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.

Writing a Will.

**Disclaimer**:
This is a depressing post that may have some statements that could offend others. Please read with caution and as much understanding as you possibly can muster. Realize that this was written by a mother who loves her child more than she loves her self and that fears for her future every waking moment of her life.

So Allen and I have said to each other many, many times that we need to right a will.

We do.

Why have we avoided it like the plague you ask?

Well because when you are the parent of a special needs child, writing a will is enough to send you into total panic mode.

We talked about it in length last night while we were laying in bed.

Of course the biggest subject is what would happen to Makily.

The thought of her on this earth without Allen or I nauseates me.

Don't get me wrong, we have a ton of friends and family that love Makily dearly and that I would trust her with. In the end though NO ONE will do things like I do them or be able to connect with MY Makily like Allen and I do.

Is this about control?

To an extent for me it is.

Let's face it, I can't STAND to watch Allen do Makily's hair (when in reality I should thank my lucky stars I have a husband that WILL DO Makily's hair). It's not that he does it wrong, it's just not how I do it. Same with the way he gives her meds, sets up her bath etc etc. It's NOT wrong by any stretch of the imagination but it's not my way so it irks me. I have come a long way in the past four years though. I have learned to keep my big mouth shut and let him do it.

Even some paid professionals have made catastrophic mistakes with Makily. How on earth could I trust that she would be watched over like a Hawk when I am gone? I watched one nurse fumbling all over the place once trying to give Makily medication into her "balloon port" on her G tube. I quickly pointed out that was the wrong port. If you have been reading my blog for any length of time you will know all the lovely mistakes made at Shands Childrens Hospital too.

SCARY!

Of all the things in my life that torture me, the thought of my girl sitting alone somewhere in a "home" is the worst. What if she is just left to sit in a chair and stare at a wall all day? What if they don't feed her right or keep her clean?

Most of all what if she is not loved and what if she is lonely and sad.

The what if's go on until I am a hysterical, crying mess.

Like I said before we have family and MANY friends that love and adore Makily. I have to be brutally honest with myself though. Asking someone to take care of her after Allen and I are gone is a HUGE, life long responsibility that will NOT get easier. It will be forever.

I vividly recall the feeling I felt when I as her own mother realized the "foreverness" of caring for Makily.

I would be lying if I said it didn't scare the crap out of me and depress me down to my toe nails.

Let's face it wiping the butt of a 20 year old is not something one looks forward to.....

.......but it's my reality.

The reality that most people never have to or want to think about. It's easier to live in their cookie cutter, normal lives with blinders on (and yes that is me being very bitter that I had my blinders taken away four years ago).

It's the reality that I would be asking someone else to willingly take on.

That's a TERRIBLY hard thing to ask.....even if it's your own family member.

So when Allen and I discussed this I couldnt help but think of this story:

CLICK ME TO READ THE STORY

I can imagine the desperation that must have been going through this man's mind when he did what he did. Was it the right thing to do? Probably not, but I understand why he did it, and my heart breaks for his family.

This story also came to mind:

CLICK HERE TO READ THIS STORY

I actually saw a documentary on that story on MSNBC. They interviewed the mother and I sobbed while listening to her life's story. Her husband had Huntington's and she cared for him until she physically could not anymore. He died a horribly long, painful, slow death. Can you imagine as a mother KNOWING your two sons would meet the same fate? Can you imagine your sons BEGGING you to not make them live that way, that when they became that sick to please help them end it?

The weight of that must have been unbearable.

She looked much older than her years and like the saddest person on the earth.

I am not saying that suicide or assisted suicide is the answer to this type of problem AT ALL. I just want to show how lonely and scary it can be for a parent of a special needs child. I want to show people the side of parenting most people never see.

The quiet reality that many parents face and never talk about.

Allen and I are still undecided of what to put in our will about Makily. As awful as this may sound I actually told Allen that I don't think I could rest in peace knowing Makily was left on this earth without us. There is a part of me that prays the Lord takes her before Allen and I. While it would likely kill me, I would know that she was okay once I was gone. That she would only know love, never be lonely or sad and that she was always taken care of and never abused.

God will somehow send us the answer. We just have to wait and pray.

Life is hard.

"She would have really enjoyed this".

My God-Daughter/Niece Cameron (Trishtwo and Justin's oldest, she's four) had her first recital last night.

I was so excited to go. I love that sort of thing, always have. I knew there may be a few moments that may tug at my heart....but the one that really got me was one I didn't even think of.

Cameron came out dressed like a Princess in her pink costume. It was so adorable, I really just wanted to eat her up.



They did a little dance to a song called "Lullaby" and it was incredibly sweet. I was proud at how well I was holding it together, I mean I was a little choked up but not for the reasons I thought I would be. Seeing Trishtwo GLOW with tears in her eyes watching Cameron dance was so touching. Makily was peacefully sleeping on my lap......I did wish she could have been up there with Cameron but I was handling it well.




They finished their dance and Trishtwo and I wiped our faces and said "OMG that was so sweet".

It was a total girl moment.

Makily woke up from the applause and I sat her up on my lap.

The next dance started it was ballet also. The girls were a little older.

Makily LOVED IT.

She was kicking her feet, smiling, giggling and squeaking her shoes like a mad woman. I thought maybe it was just the song she liked and that the dancing wasn't really what had her so excited.



She continued to intently watch the dancers on stage. She wanted to make sure everyone knew how much fun she was having.....she would smack Trishtwo to get her to look at her and then grin like a maniac.

When the third act started and Makily continued with her squealing, grinning and laughing I realized it wasn't just the music, she was REALLY enjoying the dancing.

I felt that familiar feeling in my heart.

The feeling of a four year old wound, that will never heal, breaking open again.

I buried my face in Makily's hair and tried to hide the fact that I was bawling.

I quickly realized that there wasn't much hiding it.

I looked over at Trishtwo and in a choked voice said:

"Ya know, she would have really enjoyed this".

