Yes, My child has CdLS...who am I???

This tends to be a more difficult question for me this week...although I find it a very good blog-challenge question for all families who are blessed with any type of child with a disability in their family...I do not typically have time to participate in "blog challenges", but found this one a MUST for me this week...

Who am I? I bet several people reading this would be able to answer this perfectly for me, as I tend to be extremely energetic and passionate about my life, my children, and my family...yet as I attempt to answer this question tonight, most of my answers would include my children and my family, mostly my children...so it might prove more difficult for me to answer, than I had originally thought. I watched a Dr. Phil episode tonight that reminded me so much of my family and what it has become since the birth of Tayvion...and the family struggled with two young boys born with the same rare congenital heart defect, which spun their family into crisis, not once, but twice...Rev. T.D. Jakes said that the family had learned to survive in constant crisis mode, living life in the fast lane, due to the constant medical needs of their two young children. And I had to relate almost 100%, as my family too, has learned to live in a constant state of crisis and chaos since Tayvie-doo was born. I rarely speak of this constant state, as I tend to sugar-coat things for others, tell them how well we're doing, and hope for the best...but this constant state of chaos and crisis can at times be draining, to say the least. And it is not that I do not want to talk about these things with others, but often find that others may never be able to relate, unless they too, had the gift of giving life to and raising a child with such special medical needs. And what has become oh, so normal for our family, would look nothing short of chaotic to others...so at times, I find it better not to discuss any of it all, since it is too difficult to explain...so, who am I??? Well, during the day, I am a School Psychologist for children with severe emotional disabilities...I am a friend to the teachers and staff I work with and a source of support and encouragement to the teachers and children I work with...I counsel children with emotional disturbances and assist in managing their behaviors in the classrooms...I am a tender and funny person, finding the best in each teacher and student that I come into contact with during the day...By mid-afternoon, I drive home with my "mommy" hat on, pick up my five year old from school and head home to our beloved Tayvie-doo...some days I am able to change my clothing into something more comfortable as I switch mental gears to mommy-mode, as therapists come in and out of our front door, in hopes of helping Tayvion develop at the best rate possible...of course, I am also the chef, the maid, and the soccer/wrestling/t-ball mom, making sure we all eat before heading off to practice...I am also superb at mixing formula for the Kangaroo pump for the car ride here, there and everywhere!!! Oh of course, I am the laundry lady, who makes sure school uniforms and work clothing are clean, folded and put away for everyone to find...I am the person who keeps our home in order, writes out the bills, and notes to Kindergarten teachers to see what field trips I might be able to attend to remain involved in my five year old's life as well...so, Who Am I??? I am who I have become a Graduate level professional, a mother, a wife, and a woman in need of some time to herself...but I am also grounded and realistic that this is what my life has become and I would not change an ounce of it for all of the money in the world...I get sweet hugs and kisses from both of my boys and husband, and the rewards far outweigh all of the sacrifices...Tayvion is now waving hello and bye-bye, thanks to all of the hard work, devotion, belief, and love we have given him...he giggles, laughs, and smiles, sometimes having a difficult time going to bed, because he loves to be with me so...so much that he hates leaving to go to sleep...who could ask for anything more? My five year old thinks I am "the most beautiful lady ever," and "doesn't care that I have rolls on my belly (ha, ha)..." and his friends tell him, "Tre' your mom is pretty!" and he thinks it's great!!!! We share secrets, kisses (of course when no one is looking), color together, and read tons of stories...sometimes the same ones over and over...I am who I have become and will be who I am meant to be as I grow, mature, and age...I would not change who I am for anything...I am hoping to be all I can be in the many more years all my boys' lives (husband included)...for as long as we have to be in love with each other!!!

First Professional Photos...

I am happy to say that we finally did it---we finally took you and your brother for your first professional photo session together!!! YAY! We are accomplishing BIG things this summer!!! Although I made the appointment for well before your scheduled nap routine (thanks to nurse Tracey), someone was training and we waited for almost an hour...you were miserable, not to mention that I believe the lighting in the room really irritated you, as your eyes watered non-stop and you kept them closed for much of the session. I am so proud to be the mommy of these two handsome, wonderful BOYS!!! Your brother kept telling the lady, "don't do that, he has a feeding button, he doesn't like to sit like we do, he will cry if you move him because he doesn't know you, and he likes to lay on his belly...do you have any pillows?" She sure did, thanks to Tre'von!!!

Daddy's boy

I guess that I haven't written much about your father, so I should add a ton about him, since he is also your primary caregiver in the evenings when he gets home from work...we share a lot of responsibilities taking care of you after Tracey has gone home and I give him props---he can take care of you like no other! You screech when you hear him come in the room and he screeches back at you and you laugh and smile...you know it's him and get so excited! I know that most days he is exhausted, since his work is very physical, but that NEVER stops him from getting down on the floor with you to play, feed you, or give you a bath...and the two of you have this "secret screeching lango..." I will never understand!

Brotherly LOVE...

You love your brother...that is one thing I am soooooo certain of...look at your face, look at how peaceful you seem, when he is near, touching you, holding, you and being with you...

