form promising not to). I think that breastfeeding is best and I feel like every mother should at least try to do it. On the other hand I will be the last person to ridicule you if you don't breastfeed or are not comfortable at least trying. Some mother's CAN'T BREAST FEED. I am one of them. I tried, Makily had serious medical problems and it just wasn't happening. I pumped for two months and wanted to do it for a year. My mental health was suffering greatly though. I was in a deep depression over Makily's diagnosis and had I not started taking medication I would have ended up in a crisis situation. The pedi (whom by the way also strongly advocates for breastfeeding) and myself BOTH agreed that Makily had enough problems and because they don't really have enough studies on how much certain medications are secreted in breast milk we decided I needed to stop pumping. I cried my eyes out over it and felt incredibly guilty. My point here is to not judge someone's parenting when you have not walked about 20 miles in their shoes.

I am getting off topic aren't I?

ANYWAY!

I think the Podee bottle is great for MANY situations. Situations that I have found myself in MANY times since J coming to live with us. Makily has therapy 2-3 times a week. She is back in school AND we have various appointments in Orlando, that's a one way hour and a half trip. It is GREAT for when you are in the car. I know it was suggested on the "other board" that if you are in the car and it's time for baby to eat, that you should pull over on the side of the road to feed your baby. I am sorry but that not only is ridiculous as half the time I am running like a crazy person to this or that appointment but it's dangerous too. People drive like maniacs and sitting on the side of I-4 or I-75 just does not sound like a good idea to me...but I digress.




When Makily is at therapy I put J in the sling and tuck the Podee bottle in with him. I can help Makily in therapy AND STILL hold/feed J at the same time.

At night J has a terrible time lately going to sleep. He will fall asleep in my arms, rocking with a bottle but AS SOON as I lay him down and the nipple comes out of his mouth.....he wakes up.

Now I rock him and use the Podee at night. When I lay him down he still has the nipple in his mouth and does not wake up. I give him 10 or 15 minutes then I go in and take it out of the crib. This has worked like a charm for us.

We have gotten so many positive comments on the Podee when we are out and about. EVERYONE wants to know where I got it and how they can get one. I have not had one person ridicule me for using it. Can you imagine the benefit of this bottle for mom's of multiples?

All this being said I don't think it would be a good thing to use this bottle and never hold your child to feed them. As a mother of a child that has never eaten by mouth and now a mother of a child that does.....I CAN'T TELL YOU what a bonding experience it is to feed your baby. There are times I am feeding J that I get a lump in my throat. He is so sweet and trusting. We use the Podee for night night feeds and for when we are in the car. During the day at the house we only use Platex Drop In bottles because we know he needs to learn to hold his bottle. If he has the Podee all day he would seriously crawl around the house dragging it with the nipple in his mouth (he tried that and we took it away but it was a hilarious site!).



So to all you busy mom's out there who don't want to pull over on the side of the road to feed baby, this is a GREAT tool. I honestly felt guilty at first when I bought it (because of all the past negative comments I had heard) but totally got over myself when I saw how much J liked it and how handy it came in sometimes.

Podee bottle?

TWO THUMBS UP!



*note: It took me FOREVER to get that picture right with the disguise!*

Just Stuff.....

So I have been researching Medicaid and all that goes into getting it for your handicapped kid.

I read up on KidCare, Healthy Kids and Medikids.....(by the way these are all different forms of Medicaid for kids why they have to have 800 different names I don't know).

Basically as one of my reader's mentioned we "*should* qualify for MediKids (which I had never heard of before). I applied online this evening.

HERE'S THE CATCH
(well there is a couple actually)

You can't have insurance on the child in order to be approved for it. We do NOT want to drop Makily from our insurance. There are about 100 reasons why but the more important ones are that we:

1. Possibly will have to pay $159/month for MediKids.
(they do have income guidelines and if you are over income you have to pay $15-20/mo, if you are REALLY over income it's $159/mo, we would never be so lucky to just have to pay the $15 a month, although I won't know this for sure until I speak with them.) We wouldn't mind paying for it, if it wasn't for our next three problems.

2. Due to the fact that we are in Marion County it is my current understanding that any specialists that Makily needs will HAVE to be at Shands. I would rather have you cut my eyeball out with a spoon than go back to that place. Seriously I have major issues with them for MANY reasons but after the NIGHT FROM HELL THERE I just can't go back.

Overdose my kid on narcotics once.....Shame on YOU.....overdose her twice SHAME ON ME!

My point here is that if we are accepted and pay the $159/mo premium, we won't get that much benefit from it because they won't pay our doctors in Orlando. I also do not believe they will pay for the hospital visits to APH, so then we would be left holding the bag for that and NOT even have our private insurance anymore to cover us (because remember we have to drop Makily's insurance to even qualify) leaving us in an even bigger mess then we are already in right now.

3. Dr. Pierre is no longer accepting Medicaid. I WILL NOT switch pedi's with Makily because NO ONE knows Makily medically like Dr. Pierre.

The Infamous Dr. Pierre
(she's so going to kill me!)



4. I have been told that they (meaning Kidcare/Medikids) give auth's for treatment to doctors and other facilities and then refuse to pay. I know a few health care providers that have stopped accepting it altogether because they just don't get paid.

So I am going to call them and speak with them in length tomorrow. It seems like everywhere we try to find help there is a road block. I am hard headed though and will continue plugging along!