Trishtwo threw her arm around Makily and I and she cried with me.

The more excited Makily got the harder I cried. I finally got it together by the fourth (okay fifth) dance and was able to really enjoy the rest.

Near the end I noticed Allen watching Makily, then I saw his face drop in the same way mine had earlier. I knew immediately he was thinking the same thing and it broke my heart.

I never even thought about Makily watching the dancers in delight. I never thought she would have cared one way or the other. Seeing her so BLATANTLY loving it broke my heart for her.

What I wouldn't do to see my sweet girl in a pink tutu on stage.

*sigh*

GOD, THIS IS SO HARD.


Luckily the second half of the recital was tear free. Makily did have to include her input one way or the other. There was a group of older girls that did a "modern dance" that freaked me out a little. It was a little too "tribal/voodoo" for my taste. The last 30 seconds or so of the dance was supposed to be very dramatic. It was one lone dancer on the stage, the back ground was BLOOD RED and the music had ended, it was DEAD silent. This girl is dancing (to no music) very intensely when all the sudden Makily kicks her feet together and squeaks her squeaky shoes.

It was SO LOUD it was all I could do not to bust out laughing.

I love it.


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

I cut Makily's hair for the first time Friday. It's needed it for a long time but she hates anyone messing with her hair I didn't have the guts to take her to have it done. I just cut off an inch or two and it's much easier to manage and not as tangly. I would have tried a smidge more but she kept shaking her head no and I was afraid I may ruin it if I pushed it much more.

I saved it.



Makes me feel special that I was the first person to ever cut her hair.

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

Little J is doing well. Rolling over, eating baby foods, it's all good! Still lots of uncertainty where he is concerned but there isn't much we can do about that right now. It's definitely a wait and see game, God is REALLY trying to teach me patience. I am finally getting it I guess but wow it's so hard.

Makily and J sitting together....their feet are so close in size it's weird. Tiny feet is really common in ES kids.
Makily is on the right, J is on the left.


Here's a video of Makily at the recital. Sorry the quality isn't that great. It was dark in the theatre and so this is the best we could get. She was happy and "dancing" along through the whole thing.

Make an on-line slide show at www.OneTrueMedia.com

This video is of Makily and J together. He really likes her and is always trying to get to her. Makily let's him play with her bibs and her toys.

Make video montages at www.OneTrueMedia.com

Do you ever notice that when you go on vacation....

....sometimes you come back more tired than you did before you went!?

We took the kids to MGM Studios over the weekend and stayed in a hotel in Orlando with the Teals. As soon as we got to MGM it started POURING rain. I was not surprised since this is our luck. We waited it out a bit and luckily it cleared up enough for us to get over to "The Little Mermaid" show that Makily LOVES. Trishtwo held her for the show and I watched Makily more than I watched the show. I can't tell you how happy it makes me to see her going crazy happy like that. It makes me cry every time. I am a huge sap (and it does not help that CD one was Monday by the way that's code stolen from Michelle for all the ladies). Then we went to "Playhouse Disney". Makily really liked that. Daddy stood her up and helped her some and she watched the majority of the show like that. I was so proud of her. Baby J could have cared less though and was more interested in eating than anything else!

Makily watching Playhouse Disney and TOTALLY ignoring me in the background feeding J.


Makily again watching playhouse Disney (check her hair...Daddy did it :-)


Sunday we spent most of the day at the pool and I have the MASSIVE sunburn on my back to show for it. It is sore and itchy and I am way old enough to know better. I am pretty sure it was the first time Baby J had gone swimming and he really had a good time. He did not like to get out of the floaty though, the water was too cold.

Baby J in the stroller by the pool waiting to go for a dip


Makily loved the water as always. I spent a lot of time floating around with her singing our song (You are my sunshine). She laughed and giggled and made sweet Makily noises. There are moments I have with her that the whole world disappears and it's just me and Makily, I had many of those in the pool on Sunday. :-)

She wore her floppy sun hat and so the sun didn't seem to bother her much. I got a little choked up wondering how much longer I will be able to float around with her like that. She is getting so big. She's 32+ lbs, and while that does not sound too terribly heavy it is when you are carrying a hypotonic child that gives you minimal help. It makes me sad that I can't just pick her up and go anymore. I find myself sweating after a few minutes of carrying her. I know this will only get worse and that really breaks my heart.

GOD PLEASE LET HER LEARN TO WALK.

Both kids got sleepy after swimming for a while and took a little nap




Sunday night we went to Old Town. It was fun. We took Baby J on the carousel and he LOVED IT. I let him ride a horse and I held onto him. He giggled most of the time. I think Makily was tired though because she acted like she would have rather been sleeping.

I have to say that Allen and Baby J have really bonded. I was worried at first that Allen was having second thoughts that first week he was here. He was stand offish and I know it was because he is/was afraid. Now they are like two peas in a pod and they really love each other. It gives me a lump in my throat. Allen carries him around in the sling without a second thought.

I love this picture.


I also go back and forth and back and forth on my opinion on whether or not we will end up with Baby J. One day I will be totally confident and then the next day I find myself saying "what if this or what if that". I am really pushing myself to be realistic and accept that he can be taken away from us. He has been with us almost a month now and he has totally blended into our family. A stranger came up to me in the store the other day and told me how adorable J is and that he has my eyes. I just smiled and said thank you.

I found this poem the other day and the words rang so true for me. Although I do not know how dedicated J's bio mom is to getting him back I do know that deep down she loves him and this touched me deeply.

This is exactly how I feel.

He's Not Mine


I have to remember~~
When he's laying there peacefully asleep next to me,
He's not mine-

She loves him too
When he smiles that smile that makes me fall in love with him more,
He's not mine-

She loves him too

When he gazes at me with those beautiful blue eyes,
He's not mine-
She loves him too

When I hold him tightly in my arms,
He's not mine-
She loves him too

When he lays his weary head on my breast,
He's not mine-
She loves him too

When I whisper "I love you"
He's not mine-
She loves him too

For the moment I'm the lucky one he's with… but, he's not mine.

