At 8 pm tonight.....

....it will be five years since my labor began with Makily.

I had felt crummy all day long.

Had Braxton Hicks the majority of the day.

I laid in bed around 8 o'clock thinking my BH would go away. I watched a surfing documentary on MTV. They featured a girl that was surfing and her arm was bitten off by a shark. She recovered and STILL surfs.

I remember thinking how brave she was.

By the time the show was over my "BH" were getting more and more annoying. I decided on a whim to time them.

To my surprise they were three minutes apart.

I almost panicked.

Allen was on the road. I was home by myself.

I called my Mom and Dad, then called the maternity dept at the hospital. They asked me if I had felt Makily moving, I told them not as much as usual.

They said I should come in just to be checked out.

My parents came and picked me up and took me there. I called Allen while I waited for them and he immediately started to head home.

I didnt know it but it would be 48 hours until Makily was born.

48 hours of LONG anxious labor.

I had no idea that would pale in comparison to what was about to happen to us.

Turned down a placement on Monday.

That was hard.

I told my friend it's a good thing they call and don't just show up at your door with these kids and say "can you take him/her?".

I'D BE IN BIG TROUBLE!

It was a one year old little boy. Supposedly was only going to be placed for one month. The circumstances they gave me though were a bit shady and I really doubt it would have only been for a month.

I asked Allen what he thought we should do and he said "Well I would say yes but you are the one that is home 24/7 so it's up to you".

Gee thanks!

I thought about it and it is really the WRONG time to take on another little one SO CLOSE to J's age. It would be almost like having twin boys. GOOD LORD! Our April schedule is JAM PACKED full of therapy, doctors appointments, a sleep study, Makily's birthday, a couple of Ocalamom events and a ton of other things and so I knew it would be too hard. If they could have guaranteed a time frame we would have considered it more but they really couldn't and the reasoning behind the time frame wasn't making sense to me. As Judge Judy says "If it doesn't make sense it usually isn't TRUE"!

I felt guilty for saying no the rest of the day. I got up Tuesday morning though and was glad I didn't say yes though. J and Makily have so much going on this month and right now I just have to focus on both of them.

Thankful for the small things.

Makily's pulmonology appointment was today.

Ho Hum.

They wanted $710 for our "back co-insurance payment"?

Uhm......WHAT?

No one could explain what that was....first girl said it was NOT a co-pay?

After back and forth banter it was discovered these WERE co-pays. (DUH?) Sleep studies are AT LEAST $1000 A POP, Makily has had three that's $600 PLUS co-pays for office visits that no one asked us for at the visits?

I said I had no intentions on paying $710.

We paid $150 and they saw us.

We'll be paying on that for a while. $10 a month. They want it paid in five months. Wonder if they hold their breath?

sigh

It sucks not to have back up insurance when you have a medically fragile kid.

Wait...isn't this post supposed to be about Thankfulness?

I'm bitching again.

ANYWAY.

The appt went fine. Of course as with EVERYTHING ELSE concerning Makily all the solutions he offered for her have a "will fix this but could mess this up" or even better, my favorite "not guaranteed to work but IS GUARANTEED to cause lots of pain". Let's jump at that option shall we? NOT REALLY!

Here's what we went over:

1. C-Pap is a no go for all the reasons I mentioned and he totally agreed.

2. He mentioned a jaw distraction again. Says he feels the apnea is likely caused by the PRS. Reminded him that we already talked about that and decided not to do it. He then asked me if I had spoken with the Craniofacial team.

*sigh*

I then reminded him that YES Makily had seen Craniofacial since birth we spoke with them about a distraction at his urging over a year ago and they said NO her PRS is not severe enough to do a distraction and that they felt that it would be too much trauma for her.....I agree. Before he brought up removing her tonsils and adenoids I reminded him they were microscopic per the ENT and in no way were causing the obstructive apnea (Didn't I just pay him $150 to know all this....I'm just sayin). He then said that jaw distractions are very painful and that it's not guaranteed to fix the problem.


