Thursday, June 18, 2009

Too Cool

Technology is amazing. Right now, this very second, Brianna and I are onboard AirTran, IN THE AIR, on our way to Chicago to meet up with Jerry and spend the weekend. So far Brianna has been cooperating, only threw up once so, the flight rules are once a child is over 2 years old, you must purchase a seat for them. In Brianna's case, she is so small that I could hold her but rules are rules so we (or should I say I) made it to the airport (thank you Kathy for driving us) with lots of "stuff", I did a practice pack up the stroller as much as I could without flipping it, last night but forgot that I was also going to have to carry the car seat. Whew....made it. My wonderful husband who does his best to spoil me made sure we got to sit in first class, so, I am also enjoying a bloody mary, I am on vacation, yes? Anyway, Have to say the car seat was a good thing, Bri is strapped in comfortably and is happy at the moment. Already took pics and some video, will work on downloading those next week.

Thursday, June 11, 2009

Special Child

Baby Vera's mom posted a really special poem on her blog and it is so nice that I wanted to share it as well.

I Am The Child

I am the child who cannot talk. You often pity me. I see it in your eyes. You wonder how much I am aware of...I see that as well. I am aware of much...whether you are happy or sad or fearful, patient or impatient, full of love and desire, or are just doing your duty by me.

I marvel at your frustration, knowing mine to be far greater for I cannot express myself nor my needs as you do. You cannot conceive my isolation, so complete it is at times.

I do not gift you with clever conversation, cute remarks to be laughed over and repeated, I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me. I do not give you rewards as defined by the world's standards...great strides in developments that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable...I give you instead opportunities.

Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you would ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers.

I am the child who cannot talk. I am the child who cannot walk. The world sometimes seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, Oh I've dropped my spoon again. I am dependent on you in these ways.

My gift to you is to make you aware of your fortune - our healthy back and legs, your ability to do things for yourself. Sometimes people appear not to notice me, I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.

I am the child who cannot walk. I am the child who is mentally impaired. I don't learn as easily, if you judge me by the world's measuring stick.

What I do know is the infinite joy in the simple things. I am not burdened as you are with the strife's and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love.

I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you, I teach you of respect for others and their uniqueness. I teach you about how very precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you about giving. Most of all I teach you hope and faith. I am the disabled child.

Having a child with special needs has been a phenomenal experience as well as a life-changing experience. Not only in our every-day experiences, but also in our spiritual lives.

I challenge you to the next time you come across someone with a special needs child, don't look the other way, smile and say hello. I can't tell you the number of times when people realize that Bri is different, they look the other way to avoid us. All it takes is a smile. Believe me, I already know we are very different.

Monday, June 8, 2009

More Thankful Than Words Can Say

As everyone knows, we are more thankful than words can say for Brianna still being here with us and healthy (as far as we know). but let me tell you what happened last night and then today. Jerry's parents were over last night and his father mentioned that he had noticed a lump on Bri's neck.....immediately all I could think is how did I miss this? It was a lump that could be seen only when she was in a particular position and say the least I couldn't believe that I had not seen it. So, today we had an appt with her GI doctor as a follow up, the wonderful news we heard from him is that SHE LOOKS FANTASTIC!!!! According to a Trisomy 18 weight/height chart, she is ABOVE the 50 percentile for weight and height. Let me remind you that trisomy 18 children remain small, we came across a 19 year old (yes, I said 19 year old) who was only 58 lbs and her height matched her weight.. that is when I stopped worrying so much about Bri not continuing to gain weight.

So, then we went immediately to her pediatrician, whom I LOVE. Dr. Chaban has been the most incredible person, I just can't say enough wonderful things about him. Anyway, after checking out the lump on her neck he said that it was a "palpable" lymph node and nothing to worry about. All I could think of was cancer...which was a possibility, but he said no and that she looked and checked out to be in tip-top shape. Oh, what a relief and you can only imagine. FYI, she now weighs 20.4 lbs and is 32" long. God, we are so incredibly blessed. Thank you.

On another note, bless Bri's dad's heart, Jerry, or should I say his back....his back went out last Wed. while in Texas. He flew home and thought it would get better in a couple of days but last night I had to take him to the ER. They said it was muscular and prescribed some pain meds. Well, today it wasn't any better so we made an appt with his orthopedic for first thing in the morning. He is so tired of crawling (literally) around the house. And to be honest, I'm tired of it too!!!! LOL. I sure hope something can be done about it in the morning for his sake.

Good night all.

Sunday, June 7, 2009

Heartbreaking News

In an earlier post I asked for prayers for Laurie, her husband and Lil Toot being delivered last Tuesday. Sadly, Lil Toot was born into heaven Tuesday night. I can't imagine the sadness the parents must be feeling. I also find myself wondering why her, why are some of these little angels destined to live longer than others. Why is Brianna still here yet others only have minutes or hours? We'll never know the answer. I only ask that you pray for peace for Laurie and her husband. Continued prayers too for Annabel who is recovering from surgery. Brianna is so much like Annabel, all smiles and full of fight. God Bless Them, all of them, those still here with us and those sitting in the lap of Jesus.