Oh my gash I'm blogging.

So I'm updating!

YAY ME

First off Makily is doing great. We all had a horrible bout with the swine flu around here.

THAT SUCKED.

The baby did okay with it, Allen and I had mild symptoms but Makily struggled pretty hard. It was not pretty. Double ear infection, bronchitis, fever of 104.....and of course swine flu. She was down and out for about 2 weeks. Luckily she avoided being admitted and is doing well now.

J is growing like a weed and will be two in a little over a month. Where has the time gone. Still waiting on multiple things with the adoption. Having a hard time keeping a social worker. Not sure who his worker actually is right now. I'm hoping to light a fire this week and get things moving along QUICKLY. I really would LOVE to be done with this adoption before the end of the year.

Allen and I are doing fine. He's working his butt off as always. I'm still doing the OCALAMOM thing and staying at home with J. J may start early intervention four hours a day soon and I am not sure what I will do with myself then.

I took a Pole Fitness class on Saturday. I made an ass out of myself but it was a lot of fun and I am really sore. They also have other classes there so I will be going back and learning. I need to get myself back in shape and on top of things again.

I'll update later today with pics of HALLOWEEN. The kids were ADORABLE!

So how's Makily doing?

I've had quite a few ask me that lately so I figured I would do an update.

We went to Neuro a week ago. My sister Deborah went with us.


The doctor and I discussed Makily's last abnormal EEG. He said she was just having "mis-fires that can lead to seizures but NOT seizures".
He said Makily DID NOT have to have a 48 hour video EEG. He will do another EEG in the office in three months. He did increase her medication by another half a pill and Makily has done fine with that.

She LOVES school and is doing VERY well with that. She has art twice a week with a "regular" kindergarten class. Carrie's son Logan is in there and he knows Makily well so that makes me smile.



Makily also has P.E. twice a week. I am proud to announce she is taking SWIM CLASS for P.E. I knew that once she got into kindy they would let her do swim class and so I made sure to get the forms filled out when school started. They said she does well in there and really enjoys the water.

This morning I woke up an hour late. I decided not to even rush around, I was going to be late no matter what. I got the kids ready and took Makily to school. She smiled when we drove up and started clapping when her teacher came in the room to get her. She LOVES school and it makes it so much easier to take her there seeing how happy she is being there. She has also made a new friend. A lady named Suzanne from ocalamom saw Makily's story and showed her life video to her daughter Kate. Kate is in the fifth grade and she fell in love with Makily. She just so happens to also go to Makily's school.



Kate asked her teacher and Makily's teacher if there was a way she could come in and play with Makily a few times a week. They all agreed and so Makily's friend Kate comes in and reads to her and plays with her in her classroom. HOW SWEET IS THAT? It just gives me a lump in my throat thinking about how my Makily has touched Kate.



We took the kids to a splash park last weekend and J LOVED it.


Makily not soo kean on it. It was too....well "splashy" for her taste. I did hold her under a mushroom fountain with me for a while. and she tolerated that. It was very relaxing and I love snuggling with my girl and having those "moments" where the whole world fades away and it's just her and I.


Later Allen asked me if it bothered me that people were looking at us. I told him I hadn't noticed, I have learned to force myself to not pay attention to that type of thing. It would have ruined our moment. Some times are harder then others. I like to think they were staring because they just thought she was so darn cute.

She ate several gerber cherry puffs happily yesterday. In between puffs she would sign the word EAT over and over again. Makily usually puts her hand to her mouth often but this seemed very deliberate so it made me very happy to see her doing this.

Chance Meetings, Small Towns.

So I had a lady named Aimee on OCALAMOM contact me asking me questions about foster care.

A few days after we chatted she friended me on facebook. The next day I had a message from another nice lady named Jeannette. She said Aimee had shown her our story and that our kids had a lot in common.

I saw she had a blog and immediately read the whole thing...with tears streaming down my face.

Jeannette and her husband Steven have a BEAUTIFUL six month old baby boy named Caleb.

