A Special Note

I got a letter from one of my student's yesterday. He had taken about a week to write it- working on drafts and having another teacher read it over. He wanted to write me because news of Miles is starting to reach the students. They were all so invested in the pregnancy-making me eat snacks, take breaks, and use the elevator instead of the stairs-though I think they just wanted to ride in the elevator. When this student heard about Miles' Down Syndrome, he asked his teacher about Down Syndrome and did research on the Internet. In his letter, he basically said he missed seeing me in school but knew I was happier at home and that that is where I needed to be right now. He also told me that my family is in his prayers and that my little "bundle of joy" would be fine. He chose decorative paper for the letter and took his time with his penmanship. The hugeness of his gesture is just hitting me. I have often wondered if I really make a difference with the students I work with, if I am really helping them. There is no real instant feedback in the classroom setting. Test scores only show part of the picture. I teach for academic and social success- the brain and the heart. Getting this letter has really moved me. Not only has this student made me feel successful as a teacher, but he has lifted my heart- a talent that many people never develop. His sensitivity is a real treasure. This student really cares about me, and his concern has just validated my last 3 years at my current school. I couldn't ask for anything more.

A Real Guitar Hero in the Family

My family tree can now add a folk star to the branches. Joe Crookston, who is married to my awesome cousin Kathryn, played at the Kennedy Center this past weekend. I just had to share this news. Three weeks ago I heard one of his songs on "The Folk Sampler" with Mike Flynn. I started screaming- Jesse thought I was had injured myself due to my frantic tone. However, I was yelling, "It's Joe!" Joe is a soulful writer and performer. His songs tell stories that need to be heard. So- go hear them. I am putting several links about Joe on this posting. You can watch his performance at the Kennedy Center if you have RealPlayer. His MySpace page also plays songs. (I wonder if knowing Joe puts me any closer to Kevin Bacon.) Joe also does an excellent cover of Supertramp's "The Logical Song" on his newest CD. Miles and I sing along to it.

http://www.myspace.com/joecrookston

http://www.kennedy-center.org/programs/millennium/archive.html

*play the show from 5/25/08 or search for Joe Crookston on the page

http://www.joecrookston.com/

http://www.youtube.com/watch?v=jpkOb96P-ho

*Joe rockin' out some Supertramp on YouTube

The eyes have it!

Finally, a doctor's visit with no bad news! Yesterday Miles had his first ophthalmology appointment. Poor little man had to get drops in his eyes, which was the worst of it all. The doc said, though he might need glasses in the future, he is doing fine now. Miles' right eye is a little lazy, but that runs in my family. (Lazy eyes- not laziness!) We go back in 4 months to check on the right eye. The doc seems to think that it might correct itself- simply a newborn thing. Most babies tend to cross their eyes as their eye muscles get stronger. It's kind of cute when his eyes cross- like when he watches bubbles floating down or when he tracks a face moving closer. Actually, everything he does is cute. Ahhh. . .the magic of babies.

My little star man

We've always known that Miles is out of this world; now we have proof. Miles' great Aunt Martha has bought a star for him. A real star! "Miles Thomas" is located in the Ursa Minor system, aka the Little Bear, which lends itself to a cute new nickname, coincidentally. So if you are ever in the neighborhood, have a rocket ship and freeze dried ice cream handy, swing by Ursa Minor RA 14h8m11s 76 degrees 49 minutes, and sign our intergalactic guest book.

Fashion Forward

Memories are meant to be made of substance. This memory is made of tiny metal teeth and puppy feet. Last night Miles wore his first zippered outfit. So far, the little man has only rocked clothing that snaps, some with hundreds of snaps that foil any quick midnight diaper change. Ahh the zipper. . .so smooth and sleek, a miracle of modern fashion. This zipper is on a pair of big-boy jammies that have puppy heads on the feet. Too cute! What blows my mind is that I fixated on the zipper- my son made it to zipper clothing. Not 2 weeks ago, it seemed like his life became more fragile than an eggshell on a bowling alley. His diagnosis of Down Syndrome and the news of his congenital heart defect became dominoes tumbling down our sense of normalcy. Now, something as simple as a zipper, brings us back to homeostasis. Zipping Miles up made me feel stronger. We are no longer a family that simply snaps. We are a family zipping into the future! If we can conquer zippers, we can conquer anything one tug at a time.