3. Supplemental oxygen at night. He is on the fence about this but at this point it's the only "solution" I see. His fear is that if she is requiring too much oxygen while she sleeps that her body will become dependant on it (that didn't make sense...all our bodies depend on oxygen right? heh). What he means is that he is afraid Makily will start NEEDING oxygen more than just at night as her body's drive to breathe will not be as strong since it may get used to having oxygen during the night. He says if she only needs a small amount that it shouldn't be a problem BUT if she is needing two or more liters then she could have troubles down the road. Makily needs more breathing problems like she needs a hole in the head. I am not thrilled about doing oxygen at night and risking her body eventually ALWAYS needing it but on the other hand SHE'S TIRED. She's tired A LOT. They even mentioned this at her IEP. I don't know what to do about it.

So we are doing another sleep study. When/if she starts desatting they will put nasal cannula oxygen on her and see if that helps. They will see how much she has to have to keep her sats up. He did say that since she is bigger the apnea may be better but with as sleepy as she is I really don't think that it's gotten better. I'm no doctor though. I just work here.

The good news though is that Makily was SO HAPPY all day today. I just enjoyed watching her giggle, smile and laugh. It was awesome. She is great on car trips. She loves it. I took video.

Here it is:

Make video montages at www.OneTrueMedia.com

See like I said, "thankful for the small things". ;-)

Bits N Pieces.

Okay so this will be a chopped up entry with stuff I meant to post/blog in the last several days but with everything going on have not done.

1. Makily went to see Neuro last week. All was fine, he wants to wean her meds. He told me she is really ONLY on 1/4 the dose for her weight so he doubts that is doing anything for her. She has been seizure free for nearly three years, EEG's normal, MRI's unchanged...yada yada yada. We are going to do another EEG and discuss weaning again after that. I don't know how to feel about weaning, I am back and forth. I do know I do NOT want to see Makily seize EVER again. EVER. EVER. Did I say ever? He assured me that we would have emergency medication on hand but I don't know. What can I say, I'm a nervous mommy.

2. We see Pulmonology tomorrow (Monday). Makily is *supposed* to be sleeping with a C-PAP on her face. Long story short....she's not. We have the machine, she just refuses to let us put the damn mask on her...here is a picture of the thing (Makily's does not have the straps that go around her head though, it's almost like a freaking hat with a ton of holes in it).



I ask you......how many of you with "normal" four/five year olds would wear this to sleep in? She screams bloody murder, I can't torture her like that. On the other hand she's always sleepy so my guess is that it's from the sleep apnea....sigh. At this point I am just hoping he will suggest supplemental oxygen at night via nasal cannula. She tolerates that (has before in the hospital) better. I assume he is going to order another sleep study.....I LOATHE sleep studies. Makily LOATHES sleep studies. It should be loads of fun.

3. All is quiet on the fostering front. *knock on wood* I like quiet when it comes to that.

4. Joined a new gym. So far I love it. It's like $20 a month for use of all the equipment (treadmills, bikes, the stair climber thingies, weights). They have a 30 minute circuit training room that I love. I also get unlimited tanning too so it's an awesome deal! I want to lose some weight before the summer. Seriously I am so tired of going up and down and up and down...story of my life.

5. You may recall from THIS ENTRY that I did something incredibly stupid on the way out of town and I promised to share my shame?

Well here it is.

Allen and I were rushing around like mad (I was rushing around....Allen GOD LOVE HIM has two speeds turtle and tortoise, he DOES NOT rush unless his hair is on fire) trying to get out of the house to head to Orlando. I of course gave him a hard time about it. I know I really need to work on this, it's a quirk I have....I multi-task and I just want everyone to.

ANYWAY.

On the way out of town we were going to drop the water bill off in the drop box. I go to get out of the van....look down and see this:

Did you not quite get it?

Well here let me help you.

MY LEFT FOOT

MY RIGHT FOOT

I had no idea I did this....NONE....I didnt feel the difference. Oh and did I mention these were the ONLY shoes I brought with me? We made a trip to Walgreens as soon as we got into Orlando and I bought a pair of MATCHING sandals.

I am a scatterbrain.

Allen made me go into the jiffy store to get him Mountain Dew with my mismatched shoes. He laughed at me all day. I deserved it.