When Jeannette was seven months along the doctors diagnosed Caleb with Trisomy 18.
Babies with Trisomy 18 are usually miscarried or stillborn. Those that do make it usually don't survive past the age of one. Of course there are always that handful that prove the doctors wrong and outlive all the statistics.

Even still the doctors say that Caleb is terminal and he is at home on hospice with his loving family.

Strangely enough, his mom had mentioned Caleb had a therapy session. I asked her where and she said with Elon Bruner....this is Makily and Baby J's therapist. Her appt was right before ours and I got to meet Jeannette, her father and of course sweet Caleb yesterday. She even let me hold him and I felt so honored. I sensed she was nervous about it though and it reminded me to much of myself when Makily was that little. I was always nervous about people holding her that she wasn't used to. If she wasnt held a certain way she would cry and get upset. Her airway was such a mess that first year and crying always exasperated that. I just wanted to give her the biggest hug and tell her how much I understood her. I get her.

Caleb though is amazing. He is truly a sweet, perfect spirit like my Makily and it isn't very often I get to meet another child like this. His little cry reminded me so much of Makily in those early days. Holding him was much like holding her when she was that age. So tiny and frail, but it was so obvious she was in there and was a fighter from the very start.

Knowing how rare Emanuel Syndrome is and how rare Trisomy 18 is, I find it very strange that both of our families are living in the same small town. That we were connected in the way that we were and ended up having therapy on the same day at the same office...around the same time.

Wow.

I spoke with Jeanette briefly today and she said it was very good for her and her father to see Makily. That seeing my baby gave them hope.

She does not know it but that statement did things for my soul I can't describe.

According to medical science Makily should have died many times over the years...and she is still here. Still fighting, still stealing my heart every day.

I've been struggling with my faith lately. I can't say that I have resolved all of those issues but this chance meeting and connection means something. There is someone out there connecting us. Putting us in the places we are supposed to be at the right place and time. Sending us to those that need to be uplifted in only ways other families like mine can uplift them. I don't think Jeannette knows what our meeting did for me, what holding Caleb did for me either.

I know God is out there, I have to believe that, but I sure don't understand why he does a lot of the things he does.

It's not my place to question God....but I am ONLY human.

Please visit Caleb's blog today and offer his family words of love and encouragement.

We survived the first day of Kindergarten.

Mommy had a hard time.

So my baby is now a big girl.

*sigh*

When I dropped her off this morning her old PRE-K teacher Mrs. Byrd came up to say hello. Makily got so excited when she saw her, it immediately made me cry.

What can I say, I was on the verge of tears all morning anyway.

I kissed and hugged her bye after getting her strapped into her wheelchair.

Then I got in the van and bawled all the way home.

It's hard to let go and let your baby grow up. That was killing me but it was hard to look at her in that damn wheelchair on her first day of kindergarten. Oh how I have dreamed of her running into her classroom excited and ready for her first day of school.

I HAVE DREAMED OF THAT....she hasn't.

Makily was happy as a clam this morning and so I am happy for her.

They said she had a great day and there were no problems at all.

She has her own little student planner.

I love this kid.

School starts tomorrow!

So I am actually excited about it.

I went to Orientation at the school on Friday and I really liked Makily's teacher. The class will ONLY have five students INCLUDING Makily so I REALLY love that.

I have her outfit all picked out and her back pack ready.

I'm happy and sad about it all at the same time.

I just can't believe my baby is FIVE.

SHE'S FIVE.

How is it possible?

It seems like just yesterday I was holding her in my arms, distraught and wondering what the hell our futures were going to look like.

Here it is five years later and I don't think I could have guessed my life would be where it is today.

Who knows what the future holds?

I sure don't.

That being said, I am trying to turn over a new leaf.

I have found that I need structure.

How crazy, I am 32 years old and need someone else to make me structured?

I swear in some ways I really am 13 years old!

I need a schedule, I need to have somewhere to be, and a time to be there.

I NEED THAT.

So I am planning on working out again and tanning. I will drop Makily off, drop J off at Granny's (as long as she'll let me lol...I'm sure she will) and then I am hitting the gym. I always feel better when I work out. ALWAYS.

