Don't Change Him

Lately, I've been struggling with Wesley's upcoming surgery. I don't want him to have it..and not for the reason you may think..because I'm scared.  Part of me is, yes, any mother would be. The reason... He's perfect to me and I don't want to change him. Is that bizarre? I don't want to change who he is. I don't want to change his lip. I look at him and I don't see "cleft lip" as I first did when he was born. I see "Wesley"  I see his spirit. His huge, amazing grin.  I don't want to change him. I see my beautiful, amazing son.  Medically, I know it has to be done for his quality of life, I know this and I agree with it. It's best for HIM to have it done. But me, I don't want to change him.

It makes me sad to admit this but there was a time after he was born that I could barely look at him without crying. I hurt for him so bad. I cried and cried. Days, weeks.. I cried nearly every time I saw him.  I spent the time he was in the hospital crying. I'd pretend to be napping and I'd cry. Not because I was ashamed but because I just hated it.  I dealt with so much guilt. I was mad at myself. I felt I messed up. I felt that it wasn't fair. I felt I failed my husband. I finally gave him a son and look, I ruined it!!!  It took many talks, many tears but I finally realized that wasn't how my husband felt at all. He never ever felt jipped, he never felt let down. I love that man! He's such a strong, amazing father!!

Right after he was born I was so shell shocked. So saddened. I was grieving, grieving the son I thought I'd have. It was like the son I thought I was going to have died the moment I gave birth.   I've never admitted that to anyone but my husband but after reading a couple books about similiar situations that other people have had I realized I'm not alone in how I felt. How I felt was totally normal when you are handed such a shock.  I actually had people ask me "well why didn't you let us know when he was born!!!" and were upset with me. During that time I was dealing with so much I could barely eat.

And now I don't want to change him.  He's amazing. I love how he stops crying when I sing to him. I love how every morning when I unwrap him he smiles at me. I love watching his sisters play with him and how they totally accept him.  I love how, at times, I'm the only one who can get him to stop crying.

I hate it when I think about the pain he'll have to endure throughout his life but I love the ride I've been given.

New Girl In School

In just over 3 weeks we will start Terminal leave. Our active Military life will be done.   I am nowhere near ready. My house is still in full functional order, I haven't made to do lists..which is a must, I haven't started deep cleaning the apartment, I really *ought* to buy big girls birthday presents and school supplies while we are here because once we move she starts school the next week and in that week we'll have an appointment or two for little guy plus unpacking and job hunting, and registering for school, so it'd be much easier if I'd just do all that now.   I have nothing packed.  I have no trailers reserved. I don't even have a place to call home once we get there.  I have nothing done. Here's the funny thing, I don't care to either because I know that even if I don't start for a week and a half, I'll still get it all done because it's what I do. I'm Hooah.

Im in denial. I don't think it'll actually happen. I'm gonna miss this life. I'm going to miss my "sisters", I'm going to miss seeing hubs in ACU's, I'm going to miss watching homecomings.  I'm going to miss my SISTERS! (yes, I said it twice)  I don't even know if I will fit in with other wives..I've never been a Civilian wife. Which sounds crazy for me to say, I sound like a crazy person because there's no difference between Civilian wives and Military wives..is there?    I'm starting to feel like a fish out of water.  My life is completely changing.   Will I be accepted in this crazy civilan life? I'm no nonsense, independent to a fault, say what I think...that's me. I don't whine when my husband leaves for 2 weeks.  I don't weep if he has to work nights. I've unpacked a house in a day being 2 months pregnant and throwing up. I've hosted a BBQ a week after I had a baby, who spent a total of 5 days in the hospital.   I've thrown together a huge FRG Christmas party with just the help of one other person in the span of a week...during the holidays..in which I was hosting Christmas at my house.  Will I be accepted?  I can be your best friend or your worst enemy. I don't stand for stupid.

I'm not taking down my Army Wife pictures and plaques.. I don't have to, do I?  I'll still be an Army wife to the core..right?  

I guess the point in all this incoherant rambling is that I'm scared. Really scared. I'm excited yet scared. I'm excited to not have to deal with the politics, I'm excited to not have to deal with deployments, I'm excited to go back to Kansas..I want to learn to Can.. because that's whatcha do, so I wanna do that so I can fit in...I want to grow a garden..Ok, nevermind, I don't. 

I feel like the new girl in school.

They Were Wrong

They said you'd have trouble eating...

They said you'd need a feeding tube.

They thought you has Sepsis or meningitis .....

They didn't think you'd make the 10 pound weight minimum for surgery at 3 months..you're already there!

They said you'd need intensive therapies...so far you've surpassed the therapists goals.

They said you'd aspirate your formula through your nose until both your lip and palate were fixed... I haven't had to suction your nose in at least a month. You don't aspirate anymore. They were wrong.

 They've been wrong about you thus far. Everything they say you can't do, you prove them wrong.

They say you'll need false teeth, bone grafts and many cosmetic surgeries. They say the palate surgery is very hard to recover from..with lots of pain and no eating and sleeplessness. They say you won't talk for a long time and when you do it will take a long time for you to get it. They say you'll need intensive speech therapy.

 I assume you'll prove them wrong too. My strong little man...what an inspiration you are. You've changed me for the better. You're a fighter. When I feel that I don't have the strenght to go on, one look into your smiling face gives me strength.

Tuesday's 10

Ten Things I Will Miss About Military Life


1. Washing and folding ACU's and other Army uniforms. I spent my honeymoon starching and ironing BDU's back in the day. Fond memories.

