Its going to get difficult...

Natalie hasn't had a physical therapist in several months. The place she goes for all 3 types of therapy (also including occupational therapy & speech) has been having a hard time finding a physical therapist that is good & will actually stay longer than a week.

Working with special needs kids all day is alot more demanding of a job than you might think...

Since she hasn't been receiving "PT" there its been pretty much up to Mike & I to make sure she keeps going with work and at the very least... she doesn't regress before she can start seeing a professional again. (& by "Mike & I", I mean me, since he works all day) So I take her to the park and try to get her to use her walking toy (which she has completely lost interest in), swing her on the swing for a break and some fun then back to more work taking steps up and down the stairs to the slide.

Often at the park Natalie and I get other children who want to play with her or want to know what shes doing. Its becoming more difficult to explain "her" to children since shes getting older.

I was swinging her on the swing today when a little girl asked Natalie if she wanted to go slide with her (let me just add the slide is up several stairs and across a little chain bridge). I told her she couldn't slide yet & the little girl asked me why. I told her what I usually tell children, "Shes just a baby". She looked me dead in the face and said "No, shes not a baby, shes big like me!" It was so sweet the way she said it, but I admit it broke my heart a little. I told her she was right, Natalie was big, but that Natalie couldn't do all the big girl things that she could do yet. She didn't understand so I tried to explain, but failed. The little girl asked me why I took Natalie to the park if she couldn't do stuff & I didn't know what to say. I just told her because she likes being outside & she likes to swing. The whole conversation kind of caught me off guard really & we ended up leaving sooner than I had originally planned.

I dread this step. This growing up and the stage children get into where they know something is different, but they don't know why or how to handle it. I wish I could just let her play at the park. I know I look like one of "those moms" that's always holding her kid and is afraid to put them down and let them get dirty, but I'm not. I put her down and she goes for the nearest thing and pulls it down on top of her or tried to eat it or hits it with whatever she might be holding... She doesn't know how to climb on the couch yet & she certainly hasn't figured out how to safely get down once we put her there (she just crawls off face first!).


I know what allergies look like or when a rash needs to be medicated, but what her Pediatrician cant tell me is how to raise her.

When/how to potty train a child who cant walk or speak or climb on the potty?

How to discipline a child when your not sure they understand the word "no"?

How can I get my child to not eat dirt even though she clearly knows it tastes awful?

Where is the line between protecting her from herself, and just being overprotective?

How do I explain to other children that shes different, even though she doesn't really look like it?


She is no longer a baby, she is just different. She is perfectly imperfect. My wonderful wonder.

Not having a diagnosis doesn't help because when adults ask me whats going on with her, I have to explain that I don't know. Children with down syndrome typically progress faster than Natalie currently is.

One day at a time.

Whatever steps are next, I know they will be difficult. I also know that they will be rewarding.
I wish I had the innocent, happy spirit my daughter has.

Progress & Acceptance (random)

So, we celebrated Natalie's 2nd birthday 3 months ago (July) & since then she has been doing pretty well. As with everything shes accomplished, its hard and slow-going, but she is one motivated little girl! Its hard to believe that this time last year I spent most of my spare time in tears over her delays and knowing she would forever be "different". I cant imagine myself doing that today... I have the most wonderful gift God could create for me. Everything that she is just makes my heart smile.


I'm not sure what makes rubbing her hand on the wall more funny than peek a boo or tickles, but watching her mind work while she plays, well, I could do that all day.

She has become extremely curious over the last year. Everything is new & everything tastes different... She eats EVERYTHING! dirt on the ground, cardboard from book covers, blocks, toys, hair... literally everything.

She isn't really interested in walking from one place to another. I do think she is aware that she can use her legs to move around, shes just not able to control her body as well as she needs to in order to do that. She will, however, walk from one persons arms to another persons (open) arms if its less than 8 steps or so. Its great! By the last step shes more stumbling than anything but the first few steps seem very intentional and focused. I am so proud of this progress. It took her over a year to learn to sit without falling over and a year and 8 months to learn to crawl. Looking back, we weren't really sure if she would ever be able to walk on her own. Now, I feel like she will not only be able to walk, but she will run! She will skip! She will dance! (she already dances pretty good!!) She will jump & play like a child should be able to.


I'm not really sure that Mike & I will EVER be comfortable with leaving Natalie in a strangers care. I still feel nervous even when shes in the church nursery during services. I feel like I am only giving God 80% because I am constantly thinking "do they know she eats leafs and grass?" "I hope they notice if she falls down" What if the other children don't like her because she doesn't understand the concept of pretend play or how to share things..."