I am trying to force myself to think positively about certain things again. Admittedly in some cases it's harder then others but continuing to stomp my feet and say how unfair it is, is just making me sad. I'm tired of being sad.

Will post pics in the morning of my baby's first day of kindergarten.

That sentence gave me a lump in my throat. *sigh*

"Your Not Shaken"

As most of you know, I'm really into music. I get great joy out of hearing a song that I relate to in one way or another.

My friend Chontee send me this song and I listened to it and of course bawled my head off.

It really describes where I'm at right now, although I can't say that I have the same "resolve" right now as the song writer seems to.

I'm hoping I'll get there one day.

Your Not Shaken
Paul Stacey



Thanks for sending this Chontee.

Busy Day and a couple of pics.

Today Makily had her five year well check.

How is it that she is FIVE?

She is 33 lbs. 11 oz. (and my back swears she is 43 lbs LOL)

She is 37 inches tall.

The tube in her LEFT ear was just kind of sitting in the back of the canal and NOT in her ear so they lavaged that out. NOT FUN. It didn't take too long. I am putting drops in that ear though to prevent an infection.

She got three shots, she was NOT pleased. She cried and I admit I did get a little teary.

She starts kindergarten MONDAY.

WOW.

I got all 800 forms I needed from Dr. Pierre for her medications and her shot record.

J was a maniac during the visit, he was in and out of the cabinets, under the table, trying to play in the trash, opening the drawers...then SCREAMING....this was TONS of fun. Makily now gets upset when J cries. So when he is pitching a tantrum and being a brat....then Makily cries. So I have two kids screaming.....lovely!

I complain but really I wouldn't have it any other way. While my life is hard sometimes, I wouldn't trade either of the little turds. They truly are my heart.

Then we went to Walmart....I HAD to get diapers. Of course we had the stroller dilemma. I needed two boxes of diapers. I crammed one in the basket of the stroller (no easy feat mind you) and then put the other one on top of the hood part.

I get to the 20 items or less lane and OF COURSE there is a lady with about 100 items checking out. She pays with a card for her items. Then remembers she needs cigarettes and buys a carton and pays with a check.

EVERY.

TIME.

WHY DOES THIS HAPPEN TO ME!?

It's like I just prepare myself to get behind these people.
As I was putting all my stuff up on the belt, I look down and J has TWO PACKS of Hanes thong ladies underwear in his lap...clutching them for dear life. I have no idea when he picked these up but I promptly snatched them out of his hands.

WHY WOMEN'S UNDERWEAR?

It seriously reminded me of my dirty panties post....and THIS post.

So I finally check out. I put the two small bags in the basket then I cram the ONE box of diapers into the basket and balance the other on top of the hood of the stroller again. I get to the exit and would you believe the lady at the door asked to see my receipt. I looked at her....looked at the CRAZY TRAIN that is the double stroller, diapers and my children in front of me and said "Your kidding right"? She says no...and stands there waiting to see my receipt.

SIGH

I pull the damn box of diapers out of the basket, pull the two bags out from under the diapers....then I proceed to dump the contents of said bags onto the floor in front of her in search of my IMPORTANT receipt...because you know me, I STEAL HUGE BOXES OF DIAPERS FROM WALMART. I HAVE TIME FOR THAT. I find the receipt hand it to her, she looks at it for literally 1.2 seconds, slashes her important yellow line on it, hands it to me and then turns her back to me.

REALLY?!

REALLY?

SERIOUSLY?!

UGH.

I put all my crap back in the stroller and was tempted to just kick the damn boxes of diapers to the car. I figured I would make that more of a spectacle then I already was so I crammed them back into the stroller the best I could.

By the time I got to the van I was sweating. I throw everything in the van, put Makily in and then strap J in. I go back to the stroller to fold it down and throw IT in the back when a lady walks up and says WOW you sure have your hands full, it takes forever just to get in the car,I don't know if I'd want to go anywhere.

SIGH

I just smiled and said OH YEAH, it's a chore!

The thing is staying home is what brought me down so low so I AM TRYING, really hard to stop doing that. It may be a pain but I need to do it for my own sanity.