Here are pictures from the rest of that trip:

Allen Squinting by the pool


Aubrey being adorable


Makily having a good time


Makily


Eating and sitting with Mommy


The Pool


Some really cute baby feet! ;-)


Here are a few more snap shots from the last couple of weeks. I havent shared pics and so I thought I would catch up here.

Sleepy Girl after school


Cute baby watching TV


A sleeping Princess in her little (okay HUGE) nest.


Time for SCHOOL!

Goodbye Bryant.

Another member of our "chromosome family" has passed away.

Bryant went to sleep and never awoke yesterday morning.

He was 20 years old.

I met Bryant and his mother Cheryl at the Chromosome 22 conference in Canada in 2006. He had an even RARER genetic condition than Makily. He had a translocation of 3, 7 and 11. (Makily's involves 11 and 22)

They told his parents he most likely would not survive.

He lived 20 years.

I believe he lived that long because of the dedication both his parents had to him. Dave and Cheryl worked incredibly hard to give Bryant the best quality of life possible. I also believe that Bryant had a strong spirit and amazing will to live. His mother was/is a fervent advocate for him. She showed me what it is to fight for the rights of your child.

They took Bryant EVERYWHERE. Each time I saw a photo of him he was at Disney World, the beach, a hockey game, the mall, ........you name it Bryant was there.

Bryant did have many physical challenges in his life. He is now free of the pain and difficulties that he faced on this earth.

That being said I know his family desperately misses him. I know they are heart broken and left wondering what to do with themselves. Cheryl has taken care of him for so long, I can't imagine what it is like for her right now.

Please keep this family in your prayers as they mourn the loss of their son and brother.

To Bryant's family, words cannott express how terribly sorry I am for your incredible loss. I know that your hearts are broken and you don't understand. I am thinking and praying for you. Thank you for being an example of what it is to adovocate for your child, to never give up and to always love unconditionally. My heart is with you. Bryant will never be forgotten.

BRYANT'S BLOG

Rest in Peace Bryant.

Bryant at the beach with his mom Cheryl


I just wanted to add something. I am always amazed at how strongly our children are connected. Bryant passed away ON Maia's 14 birthday. This is not the first and I am sure won't be the last time I have seen a connection such as this with our children.


**I know my blog has been rather down lately. My last entry was not a "cheery" one and obviously this one isn't either. I won't apologize because THIS IS REAL LIFE, sometimes it's terribly sad and hard. If I am nothing else, I am real on my blog though. This is ME. I hope that in sharing the harder things others (INCLUDING MYSELF) will appreciate each and every blessing they have even more.
HUGE THANKS TO ALL THE AMAZING comments on my last entry...I plan on thanking you in depth in another entry but, right now I want to honor Bryant and his family.**

I want more.

*Disclaimer:
This post is going to be incredibly depressing. I suggest if you are PMS'ing or just having a bad day in general to pass this one up and save to read for another time. I need to get this stuff out before it eats me alive.

I want more.

It sounds incredibly selfish doesn't it?

Well sometimes Mommies are selfish.

The other day I was on the phone with my mom.

I was talking to her about how much I hate the way things are for Makily.

My mom is ALWAYS positive and hopeful when it comes to Makily. SO MUCH SO that even when she had her grand mal seizure back in 2006 my mom insisted everything was fine. Now picture it, Makily lay in front of her in the emergency room, intubated, sedated with enough meds to knock over a horse, STILL SEIZING with all these meds in her and my mom continued to look at me saying "Makily is fine". Granted that particular time she said it with tears streaming down her face and fear in her eyes. She still insisted that Makily was just fine.

This memory makes me cry by the way.

So anyway I was having the "woe is me" moment on the phone with my mom last week and she said something she and others have said to me before.

"It could be so much worse".

That's true it COULD be so much worse, but ya know what?

It could be a HELL OF A LOT BETTER.

So at this point I went off on a tangent about all the things that could be better, the longer my list got, the more upset I got until I was hysterically crying.

When I realized that one of the things that I said could be better was that "I want Makily to color" I really lost it. I said "Mom how sad is it that I DREAM of my FIVE year old coloring, do you hear how pathetic that sounds"?

