Today, it was a dazzling day, not a cloud and only a slight breeze. We visited the Children's Zoo and Elliot and Nora had a ball. Elliot did, however, become a bit scared by the peacocks. Their shrill screams had him in tears, but I soon calmed him and we went on to visit some other new creatures of interest. Elliot's favorite creature, notwithstanding, is me, his pregnant momma!
Thoughts worth thinking:
The person who can smile when things are going wrong has thought of someone else to blame it on.
It was a typical Saturday afternoon trip to the grocery with Elliot. I walked in and immediately meandered over to the produce. As I held my still green bananas (they were all green, AS AM I), a young man approached to get a closer look at Elliot. “What a beautiful baby,” he said, slurring his words just a bit. “He is really handsome.”
“Thank you,” I said, backing up guardedly as I am still petrified about the ever present microorganisms and my preemie.
The young man, short in stature, with eyes that resembled that of my dear Elliot’s and a tongue that protruded slightly, went on to tell me that his name was Christopher and he worked at the grocery.
“Pardon me, but I am not wearing my badge and smock, but I really do work here,” he gleefully mentioned.
“Did you happen to see the article in last week’s newspaper about me and how my mom made my thirty-first birthday really special,” he asked.
“No,” I said, “but I will certainly search for it online.”
Christopher stood...as if he couldn’t move and was utterly mesmerized by my Elliot.
And the words that rolled out of my mouth should have never been articulated, but they were.
I asked dear Christopher if he had Down syndrome.
“No, miss, I am perfectly healthy.” “Why do you ask?”
I went on to dig a deeper hole. I then told Christopher that he reminded me of Elliot. He just looked at me a little dumbfounded. I said that he was really handsome too! Christopher smiled merrily and told me that a grown woman had never referred to him as a handsome person. He thanked me and told me to have a nice day. He was then on his way.
I did find the article that Christopher referenced in our local newspaper’s web archives. Christopher was born 7 weeks premature and nearly died, and his mother has (to this day) celebrated each and every day in March as Christopher’s birthday...giving him a special gift every day of the month. It was a beautiful feature about a beautiful young man. A young man, who, despite what I assume was a minuscule amount of brain damage, knew exactly what it meant to have Down syndrome, and knew precisely that he did NOT have the condition. He took my blunder in stride; however, I will forever eat the words that I uttered to this truly fantastic young man. Never again will I open my mouth so candidly.
I have read that babies (aged six months and younger) suck their thumbs as they have not had enough sucking at the bottle (or breast) to fulfill their sucking needs. As Elliot recently started to suck, I do think that he is sucking for other apparent reasons. Primarily, he “learned” the behavior from his big sissy, Nora. It is, however, becoming less and less important to my 5-year old missy.
Soothing, therapeutic, calming--maybe evening healing--thumb sucking serves countless needs. But, in my estimation, it is merely the cutest thing that I have ever seen. Keep on sucking my sweet kiddos!
“No, Momma, I will not, unconditionally, absolutely NOT, open my mouth. Why are you feeding me wet cardboard?”
Well, I tried. I tried really hard to get some rice cereal in with a spoon. Not happening. Back to the bottle and I’ll sneak it in there. Kind of like we do with broccoli when we COVER it with cheese sauce!
And, all I can say is “GOD HELP ME!” My father-in-law also owns a car dealership and picked up this “thing” at the auto auction last week. Another Harley with a side car. Jeff does have his own, but brought home this atrocity tonight. And, Nora had to ride up the drive way. Yes, the photos are charming; however, it will be a cold day in you know what before I get in the thing. Enough said!
My wee boy has started to speak! Well, let’s call it “babbling” for now, but I like to refer to it as speech! His first sound...get ready, “MAAA MAAA!!” He says it with such glee! And you know, I have told a few folks and they all have said the same thing, “Ma never comes out first!” Did I teach my little man to say “mommy?” Conceivably. Conceivably not. But, whatever or whomever he is referring to; this little first word melts my heart nonetheless.
He’s got “BA” down pat as well. In Elliot’s world, what, really, is of the essence? Me, of course, and the dearly loved bottle.
I am the first to admit that I am a control freak. As defined on Wikipedia, the free encyclopedia: “In psychology-related slang, control freak is a derogatory term for a person who attempts to impose excessive predictability and direction on others or on events, often associated with insecurity or a lack of trust. Frequently, a person labeled a "control freak" has a position of authority or superiority in a relationship; however, the person's obsessiveness extends beyond the acceptable range of control. A related concept is the neat freak, who seeks to achieve control over his or her environment by excessively cleaning and organizing. Severe cases of controlling behavior may be a feature of obsessive-compulsive disorder or of narcissistic personality disorder.”