Miles is doing the typing!

hk 0oooooooo...xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxccdvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvv\
fcdcxd q bv cccccgbvctrcvbdx oficxbvlijkko999999 cccc c s

Blue Genes

"When the going gets weird, the weird turn pro." -Hunter S. Thompson

This quote has been a personal mantra for me for many years. Why be normal when life on on the outskirts is always more vibrant? We remained in true gonzo form yesterday at the geneticist's office. Miles' doesn't have your standard trisomy 21. Nope, he has a rare form in which his second 21st chromosome is actually doubled. When you look at his karotype results, you see a single pair for 21, but one of the pair is doubled in length. What does this mean? I am still researching the topic, and I am struggling through all the genetic mumble-jumble. I topped out with the Punnet square in high school. Yes, I can accurately determine what color the geranium will be, but I cannot decipher Miles' condition. Jesse and I will now have our blood tested to see if either of us are carriers of extra genetic material. Chances are slim, but this could mean that Miles' trisomy 21 resulted from one his 'rents having too much DNA. If that is the case, any future child would also develop trisomy 21. If either Jesse and I are positive, there are no physical consequences for us- no negative effects on our phenotypes. However, that bonus DNA will harm our offspring. This, like I said earlier, is very rare and not likely the situation. We are going ahead with our personal genetic screening because we would love to have more children. However, if pregnancy comes with guaranteed trisomy 21, the that price is too high. The geneticist cautioned us from getting tested, but we assured her that we are only testing out of curiosity. Our results will have no impact on our care for Miles. He will always be our top priority. We also know that our results will result in no change of his condition. Regardless of how he developed trisomy 21, he still has Down Syndrome.

On the much brighter side, the new doc said Miles is doing great. He looks and sounds wonderful. His growth is right on schedule. We are going back in 6 months to monitor his progress.

Moving Foward

I met with a representative with Child Development Resources today. She paid Miles and me a home visit, which was a nice treat over a doctor's office. I signed many consent forms- consent to release documents, conduct evaluations, provide services. . .all documents that I know from the other side. Today was quite the paradigm shift; I was given a copy of parental rights. Just a few months ago, I was giving those rights to other parents. Never once did I imagine that I would being reading those rights as a consumer- not simply a provider.

Hopefully, Miles will be evaluated by an occupational therapist, speech therapist, and special education teacher by next week. And immediately following the observations, we will write an IFSP (Individual Family Service Plan), an IEP for your family. The CDR rep said we will likely being receiving services (OT, speech, ect) on a weekly basis at our house. I will take anything I can get for Miles. I do not want to lose any time; the quicker his educational/ developmental foundations are in place, the better his chances at success are! Early intervention is critical. I am so glad that CDR is in the Williamsburg area. I already getting a good vibe from these folks.

We are meeting with the geneticist tomorrow at CHKD. This is looking like a marathon appointment- 2 hours. I am packing snacks.

Back to Work for Jesse

Jesse returned to work today. He spent last week at home, with me and Miles. I am so glad we were able to adjust together. We spent many hours, just the 5 of us (dogs included) snuggled on the bed- crying, hugging, and simply wondering. The dogs contributed many licks to the mix; we call them "puppy kisses." Being together recharged our batteries and gave us the strength to continue. Additionally, both sets of grandparents were present- in full force. When the going gets tough, the tough unite over pizza and Pierce's BBQ. We are not just family; we are friends.

I know Jesse hard a hard time leaving this morning. He lingered over a napping and full-bellied Miles for several minutes before kissing me good-bye. My two men have such a strong bond; Miles is permanently linked to Jesse's heart. Despite all of our recent set backs, Jesse still attests that Miles is his world (his words exactly). We both agree that he is the best thing that has ever happened to us. Maybe that is why our hearts hurts so much; this intensity can swing in many directions.

A Reflective Sunday

Things have finally settled down a bit. Jesse and I both agree- this has been the worst week ever, but at least it is over. Miles is doing wonderful on the apnea monitor- no indications yet of actual sleep apnea. No alarms sounding during the night. His breathing looks good on the monitor and sounds good to my ears. He will remain on the monitor until his next visit with the cardiologist- just to make sure. So far, this looks like it might just be a case of weird infant breathing. Thank God.