I worry that all the children Natalie plays with will grow up and she will have no one but me & Mike. I have met several people who have children with similar needs, but other than raising children in similar worlds, what is there to start a friendship?


We have a few family members who, it seems, still don't accept Natalie for who she IS. They say they believe she will wake up one day and be right where she is "suppose to be" & one day she will catch up to all the kids her age. I know this is just hopeful speaking and its meant to make us feel good. Sadly, it doesn't. It hurts. I feel like these people love her less because she isn't normal and they hope one day she is so she can be worthy of their love. I am aware that its most likely not that way, but to me, when people say they pray that she is one day normal, it hurts. Yes, I pray she excels & progresses, but I truly feel like God made Natalie just the way she is for a reason. God doesn't make mistakes & my child doesn't need to be normal to receive his love. Thats good enough for me.


I am thankful for the friends we have made along the way that accept & care for Natalie just the way she is... Friends that are raising their children to be tolerant and loving to others, even when they don't understand them.


God is so good!!

An Old Draft/Changing My Mind

I feel like if I were to list my lifes sins, I could fill up many books with this list. I wonder sometimes if I am the only one who feels this way.
These are books I wouldn't let anyone read.
I am ashamed of them and even though most of these sins are my secrets to keep or share, I feel as though I am being looked through on a daily basis. I have so many things to be ashamed of, its actually hard to keep track.... & this also makes me feel shame.

I find comfort in knowing there are worse people out there than me. Its sad, but true. Thoughts like this worry me.
If there weren't worse people would I strive to be better? or would there be no moral limit to the situations I might find myself in....

Why do thoughts like this even enter my mind?
Does God understand my heart & thoughts, even when I don't?
Do having such negative thoughts make me a bad person?
Does being ashamed of having these thoughts make a difference in how God sees me?
What kind of person am I to think things like this?
What type of Christian am I?
Am I even worthy to call myself such a thing?

The questions I have could also fill up many books.

Believe it or not, there was a time when I could look past my problems and find joy & peace in my life through praise.

I miss the person that I was and feel badly that my daughter & husband do not know that old me. I have become something awkward and disappointing.

If I feel this way about myself, how does my Father feel? Does he look down on me with disapproving eyes, or with hope that I might some day be better?

My dad likes to say that sometimes when bad things happen, its Gods way of conditioning our hearts to do his work. I dont feel like, with me, thats the case. It often feels like a punishment that is well deserved and long overdue.


^^^
This was a draft I had started a few months ago....

Shortly after my miscarriage.

I wasn't really sure where I was going with the post, it was just a message I felt like I needed to have saved for myself to read at a later time. Its become so easy to bury those feelings of regret and shame. It is so simple to let Gods face fade into the background of our lives & to allow negative & self righteous thoughts enter our minds.

After lots of prayer and a few words I needed to hear from a 'stranger' about being humble, I decided this morning to open my bible up & see where it takes me.

I am reminded of Luke chapter 15.

These parables that I have always known & could recite even as a child have never held any meaning to me. But, reading them again now, I feel like dust has been brushed away from my hearts door & I can let God back into my life.

I am not sure why or even when I became this awful person. But, I want to change.
Someone told me recently that repenting simply means to change your mind.

Well, I do. I change my mind.

Pregnant. & then... Not.

As most of our friends and family know, Mike & I were completely set on becoming foster parents for our current state, Louisiana. We went to orientation (which only made us that much more SURE), filled out papers, worked out our schedules and prepared to take the in-service training classes over the next 7 weeks.

Feb. 9th-
The first class was great! I even teared up a little. It seemed like, the more we knew about the program, the more we wanted in...

That evening I took a pregnancy test that turned out to be possitive. I guessed that God had other plans for us. A few weeks went by and I saw my OB here in Louisiana, Dr. Leslie Dean. (Shes really straight forward & I highly recomend her!) The ultrasound technician had a hard time getting an ultrasound, but after a few tries they determined the approximate length of my pregnancy was 6 weeks. I, of course, had concerns since we already have a child with physical AND mental abnoralities, but I was reasured that they would do every test possible to make sure I had a healthy baby.

This is the ultrasound we took home.

You can see where she had to point out where the baby was on the screen for us. 