*****************************************************************

Things are great with Makily. She was TERRIBLY sweet all during church today. She giggled and laughed and was a riot. She FINALLY goes back to school tomorrow. She went ONE day last week and the rest was canceled for Hurricane Fay. My sister Elizabeth was over the other day and I showed her how well Makily is doing with her PECS board. She got EVERY one of them right for Elizabeth. I am so proud of her.

Catching Flies and DIGGIN' her new comfy car seat!


****************************************************

All is quiet in the situation with Little J. I haven't really heard anything from anyone in two weeks now. I like the quiet but it makes me a smidge nervous. I could call and check up on the case but strangely enough I like to live in oblivion when it comes to this. The GAL is coming over this week so if she has heard anything I am sure she will fill me in. We have started bathing him in the big tub now. He LOVES it. I was nervous that he wouldn't be steady enough yet but he crawled around in that tub like a crazy man!




I will leave you with this. My mom had given this to me when Makily was very little. It hit home because at the time I was desperately trying to put things into perspective and prioritize my life. One of my blog friend Laurie posted it the other day and so I am following suit:

Enjoy!



A Mayonnaise Jar and Two Cups of Coffee.


When things in your life seem almost too much to handle, when 24 Hours in a day is not enough, remember the mayonnaise jar and 2 cups of coffee.

A professor stood before his philosophy class and had some items in front of him. When the class began, wordlessly, he picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was.

The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was.

The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous 'yes.

The professor then produced two cups of coffee from under the table and poured the entire contents into the jar, effectively filling the empty space between the sand.

The students laughed.

'Now,' said the professor, as the laughter subsided, I want you to recognize that this jar represents your life. The golf balls are the important things - God, family, children, health, friends, and Favorite passions--things that if everything else was lost and only they remained, your life would still be full. The pebbles are the other things that matter like your job, house, and car. The sand is everything else -- the small stuff.' If you put the sand into the jar first,' he continued, 'there is no room for the pebbles or the golf balls.

The same goes for life. If you spend all your time and energy on the small stuff, you will never have room for the things that are important to you. So... Pay attention to the things that are critical to your happiness. Play With your children. Take time to get medical checkups. Take your partner out to dinner. Play another 18. There will always be time to clean the house and fix the disposal. 'Take care of the golf balls first -- the things that Really matter. Set your priorities. The rest is just sand.'

One of the students raised her hand and inquired what the coffee represented. The professor smiled. 'I'm glad you asked'. It just goes to show you that no matter how full your life may seem, there's always room for a couple of cups of coffee with a friend.

Thanks for NOTHING Governer Crist.

*sigh*

Okay so in my desperation to get supplemental Medicaid for Makily I emailed the governor.

I know, I'm a rebel right?

My email is long so for my readers sake I will paraphrase it here:

*I explained Makily's condition
*I explained that we have applied for Medicaid, SSI and Disability for Makily and that we were denied for BOTH due to being over income twice.
*I explained that the Florida Medicaid Waiver waiting list is 3-5 years or more and that you can't even apply for your child until they are age three.

I even included the link to the video below of our life with Makily and encouraged them to watch it as Makily is a REAL little girl that needs help:




I received an email back and at first I was excited because it started out like this:

Thank you for contacting Governor Charlie Crist. The Governor appreciates your concerns for your daughter and asked me to respond on his behalf. We are sorry to hear of the difficulties you have been experiencing.

Then it said that they were going to list several places we could go and get help.

Who did they list?

Who could possibly be of help to our family when EVERYONE has denied us because we are so terribly rich (hahahhahahaa)?

Brace yourself as I am going to give you the "insider Governor information".

1. Florida Department of Children and Families to assist us in applying for MEDICAID.
(*uhm, hello I explicitly explained in my email that we have applied and been denied for over income*)

2. Florida Department of Social Services Help to assist us in applying for SSI/Disability.
(*ugh yet again, I also explained we have applied for this TWICE and were denied*)



3. Social Security Administration for whatever assistance they can provide through Disability
(okay uhm, again WE WERE DENIED FOR SSI AND ANYTHING ASSOCIATED WITH IT!)

AND FINALLY MY FAVORITE.........DRUM ROLL PLEASE.......

DA,DA,DA,DA,DA,DA,DA,
(that was my drum roll by the way)


(I am copying and pasting this DIRECTLY from the email they sent me because I don't want to get one word of it incorrect)
4. I am sorry to learn of the cancer diagnosis. I encourage you to contact the American Cancer Society at their toll-free telephone number to see what programs they have that can be of assistance to you. Their telephone number is: (800) 227-2345.

WHAT!?!?!?!?!?!?!?


At no point did I mention or talk about cancer in my email. Makily has never had cancer.

WHAT THE *@#*$%?

I scanned the rest of the email and it basically was referring us to other organizations for cancer patients and for those going through mortgage foreclosures (neither of which were mentioned in my letter about Makily).

??????????????????????????????????????????

The only thing that their email did for me (other than really pissing me off) was to do this:

(copied and pasted directly from the email)
You may wish to write to your senator or representative. If you do not know who your legislative representative is, you can access that information at www.congress.org.

So I of course did some digging to get the names of those people. I emailed all of them.

The only one that responded was Senator Evelyn Lynn.

Her office CALLED ME within an hour of receiving my email!!!!!!!!!!

They have to have a signed casework release form which I received in the mail THE NEXT DAY. I have it filled out along with a ton of other information that I *think* they may need and I am mailing it off TODAY.