I know one day soon he'll leave me and go back to her,
and I can only hope that he'll think of me ~~

I know I'll be thinking of him~

No matter how much I love him; no matter
how much I care it won't change the fact ~

He's not mine…

He has a mother who loves him, she loves him enough to try to work her problems out~
She loves him enough to try to get her life straight so it's a safe place for him to be~
And me, I love him enough to take care of him while she's doing that~~ but then I have to love him enough to remember

He's not mine…

I have to love him enough to teach him the things he needs to know at this stage in his life, then let him go…

I have to love him enough to pray each night that he's safe and that I will have made some positive impact on his little life…

I have to love him enough to remember that no matter how much I love and adore him…

He's not mine…

Author Unknown



**Please continue to pray for my neice Delaney. Her blood work today was low again and we are now just awaiting an appointment for her to have a bone marrow biopsy. You can follow what is going on with her at my sister's blog. The link is in my link list to the right.**

Our Bee.

As a birthday gift Jennifer sent Makily a really cute outfit she made.

It has special meaning.

Jennifer's son Jackson has Emanuel Syndrome and just recently turned one.



(click here to see her blog)

The first video Jennifer saw of Makily was this one:



Jennifer and I have spoken on several occasions and she has told me that this video gave her so much hope in the beginning when things were so sad and uncertain. There is such a cloud of darkness that looms over you when your child is first diagnosed with a severe medical and developmental disorder. I remember feeling like I was thrown into another strange reality and how incredibly desperate I was to find someone else that shared my same reality. I remember many a night I would type out LONG, depressing emails to Stephanie (Maia's Mommy). At the time it felt like she was the only person on the planet that had felt/was feeling the same way I did. I am so thankful for all the other Emanuel Syndrome families that have helped me through the last four years.

Jennifer has also told me that watching Makily and reading my blog has helped her so much. What she doesn't realize is that her reading my blog and being comforted by my child's determination HELPS ME IN WAYS I COULD NEVER DESCRIBE. Knowing that because of Makily there are people that read this blog and feel some sort of comfort in knowing that I TOO share their reality. That life is DAMN HARD but even when it feels like the world has crumbled around you and no matter how DARK and long the tunnel seems, that there is a light. Life goes on and it's best to try and focus on the positive rather than to dwell on the negative. Knowing that our struggles are helping other people encourages me in ways I will never be able to express.

Thanks Again Jennifer. Makily looks adorable in her outfit and she wore it proudly.

Seriously how cute is this?



Modeling.....such work!


Cutie Patootie

This one cracks me up!



Full Version of "Animal School" Video. This is a good one for EVERYONE to see, especially teachers. This is why Makily is our "Little Bee".

***By the way I fully realize I owe you guys a birthday party video and some other updates but this week has been killer and it's only Tuesday night. I think I am coming down with a cold too as all my joints are KILLING me and I am nasally. I am 30 and today I feel about 55. Hopefully I will get it together by the end of the week***

Serenity.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

After yesterday's "excitement" I received SO MANY emails and comments of support. My blog got 400+ hits and so I have decided that this person's evilness turned into something good. Thanks to her that many more people know about Emanuel Syndrome and what it's like to have a child with a disability. I can't count how many people came to my blog yesterday and then went and read Makily's birth story and diagnosis day. Due to this woman's hatefulness Makily has educated even more people in what true unconditional love is. She has yet again shown people not to sweat the small stuff.

I have also realized that some people can't be changed. The more people rebutted this woman the more she continued to say mean things. She is old and set in her ways. So I thought the Serenity prayer was rather fitting for today's entry. I can't change this lady, I know it, I accept it and I will move on.

I admit that that my heart fluttered with each comment of support and love for my child. Some of them were not very nice to "the woman" and while I may eventually remove the nastier ones, I would be lying if I said they didn't make me smile....just a little. It reminded me of when I was a kid my and sister Deborah would not let ANYONE pick on me. I was in awe of how many "big brothers and sisters" Makily has all over the world....that have never met her personally but that she has touched just the same. I am so grateful.

I am uplifted by all of you.

Thank you for loving my baby like she was your own.

So to the person that made all the ugly comments on my FOUR YEAR OLD'S video (I won't write her name on this entry because she is not worth it) THANK YOU for helping to spread awareness of Emanuel Syndrome. Now even more people know about it and are learning what it is to love unconditionally. They are learning that just because you can't walk or talk does not mean you can't change THOUSANDS of hearts and lives. That a person's value has nothing to do with their intellect but everything to do with the mark they leave on this earth.

I will leave you all with this. It is a statement made by a dear friend of mine named Marnie. I have never met her in person, but I have known her since Allen and I began our struggle to concieve Makily. We have spoken on the phone and she is as funny and sweet as she is online. She has supported us and uplifted us during times when I didnt think I could even get out of the bed in the morning. I sat and read this today with tears streaming down my face.

Thank You Marnie, I love you honey.

I was thinking about Trish's you tube last night

And It had me in tears thinking about how your life can change in One single moment. How that woman was so hateful she could not
see past the hurt she wrote on her computer keys. And How it would actually Be read by the mother of that Child... What would her words do the Mother who loved that child? Sometimes we never think 2 seconds of the words we say to some people.

The more I thought about this the more it Got me Thinking Of that Question.. The One you don't want to think about, Trish. I just have to let you know that is a question ANY ONE OF US COULD FACE ANY MOMENT. We could walk out our door today and with one single accident one of our children, Our husbands Or us could be the one that would be forever unable to care for ourselves. What would happen then? We all know. We would pick up the pieces and do the best we could. We would love like we have always loved.. cared like we have always cared. It makes NO DIFFERENCE if we are born with a Disability or it comes to us in Life.
Makily was made in the likeness of God, and he Made her just the way he in visioned her to be.. to Become. He knew that through her perfect blue eyes she would touch so many people around her. Those eyes will NEVER change. The bounce in her hair, the warmth of her smile.. You will look at her at 12 and still see the same love you SEE RIGHT now. You will look at her at 18 and be amazed how much love this single child had brought to your life. The same as every other mother here will.
God knew the moment you were born, Trish, that You would have a child that would NEED YOU beyond time or measure. God knew YOU could handle such a responsibility. No greater compliment is that.. Nothing.
I just thought instead of reading something so negative , like yesterday, one should read something of love and acceptance.