I've added some older photos from last summer and your first winter, when you had your wild and crazy hair-do...when I look at these older photos, I can't help but remember how much your brother wanted a sibling---to play with, laugh with, and share a room with...and how much he has grown since becoming a big brother! He will being Kindergarten in a few weeks and asked me the other day if you could go with him. He is so gentle with you, but also so rough with you, which you love...he recently began doing some crazy Karate chop with you and you get laughing so hard that you "toot" and actually sometimes need your diaper changed!!! It's hysterical! He will be your hero for many days to come! He has grown into such a mature, strong little boy...he has had a monumental summer---taught himself how to ride his bike, without training wheels one week before he turned five, and basically taught himself how to swim the full length of our pool in almost a week...I can barely keep up with him in the pool any longer. He has your father's athletic ability and my brains...what a deadly combination!!!

Update on your eyes...

Today was a tough day for us. We re-visited the doctor that originally saw you when you were six months old, almost a year and a half ago, for the potential Ptosis surgery (droopy eyelids)...the good news is, he was so impressed with you and your physical growth...the bad news is, the odds for surgery are extremely stacked against you. He basically told us that there are easy cases, mild, moderate, severe, and COMPLEX...he told us that you are the MOST COMPLEX he has ever seen in his career...so, our choices are: 1) leave your eye lids droopy, and hope that you continue to grow and develop and get past the hurtles that the droopy eyelids present for you, or 2) go for the surgery and be left with a host of other problems including: you may never be able to close your eyes again, we will have to use eye drops several times per day due to you not being able to blink or close your eyes properly, infection from the surgery which could lead to removal of the eyeballs, etc...we are devastated tonight to say the least...why is everything so difficult for you? Why can't one thing just be easy and actually work? It is the same thing we heard when we went for your consult for your cleft palate repair at the beginning of summer...let's wait and see, let's wait, let's wait, let's wait...As a parent, we always want to "fix" boo-boos, make life the BEST for our children, but with you, it seems like we are fighting and fighting and fighting, and not making much progress, leaving us feeling so desperate and helpless...almost defeated. I wish so badly tonight that you could talk and tell us what you think we should do, what you would want for us to do for you...and you continue to smile at me, laugh with me, hum your songs, and play as if life is the best...and only you know these things as so many of us miss each and every day. Your Coats' Disease in your Right eye is not doing well either, leaving us even more devastated at the possibility for one more round of surgery to seal the leaks in the vessels behind the eyeball and see what happens...your retina is at high risk of detachment at any point now, so again we wait, wait and wait...we are using prayer and hope that something will turn out right for you...I have to admit though, despite your visual delays, you are so SMART! You are consistently signing "more," "all done," and sometimes even "stop." You have picked up on sign language quicker than I thought you would, although you can be a typical two year old at times and only use it when you want to and feel like using it!!! We love you so much, Tayvie-doo, and hope we are doing right for you...we worry that sometimes our best is just not enough...I can remember all too well, the day after you were born, a Developmental Specialist came to see you and told your father, "Do not waste time trying to "fix" the things that are wrong with him. Love him as he is and let his development take its course as it will." I remember how mad your father was and how hurt we both were at the thought of someone telling us that, the day after you were born...but tonight I wonder how much this extremely wise man knew, about your development and the tough battles we would have ahead of us...tonight I will try not to feel so defeated, but will try to feel blessed by having you in our lives to love, as you are...

Our first camping trip!

Well, we finally did it! We took our first camping trip together as a family!!! And what a trip it was...five days at Piseco Lake in a pop-up camper, and tent for you to roll in during the day, of course! We all had such a great time and you took your first ride ever in our boat! You HATED the life-jacket and cried until the boat started moving...and then you signed, "more, more, more!!" You slept through the night in your pack-and-play and adjusted well to the day-time routine of playing on the beach with your brother and taking lots of long walks in your stroller! You loved every minute of it!!!! We are so proud of the little man you have become and look forward to many more trips this summer, since this is my 1st summer off ever!!!

Happy Birthday, Two Years OLD!

Wow, the time has just flown by without me! I do not know where it has gone, but we have all been so busy!!! On June 9th, you turned two years old and on June 6th, your brother turned 5! So, on the 14th, we had a nice celebration at our home for you both, together. That is the way Tre' wanted it. He wanted for you both to swim with family and friends and "eat cake." So, that is what we did. It turned out to be a beautiful day, right until the very end of the party when it rained, and so many friends and family were here to share you and your brother's day! It was VERY hot that day, so we took turns taking you in the pool and into the house into the air conditioning to cool you off...you do not do well with the humidity---you have a hard time breathing and you just want to be left alone...you took a nice long nap that day also, which helped you get through all of the excitement!

At two years old, you are the most amazing little person I have EVER met in my life! I am so in love with you and just absorb each little milestone or "cute" thing you do each day...and each day there is always a new one...you now sit perfectly on my hip (without throwing yourself backwards) and truly enjoy traveling around the house with me while I cook dinner, put laundry away, help Tre' with coloring or playing or just hanging out with me no matter what I am doing. I never thought I would be so thrilled to have a permanent baby on my hip, but you can sit there for as long as you'd like! I have waited what seems like forever to be able to carry you like this...and makes me feel more like your Mommy; for every mommy loves having a baby on her hip! After all, that is why God gave us such big ones! While on my hip, (just recently), if you feel you need my attention, you take your hand to turn my face toward you, as if to say, "talk to me, not them..." It is the CUTEST thing EVER!!! And then you smile...you have a smile that can light up the world...there are no problems in the world when I see you smile...if you can smile, so can I.

Your health has also been amazing. You have had a few bad spells getting through the humidity, and of course, along with that comes the oxygen and the endless nights of worrying about you...but you seem to make it through and have endless strength and courage.