I emailed Governer Crist's office back again once I had cooled down some. Here is what it said:

Thank you for your time. Unfortunately the majority of the contacts that were sent are things we have already been denied for as I explained in my original letter. I have applied for medicaid, KidCare and SSI/Dis and they all denied us for being over income. Many of the other links to not apply to our situation either.

I was confused about all the cancer links and the "apology" for the cancer diagnosis as I never stated my child has or has ever had cancer. I assume that was copied and pasted from a reply to someone else. Nice.

Also the Senate Bill 2534 does NOT apply to our family's situation as it clearly states that the individual MUST BE 19-64.....I explained in my email that my daughter is four years old.

I will continue looking elsewhere for help for my daughter.

Thank you for your time.

Patricia c.

Surprisingly they did not respond to that email!?

Scoreboard:
Governer Charlie Crist: -25
Senator Evelyn Lynn +50

Four Year Well Check

Makily is a whopping 32 lbs.

I promise you, she feels more like 40 to me. SERIOUSLY.

She is super tall at 37 1/4 inches!

Her chest sounded good, ears clear (one tube totally out, the other one is on it's way). She half heartedly stood up for Dr. Pierre and when I started saying she was being lazy she stood up real tall for a few seconds. :-)

My sister Deborah went with me to help out with Little J. He did really well but got bored after waiting a while. He really wanted to get down, crawl and terrorize the office but I didn't think that was a good idea!

We saw Neuro last week and she will be having an EEG and a CT scan. Both are just "routine". The Neuro, Allen and I and Dr. Pierre are all in agreeance that even though she has not had a seizure since 6-2006 we will be keeping her on the Topomax rather than trying to wean. I don't see the point in trying to wean her, the medication is NOT causing her any problems. If she has another seizure like the last one if it doesn't kill her, it will ME! Seriously though the neuro did say it is possible that another bad one like the last one could be "fatal". It's funny because at first I was so against the seizure med and now I am NOT wanting to take her off it.

Dr. Pierre and I also discussed the fact that Makily most times has "Petechia". They are little pinpoint "red dot" bruises on her skin. The Neuro noticed it at our appointment and suggested it was possibly due to the fact that Makily is on 1/2 a baby aspirin a day. Dr. Pierre does not think this is the case, she said that the dose Makily is on is so low, it's hard for her to believe that is what is causing it. I have a call in to the cardiologist to see what she thinks but for now we will just wait and watch. Makily is INCREDIBLY fair (she could have been "Powder's" stunt double), and has REALLY sensitive skin. When she bruises she takes FOREVER to heal and that's really been all her life, even before the aspirin. We'll see what cardiology says though.

Dr. Pierre wanted to go back up to her original button size.

After our fiasco last month (click here to read about that) we finally had gotten the correct size button in. We actually had it two weeks ago but Dr. Pierre was out of town. I am totally fine with changing the button if it's the same size or even if it's smaller but I am NOT too comfortable with putting a button in that is a size bigger. If it does not go right in I start to panic and I KNOW it's painful for Makily. If I HAD to do it, I think I could but I just wasn't comfortable..

Dr. Pierre did it today and Makily slept though it. She is so brave.

Since she had the "non-traumatic" button change we opted to wait on her four year shots until the school complains. Hey it's four shots and she technically does not need them until right before she turns five!

Tropical Storm/Hurricane Fay has done NOTHING in our area. I knew it wouldn't and so it's sort of lame that school was closed for TWO full days because of it. It's rained and been a little windy but for the most part it's not been any different than any other Florida storm for us. It hit harder down south (which it always seems to do).

That's all for now. I have a couple of pics from the well check but honestly I am too tired and lazy to upload anything! Maybe tomorrow.

First Day of School...First Day of School...and other stuff.

So Makily went back to school today.




First day of her second year of Pre-K.



I am so proud of her and still have a hard time believing she is FOUR!

Where has the time gone?

Things went pretty smoothly for the first day I think. We picked her up at 1:00 for therapy and she seemed happy. However she was NOT very happy during therapy today though. She cooperated but screamed the whole time, she has NOT done that in a while. I assume the combination of starting school again and therapy right after was a bit much. I am pushing her hard now though, she is growing and doing well medically and SHE NEEDS that push. I'll be honest though, there was a HUGE piece of me that wanted to just pick her up since she wouldn't stop crying. I hate therapy too, it's a necessary evil though. I am looking into Hippotherapy here. They gave me the brochure today so I am going to call and see when/if we can get Makily in. Someone told me the child had to be three and then another person said five. I'll find out soon enough though.

We FINALLY installed her new car seat. CLICK ME FOR DESCRIPTION OF CARSEAT

When we picked her up from school and put her in it, SHE SMILED so big. I was glad she liked it. It looks super comfy. I was surprised to see how tiny she looked in it. She has TONS of room to grow in this thing!


*note, I know it looks crooked in the picture but I promise it's not crooked in the car!*

We got a call from the school board that there is no school tomorrow OR Wednesday. Tropical Storm "Faye" has been upgraded to a Hurricane and so we are "hunkering down". It's funny because they were all worried about it on the radio and I guess I have lived here too long to get up in arms about it. We haven't had anything REALLY terrible hit here (meaning our local area) since 2004. We're so inland.

Watch just because I said that, we'll be without power for a week.

*sigh*

I feel bad for my nephew Micah. Tomorrow was going to be his first day in Kindy and it was cancelled.

WHAT LUCK?