Makily touches people everyday. Your love and devotion to her helps ME be a better mother. I love you.

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

Makily I love you with every ounce of my soul.
You are amazing. Your value is immeasurable.

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

*Sidenote: Makily and I are headed to Orlando tonight for a sleep study with C-PAP trial. Please pray that the night goes smoothly and that we both get at least a little sleep.*

Clowns Of God.

Saw this "poem".

Loved it, typed it up pretty and had to post it here.

Not sure about the title but it's beautiful just the same.

ENJOY!

Four years ago today.....

Five weeks old.


Makily Ashtyn Caldwell
April 1, 2004 8:07 pm
5 pounds 10 ounces 19 inches long.


.........I laid in a hospital bed trying to have you.

Four years ago today I was so anxious and excited about the change that was about to happen in my life. My little girl, how beautiful she would be. I just knew you would have a head full of black hair. You would be just like me. A lifetime of dreams I had planned for you my daughter. Tutu's, curlers, dollies and ballet slippers. How much fun this was going to be.

Four years ago today your room was freshly painted. Fit for a Princess we had planned it so meticulously. Brand new bottles waited for you, enough clothes and toys for THREE little girls, but no, it was all for you.

As the pains grew closer my anxiety built. You were almost here and I could not wait to see your beautiful face. The room was filled with joyful, anxious tears. So many had waited and longed for your presence.

Then all at once you were finally here. The room became silent, it was deafening. I strained to hear that glorious cry. The one I had dreamed of for all of these years. The cry was not right, you sounded so small. The words "cleft palate and skin tag" echoed through my brain as you were whisked away from me. Nine months of being as one, now you were taken all in an instant, I felt so alone.

The next several months were filled with such grief. You experienced more pain in your first year than I have my entire life. The guilt of that weighed so heavy on my soul. How could I do this? It's not what I had planned.

Time carried on and you grew so strong. You struggled and struggled but you wouldn't give up . In awe of your strength, I started to see. You were more precious than any "dream baby" could be.

My heart broke for the "dream baby" that was not in God's plan. As I let her go I embraced all that YOU ARE and all that you WILL BE. I am grateful for all the hearts you have touched and lives you have changed. I am stronger, better and more compassionate, all because of you. Your joy is my joy, pure innocence and perfection you are.

I took back all those bottles, I replaced them with tubes. The tutu and slippers have left a sore spot. Though you dance in my dreams and always in my heart.

I love you forever and ever Makily. You have made me who I am today. I have learned so much from you in the past four years and I can only pray that I can give you all you have given me. I am so BLESSED to be your mother.

**Read post on 3-31 for update from Makily's doctor's appointment and video**

On the mend and BIG REVEAL.

Makily coughed all night but her temp is 99.6 THAT'S RIGHT 99.6! I am so thrilled. She is acting like herself and smiling. Right now she is watching scooby Doo in the highchair playing with her toys happily. She actually giggled several times today!

Dr. Pierre called to check on her and she was pleased that her temps are finally stabilizing. Her urine culture came back and it was fine other than some "colonies of normal urine contaminant" so I am convinced this was just a HORRENDOUS viral bug that we all caught. Poor Doodles has a hard time recovering from stuff like this though. She still looks pretty puny but she is maintaining good temps (we are still giving meds though) and that is what is most important. She is coughing a bit and still has a pretty snotty nose though. I am feeling a little better too.

So I couldn't wait until Monday I am going to post Makily's new "montage" I did. I love it! Hope you enjoy it as much as I did making it.

Make photo slide shows at www.OneTrueMedia.com

All About Makily!

Things Makily likes (in no particular order):

TV, SpongeBob Squarepants, Nemo, Swings, being talked to, being sung to, cuddling, jumping in her Jumperoo (although we have to "adapt" it since she is such a big girl now), dancing (you hold her and dance), riding in her remote car, playing with her toys, all the Disney parks, swimming, watching TV upside down and looking at faces upside down (this makes her giggle like crazy), MUSIC, bath time, people with any kind of strange hairstyle, school, Mrs. Leslie and Mrs. Byrd, looking at herself in the mirror, being told how wonderful and beautiful she is, her sleeping bag, her obnoxious turtle and her "symphony" V-tech toy from Laura, her Daddy, watching other kids be naughty, Cops and Police chase shows (she always laughs when they crash), Nanny and Granny....and well okay Mommy :-)

Things Makily HATES:

Hats, things on her face, eating by mouth, laying on her tummy, TV commercials (she screams now when they come on), anything poked in her ears, blankets, shoes, having her teeth brushed, BRUSHING HER HAIR (I get the wrath of Hell every day for that one), water in her face, getting sleepy (she fights it), being put in her car seat, the sun in her eyes, being hot, EEG's and sleep studies.

Like I mentioned above Makily loves music, being sung to and dancing so much. I had her in the den the other night while I was blogging and she was playing. I put some music on and sang and danced like an idiot for her. She loved every minute of it so I decided I had to catch it on video. Makily LOVES my singing and dancing but it has to be INSANE and over the top so Sorry guys you only get to see my baby giggling and not my acting like an idiot for her.