March 8th-
I got up out of bed shortly after Mike got home. He had recently switched to the evening shift at work, so he usually doesnt get home until 11. It was about 10:40 when I got up to use the bathroom. I REALLY had to go! At least, it felt like I did... After several seconds of sitting there without being able to actually pee, I looked down and realized I was bleeding very slightly. I wasnt too worried about it because I had spotted a little before with Natalie in the very beginning. So, I laid back down but, I just started to hurt. People say, when you miscarry, it feels like menstral craps... But, to me, it felt more like I really had to potty & for some reason couldnt go! (you know.. like when your driving and cant find a gas station to stop at...) Well after a few minutes of increasing pain I tried to use the bathroom again but, I was only bleeding more. Thats when I told Mike I was going to the hospital. We loaded up (yes, even Natalie. I was NOT going to ask someone that late to watch her & this end up being nothing...) & headed to Willis Knighton. I was admitted & seen rather quickly. I was still convinced it was nothing, but the nurse wasnt nearly as calm. Which made Mike & I both pretty nervous. After a few tests and several ultrasounds we were told I was having a miscarrage. We left the hospital around 4 in the morning and headed home.

Sadness.
Confusion.


Today-
I think the hardest part has been everyone elses reaction & sadness when we tell them. Its painful. Almost like we are experiancing it all again everytime someone asks how our unborn baby is doing. I know intentions are good, but its just a lose lose situation I guess.


The though has crossed my mind that since we cant find a genetic or neurological reason for Natalies failure to thrive, maybe its... ME. Maybe, my body is incapable of creating healthy children. I try not to worry too much about it but, it does haunt me.

I am lost on what it is God wants for our family. Maybe, for now, we will just focus on the little blessing we already have. Time marches on....

About the Surgery

So, Natalie had her cranial vault reconstruction surgery on January 11th. The Surgery went well & since then Natalie has been healing up nicely. It was about 7 hours from the time they took her back until we got to see her again & for me, that was the worst part.

She was sedated for 24 hours after the surgery & they did a scan of her skull every few hours the first day to make sure that everything was going good still. She had alot of swelling & couldn't open her eyes for a week.

Wednesday Morning

 This is Natalie right before they took her back for the surgery.

She was happy & playful <3

Wednesday afternoon

 This is what we saw the first time we got to see her when she was out.

She was sedated but occasionally would try to flick the breathing tube from her mouth.

She also had a drainage tube connected to a bulb to drain the excess blood from her head due to swelling.

 Wednesday evening.

 They took her breathing tube out on

Thursday around mid day. & they let her slowly wake up on her own.

She was so upset that she couldn't open her eyes & they had to keep her pretty doped up.

This was the hardest day because she didn't understand why she was in pain & couldn't see.

When she would hear our voices she would shake her head frantically & reach out her hands.

Tears.

 Friday.

This was a good day :)

She got moved out of ICU & into a regular room.

Mike and I could both spend the night

(only 1 allowed at a time in ICU)

& we could take her out of the bed for the first time.

 Saturday.

Natalie was growing use to not being able to see well.

Though she could open her right eye up slightly, the swelling was actually at its worst on this day.

Things had to get worse before they could get better.

She was playing in the crib after drinking some milk.

Happy, despite everything <3

 More playing.

Which was starting to get scary.

Since she couldn't see well, she was feeling around for things & kept trying to stand up.

The crib rails are metal at the LSU hospital where the surgery was preformed, so naturally we were worried she would fall and hit her (still swollen) head!

Sunday!

We got to check out of the hospital!

Natalie could open her eyes a little less than half way.

With lots of care instructions & meds we left so happy (but nervous) about getting to sleep in our own beds!

It was amazing to me how happy & laid back Natalie was during the whole thing. The first day she was a little scared she couldn't see but, she did AMAZING! The nurses loved her & kept saying how well behaved she was and how most babies freak out. :)

Though, there were a few complications afterwards (stitches bleeding, her not wanting to eat without vomiting ect.) the whole thing wasn't as bad as I had anticipated. Don't get me wrong... I have NEVER been more sick/worried/scared or nervous in my life! But, she did good, as usually :)

We had a picture day...

My sister is NOT a pro, but she did good! We decided we wanted a few pictures of us as a family before Natalie goes in for her surgery on the 11th. Out of almost 200 pictures (its hard to get a very curious child to sit still) we have about 20 that I edited to look really really nice. My sister snapped the pictures & I cropped and "improved" them. Here are a few...