Makily has a four year well check tomorrow so I will update on that when we get home tomorrow assuming we still have power (great, see now I am started to get paranoid).

Enjoy the pics from today!

Baby Brother is F-U-N-N-Y!


I'm a big girl!


TIME TO PLAY!


School shopping, once again the kid shopped til she dropped
(BTW does she look like EIGHT years old here or what!?)


My Sweeties


Oh and just for fun, I had to include this next one. I was "wogging" through my neighborhood and had to take a pic of this.

It cracked me UP!

As you can see the house has a "for sale" sign in the yard. I guess one of the selling points is that if you buy the house you get a free toilet for the yard.

It even had the little round air freshener still attached to the back!

I guess sometimes when ya gotta go...ya gotta go!

I consider myself an understanding person.......

....really I do.

I pride myself in trying to look at all angles of a situation before making a judgement. Makily taught me that. Typically I don't say "I would never" anymore. I learned VERY quickly after Makily was born that you truly DO NOT know how you are going to react until you are thrown into a situation blindly and without warning. Fostering J has also taught me a lot about life and people. I may not agree with the actions of J's parents that landed them in the situation they are in, I try not to judge them. I don't know what kind of upbringing or life they themselves have had.

ALL THAT BEING SAID..........

This is one thing I DO NOT understand no matter how hard I try to wrap my mind around it.

For those that do not know the story....here's the gist of it.

Baby girl "Danieal" was born premature. Her parents separated soon after her birth. She was diagnosed with CP when she was very young. Originally her mother had custody of her and was the primary caretaker. I know there were several other children in the home, mom has a total of NINE kids. When the little girl was about 3 or 4 the grandmother (mom to the MOM) called the father and told him that she feared for Danieal as she was not being cared for correctly and basically begged him to take her away from her daughter.

He did.

The father had a girlfriend who was a wonderful caregiver for her. The child flourished in the home. The girlfriend made sure she was well dressed, fed, happy and that she went to school. A few years later the Dad and girlfriend split. Things went downhill fast.

When Danieal was 11 the father asked the mother to please move in to help him care for her. She moved in along with her other nine children.....soon after Danieal's father moved out. Abandoning her with a mother he knew would not and had not cared for her properly in the past.

14 year old Danieal died in her mother's home on August 4, 2006. She was basically starved to death. When the paramedics arrived they found her laying on a putrid mattress in her own urine and feces. She had bed sores ALL over her back and her behind. The sores went clear down to the bone. At autopsy she weighed 42 lbs. Her arms and legs were skin and bones. In the report it states that one of the other children in the home told their mother that she needed to call 911 because something was really wrong with Danieal and she told them "she's fine, leave her alone". I also read that the only thing she could say in her last days was "water".

Yesterday I read the "Grand Jury Report" on her case. As I read I felt myself getting angrier and angrier when I realize how many people really failed this child. DHS had been involved for years. Several social workers were assigned to check up on her and make sure she was taken to the doctor, well fed and enrolled in school. From what I have read NONE of these basic needs were met since Danieal was 11 years old. So she laid in that bed slowly dying for THREE YEARS. It also states in the report that her mother was embarrassed to be seen in public with her and also did not want to touch her daughter, so anything that required touching the child did not get done. That explains why she was not bathed, changed or fed. Breaks my heart.

There is evidence that ALL of the social workers involved in this case falsified reports after her death. They filled out "visitation and progress reports" and pre dated them to make it look like they had been keeping on eye on her when in fact they had done NOTHING. Many if not ALL of the social workers involved in neglecting this child ARE STILL EMPLOYED BY DHS.

That's right YOU AS A TAX PAYER ARE PAYING THESE PEOPLE TO LET DISABLED CHILDREN ROT IN THEIR OWN BEDS.

I am disgusted and appalled.

There are several photos of Danieal in the grand jury's report. Most of them while she was happy in the care of her father's now ex-girlfriend. Then there is a photo of Danieal at autopsy. I almost did not look at it as I knew it would likely upset me. I did anyway and instead of upsetting me I got INCREDIBLY ANGRY! How ANYONE could EVER suggest that they had "just seen the child a week before and she was fine" is a COMPLETE AND TOTAL LIAR. Her back looks like raw meat. The bed sores are HORRENDOUS. I take that back, you can't even really make out one bed sore from the other BECAUSE HER ENTIRE BACK and her BEHIND IS ONE HUGE BED SORE. I can't imagine the pain she must have suffered. Urinating must have stung like fire and I can't even imagine what it must have been like for her to have a bowel movement.

Here is a link to the grand jury report:

GRAND JURY REPORT, WARNING AUTOPSY PHOTO IN REPORT!

What's even more sickening is now the child's mother is suing DHS for HER NEGLECT OF HER OWN CHILD! (click here to read article) That takes a lot of guts if you ask me. It even states that her parents have been deprived of the "love and companionship" of their daughter.

Daniel was denied of THE LOVE AND COMPANIONSHIP OF HER MOTHER AND FATHER ALL OF HER LIFE!!! She was denied of the most basic needs to survive so excuse me if I don't feel ANY sympathy for her murdering parents.

I understand the responsibilities and the pressure it is to care for a child that is disabled. I understand being tired, wanting to give up, wondering if things will ever get better. I realize that these parents did not sign up to have a disabled child and that this was thrown at them.

Been there, done that.