Photo and video editing at www.OneTrueMedia.com

Side note: The foster thing is taking FOREVER. We aren't getting anywhere fast. Our home study was reviewed by the agency and yet again they have more questions. We have answered HUNDREDS AND HUNDREDS of questions you wouldn't believe and I can't imagine what else they would possibly need to know about us. I have not received them yet but I know they are coming via email next week. We are very frustrated especially when they keep telling how bad they need homes like ours. They are desperate for newborn stay at home foster moms. Allen and I have decided to stop holding our breath and sitting by the phone waiting for it to happen. We are going to live our lives and when we get a call for our license then that's great. Will keep you updated.

It's that time of year again.

March.......

which is the month before April...

Makily's birthday is April 1.

She will be FOUR!

Most parents rejoice at the upcoming birthday of their child.

Usually I struggle with it.

I remember the JOY I felt all through March of 2004. How elated I was, my baby was finally coming.

Today my grandmother showed me something that I gave her on the day we told her we were pregnant. It was a small gift bag with a pacifier in it. She has kept it and even put a sticker with the date and time I came to tell her.

I couldn't do anything but look at it and cry.

It reminds me of what a happy yet OBLIVIOUS person I used to be.

I am doing another montage for Makily's birthday this year. I pulled out ALL the pictures (we didn't go digital until she was four months), even the bad ones. I sat on the floor in her room and cried.

She looks so bad in some of them.

I will never forget.

ANGER, SADNESS, CONFUSION, SELF DOUBT, EMBARRASSMENT, GUILT, SHAME, GRIEF, HATE, JEALOUSY, FRUSTRATION, LONELINESS, SORROW.

If you bundle all those emotions into one word, that was me back then.

While I am happier than I have ever been in my life, it seems like EVERY March I find myself re-living it all in my head.

As much as I want to be over it and move on, I realize most likely that will never happen.....

....and that's okay.

I wonder what might have been.

Then I remember this IS the way my life is supposed to be and I am a BETTER person because of ALL that we have watched Makily go through. She has changed more people and touched more lives in four years than I have in 30.....and she can't even talk.

I can't make myself NOT feel this way, so I will be sad for a few weeks, and then I will pull my head out of my behind and move on. I did it last year and each birthday before that.

I have also been following Baby Reese, she is four months old. She has Emanuel Syndrome and has yet to leave the NICU. Some of her pictures she reminds me so much of Makily. She had the SAME skin tag on the same cheek as Makily. I look at the pictures of her, I read their blog and it just takes me right back to that place of such fear and uncertainty. I remember telling myself "If we can just get Makily through this....we'll be okay." Then something else would happen and I found myself again wondering when we could relax. Since then I often lay Makily's head on my shoulder and breathe in as hard as I can and try to memorize her smell. When I hold her while she is sleeping I just stare at her and I try to memorize every feature of her face, the way her hair feels when I rub her head, the way she curls up in my arms and makes sleepy baby noises in her sleep.

When Makily had her seizure back in 2006 , I really thought we were going to loose her. I remember standing in the ER watching her body slowly twitching. I could see the doctors struggling to intubate her. I could hear her coughing and gasping for breath and thinking "I am not ready yet". I haven't held her enough, I haven't smelled her baby smell enough times or heard her sweet voice or laugh enough.

The truth of the matter is that you NEVER know what to expect with Emanuel Syndrome children. I know of some ES kids that were doing exceptionally well and then the died out of no where.

They are unpredictable....but I guess life itself is unpredicatable.

Makily's seizure scarred me and when she is at school, if the nurse calls me, I hold my breath until she says "she's okay". I honestly don't know if her body could handle another seizure like that and in the back of my mind, the thought of something happening is always there.

I know I will never hear her laugh enough, stroke her head enough or smell her sweet Makily smell enough to ever be okay with loosing her.

I can never totally breathe a sigh of relief with her.

It's an uncertainty that I will carry with me forever.....

......and that is incredibly hard.

Please pray for Baby Reesie and her family as they live through some
of the most difficult times of their lives.

My Baby's Joy

Sorry I have been a blog slacker this week. I promise next week will be better.

***Please notice the new link under "friends and favorites" for Baby Reesie. She is three months old and recently diagnosed with Emanuel Syndrome. She is still in the NICU, please visit her site and offer her prayers and lots of love.

I don't have much to say tonight, I am in a rush. I made another new Makily video. I hope you enjoy it as much as I do.

Make an on-line slide show at www.OneTrueMedia.com

Baby's Got Wheels!

***FYI: updated Makily's CB page today with medical stuff. check it out, link is in the "link section to the right"****

Allen and I have LONGED to get Makily one of those cool power wheel cars that she can drive. She isnt able to actually "drive" anything at this point she we just never bought her one.

Another special needs mom had said they found a power wheels with a remote control for the parent. It was a big pricey for us so we just didnt really look into it.

I went looking on ebay and found one for $150 WITH SHIPPING!

YES WITH SHIPPING!

Here is a link to the guy that we bought it from.

REMOTE CONTROLLED RIDE IN CARS FOR TODDLERS

It's a small car but it is perfect for her and she loves it. I would recommend this for ANYONE with a toddler or a special needs toddler that is able to sit up independently.

Here's a video of Makily in her new Ferrari.

Make an on-line slide show at www.OneTrueMedia.com

Things not to say to a special needs parent.

I have found that since having Makily some people have said some pretty dumb things to me. I find myself calling my mom to vent about it when she gently will say "Patricia, they don't live the life we live and they don't have Makily, is that something you would have said before you had Makily?" Most of the time my answer is "no I just wouldn't have said anything at all". I don't know which is worse...inquiring the wrong way or running away like your hair is on fire.


Things NOT to say to a special needs parent and child


*NEVER, EVER, EVER use the word "retard", no matter what. Whether you are using it as medical term or to describe something you think is stupid, it hurts just the same. Most likely the parent won't correct you but know that inside they are crying. If they aren't crying inside most likely they are in visioning themselves slapping you silly. :-)

*Do not say "What is wrong with him/her?" That will put the parent on the defensive and they will not want to continue the conversation. Nothing is "wrong" with Makily, God just made her special.