Okay, I fit the bill pretty well, most of it, but not all. I am not an insecure person, but do consistently try (and try some more) to predict the future and to make it go “my way.” I have the “neat freak” mania going for me as well, but really, that is another entry.
Enough already about my faults. This particular fault, however, is beginning to really get under my own skin. I plainly cannot control sweet Elliot’s destiny. I know this…
And I know that I also have no control over our daughter’s fate (but just maybe a little bit more).
I cannot even begin to gauge Elliot’s supposedly “predictable” milestones: the first “I love you mommy” or the first steps on two feet. Nor do I know if he will ever reach what many consider to be typical milestones. I also cannot control the health of my little bundle. I know this.
I have accepted this, so why, oh why, do I still cry myself to sleep sometimes? Why do I worry so? Why do I try to diagnose each and every minute (or colossal) thing that pops up regarding Elliot’s health? Why am I driving myself into a delusional state of being? I know; it is called “motherhood.” But, is it really supposed to be like this? Why do I think that it is harder for me specifically?
Admittedly, Elliot is helping me to overcome my controlling nature. Alas, I am just not “there” yet. So where am I? And, when will I be where I need to be? My cherub was brought to me to teach me…to teach others what authentic beauty is…to show the world that it is okay to be dissimilar – to be special. But most of all, I think that he is here to help me conquer my fear of having a lack of jurisdiction…of authority and ultimately, of control. It’s really in God’s hands (and always has been) but never before has it been thrown in my face with such brutal force and such candor.
Sweet Mikey is a little boy who passed away on February 22, 2007. I got the pleasure of "meeting" Mikey and his family through a message board that I participate in. Another friend, Connie (http://gotsnow.org), posted a tribute to Mikey on her blog and I am following her lead (and the lead of others on our message board) by posting a special tribute to beloved Mikey.
I send continued prayers and love to Mikey’s family: his parents, Danielle and Chris and brothers, Dominic and Joey. A special thank you to Danielle for sharing the delightful pictures of Mikey that you’ll see here. May God be with you and your family.
Dancing with the Angels by Monk & Neagle
Memories surround me
But sadness has found me
I’d do anything for more time
Never before has someone meant more
And I can’t get you out of my mind
There is so much that I don’t understand
But I know
You’re dancing with the angels
Walking in new life
You’re dancing with the angels
Heaven fills your eyes
Now that you’re dancing with the angels
You had love for your family
Love for all people
Love for the Father, and Son
Your heart will be heard
In your unspoken words
Through generations to come
There is so much that I don’t understand
But I know you’re dancing with the angels…
We’re only here for such a short time
So I’m gonna stand up
Shout out And sing Hallelujah
One day I’ll see you again
Well, Wee Elliot felt a bit better late today, albeit quite a bit of spit up and strange reactions from his steroids for this darn respiratory flu. But, at very least, we left the house for a trip to Grandma’s for a splendid dinner. And, he even got a chocolate rabbit from the Easter bunny. Didn't know quite what the heck to do with it though. LOL!
Enjoy the photographs!
Happy Easter to all of my friends and family. A special Easter wish to Pam and Rhett. Rhett's momma, Pam, sent me these ears to share with my sister, Nora. God bless everyone on this special day!
Love,
Elliot
Every year, an estimated 125,000 babies in the United States are hospitalized with ruthless RSV illnesses. Can we make it through the season without RSV? As Wee Elliot was born two months prematurely, our little fellow was not born with enough antibodies in his petite body at birth. Hence, he has endured, like so many premature kiddos, a monthly Synagis shot since October. We received our last shot this past Tuesday. Low and behold, Wee Elliot has gotten sick...really sick, for the first time since his debut in August. We are treating an upper respiratory virus and croup currently with steroids, and praying that this doesn’t turn into something more serious...primarily RSV.
I did promise Elliot that his first Easter would be filled with joy and that the Easter bunny may even bring a surprise...
It is Good Friday. I pray that Sunday brings health, a special day and a Happy Easter.
