Monday, January 31, 2011

a flipped switch

Since yesterday's post, Calvin rolls over non-stop. Why is that? It's like going from zero to 60 without going 1-59. Know what I mean? Okay, I'm a dork but you get it. Right? Okay. I hope.

Well, that flipped switch still hasn't gone on with Nolie. Remember way back when I said we were going to eliminate dairy? Well, we did and we didn't do very well with it, but I don't think that is it. So, now we're working on gluten. I thought yes, that was it. Then, he ate a kiwi and bam... red mouth and yucky diapers. I do have to say though, I am learning a lot, even if we don't stick to something unless a real blood test shows a sensitivity. Which I am not willing to do with him yet because he freaks out when I try to brush his teeth.

Also waiting for that switch in my back. Long story so I'll wait until I have an ending. That will be either a healed back or one that is in limbo for so long that I have to get it out there because it has been a bothersome in the emotional department. Anyone with health concerns or pains knows what I mean here. To feel healthy is priceless. I generally am, but this back issue is the result of, what I believe, a few too many months of feeding stress with Calvie. Well, that said, my feeding post is in the works and I hope to have it posted in the week. It's a long one! :(

Have a good week, we head to the Audiologist and Down syndrome clinic tomorrow.

Sunday, January 30, 2011

Good things come to those who wait!

I am understanding why parents of children with disabilities say you cheer louder and feel more excited when the child reaches milestones.

See Calvin:

See Calvin roll over from back to tummy:

I love his tongue! Some people get bothered because it accentuates the disability, but I don't fret over it.
Imagine my excitement!

We have been working on this for a few weeks by putting him on his side and lifting his head while turning him all the way over. This is what therapy is like, along with activities that help him sit up - his next milestone I think. Yay Calvin!

See Calvin practice sitting up:

See Calvin loving his sunshine (who smiles at him):

Sunday, January 23, 2011

And yet, another little boy

Simon - baby above, barely 1 year old below:

I am surrounded by boys and they can quite easily slide right in to my heart. Erin, another T21 mom, posted this and it brought tears to my eyes. When I look at this boy, Simon, I see Calvin. I feel so strongly that he should not have ever been an orphan. Yet, there is nothing I can do to erase what has been for him. However, I can help build up what will be. "Future is a time that we can change"!

Another little boy

After reading Patty's blog for a few months now, it is hard to know when she wants something, and not help her out. The thing is, what she wants is not for herself, it's for others. She wants to see children like this boy have a family. He is a real child and needs, NEEDS, a family. I post these things on here hoping that the more people who see this, the more likely he will get what he needs. If you feel so inclined, or heartbroken as I do, please pass the word: (Also, Olga is back on the waiting list. Her prospective family had something happen, halting their process...):
Meet Peter: (according to Patty, "Andrea personally asked me to advocate for Peter...In her own words, 'Peter has been listed with us nearly his whole life. I am surprised he is still alive. Not a soul has ever inquired about him. We have never had a good picture of him. So my prayer is that some visibility on your blog will help truly save his life'."
Boy, Born February 20, 2007
New picture from July 2010
Peter is a darling little boy with brown hair and brown eyes. He has so much to bring to a family, but he was born with multiple challenges in addition to his Down syndrome. From his medical records: severe delay of stato-motor development, congenital heart disease(ventricular septal defect with high degree of pulmonary hypertension), condition after closing of patent ductus arteriosus and coning of pulmonary artery, retinal angiopathy, farsightedness, nystagmus
Peter needs a family right away, so his medical complications can be addressed by US physicians, and he can finally begin to live life as he should! Please give Peter this opportunity!!
I have $2454.5 in my grant fund towards the cost of my adoption!

6 Months old!

"Future is a time that we can change. " Geoffrey Holder in Tropical Rainforest

Thursday, January 20, 2011

A ramble, with a point or two

I have been avoiding writing too much of what I think about, because for one, maybe no one wants to hear it, for two, not everyone needs to hear it. However, I do feel better after posting. It's strange really. I want to be private, yet somehow knowing people "hear" me makes me feel better...

So, about my feelings these past few weeks. They are sort of morbid. It has been awhile, but it started the winter before I became pregnant with Evan. I will lay in bed at night and it hits me, "I'm going to die." It scares me. I don't know if it is a lack of faith, but I do know I do not want to be without my boys, all 4 of them. I cannot stand the thought of it. It takes my breath away, leaving me with tears that sting, but don't flow. They are tears of fear. What I do know is I need to work on it. I talk to God and tell Him "I need you." I need Him. I have a lot of work to do in my faith. I feel like a failure. I wish I had someone who could mentor me. So, I need to seek that, right?

Well, then I start to analyze more and more and I realized today that I am also very afraid of who I am and how capable I am of being a crappy person. (long story, but I watched Up Syndrome and I am afraid of having an adult with Ds. I was that night anyways. As I think more about it, I'm not afraid so much of Calvin, but of myself. I have a lot of growth ahead of me. More another time). Okay, this is again not a pity party, but a moment of reflective truth. We are all capable of being crappy people, but I am speaking directly of myself.

I am reading The Year My Son and I Were Born by Kathryn Lynard Soper. I feel quite possibly what she felt, though I don't really know. I just know I could feel that, it could have been me. I think I would have peered a bit too close to depression if I would not have had a prenatal diagnosis. Of course I do not know, but I have thought about this many times. I am grateful it worked out the way it did. For some reason, I was spared. It's hard to explain. If you have not read it I would recommend you do. Disabled child or not.

It is just that, well, I am a junky person and I have values in many wrong places.

I know what you're thinking "Oh, Ilisa, you are not!" No really, I am. Of course not in every way, but in too many. I have not given myself completely to God, not even close. I don't know how! I am trying, then I wonder, am I trying too hard? And, I realize if it weren't for Calvin, I would be even less close to giving myself to Him.

When I get tired or hurt, I criticize, I nit-pick, I blame, I judge, and so on. This is absolutely not okay and I am working to change my ways and instead take time to figure out what is going on in ME. It is amazing that I treat others as I think I should be treated, yet don't want to be. You know what I mean?

I will say, as many married women would, I have had negative moments in my marriage. I was going to make a point here, but as I wrote that, it completely escaped me. Why? I guess it is not meant to be that I continue. It is just that I realized something about myself in one of our recent moments (AKA fight). Yes, we fight. No, I didn't want you to know that, but come on!

Oh, I know. I was thinking to myself: I am exhausted trying to forgive. How many times do I have to forgive? This is getting to be too many. I think I should be done. I have a right to be done. How many times? One more? Then it hit me: God does not decide that I've asked one too many times. He forgives us over, and over, and over. Who am I to give up on one person? I won't give up. I will always love him. I will always forgive him; because of that love. And, I hope he forgives me.

Life is exhausting yet exhilarating, isn't it? I could go on, but this post would too soon be a book. Maybe another time. The journey is not close to being over. My brain never shuts up! I don't even know if this post will make sense. Sorry if it doesn't.

It's Time to Celebrate!

Though it has not been the easiest week for me in regards to Calvin's diagnosis (maybe I'll get to another time...), it has, nonetheless, been one to celebrate. Calvin does not have to go back to the cardiologist until his birthday (which alone is a crazy thought). His heart looks normal, sounds normal, and is doing what it should. All the repairs looked great during his echo yesterday. Dr. Sutton feels pretty strongly that he should not need any further work. So, we'll see him when it's warm! Calvin was up from 10lbs, 11ounces to 11lbs, 9ounces (that's all nursing!).

Lets ask Calvin how he feels about all of this, shall we?