All that being said I DO NOT understand why they did not :

1. Give her up for adoption so someone else could take on the responsibility. I realize that there is tremendous guilt that goes along with giving your child up BUT on the other hand I can't imagine that the guilt of letting your child lay in bed with maggot filled bed sores is easier to deal with. This of course makes me wonder how guilty the mother truly felt, and if she was just keeping Danieal in her home for the SSI check (which by the way it's in the report that AS SOON as Danieal was living with her she made sure to get the check transferred into her name). I hate to say it but to me it looks like this was fueled by money.

2. WHY ON EARTH DIDN'T DHS TAKE HER AWAY FROM HER PARENTS!? They had several calls of neglect from neighbors who TOLD THEM the conditions Danieal was living in. While I realize this would have been more costly and more of a hassle for DHS (it would have been difficult probably to find a foster home with the right training to care for her) Danieal likely would have had a good life and be alive today.

Picture of Danieal's Mother:

Andrea Kelly


Picture of Daniele's Father:

Daniel Kelly:



Rest in Peace Danieal. I am sure you are in Heaven now with a huge crown on your head adorned with beautiful jewels. You deserve every single one of them. NO more pain or suffering. You can run free and fly high. No one can hurt you anymore.

Picture of a now Angel (taken while in care of her father's ex girlfriend):

Danieal Kelly

Strange/Awkward Comments Of The Day.

I think I might start doing this once a week. I usually get awkward or weird comments at least once a week, usually more. Just depends on how much we are out and about I guess. Yesterday I got quite a few. Here are my top three though.

Scenario 1:

(While walking past a crazy lady and her teen age kids sitting on a bench. Makily and baby J were both in the double stroller)

Crazy Lady: Aww look it's twins!

Her Kids: I don't think they are twins mom

**I am acting like I am oblivious**

Crazy Lady: Oh yes they are look at them.....if they aren't twins they might as well have been!
I smiled awkwardly and just kept walking by.

I will admit EVERYONE that does not know that J is not mine biologically just assumes that he is mine. I get the "aww he has your eyes/smile...." A LOT. That being said I do NOT think that Makily and J look like twins at all. Makily is 33 lbs and FOUR YEARS OLD. J is a whopping 18 lbs and not quite eight months!


Scenario 2:

(While shopping in my "regular" consignment shop. Again both kids are in the double stroller)

Nice Lady: Oh your kids are beautiful! How old are they?

Me: She is four and he is almost eight months.

Nice Lady: Oh yes that is a great gap between the two kids, ya know one is out of diapers and can do a lot for themselves that way you don't have two at once you are trying to do everything for, your smart.

Me: Uhm, (awkwardly smiling) yeah, I think it's a good gap too.


I get this type of thing ALL the time. People assuming Makily is "normal" and then making comments like that. Part of me feels like I am lying when I don't correct them and say "ugh no my four year old is still in diapers and the baby can do some things she can't". I usually always just smile and nod though.

Scenario 3:

While shopping with Allen in the store for Makily.

Me: Allen, do you think Makily would wear this robe swim cover up thingie or do you think it would just annoy her? (remember Makily has all kinds of sensory problems)

Allen: Hmmmmm....I don't know, let me look at it.

Mom shopping next to me: How old is she?

Me: Uhm she's four.

Mom shopping next to me: Oh honey she will love it, my four year old thinks she is grown up and asks for hers when she gets out of the pool. You should get it. She'll love it.

Me: Oh thank you so much, I think I'll buy it.

So it's just yet another time I feel almost like I am lying because I don't say "well my kid doesn't think like a typical four year old she has xyz issues". I don't really think people want to hear that in the middle of the store though so I am just friendly back but it makes me feel awkward. Maybe over time I will get over that.

My baby is special and SMART.

Makily goes back to pre-k next week.

I had been told two weeks ago that they were changing the pre-k schedule.

Last year Makily went Mon-Fri 7:45-2:05. She got PT twice a week, OT twice a week and Speech twice a week.

This year I was told that they were splitting the day. The new kids coming into pre-k would be there in the morning from 7:45-11:00 and the returning kids would be there 11:00-2:05.

There have been budget cuts here in Florida and I knew things were getting cut. I am disgusted that one of the things they decided to cut was the developmental pre-k program.

The schools get MUCH more money per student if they have special needs.

So while they are getting more money for the special kids, their program is the first that is cut.

How is that fair?

I also feel for the parents that work. I am sure they all depended on their kids being in school from 7:45-2:05. It's RIDICULOUS to give these parents two weeks notice that their child will ONLY get half a day now. I am sure they are all scrambling trying to find transportation, babysitters or daycare. I can imagine this will be financially straining on parents that ALREADY have a financial strain due to their child's special needs.

Why is it that these kids and families are ALWAYS dumped on?

I was frustrated for Makily also. She has SIX sessions of therapy a week at school. They are each 30-60 minutes. If she is only at school for three hours, she will be gone in therapy more than she is in the class learning socialization and other educational things.

I spoke with her teacher on Monday. I had not received a letter explaining what Makily's schedule would be (it was all preliminary when I first heard about it). Makily's teacher told me I did not get a letter because Makily will be attending a full day. She said she told "them" the same thing I said. That Makily has too many therapies for her to only be coming for three hours a day.

Somehow "they" agreed and are letting her go the full day.

I am thrilled for her. At this point Makily is the only child at her school in the pre-k program that is being allowed to do this! :-)

She's special in SO many ways!

She has REALLY been impressing me in speech the last several weeks. I can't get over how smart she is.