*sigh*

I ADORE Makily. I wouldn't trade her for the world but that does not change the fact that I want to give her the world and I can't. No matter how much money I have, how much therapy I get for her, no matter how much food I cram in her mouth or times I say "mamma" in a desperate attempt to get her to say it back to me, Makily will NEVER have the life that she should have had or deserves.

Makily does not get to enjoy running or playing. She can't go up to another child and play a game. She would be content watching Spongebob and playing with one of her toys alone.

I just want so much more for her.

I look back at myself when I was pregnant with her and think "gee I sure was oblivious".

I really was.

34 weeks pregnant with Makily. Valentine's Day 2004.


They say ignorance IS bliss. I didn't know how true that statement was until I had Makily.

Allen and I after my baby shower. 36 weeks pregnant.


In the two above pictures I was literally on cloud nine. My life was perfect. The icing on the cake was going to be when I gave birth to the "healthy" baby I was carrying. My life would be complete.

I had no idea in those pictures that I would find myself desperately forcing a smile for our very first family photos together.

Allen, Makily and I a few hours after her birth before Shands NICU came to take her away.


I had no idea that the first time I held my newborn I would want to put her down and run in fear of what was happening.



It never occur ed to me that the morning after her birth I would drive 30 miles to Shands to find my newborn like this:



and with no explanation of why she was that way.

In my pregnancy pictures I still see that girl I was before. The blissfully ignorant person who had never REALLY experienced any sort of tragedy or deep loss. I see a person that was happier than she had ever been in her life. I truly did look at the world through rose colored glasses.

I look at those pictures now and shake my head saying "I had no idea what was about to happen to us".

I never imagined back then that this would be the picture of the first day we brought Makily home.



I never would have believed that Allen and I would know how to use a G tube by the time my daughter was a month old.

Most of all I had no idea that I would have to watch my daughter in immense amounts of pain.....on more occasions than I can count....and not be able to do a damn thing for her to make it better.



I want Makily to run, dance, play, sing, yell, scream, skip, walk, climb and JUMP. I want her to like to paint, color, glue, cut paper and do all the things a five year old can do. I want her to have TONS of little friends that can come over and giggle during a slumber party until I am screaming at them to go to sleep.

I want Makily to run up to me and throw her arms around my neck and tell me she loves me.

I want the same thing for Allen.

At Makily's last IEP they told me something that I didn't tell anyone. Not even Allen. I kept it in the back of my mind desperate not to think about it or deal with it. I thought if I didn't talk about it maybe I would be able to get through March without loosing it.

Makily has to be re-evaluated because her "developmentally delayed" label can no longer be used after age five.

They will do an IQ test (don't ask how on earth they can do that with a non-verbal child, I have no idea).

Makily's new label will likely be "mentally retarded".

I knew this already, I mean I've read the reports on Emanuel Syndrome, the doctors told us that she would be "retarded" when they diagnosed her. I guess when she was little I held out hope that maybe that would not be true. The older Makily gets though the harder it is to deny. Even reading the word "retarded" makes my stomach churn since having her. I knew what *I* thought mentally retarded was before Makily was born and so I know what people that DON'T LOVE AND KNOW MAKILY think of her.

I want everyone on the planet to look at Makily like I do.

The fact still remains though that if you don't know us, love Makily or follow her story you would look at her and think "that child is retarded".

Part of the reason I started my blog was because I wanted everyone in the world to know what an amazing kid Makily is......even though she is the "r" word. I am slowly accepting that I can't educate the world. I can't change the world's perception of what a "retarded" person is. I can't make everyone understand me or how I see things. Not everyone lives my life. That makes me feel really lonely and sad. I take comfort knowing that their are other families out there that KNOW what this is like. I am grateful for Allen that I have him and that I know he hurts about all these things as much as I do.....he just doesn't talk about them.

So tonight I am sad because I want more for Makily and I can't give it to her.

She will be five in less than two weeks and I will not be looking back at her birth with warm fuzzy feelings. I will always look back at it was sadness and grief. That makes me feel so guilty.

I can't change it though.

Believe me, I've tried.

I love you Makily.