We are meeting with the geneticist this coming Thursday. I was just filling out the paperwork for the appointment. Hundreds of questions about my pregnancy- which was completely normal. I did everything I needed to do. . .then some extra credit work because I am such an over-achiever. For example, I never dyed my hair (which was like holding my breath for 9 months). I ditched nail polish, food preservatives, glorious caffeine, heeled shoes, fast food, and loud music. Sleep was courted in abundance, though I got plenty of exercise chasing after my 8th graders. I did everything I was supposed to do, and yet, my body didn't hold up its end of the bargain. In keeping true to my type-A personality, I am also a control freak. Miles' diagnosis is throwing my inability to control life in my face. Sometimes, actually most of the time, life is out of our control. I am quick to freak out in situations where I feel powerless or at the mercy of someone/something else. My son is who he is, and I can't change that. I need to realize that his Down Syndrome is not my fault. Logically, my head easily accepts this fact. Emotionally, my heart is breaking because I feel like I failed my family. Once I truly understand that it is nature, not me, calling the shots, I will be able to let go of the pain.

Another Road Bump

Feels like we (all) can't catch a break. Last night I realized that Miles also has sleep apnea. Tonight, a nurse is coming over with a monitor for us to use while Miles sleeps. It will sound an alarm every time he stops breathing. If tonight is anything like last night, we will hear the alarm often. We are going to the doc's in the morning to review data from the monitor. His doc has been great- she gave us the option of keeping Miles at home for observation or admitting him to the hospital. She said our week has been terrible enough- we should keep him home tonight. I agree. I need my silly little biscuit man here. That goes for Jesse, too.

A New Perspective

I said, "This isn't fair."
Jesse said, "This isn't fair to Miles."

The morning after

Miles greeted me this morning with a devilish smile! His grin was huge, and as he stuck his tongue out he pointed it at me. Too cute! I really needed that smile.

I can't sleep.

As I lay awake in bed, I am soothed by Miles' chortling on the baby monitor. 3 am has always been his favorite time of day. While pregnant, he would really run my womb through the paces then. He was also born at 3am- a man of true consistencey.

Jesse is currently on bottle and diaper duty. I sat with them for a few minutes and rewarmed Miles' bottle because he has learned that warm bottles are much tastier. He is really being active- making too many cute faces and sounds for my sad heart to handle at the moment. I had to step outside for some air.

While outside, I resolved that I needed to write about my feelings. Let me share with you the thoughts I have running on repeat:

-My brother Clark, Miles' most amazing uncle and a true wordsmith, put our situation into a perfect analogy earlier tonight. "You and Jesse have been thrown a fast ball to the brain." He is referring to the speed and severity of which we have received this news, and Clark is right. Not a week ago, our family was still living in a reality where our son was healthy, and life was status quo.

-Also, while talking to Clark, I had a revelation. I told my brother I would totally exchange my life for my son's- that I would give my health for his health. I know with my whole being that I am prepared to do anything that my son requires. Guess this is what it means to be a parent.

-While sitting outside moments ago, it came to me that the Yin & Yang symbol is an excellent sign for my family. In the brightest of lights, there is an element of darkness, an undercurrent of fragility. And in our darkest moments, there is always hope. Right now, Jesse and I are sitting in darkness. Miles is our beacon of light, our source of hope, and our reason to be strong. We are living for him as I think he is living for us.

A matter of the heart. . .

Yesterday's cold and rainy day was the perfect backdrop for the events which occurred. It was like the sky was crying with us- grieving as we grieved. Today has been a brilliant and sunny day; a new warmth warming our house. Knowing the health status of our son made getting started this morning so much easier than many mornings past. We left for our appointment with the cardiologist feeling renewed and hopeful.

I wish I could say that the good weather was an accurate omen for our visit with the cardiologist, Dr. F. Sadly, we have learned that Miles' Trisomy 21 has affected his heart. Miles was diagnosed with a Ventricular Septal Defect. VSD is an "opening in the wall that separates the two lower pumping parts of the heart." Miles opening is large enough that surgery is required. Dr. F said we will probably be taking Miles to Charlottesville (UVA) by the end of July for the procedure. In essence, his heart is doing double duty- it is re-oxygenating oxygenated blood. There is a silver lining to our news. Miles exhibits no exterior symptoms of heart defect. His weight gain is phenomenal. In two and a half months, Miles has doubled his birth weight. He now weighs 10 pounds- and technically, he should not be doing so well. He is also very strong; he rolled over on his side during the examination- a wonderful sign of progress.