*Don't say "Oh he/she will grow up and be "normal" right?" If the child has a condition that is not something that they will grow out of, this is HARD for a parent to explain and even harder for them to be reminded of it.

*Don't stare and if you accidentally find yourself staring..and the parent/child catches you smile WARMLY AND SINCERELY. Do not give the "poor baby...poor you" look.

*If you find your child asking questions loudly about the special needs child in the room (say the doctors office or at school) don't just make up an answer. Chances are the SN child's parent has heard your child's questions. It is best to come up and VERY KINDLY say "My son Jon is interested in your child, can you tell us about him". Let the SN parent lead the conversation. They have probably done it before. Make sure to reinforce that it's okay to be different and that this child is a special one.

*If you are approaching a parent just because you are nosy...don't bother.

*If the parent gives short, sweet and quick answers...take a hint and end the conversation. Sometimes it's too much to go into the child's problems and likely they have done it more times than they can count. Some days, you just want to be "normal".

*Try not to say things in front of the child you wouldn't say in front of your own child. You would be surprised how much special needs kids understand.

*Don't start asking "can he walk, can he talk, can he crawl, is he potty trained?" It's just uncomfortable for the parent if the child is not doing those things and yet another reminder.


Good ways to approach a SN child and their parent


*Talk to the child directly. If they can't talk the parent will answer you. Treat the child like you would any child their age.

*Compliment them on their eyes, hair, smile, outfit ANYTHING. That always starts things off right.

*If you are inquiring because there is someone close to you that has a disability somewhat like that child's, make sure to mention that. It puts the parent at ease and fast. Usually they will be much more forthcoming with information too.

*If you MUST ask "what is wrong" with the child say "So does he/she have a diagnosis"? I was asked this way before and for some reason it was MUCH nicer than "what's wrong with her". Do not start the conversation off with this statement though, use the compliments first. :-)

Humbled.

Makily's class had a field trip on Friday.

I wasn't sure exactly what was going to happen or what it was other than a Christmas Party in "The Villages" and it was ONLY for special needs children (for those of you unfamiliar with the Villages it is a large retirement community right outside Ocala). We arrived at a golf course. When we got off the bus there were several ladies dressed up in cheerleader costumes, pom poms and all cheering for the kids. Once we got past them there were clowns waiting with HUGE smiles and stickers to hand out. The kids were LOVING it.

I got a lump in my throat.

We were led to a large tent, and they had dance and Christmas music playing. Many volunteers were there to help and play with the children. I realized then how big an event this was when I was told it was for all the special needs kids in Marion County. There were kids as young as three all the way to 18. I got Makily out of her kidkart and began dancing around with her. She giggled like a little maniac and patted me like a crazy (patting is Makily's way of saying WOW ISN'T THIS FUN!). In the midst of our dancing I stopped and looked around for a moment. All I could see were happy children. Some in walkers or wheelchairs, some with braces on their legs all SMILING ear to ear, singing, laughing, dancing and having a blast. Volunteers were holding kids, dancing with others in wheelchairs. Treating them like they should be treated EVERY day of their lives, like the hero's that they are. I was overwhelmed with joy. What a beautiful moment, what an awesome thing to do.

I had to bite my lip to keep from crying.

Then it hit me.

How much I have changed since Makily came into my world.

Truth be told, five years ago...I would have run from this situation like my hair was on fire. I was incredibly MORTIFIED around the handicapped. I just didn't know how to act and was uncomfortable...and now here I stood surrounded by hundreds of handicapped people and felt incredibly touched and humbled at the same time. Touched because someone cared enough to throw this HUGE party for these kids. More than just ONE someone....SEVERAL someones had come together to put this on for these EXCEPTIONAL kids.

I was humbled for many reasons. One of which is that had Makily not come into my life, I doubt I would have the understanding I do now for these children. I wouldn't look at life or the world in the way I do now. Five years ago I would have felt sorry for those kids and walked away as fast as I could to avoid MYSELF feeling awkward. What a selfish, ignorant person I was. I was also humbled because there were many children there that were SO much worse off than Makily is (there were others that were also much more physically able than she is).

There is ALWAYS someone who has it worse than you do. ALWAYS. What's important is what you do with the life God gives you. How you handle the obstacles you are faced with.

THANK YOU LORD FOR GIVING ME THIS CHILD.

Once we were finished dancing we took the kids to eat. They provided Pizza, soda and ice cream for EVERYONE to eat. There were clowns walking around making balloon animals and hats. Makily was ENTHRALLED with one of the clowns and she stared at NOTHING but him while he made her a balloon doggy. They had face painting, Makily is not too keen on letting anyone touch her face so we didn't get to do that.

Once we were done eating it was off for a golf cart ride.

Several people had volunteered to ride the kids around in their golf carts. I am not talking your regular average golf cart either people. I am talking "Pimp My Ride" golf carts...seriously the one we took Makily on was PURPLE and looked like a Cadillac! It was touching to see 60 year old men helping to lift heavy children out of wheelchairs so they could go for a ride in the golf carts and feel the wind in their faces (which by the way Makily LOOOOVES.

It's the little things in life. It REALLY is.

They had a backdrop set up and took pics of the kids with Santa and then gave them the Polaroid to remember their day. They they were sent off with gift bags filled with cookies, fruit and crayons.

I wish I could figure out who exactly put this on and what organization paid for it. We paid NOTHING for this trip. Not a dime. The entire thing was sponsored by an organization I think is called "Special Kids, Inc". I am having a hard time finding out much about them except they are a non-profit in Lady Lake. I told Allen I was so surprised that we had not heard about this in the paper or on the news, they do this EVERY year, how can they not have been recognized for it? Allen said "they probably don't want recognition, they just do it because it's a nice thing to do".

I had to bite my lip again.

Lost in a life jacket.

We have been taking Makily to Wild Waters almost every weekend the last month or so. SHE LOVES IT. The child is a water baby if I ever saw one.