You deserve the world baby and I would do anything to give it to you.

Nothing good to say....

....so I am just not wanting to blog.

Earlier today I had all this stuff I was going to put up but I am in a good mood at the moment so I don't want to talk about all the sad crap and bring myself down again.

As I have said before March/April really suck for me. I thought I would be able to get through this time of year without feeling this way.

I give.

I feel this way.

As much as I have tried to pretend I was okay to myself at least, I'm not.

Stuff was said at Makily's IEP that I just didnt go into....with ANYONE...not even Allen. That was until last week. When I talked about it, it just sent me over the edge. So here I am again, sad.....and depressed in the weeks before my daughter's birthday.

I will blog more this week, I just can't do it right now. Allen is home this week, he and I have been laughing and joking for the last couple of hours so I just don't want to get too deep here and ruin my mood.

Didnt want all you bloggies to wonder where I went though.

Still don't have the pics from the weekend yet. Trishtwo has my camera. I am dying.

Ahhhhhhhhhhhhhhhhh...............

Hi Bloggies.

That was a huge relaxation sigh.

Weekend has been great.

Started out rocky on Friday night before it even began. LOOOOOONG confusing story and if I tried to blog it all, it would leave you scratching your heads. I'd likely be annoyed again too in rehashing it so I just won't go there.

ANYWAY

My babies were amazing, the sun was warm, drinks were cold and the pool WAS PERFECT. I have a sunburn that's even perfect if that makes sense. Ya know burnt enough to know it's gonna turn brown but not burnt enough that you are in so much pain you needs globs of solarcaine and aloe?

We are checking out of the hotel in a few mins. Thought I would blog while it was quiet and I had a second. Gotta love a hotel with high speed Internet right?

I have pics galore that I will post later on today when I get home. I hope I actually have my camera and Trishtwo doesn't...hmmmm I will have to call them.

I also have a HILARIOUS story from Saturday morning. While it makes me look incredibly stupid, it shows how scatterbrained I truly am. I took pictures of my oversight because really had I not seen it firsthand myself I wouldn't have believed I really did this. REALLY......

If I couldn't laugh at myself where would I be today?

Makily has a neuro appt at 10:30, it's just her six month follow up. No problems there thankfully. We'll probably go to lunch and then home after that.

Stay tuned for pics of sun, fun and insanity with me.

**fyi....only negative thing is that I realized I AM A COW (okay I already knew I had a huge butt, just being a bathing suit all weekend was a HARSH reminder I guess). Gotta get back on a diet/work out plan. Maybe I will take Michelle's advice and eat fiber 24/7. I think that's the equivalent of a colonic right? LOLOL

It'd be nice to be HAWT for the summer.

I'm here....

....just blaaaaa.

March/April suck for me.

Every year.

Brings back nasty memories.

Things I'd like to forget but never will.

A fellow ES mamma posted last night about how sad it all still makes her.

sigh

Been a bad, yucky day.

I don't even want to blog about all of it right now.

I've cried a ton tonight about it.

We are going to a "resort" in Orlando on Saturday to lay by the pool and drink Margarita's.

Hopefully the relaxation and sun will pull me out of this funk.

I'm old....and stuff.

So yesterday Ocalamom had a tent at Kidfetti.

HOLY GUACAMOLE, we were BUSY.

We got slammed.

I LOVED IT.

That being said I realized how old I am on my drive home.

I was so sore from the top of my head to the tips of my toes....literally.

My arthritis was acting up.....I am surprised I didn't break a hip.

Just kidding about the hip....but I really do have arthritis already.

When it flares up I giggle to myself as I take my Osto-Bi-Flex and remember the commercial with all the old farts speed walking after taking theirs.



Yes I am a freak.

I had to take BOTH kids.

Yes both of them.

I need to brag on my babies...THEY WERE AMAZING.

Makily is ALWAYS a good girl, long as she has Spongebob she's set.

J on the other hand is a maniac when he gets bored.

I was so proud of him, he did not scream, yell, or throw tantrums (okay maybe one early on but he was bored). Once our tent got hopping he was in HEAVEN. He loved all the commotion and people. He was content hanging out by my sister Elizabeth watching her blow up and give out balloons. He REALLY loves other kids. He squeals and reaches out to them. He tried to take some lady's purse. I apologized and told her he was a pick pocket already. She didn't think it was as funny as I did though?