Don’t get me wrong. I am oh so grateful that Elliot receives EI services through our local public school system. We initiated PT directly after he was born. Regrettably, our physical therapist was plainly not used to working with a preemie with Ds. I do think that the school system would have preferred that we had waited until Elliot was at least “full term” to commence with services. I, however, am not one to wait, so, “Bring it on,” I said gleefully. And, they obliged. Wee Elliot is nearly 8 months old, but still, is not holding up that weighty little head of his. Nor is he rolling or even attempting to do so. At our last “well baby” check-up, our pediatrician suggested we initiate OT and PT services through an organization that specializes in working with infants that have Ds and other conditions. Bless her heart for being so very proactive. She suggested additional PT at first, but PT at said organization comes with a month long waiting list. So, last night, we started with OT and the therapist worked with Elliot on some physical things as well. She was magnificent and very encouraging. She noted that Elliot’s attention span is remarkable and “advanced” as she so cheerfully called it! Now THAT, in and of itself, made me smile huge smiles! He followed objects very well with his eyes and reached out for her face and numerous bits and pieces that she placed in front of our dear baby boy! And, he DID attempt to roll. I was amazed. I will continue to update regarding his progress, and will tell our EI folks on Thursday that we have started other services as well. IEP, you know, on Thursday and I am nervous. As the school system will eventually ascertain if indeed Elliot is “good enough” to be integrated into the public system with typical peers, I am very thankful that we will now be doing things on top of what is offered at no charge. Thank God for the REALLY good therapists!
Nora spent the weekend on a relative’s farm in Topeka, Kansas, primarily to spend time with her most beloved creature, a charming miniature horse. The horse holds allure and intrigue for many people, but, first and foremost, for dear Nora. She finds this animal to be striking, but bewitching, captivating, yet cautious, loving, but leery, and trusting, yet now and then, bashful. Few animals offer such variety of sizes, shapes, colors and uses. Of course, horses are no longer used to carry warriors off to battle, or to carry mail bags across miles and miles of perfidious landscape, but they are finding a very special place in many people’s lives...and a special horse has tiptoed right into Nora’s. Nora has the unique ability to actually “become” a horse. Indeed, her imagination is quite captivating. I so wish to capture her on video while in “horse mode,” and someday I will. But for now, I merely revel in the priceless photos from the weekend.
I will soon begin to provide some pro bono PR services to an organization in town that provides a therapeutic horseback riding program and equine-oriented activities to individuals with physical and cognitive disabilities. In time, Elliot will become involved as well, and I hope that his love of horses mimics that of sister's.
Nora also caught her first fishy over the weekend. An avid fisherman, my husband got a kick out of that!
I have been blessed with one child whose body has been enhanced with an extra chromosome. Will I be blessed with another? And, should I unearth God’s plan? The question weighs heavy on my mind. I have told myself that I will not screen for chromosomal “idiosyncrasies” with this pregnancy, or should I say what I now find to be “customary” traits. I am struggling with my decision, primarily because my husband is very inquisitive.
Alas, as I am a person who suffers with rare thyroid conditions, (carrying antibodies for opposite autoimmune thyroid diseases), we will be forced to undergo an amniocentesis at week 22 of the pregnancy. Shall I simply run the chromosome report as well? My heart tells me “no.”
Serious complications from second-trimester amniocentesis are uncommon, however, I am uneasy. (Just a bit of background...) I must determine if our baby carries antibodies for either Graves’ disease or Hashimoto’s disease. If I refuse the amnio, we run the risk of death inutero due to thyroid troubles. My medications must be adjusted and altered to safely treat our baby inside. Elliot was born prematurely due to the fact that my Graves’ disease went undiagnosed while pregnant. Like me, Elliot carries antibodies for both diseases. And, he is here and healthy despite endocrine complications inutero.
Elliot’s diagnosis is non-disjunction Trisomy 21 Down syndrome. Elliot does not have translocation Ds. I know the statistics. In general, the chance of having a second child with Down syndrome (without taking my age into consideration) is 1% in each ensuing pregnancy. Based exclusively upon the fact that I will be 37 when our new baby arrives, the probability of a baby with Ds is 1/225. Hence, the probability of sweet baby number three being blessed with Ds are relatively low. So, why is my husband so inquisitive? Why am I questioning my decision to forgo the chromosome test? Regardless of the outcome, I do know that we are simply blessed to be pregnant with a third child. My physicians said that it was nearly impossible. God had other plans.
Because of Elliot, the limitations of my “heart” have been stretched out a little farther, to take in more of the splendor that surrounds him and our family. If our third gift is enhanced with Ds, I will love him or her all the more. However, do I want to know now...or simply wait to see what God has in store? The question remains.