***Thanks for all the comments on my last post. They did help. I am still in a weird place as far as wondering why and God is concerned but I will get through it. ***

Where's my head?

It's in weird places.

So on top of all the other crap I mentioned before about being depressed and all, I am struggling with another issue.

Where is God?

There I said it.

I came out and said that I PATRICIA CALDWELL, woman that everyone thinks has this perfect faith is having major spiritual problems.

I am questioning God like I never have before in my life. Even more so then after Makily was born. I've been doing that for quite a while now....just haven't had the nerve to admit it.

For a long time I kept telling myself all the problems we have had was for a reason.

God was working, he was doing it for the greater good.

Well I am T-I-R-E-D.

I think I have seen too much.

I can't say I don't believe in God anymore, in fact the thought of just uttering those words makes me feel very odd. I just don't think I believe some things I always believed before Makily was born.

Where was God when Makily lay suffering in Shands when she was six months old?

Where was he when I was begging and pleading for the doctors to help her?

Where was God when I nearly had a nervous break down after being in the hospital with her for nearly five weeks? I vividly remember laying in the floor of the shower of Makily's hospital room crying so hard I vomited. I remember feeling catatonic afterwards.

Where was God on the night Makily had her seizure and I was here with her alone and horrified? I can't say I felt his presence that night or the two nights thereafter that she had to be put in a drug induced coma to stop the seizing.

More importantly where has God been for the past five years that I have been praying and begging him to heal Makily? There are actually people that believe if you just pray enough...or the right way (and what is the right way?) that God will answer your prayers. Well I am sure I have prayed many different ways....and my prayers seem to have fallen on deaf ears. I don't even expect her to be "normal", I've just prayed for simple things like Makily to walk, to talk or....gasp....to eat by mouth.

What I am saying here is that I am not praying for God to give us a million dollars.

I am praying for my baby's life to be fuller then it is.

What's sad....is that I'm not the only one. Our family is not the only family that I have witnessed go through some pretty HORRIBLE times.

Look at Andrea (and i hope you don't mind me calling you out here honey, I love you dearly, your life has deeply touched mine). She had sweet Luke with CMS, then has beautiful Hannah whom avoids having CMS but instead has Downs.

REALLY.....REALLY GOD? SERIOUSLY?

I have been following THIS FAMILY.

They had one baby....little Gabe who passed in-utero. Then she joyfully gave birth to little Jonah. Jonah has EB...a condition which basically makes his skin just fall off, and create sores all over his body. The things HE and his family have to endure are RIDICULOUS. They are handling it amazingly well. I can't help but look at Jonah's angel face. He is smiling, his GORGEOUS blue eyes gleaming, with sores all over him. I wonder WHY GOD....WHY!!!

Right now the Osero family also has been on my mind. Danny has been in patient for SEVEN...YES SEVEN WEEKS. One thing after another, after another, after another. His mother reminds me of me and her stay has been MUCH LIKE the one I had with Makily at six months. She's begging for certain things, the doctors ignore, her child suffers....then in the end they do what she said from the get go. I'd be a lunatic....I was.

Why should ANY child suffer?

I think I have seen too much.

When you have watched your child suffer time and time again, it changes you.

When you sit back and realize that no matter how hard you try, how much you do there are just certain things that aren't ever going to get better. That your child will just have to deal with it....and you will have to sit by and watch it...helpless.

I went to Walmart last week to school shop, how depressing it was to stand in the back to school aisle and KNOW that there is NOTHING there Makily can use. I decided to go buy her new clothes instead, I regretted that decision quickly when I found myself standing in front of all the leotards, tutu's and tights. More things Makily won't ever need, things she won't get to do. I'll never get to sit at a recital watching her dance off beat and clumsily in a tutu...and frankly THAT PISSES ME OFF.

I'll say it again, I'm not asking to win the lottery, or be a super star....I just want the simple things for my baby.

I am grateful for one thing though, I am grateful that Makily has no idea she is different. I am happy that she only knows our love for her and LOVES US back. If she knew she was different, if she understood the jokes that will be made about her as she gets older.......I might not be able to bear it.

So there it is, the hard, ugly truth.

I'm not sure where to go from here.