We are using a picture board system with her (otherwise known as PECS Picture Exchange Communication System). They worked on it in school last year and Elon and I have been really pushing it in therapy now.

We have a board for pictures of her toys. We have a board for "all done" and "more".

Yesterday there were two pictures of two different toys. One picture was of some blocks (which Makily would NEVER pick, she hates blocks), the other was of a light up, singing toy with animals. She immediately starting patting the picture of the light up toy. We would play with it for a while and then take it away. Then Elon would show her the board with the choices "all done" (with the words and a person signing it in the picture) or "more". She consistently would pick "more". I can see her thinking and watching your mouth as you talk to her. She tries to mimic the same movements and grins the whole time. She is also vocalizing when prompted. NO words but lots of "ahhhhhhs". She seems to be "ahh'ing" in the right pattern and even the right numbers of "ahhhhs" in response to you. You can see how hard she is trying and how much it's taking for her to get the sounds out. There are a few times her sounds came out of as a whisper which really reminded me of another little girl with Emanuel Syndrome. It's neat to me to see these children with some of the same mannerisms and "quirks".

What really impressed me is that she consistently picked the correct pictures when asked. At one point we moved the picture of her light up toy to a different place on her board. She went to pick it on the board and look confused when it was not in the same place. Then she found it and patted it like CRAZY!

So I have many pictures to work with her now at home. I have pictures of her toys, family members and such and will start working with her 2-4 pictures at a time. I have to work on her accuracy as far as touching right on the picture. She starts to "patt" in the direction of what she wants until she patts over to the picture. We want her to be able to go right to the picture and even REACH up to the top of the board eventually. Right now Makily "patting" is her way to communicate everything.

She also started clapping last week.

This kid rocks.

This is what Makily's board looks like.....kind of. Right now we are only using FOUR pictures. Hopefully we can work up to using this many!

Letting the "fat" out of the bag.

So I started Jenny Craig three weeks ago.

My butt is too big and my tummy well...I won't even go there.

I half jokingly say my stomach looks like a road map since having Makily from all the stretch marks.

My friend Janie and sister Deborah have inspired me. Janie's lost I believe 50+ lbs recently. Deborah has lost almost 40 on Jenny Craig. I called Deborah and asked what day she went in every week this way we can go in together. I gave Deborah a really gross but humorous description of how fat I am getting. I can't share it here because while HILARIOUS, it's mortifying at the same time. I cross the line enough on my blog as it is right?

I have struggled with my weight since I was a teenager really. Up and down and up and down. Our family was NOT blessed with the "skinny genes" by any stretch of the imagination.

SO NOT FAIR I might add.

I am also an emotional eater. Really everyone in my family is.


Happy? "Let's have cake"!

Sad? "Let's cry over a tub of Ben and Jerry's".

Bored? "I wonder if Allen left any of those "Dibs" in the freezer"?

Angry? "Hi, I'll have a number one, no lettuce a LARGE sweet tea and LARGE fry...and NOW"

Depressed? "Back up the truck....BEEP, BEEP, BEEP"

In high school I was able to keep weight off because I was so active. I was on the dance team so I had killer legs. Of course even then I thought I was fat.....see it's totally a psychological thing too. I am never completely happy with what I look like. Last time I was at goal I still thought I was fat. *sigh*

I also have this other problem. When I diet....I usually CRASH into it. I barely eat, work out like a maniac until I am so sore I can't move. It takes about a month of that and I burn out. I know they say "don't starve yourself, eat at least xxx amount of calories a day". In my hard headed mind I have always figured "I ate five grapes, a bowl of soup and 3 bottles of water, I am so loosing weight".

FINALLY I am eating the amount I am told to eat and I am not going to starve myself.

I started working out but again I am NOT going to kill myself doing it. Deborah and I walked Sat and Sun. I only walked....did not jog...which for me is hard. I always figure in my head "If I jog like a demon I am burning more calories right"? Yesterday I did a walk/jog aka "wogging" and only jogged for two minutes at a time.

For me music is a MUST HAVE for walk/jogging. I can't stand to listen to myself breathing all heavy and my feet on the pavement. UGH.

Here is a list of music on my IPOD right now. I have to say some of it is "rageful" but it's great to listen to as a SN parent.....or really anyone with high stress in their life!

One Step Closer
Numb
Stronger (Kanye)
Gold Digger (Kanye)
Shakles (Praise You)
How Far We've Come
Desert Rose
Dragula (Rob Zombie and while this song creeps me out, I run like a wild woman during it)
Lean Like a Cholo (the title to that cracks me up)
When I Grow Up
Harder To Breathe
Maneater
CandyMan
Girlfriend

I have lost 1.5-2 lbs a week so far. Of course I want to loose more a week but I realize this is NOT realistic. I am annoyed that I don't loose as quickly as I did back when I was 22. Then again I know loosing slowly help you keep it off so I guess I can be happy with that.

My goal is to be able to do a five mile hike in November with my Dad and Allen. We are going to TN for vacation as a family again and are going to Cades Cove. There is a waterfall that I want to go see but it's a five mile round trip hike.

Hopefully I will be in shape enough to do it.

So I think I have a new addiction.

When Makily was born I stopped doing her baby book altogether. To be brutally honest it was TOO painful to do. I attempting scrap booking for her a few times. Just sifting through pictures would bring me to tears. I put a lot of the NICU memorabilia in "the drawer" in her room. I don't go in "the drawer" because it depresses me so much.