He LOOOOVED Matt Manatee and actually snuggled with him. This surprised me since he FREAKED out for Santa. A guy came up with a news camera (I think that's what it was) and taped J snuggling with Matt. I won't tell you who was in the Matt Manatee suit but I will give you initials....first name is Trish....last name is Two....maybe he knew his Auntie Trish was in there and that's why he snuggled? She is on camera in the suit.....SOOOO HILARIOUS! I didn't dare get in the suit, it's hard to walk in and you can't see well either. I fall just walking. Can you imagine me in a huge Manatee suit rolling on the ground trying to get up?...not cute.....not cute at all!

Makily got super hot but handled it well. I kept dousing her down with cold water (in her hair), then I would sit at the front of the tent with her. It was actually cooler out there then in our tent. Explain that? Anyway they had a "blow up dancing air puppet" near our tent and she laughed and LOVED watching that.



We had balloons we were giving out and we tied a couple to the double stroller and Makily loved playing with them. A couple of mom's came up that are from Ocalamom and wanted to meet Makily. Gave me warm fuzzies. One little girl and her mom met us up at Light Up Ocala. Suzanne and Katie. Katie wanted to see Makily again and she took pics with her. My baby is so famous. She's touched so many people. I am so damn proud of her I can't stand it.

We had wooden maracas that the kids could paint or color with markers.



Just FYI, if you want a maraca to dry fast...use markers...not paint. The kids loved it either way though, great idea Trishtwo....you rock. We gave out 1,000 of them....yes ONE THOUSAND maracas. That and a ton of balloons and other promotional stuff. My sister Elizabeth has a blister on her finger from tying balloons. She was a huge help. Chontee came by and brought Bri and Cole. She helped with the balloons again (she was a huge help at Light Up too). We really had a rhythm going didn't we guys?

I had two "moments".

I need to think of a name for moments like these. I always get this feeling that I can't describe when things like this happen.

First one was a little boy that came up and pointed to the helium tank. We had someone out front giving out the already blown up balloons and we told him to go up there. He looked confused. I told him again and then he started to walk away....still looking confused....IT HIT ME, he couldn't hear me. I looked at Elizabeth and said "blow him up a balloon, he can't hear me". I tapped him on the shoulder and held up one finger and said "just a sec". His brother said "he can't hear you" I told him I had just figured that out and I was getting him a balloon.

Is it totally lame that I just wanted to hug that boy like crazy?

Don't worry I resisted the urge and just gave him a balloon instead.

Later on I was going for a Port-A-Potty break (EL PUKO....that was typed in Spanish for Michelle LOL). I got right to the entrance of our tent and saw a mother knelt on the ground next to a boy that was about seven or eight. He was in the fetal position on a quilt crying. I asked her if I could help, did he fall? I felt like a moron as soon as I asked if he fell because he was obviously laying on a quilt. She said "he has autism, his sister wants to stay but this is really overwhelming for him". I asked her if there was anything I could do to try and make things easier for her....a drink........anything. She said water. I got a bottle of water out of our stashed cooler and gave it to her. I helped her move him to the side of the tent and then told her to get me if I could do anything else....to take her time. I didn't want to hover over her, I am sure she felt all the eyes passing by watching her.

I found myself also wanting to hug the crap out of this mother and her son. She felt torn I am sure, her son was unable to deal with all the excitement and her daughter wanted to stay for the fun. What to do? Eventually I saw they were gone so I am hoping he was able to get himself back together and enjoy the day.

I have to laugh at the irony of me RUNNING to disabled kids. I swear before Makily I would have been running the other way like my hair was on fire. Okay not blatantly running but I had no idea how to act around differently abled people and felt horribly awkward. I wouldn't have wanted to hurt their feelings so I just avoided. Now I find myself wanting to hug all of them, get to know them, their parents, hear their story, let them meet Makily etc etc.

I am so changed.

