The tapestry of the life of a medically complex family

Archive for the ‘kids’ Category

College Freshman – how did THAT happen??

Saturday I dropped my eldest off at college. I moved him in to one of the smallest shared dorm rooms in history, on the ground floor of the “Geek dorm”. After FINALLY navigating the one way maze that led to the parking lot/unloading area, emptying the truck and moving things to the building went off smoothly. The room has CLEARLY not been updated since the 70’s when they added the lovely faux-woodgrain plastic laminate to the top of the permanently installed dresser. The new paint has splattered all the immovable furniture and sealed the “storage” area doors located ABOVE the closet alcoves – well, yes, 7+ feet in the air… convenience at its best!

My son washed down all the surfaces and began unloading while I moved my car to the longer term parking area. When unloaded the contrast was significant between his roommate’s ironed and hung “dress casual” wardrobe and my son’s sweatshirts hung on hooks off the side of the “medicine mirror” installed above his dresser. 2 pairs shorts, 3 pairs sweatpants, t-shirts and a supply of poptarts & vitamin water- the ESSENTIALS of college dorm life!

Leaving him there, I realized this is the first and ONLY time since Space Camp (2002) that I have left him somewhere that was not his Dad’s for the weekend. It feels strange but good, a reward for his growth and development, an upbringing. I am excited and nervous for him as he begins this part of his journey. I know he is going to be wonderful, I just hope HE knows it and can get through the challenges ahead to achieve the success I know will one day be his.

Category:

Big Bro, kids

*Channeling*

I have to write again today because this week has been filled with moments to capture, moments to share, yet it has been FULL making it nearly impossible to get everything written down!

On Friday evening, my oldest spent his last night at home before heading to college Saturday. High school has been the usual up-and-down, back-and-forth, yin-yang that you get as a child attempts to reach a level of comfort with moving off on his own. He has always been good with his brother and sisters but this night was an exceptional one.

He had spent much of the day in his room, sleeping after being up late playing on his computer. When he came down, he came immediately into the playroom to hang out with his little sibs. We ordered dinner and moved to the kitchen for our last dinner before college and he sat there and chatted with the wee ones about their day, their favorite activities and the dinner they were eating.

Just after dinner, while I began getting ready to clean things up & ready everyone small for bed, he began answering his sister’s questions about traveling and airplanes. As he began explaining the “science” of flight, I realized I had stopped moving and was captivated by this boy, becoming a man, and channeling the grandfather whose alma mater he would attend as a student in the next week. I watched as he explained complex physics in words that could be understood by 4 year-olds. I obliged when he asked if he could use my computer to show the little ones pictures of the different airplanes he was telling them about. I smiled as he responded to each question generated with respect and enthusiasm- moving to helicopter topics when prompted by his brother. I wanted to record this, to capture this moment, to preserve it for eternity. I settled for leaning on the counter and LIVING and LOVING this moment- capturing it in my heart. ❤

Category:

Big Bro, kids, Twins

Confession

Here I am on my “uber private” blog (LOL) preparing to make a SHOCKING confession:

I LOVE MY PEDIATRICIAN!  Not some respectful professional feeling- LOVE.

Okay. He’s not “mine”, he’s my kids’. And, no, this is no confession of a tawdry affair. I love him in a way that is no threat to his wonderful wife and children… I love him as the single other person on the planet who is involved in caring about my children’s health and well-being on a regular and very involved basis.

I love him. Not creepy, not [too] inappropriate, not in a “lustful” [EWW] way… a bit Oedipal really- but without the drama of the original story.

This man is a man who LISTENS when I talk about my kids, who shows definite concern for their well-being, who strategizes possible medical or other interventions, who calms my fears when they are high, who shares his level-headed view from “outside” the situation while being linked to the kids who are navigating it. He returns my phone calls directly when I have new info. to share or concerns to follow up on. He is smart, well-researched and seasoned enough to know that it is a good idea to let the latest “trend” be tried for a while before adding this or that testing to his patients’ lives. He admits he is not infallible. He has a similar parenting style and told my eldest: “If you were my kid, I would have you write an essay on why vegetables are necessary.” when my son told him he didn’t eat them because they had little nutritional value. He shares my sense of humor, warns me of pitfalls he has experienced himself with an anecdote from parenting his girls. You can see the love he has for his family whenever he talks about them- pictures of them adorn his offices and his waiting area is filled with his proud display of pictures taken by his oldest daughter while they were on safari.

He is very engaged when we come for a visit. Smiling when talking with my kids, amazed at their progress or developmental feats- on whatever their timeline. He KNOWS them. He really knows them and cares about them & their futures. THIS is why I love him – and NO you cannot have his name!

Category:

kids, Medicine, Preemie, Special Needs, Trach

A little surprise…

Soon after the twins’ arrival they needed airway surgery to open up the area under their vocal cords to allow air to pass over them. The amount of scar tissue that was present would prevent them from being intubated from above in the event their trach failed and their ENT thought it was important to have the surgery about a month after their transition home. I’ll write more about that (and other surgeries!) later because this post has another star: my youngest! [so far]

After the surgery, while the twins were inpatient recovering and awaiting the follow-up procedures needed before leaving for home, I had a visit from the twins social worker. We talked about how well the twins had bonded to me, how their birth family wanted to get a chance to visit in the fall, AND that their bio-mo was again in labor… My kids were 17 months old, their next older sister was 28 months old, and another child was being brought into the world through the same cocaine-tainted uterus that wreaked havoc upon my twins. Immediately I asked if the child was a girl or a boy… and followed with: “it really doesn’t matter but hopefully this is it for a while because I only have so many bedrooms.” With that comment uttered, I began the process of welcoming the fourth of my children into my home. She was a bit better off than the twins gestationally; her delivery occurred in the 33rd week of the pregnancy, making her a “giant” at 4lbs. 4oz.