It's sad her baby book is empty except for details of my pregnancy and descriptions of how happy and excited I was to be having her.

During our foster care classes they explained that it's encouraged to start or continue a "life book" for your foster children. They said that when a child has no pictures or nurturing memories from their bio parents when they are very small, that when they get older sometimes they don't believe they were actually "born" to anyone. Sometimes they feel that they were just kind of "dropped" onto the earth. If they have a life book to look at pictures and describe what their early years were like, they develop more of a sense of belonging. At least that's what "they" say.

So I started J's life book several weeks ago. It's really a scrap book. I have done six or seven pages in it so far. I would think about the fact that I had not started one for Makily and the guilt would wash over me. Then I would remind myself how painful it has been in the past for me to do it for her and I would push those feelings aside.

Well Sunday I went to the scrap book section of Walmart and found the cutest scrap book. It was THE ONLY one like it there. What's more significant is that it has a "ladybug" theme. It stood out to me like a sore thumb. I LOVE ladybugs and Makily has a ton of lady bug clothes and hair clippies. She even had a lady bug bathing suit and swim cover up last year.

I bought it and picked out several other things to start her book with.

I found myself getting choked up picking out stickers and embellishments for her.

I bought a few "It's a Girl" sticker packs. Of course there are bottles, pacifiers, and one even had a bib in it that says "Feed Me".

For Makily those are wasted stickers.

All the crap that has "your first steps", "i can crawl", "I like to eat", "My first word" was killing me.

I kept forcing myself to look over it.

Then I went over to MICHAELS to get a few more things. I had an awesome pack I had gotten for J and wanted to get another one but in "girl" theme for Makily. I was looking at some other things and found the "quote" packs. For those not in the scraping "world" they are books of vellum type paper with sweet sayings on them.

This one got me:

".......all the things I prayed and hoped for you in my dreams have come true my daughter......."

*Gouge my eyes out with a spoon.....PLEASE?!*

I felt the tears filling my eyes, I threw it down and went to the register with what I had already found.

While I was waiting to check out I kept thinking:

"God why didn't I get that cookie cutter life, why didn't all MY hopes and dreams come true for Makily, why can't I relish in Makily doing simple things like EATING and talking"?

I checked out, got in the car looked at Allen and said:

"Nothing like scrapbook shopping to make me want to throw myself in traffic"!

He looked at me like I had lost it (a typical look I get these days :-).

Once I got home, I sat down and went through what I had purchased. I started thinking and I realize NO ONE has a cookie cutter life. No matter how perfect things may look on the outside......typically inside there are things that are painful and dark. I need to be thankful for what MAKILY CAN DO and what SHE IS rather than what she is not. It's hard sometimes though when just looking at scrap booking supplies at Walmart seems to be rubbing what she can't do in my face.

I did the first page in Makily's book yesterday. I did NOT use any of her NICU pictures for it, her birth pictures are too sad so I don't know when or if I will scrap them.

I think I am going to start looking for "special needs" scrap booking stuff. I don't even know if anyone makes it but if they do I am going to find it.

I'm not the only one!

I just happened to be browsing other foster parenting blogs and I found this.

It really cracked me up.

It reminded me of my entry a while back "half truths and miscommunication".

For some reason in the foster care world there seems to be a problem with social workers lying or telling half truths to foster parents. I realize it's mostly because the social worker is usually just trying to get the child placed and wants to go home. They omit certain IMPORTANT information to get someone to take the child....before you ask YES this happened in our situation with Baby J.

We were told two different stories about the bio mom and were not given ALL the PERTINENT information about his prenatal and birth history (even though I asked and grilled them with every question I could come up with).

I can't complain though because had we known EVERYTHING, it's VERY likely we wouldn't have taken him. What a huge mistake that would have been.

So here it is:

SOCIAL WORKERS!!!

MEAN WHAT YOU SAY & SAY WHAT YOU MEAN:

Examples of how many sayings seems today:

WHAT THEY SAY:
He’s a very busy little fellow
WHAT THEY MEAN:
He’s destroyed my office apart in 20 minutes flat.

WHAT THEY SAY:
She seems to have a little cold.
WHAT THEY MEAN:
Her temp is 102 and she can’t breathe for coughing.

WHAT THEY SAY:
The family situation is slightly chaotic.
WHAT THEY MEAN:
They’ve been living in the family car which has been re-possessed.

WHAT THEY SAY:
Mom needs to get a little more organized.
WHAT THEY MEAN:
Mom doesn’t remember where she left the baby.

WHAT THEY SAY:
These children need an organized, consistent atmosphere.
WHAT THEY MEAN:
They’ve never worn clothes and they eat off the floor.

WHAT THEY SAY:
You’re the only one I would trust with this child.
WHAT THEY MEAN:
Everyone else has turned me down

WHAT THEY SAY:
This child is a picky eater.
WHAT THEY MEAN:
He eats only cheetos, twinkies and Mountain Dew.

WHAT THEY SAY:
She has difficulty with peer relationships.
WHAT THEY MEAN:
She tried to kill her foster sister in her last placement.

WHAT THEY SAY:
We may want to talk about counseling in a few weeks.
WHAT THEY MEAN:
She thinks she’s a dog and barks constantly

WHAT THEY SAY:
It’s a complicated case.
WHAT THEY MEAN:
I think the grandfather is also the father but he may be the uncle.

WHAT THEY SAY:
I know I promised to take the child on the visit but I have an emergency.
WHAT THEY MEAN:
I’m dumping it on you.