A few weekends ago out of no where they were making it mandatory for ALL kids under a certain height to wear a life vest whether they were with their parents or not. When they told us this rule I was a little annoyed. Makily only has so much strength as it is and putting a life jacket on her was going to make it even more awkward for her. I did it anyway hoping she would get used to it. Well after about 10 minutes in their pool area I realized, she wasn't going for it. It also didn't help that they had no infant sized vests available and we had her in a size that really was too big for her.

So we got out of that pool and went over to the wave pool. It has a zero entry area and we like to sit at the "shoreline" of it with her. Well we get there and they are enforcing the life jacket rule there too.

I almost wanted to cry.

Playing in the water and swimming is one of the very few things Makily ENJOYS doing. She laughs and giggles and is really at peace in the water. Due to all her medical problems and hypotonia she can't just play like a typical child, her body just doesn't work that way. All you special needs parents out there know that when you find something that your kid likes and responds well to, it's AMAZING! I found myself getting sad that we had finally found something that made her sooo happy and now because of their new rule Makily couldn't enjoy herself. I wanted to leave right then and there because I felt like the entire day was ruined. Then I thought "heck no, they are going to make an exception for this kid, SHE DESERVES IT!"

I went up to the lifeguard (who was all of like 16) and said "My child cannot walk, crawl or get away from me, she hates the life jacket and I won't put it back on her, if I promise to sit at the edge here can I please take her in". She told me that I couldn't. It was their new policy. I asked her what I should do then and explained that Makily WAS disabled and she could barely move in the jackets they provided us. She reiterated that SHE HAD TO WEAR it BUT that she could get the manager for me to speak to.

I could feel my inner voice slowly whispering in my ear. The voice that comes from the darkest most negative parts of my brain. It's that voice that speaks to me when something like this is happening, trying to convince me to be sad. I fight these thoughts more times than I like to admit. This time the voice was saying:

"If Makily wasn't disabled you wouldn't have to be fighting about this, she would be running and splashing around right now, why do you even try?"

I quickly refused to listen to this little voice in my head and was determined to have a good day and be positive.

The manager came and I explained our story once again for him. I used lots of BIG MEDICAL WORDS so as to make myself sound smarter than I really am in the hopes that this would somehow intimidate him. Ha Ha. I told him Makily couldn't walk or crawl and had hypotonia which made it almost impossible for her to move with this huge jacket on that went all the way past her ears. Seriously all you could see was her big cheeks all squished up and two little piggy tails sticking out the top of this thing. He was very nice and explained that A DIFFERENT water park in CA had 9 drownings this season and so they had initiated this rule in Ocala (don't ask me why). I told him I understood but it didn't work for us. He agreed and said that since our case was "extreme" he would let us take her in without it, as long as I held onto the life jacket.

I was elated!

So Makily, Allen and I sat at the edge of the water playing "splishy splash". She laughed and giggled, I kept the toddler life jacket hooked around my arm.

It's amazing the things I will do and complain about now for this kid.

**Disclaimer: I do not have schizophrenia and I don't actually hear voices.**

Okay God, your listening...I get it.

***WARNING THIS BLOG OOOOOZES OF SAPPINESS, READ AT YOUR OWN RISK!***


So my last blog was a bit depressing, the day after I had ANOTHER moment...but this is a happy one.

One thing I have mourned (I promise this gets happy) since Makily was diagnosed was the fact that she will not be the little ballerina I had dreamed of. I had planned that at age two, she would start ballet...that never happened for obvious reasons. I was a dancer in middle and high school. I even danced on the square in Ocala the year Allen and I got married with a Hip Hop dance group I was in with some friends (yes this is the same group that I had my most embarasing moment with). So I just assumed my dancing genes would be passed on to Makily.
I have been a member of a fertility/chat board for YEARS. The ladies there have walked me through TTC, fertility testing, pregnancy, labor, having Makily and everything that happened since then. They have cried with me, cheered with me and laughed with me through it all. So months ago I posted there about how I was in the store looking at bibs for Makily. I saw one with a pair of ballet slippers embroidered on it and it said "twinkle toes". I stared at it for a while, got teary eyed and left the store. I couldnt bring myself to buy it. The ladies from the board all sympathized and of course had such encouraging things to say. They all urged me to dance with Makily in the living room, that she would love it and that maybe one day I would see her dancing around......I have danced with her before and she never seemed to care one way or the other.

Well the morning after I posted my last blog she was in her jumperoo, I had an 80's cd playing and she was in a particularly good mood, bouncing and giggly. I took her out and sat on the couch with her on my lap making funny faces and moving her arms and legs to the music while singing. She thought this was OH SO FUN. What made it even funnier that neither her nor I had our baths that morning yet so her hair looked like a bomb went off in it...so did mine! The next song that happened to come on was "Time after time" by Cindy Lauper. I LOVED her as a kid and even dressed up as her for Halloween two years in a row (stop laughing). Anyway I got up and started slow dancing with Makily. She snuggled, laughed and gigged the whole time. She smiled the biggest grins I think I have ever seen and I just kept singing and slow dancing with her, with tears streaming down my face.

So what is God trying to tell me this time!?

YES there are things that I mourn and that Makily and I will miss out on, there are ALSO moments that I have with her when all the world disappears and it's just me and my baby, dancing in the living room. Would I have cherished that moment with Makily like I did had she not been "special"? No, at least not like I savored every snuggle and laugh that morning. I waited so long for her to enjoy dancing with me she finally did and it was wonderful.

Because I am incredibly vain (least I am honest about it) these are the only pictures I am posting from our "dance". I literally had just rolled out of the bed so I was looking scary....Makily's hair looked much like "The Frightened Family".

enjoy!

And so a new part of our journey begins....