The Department quoted concerns that my twins were too needy to handle another child- I sent them a slideshow of pictures of our walks along the river, trips to my sister’s, playing with toys in the playroom. The Department has RULES [unwritten] about not placing another child in a family that has children under the age of 2- they delayed matching my new homestudy until the week of my twins’ second birthday. The Department conceded that it would be best to place her with her older sister and brother. She was FINALLY going to get to come home!

My youngest was a tiny babe when I first met her, March 10, 2008, 1 year and 1 day from my meeting of the twins! She was cuddly and snuggly and 8 months old, living in a foster home near where her bio-mo was last seen. Her loving foster parents cried when I first came, knowing they would soon be sending her to live with her forever family. Although we do not speak the same language, I understood the tears were shed for the sadness they felt in knowing they would miss her, as well as to share the happiness of her finding a home where she could grow up with her older siblings. Over the next week, I visited  her daily and brought her brothers and sister into town to meet her and get Easter Bunny pictures taken.

8 days later, the social worker parked her car out front and walked my precious new bundle up the stairs. Youngest lay in my arms and the twins touched her face, held her hand, and brought toys to show her. I scheduled a family photo for that afternoon, knowing full-well I might realize quickly that there was no WAY I was ever going to get out of the house again! The pictures were a big success, all four kids looking intently at the camera, a smile from the teen at how crazy his Mom truly was.

For some time, this is the completion of our family. One day there may be others who join, related or not, but for now the craziness feels full, real, rewarding.

Category:

arrivals, foster children, kids, Momma making, Preemie

Twins

In early March  2006, Trachgirl & Trachboy were born at 27 weeks gestation. Trachboy was born not breathing and without a heartbeat- he was immediately moved to a resuscitation room. Both were intubated and moved to the NICU. Trachgirl weighed just over 800 grams (1pound 12 ounces) and Trachboy weighed just 1000 grams (2.2 pounds). Both children tested positive for cocaine, as did their biological mother. They were immediately taken into custody by state social services.

Over the next 3 months, Trachgirl & Trachboy struggled for their lives as they were fed through nGtubes and hooked up to monitors and ventilators. Trachboy was trached first and was able to go home to a foster home in late June 2006.

Trachgirl was not trached right away. She regularly pulled out her breathing and feeding tubes and it took a lot of supervision to keep her safe. After her time in the NICU, she was moved to a pediatric rehab hospital and her level of airway obstruction was checked. The ENT doing the procedure found an almost completely blocked airway and placed a trach for her as well. After many weeks, Trachgirl was able to go to the same foster home as Trachboy- they were together again.

Both kids were fed through NGtubes, had significant respiratory issues and had many other challenges to overcome. They were legally free soon after going to their foster home and waited in foster care to find their family. Over the first year, they suffered setbacks and hospitalizations but kept up their fight to live and thrive. I saw their cherubic faces, with trach tubes nestled under their chins, on a state photolisting page, and foolishly (& thankfully) thought “these are my children!”. I found out that the state agencies agreed with me and met them just after their first birthday.

Trachgirl was the shy one, leery of new people, remembering the hospitals, the doctors, the people who come in and out of her life; she kept a safe distance during our first meeting. She warmed up later in the visit and played peek-a-boo in my arms on their nursery floor. Trachboy, less aware of a reason to be fearful, lay in my arms, looked up into my face and cemented their places in my heart. As he nestled into me, nuzzling my arm and falling asleep, I knew there was no hope of turning away or turning back- I had found them. We had found each other.

Category:

arrivals, foster children, kids, Momma making, Preemie, Special Needs, Trach

My eldest

It began in a way unplanned, unexpected. 17 years ago I became a ‘Mom’. His arrival was delayed- a preview of his reticence to join something new that has continued throughout. He protested his arrival, forcing the use of strong medications and other “encouragement”. When he arrived he surveyed the 15 medical personnel wondering “what the heck are they worried about”? After an 80 point heart rate drop that lasted his final 11 minutes of incubation, he literally looked around and relished the chaos he had been able to cause.

He grew as a wonder- bright, inquisitive and ever tall for his age. A quiet, only-child who excelled through elementary school. A teen who went through the usual lax response to the requirements of his high school coursework, rarely turning in neat and orderly homework, occasionally not turning it in at all…  Yet, in 3 weeks, he heads to N. University, seemingly ready, planning to work hard to get the co-op work he wants when that part of his program begins next spring.

What I want to tell you about him is that he is amazing, he is caring, he is the best work I have EVER done. I marvel at him and hope I can do nearly as well with my other 3 – when he isn’t currently deserving to be killed because, after all, he IS a teen-ager! When he is “on the amazing channel”, I see a caring young man who plays with 3 siblings who joined him here only a short time ago. Siblings who usurped his reign on the “only child” throne. A brother and 2 sisters, years his junior, whose lives are complicated, time-consuming, receive his love and attention daily. He accepts them as I do: full-fledged family members who share our hearts but not our biology. It is acceptance beyond his years, beyond what others and older relations are capable. He checks in when he’s away, reads stories and provides good night hugs. I see him and know I have done my job; soon this man-child will enter the world an adult who contributes to the world, caring for others, defending those less capable or fortunate. I love the view I have of his story unfolding.

Category:

arrivals, kids, Momma making, Uncategorized