WHAT THEY SAY:
Don’t you think you are overreacting?
WHAT THEY MEAN:
I don’t know what to do either.

WHAT THEY SAY:
He needs a lot of love and understanding
WHAT THEY MEAN:
He’s locked himself in a workers car and he has a knife.

WHAT THEY SAY:
The school staff seems fairly unsupportive in his last placement.
WHAT THEY MEAN:
He held the principal hostage.

WHAT THEY SAY:
We’re going to move quickly to get the child home
WHAT THEY MEAN:
We can’t find his mother

WHAT THEY SAY:
Previous foster mom has switched jobs and can’t deal w/ him right now.
WHAT THEY MEAN:
He’s 2 months old, weighs only 9 lbs, can’t keep anything down, screams constantly because he’s starving, and nobody can figure out what food he can keep down.

WHAT THEY SAY:
She’s very unique.
WHAT THEY MEAN:
She has so many mental and/or medical issues that even the doctors get confused.

WHAT THEY SAY:
It’s only temporary…
WHAT THEY MEAN:
…Unless no one else wants a 16 yr old with RAD, ADHD, dyslexia, autism, texture sensitivity, eating disorders, anxiety, bi-polar, fascination with fire, a history of acting out violently and sexually towards other children and adults, has been expelled from twelve schools, etc. ad nauseum.

WHAT THEY SAY:
She’s a very easygoing child.
WHAT THEY MEAN:
She’s probably RAD, so she doesn’t care if you’re there or not, or where you take her, or what you feed her, etc.

WHAT THEY SAY:
His hair needs to be washed, and he has a rash around his diaper, but he’s a sweet little baby.
WHAT THEY MEAN:
He has lice, so you better wash his hair and clothes and bedding and then repeat the process for everyone else in your home after you discover this.

WHAT THEY SAY:
You work well with boys like this one.
WHAT THEY MEAN:
Lock up is full and they have no place to put him.

WHAT THEY SAY:
It’s interim, he’s going into a residential program.
WHAT THEY MEAN:
They haven’t found one that will accept him.

WHAT THEY SAY:
He needs close supervision.
WHAT THEY MEAN:
He runs away.

WHAT THEY SAY:
Keep him away from younger children.
WHAT THEY SAY:
He has sexually assaulted little boys and girls..

WHAT THEY SAY:
I’ve been meaning to call ______________(pick one or all: the therapist/the attorney/the parole officer/the bio mom/you)…
WHAT THEY MEAN:
Now that you’ve left me 15 messages and gotten a hold of me completely by accident….I’ll pretend to get right on that thing you’ve been bugging me about for three weeks now.

WHAT THEY SAY:
You’re just wonderful to do this
WHAT THEY MEAN:
Its 5 o’clock and I’m out of here!

If social workers were held accountable for their actions or decisions they might stop and think before making them.

The System Sucks.

So Allen and I went to apply again for SSI for Makily.

DENIED......again.

We are over income.

You know because we are so terribly rich and all.


NOT.

It's very frustrating, although I am not surprised. I even told the lady we don't want the monthly check.....we just want the medicaid that comes along with it. I told her we have our own private insurance but our deductibles, co-pays and all are KILLING US. She at least sympathized with us. She said there was no issue with whether or not Makily was disabled. In fact she read the letter from the doctor and kept saying "oh wow" through the whole thing. *sigh*

What's really frustrating is that they of course go off of GROSS income and not NET PAY. This is a HUGE DIFFERENCE for us as Allen's checks have several hundred dollars in deductions and we don't even SEE OR TOUCH THAT MONEY.

It amazes me that people can get SSI for certain simple disabilities (which I WON'T list here because I really am not trying to offend anyone) but yet my child who is unable to walk, talk or even eat can't even get medicaid to help with her medical bills.

Something is terribly wrong with that.

The only suggestions the lady had was that Allen and I could get legally divorced or separated. Makily would DEFINITELY qualify then.

Nice.

She suggested that maybe Allen could get a job making less money but then recanted and said "Well then you wouldn't be able to pay your bills, huh?"

So we will trudge along, while my credit goes into the dumps (all Makily's stuff is in my name so at least Allen's credit is being saved). At least I have my health right?

******************************

Tomorrow is "the big day".

THE STAFFING ABOUT LITTLE J.



I am nervous, anxious and scared. I really have no idea what to expect from the SW (social worker) with DCF. She could really go either way as far as where little J should be placed. I know chances are that she will push for the relative because that's what "the system" says they should do.

How is it in the best interest of Little J to be moved to another state, after living with us for eight + months (by the time they can move him) and bonding with our family? The child has now been in THREE homes. How would that be in his "best interest" to move to a fourth?

The other day I was rocking J to sleep. My necklace with cross had gotten tucked into my shirt. With his eyes closed he was reaching up with his little hand looking for my necklace to hold onto as he drifted to sleep. I pulled my cross out of my shirt and he found it immediately. I sat there crying as I watched him fall to sleep in my arms.



What is he going to think when and if the move him away from me and I am not there to "give him my cross"? Where will he think I went? Will he know how much I loved him and how much I wanted him to stay with me?

Allen and I are still struggling with decisions. We make one and then change our minds a few minutes later. I keep praying for God to send us the answer. I keep waiting and praying that somehow it will come and I will immediately know what I am supposed to do, but that has not happened yet.

I have a feeling big things are going to happen tomorrow and I am so afraid.

Please continue to pray for us.