Allen and I have struggled for the last 2 years on whether or not to have more children. When Makily was 6 weeks old we met with the genetics counselor. She went over statistics and options with us. Since I am a carrier I have a 50/50 chance of getting pregnant with another Emanuel Syndrome (ES) baby. Horrible I know. What's surprising is that they say I only have a 6-10% chance of carrying the baby to term. Basically that means that if I were to get pregnant with another ES....I have about a 90% chance of miscarriage or stillbirth. I know some would see the 6-10% chance of having another live born sick baby and say "those odds aren't that bad" but when you already have a child that has a Emanuel Syndrome it becomes more real, yes I realize it's not common BUT IT DOES HAPPEN. I no longer think "oh that will never happen to me". Those days are soooo loooong gone. I remember in the first few weeks after Makily was diagnosed I kept saying: "this is something that happens to other people....Not me". I have learned over the past 2 years that ANYTHING CAN HAPPEN TO ANYONE. No one is immune to problems, hardships and tragedy...no matter how low a statistic is, or how rare something is, bad things can happen whether you want them to or not. I know that sounds so negative and I'm really not a negative person. I guess I just have this new outlook that anything can happen, at anytime, to anyone.....good or bad really.

The thought of accidentally getting pregnant makes me nauseas. Since I carry this genetic flaw these are the risks that I would have if we were to try to get pregnant naturally.

*Miscarriage
*Stillbirth (which would send me totally over the edge having to deliver a dead baby)
*An Emanuel Syndrome child (I adore Makily but her life is incredibly unfair. She has suffered more in 2 years than most adults have their whole lives, I would always blame myself for everything that child would go through, I didn't know before Makily and there are bad days when I still blame myself anyway.)
*A child with the same genetic problem as me (meaning this child would be destined to deal with the same issues and be forced to make the same decisions I am struggling with. How fair would that be? I wouldn't wish this on my worst enemy much less my own child)
*A healthy baby (even typing those words is foreign to me. It just seems like something so far out of reach for me sometimes.)

**I am incredibly bitter than I will never be able to naturally conceive a child and rejoice in the moment those two lines appear on that test. It angers me that instead of being excited if I were to get pregnant naturally I would be filled with FEAR and terror. **

I recently brought up a scenario to Allen. It's one that has haunted me since I had Makily. I asked him "Had we found out that Makily had ES while I was pregnant, what do you think we would have done?" This is a hard topic for me because as long as I can remember I have been VERY PRO-LIFE. We discussed it for a while and Allen said he would have wanted to continue the pregnancy. I think my first reaction would have been to terminate, you see when Makily was diagnosed we were given a pretty bleak outlook. I believed she was going to live a horrible life filled with sadness and suffering, so had I been told that when I was pregnant with her, it would have scared me to death. I was a much different person back then. After much thought, conviction and discussion I believe Allen and I would have decided to carry her to term and pray for the best. I would have had a TORTURED and very sad pregnancy. I know that we would not have let them make any interventions with Makily at birth though. We would have set up a birth plan and said to just give her comfort measures, to let us hold her and love her for the time she was here and I know Makily would have slowly slipped away that night. It makes me cry just typing that. I know that Makily would not be here right now had we known............She could not have survived without all the interventions that were made. I would not have had these two years with her.
This is EXACTLY why God did not let us find out.....Makily was meant to be here.

I will admit, there have been times that I have sat next to Makily's bed in ICU crying many tears, wondering "how far is too far". How much is too much to do to her before we say "that's enough, leave her little body alone". That is another part of parenting a medically fragile child that sucks. You make decisions that no parent should ever have to make....then you constantly question yourself and everything decision you have made. I have often said "I am so sick of picking from 2 choices that both suck.....picking which sucks least is awful". Every surgery Makily has had we have always been faced with "it will fix this but may mess this or that up". Who can deal with that?
Before Makily had I heard someone talking about terminating their handicapped baby I would have been LIVID. I would have thought those parents were incredibly selfish and it would have made me nauseated. Now that I have watched Makily struggle, go through surgeries, seizures, g tubes, feeding issues, therapies and illnesses that I understand. I understand a parent wanting to save their child from the pain and suffering that their life would be filled with. I understand a parent that is so afraid for not only the future of that child but the rest of their family. I understand that having a handicapped baby does not only affect the mother and father of that baby but the entire family. When Makily is sick and hurting so is our entire family. When Makily has surgery we all sit on pins and needles praying that she will come out okay. I would never go back and change it because obviously my Makily was meant to be here, but it has been terribly hard for EVERYONE. What holds it all together is looking into Makily's eyes and seeing the innocence and purity that IS Makily. Seeing her smile and laugh makes it easier for me to keep pushing her to eat by mouth and to force her to do therapy. Knowing that despite all her problems my child is happy. She knows she is loved and she is happy and I can't ask for anything more than that.

The fact of the matter is though that Allen and I want another child. I had tried convincing myself that I could go the rest of my life not trying for more kids and not regret it.. Well I know I will always wonder "what if?" God forgive me but there are things I will never get to experience with Makily. That brings an ache to my heart that I cannot even begin to describe. Knowing I will most likely never hear Makily say "Mamma" or "Daddy" brings tears to my eyes. That being said there are things I have learned and experienced with Makily that I never would have had she been a "typical" child. Those lessons are what have made me who I am. I am incredibly grateful that God allowed me to learn those things and be Makily's mommy.

Allen and I have decided that we want to try IVF using donor eggs. We *could* use my eggs but there is more testing involved if we go that route. It would also involve discarding of any embryos that carried the same "genetic flaw" Makily has. I don't judge anyone who does this but for Allen and I it's just something we would feel guilty about. To us that is like saying we want to "discard" of Makily. This process is also not totally perfected and reduces our chances of a successful pregnancy. I figure we should bypass my eggs altogether and then we will have our best shot.
Obviously money is an issue here. I have an appeal in to our insurance company and am awaiting a reply. My argument is that if we have another ES child not only will the insurance company be forced to cover Makily, they would have ANOTHER expensive kid to cover. It would just be cheaper for them to pay for IVF with donor eggs. If our insurance company comes through and decides to pay we do not plan on starting the process until late next year.

Please pray for our family and pray for God to show us the right way.