It's a good change I think ;-)

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

Some VERY good, VERY promising things happening with J's case. I can't give details but for now things look good. I am cautiously optimistic. VERY CAUTIOUSLY. I know how quickly things can change. I do not think that this case is going to end any time soon though. Obviously I wish that it would but I am being realistic. I have been joking that by the time it's all over J will be in college. With the other "good stuff" happening though I am just counting my blessings and continuing to "let go and let God". It's gotten us this far right?

Oh and just to prove how crazy Allen and I really are we decided to up the number of placements we will take from one to two.

Great idea huh?

***crickets***

No seriously we did increase our cap from one to two. Likely we will ONLY take respite care (for other foster parents) or children that are short term placements. I really enjoyed caring for Snuggles (although it was sad saying Goodbye) and I think we can do it. Obviously the timing will be critical.....has to be the right time, right kid, right situation. Don't worry, I seriously will NOT take any more than I think we can handle and I tend to be on the modest side when it comes to that too. Allen would take every child they called us with. That's not a joke either. I'd be the woman that lived in the shoe if I let him talk to placement....which I don't.



You could call me Octomom.

Just pretend the above cartoon is Allen on the phone with our agency saying yes to a sibling group of eight.

We are staying in our 0-2 age range. I just don't think we are ready for older kids, and I don't think we really ever will be though.

I have learned not to say "never" though so I won't say that.

The Climb.

My friend Chontee told me about this song not too long ago.


I've mentioned her on my blog a few times.


It's strange how we met....

I had taken Makily in to have a chest x-ray done. The radiology lady was helping me position Makily and she had lots of questions. She was asking more than they usually do and I was starting to get annoyed. Then it clicked in my head that this woman may have reasons for asking and I need to get over myself. I explained all about Makily to her and she seemed genuinely interested so I kind of felt like a jerk for initially getting annoyed.


ANYWAY.


Once the x-ray was over, she took me to the side and told me her daughter had a little girl that was two. Her name was Brianna and she had "something". She was not walking or talking yet and had some other health problems. The doctors couldn't seem to figure out what was going on with her, although they knew at birth something was wrong. She had lots of tests and no answers. (I must add that after her mom told me all this I felt like an even BIGGER jerk for being annoyed at all, this was a HUGE lesson learned, believe me I am much better about talking about Makily to strangers that ask now)




Her mom also told me that her daughter was 21, and also had a one year old. I remember thinking "wow I was crazy with Makily and she was my only kid and I was 26...I can't imagine having two kids that young, one with problems".

I told her mom about my blog and gave her my email and I think my phone number. I have done this before in the past. We get stopped a lot especially if we are at a specialists office and sometimes just randomly out of no where (if people see the tube) so I didn't really expect to hear from anyone.

Well Chontee read my blog, emailed me and we became fast friends. She told me all about Brianna. I laughed at how she, much like me has nearly earned her medical degree using the University of Google. She told me she had diagnosed Bri with just about everything under the sun.......and I totally understood that.

Makily and Bri at the Christmas Parade.

We only went six days not knowing what exactly was wrong with Makily.

That was a torturous six days.

Granted once they told me I found myself wishing they would "un-tell" me.

Still not knowing is HARD.

REALLY HARD.

I wanted to know what was wrong with Makily but I was terrified at the same time. I had less than a week's wait though. I think after several months I may have lost my mind though.

So Bri is still undiagnosed........and she is three years old.

Chontee is still researching everything she possibly can to try and figure it out and seeing many specialists for their help. She and her husband much like Allen and I have to make decisions.....decisions where both choices suck.

Sometimes when I talk to Chontee I can hear myself in her.

I hear the pain in her voice, I can feel it deep in places I don't like to go. The pain of knowing you will not see your child dance in a tutu, go to prom, graduate, get married, have babies. The simple things that most parents take for granted..those are the things that hurt the most.

You hurt for you, but the hurt you feel for your child is....well....it's indescribable.

It's a horrible helplessness.

You can't fix it, it's there, glaring at you every day. No matter how much you try to push it to the back of your mind, your heart is aching with it even when you are wearing a smile on your face. When you are showing the world all is okay.....deep down there is always this open wound that will never heal and will never go away.