2. I will now have to use the phrase Mr and Mrs. instead of Spc. and Mrs, or Col. and Mrs.

3. Refering to people by their first names instead of  "Jones" or "Smith"

4. Not having to fold and match those dreaded green socks. It takes more brain power than a game of Jenga.

5.  I'll miss seeing hubs in formation after work.  I love formations.

6. Deployments suck. No question about it. But those homecomings are amazing. I will miss those.

7.  I'm going to miss my "sisters"  I know so  many amazing women. Women that know completely what I am feeling at times. Women who have grown to become sisters, mentors, family.

8. I'm going to miss the pride I feel seeing my husband in uniform.

9. Health care.

10. I'm going to miss having someone else move me. Free of charge.

My Poor Neglected Blog

My poor blog has been neglected. I just don't have the time most days to stay on top of it right now..which is saying a lot.

We are settling into a routine..kind of.  There are good days and bad days. Therapies, Dr  visits, and normal everyday mommy stuff keeps me busy.  Most days I am running from kid to kid all day. Especially since it's summer now and I have all 3 kids home all day.

Wes is finally on a formula that I think will work. Now that he is doing better on that I have to start the process of doctor visits to update them and then get them to give me a RX so that I can get WIC to get us the formula and to change it in their system, once again. They are being less than helpful in regards to his formula but we have to have it at this point to pay for his formula.  It's mahal (as my mother-in-law would say)  But the soy seems to help him a great deal.

I'm doing okay. I have good days and bad days. Yesterday was a bad day. It's all very overwhelming at times. ETSing, moving, setting up life in another state without the Army behind us, job hunting, plus Wesley. Hubs and I are on the phone with insurance or doctors nearly everyday. No exaggeration. Sometimes I tend to lose it. The tears flow and I can't stop. Most days I am okay but some days it's too much.  I realized yesterday that I am going through the "stages of grief" In a way I am grieving what I thought "was" the whole time I was pregnant. What I thought "would be" is not.  I don't regret my son.  Never in a million years. He is my light. I am SO SO in love with him. I wouldn't trade him for the world.  

I'm angry right now. I'm angry it happened, I'm angry that I have to fight every step of the way, I'm angry that in his young life he will have surgeries. I'm angry that Doctors and other medical professionals don't take me seriously sometimes because I'm "young". I'm angry that all the pediatricians I have encountered don't want to answer my questions because of his cleft, they want to just refer us out to a "specialist" for every.little.thing, which delays what I need by weeks and I'm left to figure it out on my own.

My thoughts are very much on surgery. Reading up on after care tips and tricks, getting autorizations figured out, Setting up consults in Kansas.  A lot of it feels very "One step forward, two steps back"   Right now we are scheduled for a consult at the KU Medical Center in August. Hopefully surgery will follow soon after and won't be delayed too long.

This too shall pass.  We are strong. We will win this. My baby is a fighter. We will rise to the top.
Without further rambling I thought I would share some photos..enjoy!

Emotions

I'm stressed. To the max.  How am I supposed to make decisions for a tiny little man that will affect him his whole life?  My heart aches. I don't know what to do. I don't know what decisions to make. I don't know what the right thing to do is.  We are debating a certain treatment right now. One that could make his surgeries go smoother and easier. Downside is it would mean a hospitalization, weekly trips to the dentist, fittings, refittings, and this treatment would last for 4 months, delaying the lip surgery and also cutting into our terminal leave, which means we couldn't move back to Kansas until the treatment was finished.  Do we sit here and waste a month or more of leave time, not being able to job hunt in Kansas?  What's the right decision?  Do we delay moving back home and finding stable jobs and delay him getting his surgery done?  Or do we not do the treatment and hope for the best during the surgery, which we will be able to get done soon?  We've been told we can still get very good results without doing this treatment.  Are we bad parents for NOT doing this?  Or are we bad parents for sitting here in El paso, waiting around for a month or more, delaying job hunts, delaying getting our oldest in school, delaying the start of our permanant civilan lives for a treatment that may or may not make a huge difference.  Tears just fall down my face because I don't know. I just don't know. I'm in over my head. I want to do what's best for him, but I also have the well being of 2 other kids and a husband who needs a career, to think about.

I feel trapped. No Date nights, no time away from the kids during the day. I desperately need those things and until now had them. It's best for ME as a mother to have that time. Here's the tricky thing; I don't trust anyone with Wesley. I don't trust anyone at the daycare. I don't trust babysitters.  I don't trust them to know how to feed him, he uses a special feeder. I don't trust anyone to know what to do and not panic when formula comes out his nose and he starts to gurgle. I don't trust anyone to know how long to burp him because if you don't do it long enough he starts choking or spitting up.  He can't lay flat like other babies. He can't sleep in any position besides a special one without being watched.  For me and hubs it's second nature now but I don't trust anyone with him alone. I feel very very trapped. Like I have no way out. Like I have no escape. Ya, it'll get better, once he has some surgeries and is more like other babies, but until then.. 18 months from now.. What am I supposed to do.  There's no way I could let myself leave him with someone.

I love him more than life itself.  He's my little buddy. My everything.  But any mother knows that being with three kids 24/7 will more than grate on your nerves.  Especially one needing special attention.  I'm his biggest care-taker at the moment. With Hubs working it's up to me. I do nighttime feeds and everyday, all day.  All me.

I don't know the right steps to take.  They say God doesn't give you more than you can handle................ But right now I just don't know.   Can my marriage handle this? Can my other kids handle this? Can I handle this?

Happy One Week Birthday

To My Little Man!!!!!!!!!!!!!!!!!!  What a whirlwind week!  I started the day grumpy and huge and by 6pm I was holding your sweet self!