How are Jesse and I doing? Not so good. This has been a very painful day. We are slowly contacting family and friends with the news. We have no intention of keeping Miles' condition a secret. We are proud of him- extra chromosomes or not. Not 5 minutes ago, as I sat down to start this posting, I was sobbing. Now, I feel better having committed my pain to printed word. I wish we could have all of our dearest friends over to hold and love our child. However, we must limit Miles contact with germs. He must not catch any viruses before his surgery. Additionally, we will have to maintain the same visitation regulations until he fully recovers from the procedure. I encourage you to e-mail or call us. Even respond to this blog- I will be updating frequently.

A New Day

Last Wednesday, at Miles' 2 month check up, our pediatrician Dr. G threw Jesse and I the biggest curve ball of our lives. Dr. G said that during her examination of Miles she noticed several areas of concern- areas that indicated a possible sign of Down Syndrome. I cannot tell you how shocked we were to hear this; especially since I am a special education teacher. She commented on his facial structure and several behaviors- specifically his delay in smiling and his continual tongue thrusting. We immediately went to a branch office of the CHKD and had blood work done.

Dr. G said we should know the results of the test, a chromosomal screening, by Friday. Friday came and the lab work was not completed. I went to my OBGYN's office and had all my prenatal records copied. None of my blood work, sonograms, and even consultations with a prenatal specialist indicated any areas of concern. However, my optimism faded when I began to research facial structures of newborns with Down Syndrome. I compared Miles' pictures to those of children with Trisomy 21, aka Down Syndrome. It was at this point I knew our destiny had shifted.

Looking at Miles, I never saw anything less than perfect. I had noticed some developmental delays which I attributed to his low birth weight and early arrival. However, as any parent can attest to, you tend to see what you only want to see. And why should I have seen Down Syndrome- we had made it to the 2 month marker without nary a mention of the disorder.

Well, today is a new day for our family. Jesse and I learned that we are not simply parents of a child. We are now parents of a special needs child. Our beautiful and glorious son Miles was diagnosed with Trisomy 21 this afternoon. I am comfortable writing and sharing this information because I have spent the past 5 days wrestling with the inevitable. Last night, in my continued state of sleeplessness, I knew that Miles' test would return with positive results. I also accepted the fact that Jesse, Miles, and I are simply at the start of a new existence together. I have so many emotions that I will have to deal with- many of which will not be pretty. However, I also promised myself to feel these emotions completely and to take ownership of them. In less than a week, I've gone from dreaming about Montessori and Waldorf schools for Miles to fretting about a future filled with IEP meetings, occupational therapists, and more medical specialists than I can imagine.

My saving grace has been the fact that I was raised in a family that believes things- positive and negative life events- happen for a reason. Now, at this point, we are beginning our search for the reason. Though one question has been ultimately answered- I've often wondered why I became a special needs teacher. I never intended to be a teacher; I never took any education classes during my undergraduate days at W&M. But life set me on a course that has taught me patience and acceptance of those individuals that live and think outside the norm. I never in a billion years would have imagined that my work skills would be required at home.

My plan is to share our life with Miles through this website. I cannot do this alone, nor would I choose to do so. We have spent all day with our parents- simply holding and embracing the child that will show us a new way to love and live. Please include our family in your thoughts and prayers as we embark on this adventure.

My Mother's Day Present

Having a child opens and touches your heart in so many new and unimaginable ways. Just in the past 24 hours, I have felt every emotion possible as a new parent. I love my son so much that I ache- with a beautiful and painful intensity. When he is in pain, I can hardly breathe. When he is happy, I am speechless with joy and thankfulness. Our bond strengthens by the day. With his birth, I have been reborn into nature- awakening instincts and an emotional growth I didn't even consider myself capable of. . .and I get to celebrate Mother's Day for the first time ever this Sunday. Miles- thank you for making me a mommy- for making Jesse and I parents. Miles, my bright wiggling infant, is the best gift I have ever received.

Miles- At Rest

The final picture is from an earlier night. Miles is wearing his sleep sack- excellent wardrobe choice for quick at-night diaper exchanges. As you can see in the picture, Jesse is just as good at keeping Miles awake as he is helping him sleep. Sometimes I have to separate the 2 when they start playing late at night. Jesse doesn't just have a son, he has a buddy.

Miles- At Work

He is sucking his thumb!!!!!!!!!!!!!!!!!! This is a huge step because
typically he gets a finger or simply plasters his entire hand over
his mouth, which is quite hilarious to watch. Baby steps.

I loved watching him discover each toy and its sound effect.
He was totally enthralled. I wish rattles did that for me, too.

Hooray for the Bopie pillow- it's mommy, Jr.