You always will wonder "what might have been".

I remember last year at Cameron's dance recital Makily was LOVING IT. She kicked and laughed and had a big time. It warmed my heart but tore me up at the same time. I remember looking at Trishtwo and saying "she would have really loved doing that huh"?

While the scenario's will change over time as Makily gets older, I will always wonder what she might have been had it not been for the faulty gene she has.

My point to this entire depressing post is that in some ways I have come A LONG way emotionally since Makily was born. In other ways, I am still an open wound. One hard knock and I start bleeding all over the place again. I guess the difference in me now and then is that it takes much more to break me back open.

My skin is thicker and I have gotten tougher.

It took me five years to get here.

This has been one bitch of a mountain to climb. What's worse is that, I'm not even a quarter of the way up this mountain. "The Climb" has made me who I am though, it will continue to. I don't know what the top of this mountain will look like, I really don't think it matters anymore.

Makily has taught me that I need to take EVERYTHING day by day, step by step, battle by battle.

J has taught me that sometimes I just need to take my hands off things and let God do it. I can't control everything, I've never been able to and when I finally get that through my thick skull maybe I won't have to climb so damn hard all the time.

*Chontee, I've told you that this will always hurt, but it will get easier. You are an amazing mother to Brianna. God gave her to you because he knew you would give your life and do everything to make her life the best it can be. I pray that one day you will be able to see her do all the things you dream for her. If that day never comes though, I know you will have learned more from her than you ever imagined you could. *

Thank you for being my friend, quirks and all.

**Forgive my spacing on this, the html codes got all garbled halfway down and I am too lazy to go through and fix them all. I know I suck.

Busy, Busy, Busy.

I've mentioned a couple of times that I am working for Ocalamom.com. We have an event coming up next weekend. Kidfetti. I am excited about it. It's going to be super fun but REALLY busy. Jordin Sparks is head lining and I hope that I at least get to see a little of her show. I really like her.

When Trishtwo and I did Light Up Ocala GOOD LORD we were swamped. I have never given away more balloons and crap in my life. When we pulled out the glow sticks though FORGET IT.....you would have thought we were giving out $100 bills. Hopefully we will be more prepared this time, I don't think we had any idea what to expect (at least I didn't). There is going to be TONS of kid/family related activities in addition to the concerts and shows. If you are in the Ocala area PLEASE come out to Kidfetti on Saturday and stop by our booth to say Hi! Our craft is going to be making maracas. We'll have music, dancing, Matt Manatee, limbo, a ring toss, give aways and more.


Stuff going on with J's case this week.

UGH.

I do so well when I don't have to think about this part of it. I don't stress or get upset. When "stuff" starts up again though....ugh. I worry. I have to keep reminding myself of my resolve to let go and let God. It's been working I just have to stick with it. Pray for peace for me in this. Pray for J, pray for all those making decisions on his behalf. Continue to pray that no matter what happens I will be able to see God's hand in this.

Makily's fifth birthday is in a month. HOW THE HECK IS SHE GOING TO BE FIVE? Where has the time gone. Is it just me or does it seem like when you are young time DRAGS on and on but when you are an adult, good Lord time flies.

Tons of appts to make and things to do for Makily's health. Pulmonology will likely order another sleep study. Neurology needs a follow up. What fun. We are trying to decide if we are sending her to summer school this year or not. We didn't last year. She'll get all her therapies at school but if we don't send her we are going to have to do them privately and I am really not sure how much money is left in our insurance for therapies. We have REALLY been focusing on private speech so I will have to check with that.

We are also going through our foster re-licensing right now. Health Dept inspection was good, our licensing lady came out (I LOVE her by the way, much better than the moron we had to begin with....whom by the way if I never shared this here....she was fired), she took pics of the house, goo goo'd at the kids and just told us what paper work we still needed which is minimal. We each have to have 12 training hours a year and I have all mine done. Allen just finished his online. I like that we are going through re-licensing right now though. Just means that if J's case goes to adoption soon (okay I am dreaming, just work with me) all of our paper work will be rather fresh and they will ONLY have to update minimal things in order to convert our foster home study to an adoption home study.

One can hope right?