I've never met Christine Samson Telford, but our connection goes way back. Her husband, Ron, grew up in Candor, NY with me. Ron's mom was my first grade teacher. Ron's family went to our church. Ron's family was active in the community theater group my mom directed. In fact, Ron's little sister, Hope, was so named because of my mom, Hope.
But I got know Chris not through any of those connections. I got to know her by stalking her Blog. See, this Marvy Mom of 3 gave birth to her third little guy 18 months ago and he was born with, among other complicated things, a cleft palate. He needed a great deal of medical attention for a heart condition, which was actually more harmful to him physically than the cleft palate. My mom's church naturally began praying for the family. Mom posted a link to Christine's blog on her Facebook page and I was hooked. I would be up late at night, my husband in the other room asking “when are you coming to bed?” and I would reply, “Sshhh! I'm saving this baby!” I couldn't believe what Chris and Ron were going through. And what I really couldn't believe was how amazingly they were handling it. Take a few minutes and marvel in all that Chris Telford is! And when you're done, I hope you will follow her Blog – The Telford Family. I promise you will be as captivated by it as I am!
Explain Hank's hospital stays/medical “excitements” to date.
Henry has had approximately 10-12 hospital stays. I actually have this in chart-form with "date admitted," "reason for admittance" and "date discharged" because I am asked this question on so many forms. For essentially the first 4 months of Henry's life, he hung out in Philadelphia at their Children's Hospital. There he underwent open chest surgery to receive a pulmonary artery band on his heart at 4 days old. A month or so after that, an infection took over the incision site in his chest and he had to be 'reopened,' cleaned and given a bunch of antibiotics. Later, he then got a cold, flat-lined a few times (eek!) and there was talk of a pacemaker; I suggested we chill on that option and see if he got better - and he did! Next was the G-tube, naturally followed by great reflux issues (prevalent in heart kids) and was converted to a GJ-tube. Still the reflux issues, so back to a g-tube combined with a stomach surgery called 'nissen fundoplication,' which wraps his esophagus around the top of his stomach to wholly prevent reflux/vomiting entirely. Finally, he's on the mend and comes home for good (time frames are all wonky here, but you get the gist). Once home, i notice his eye is larger and quite watery. Congenital glaucoma was determined and thus eye surgery. Then we addressed the cleft lip/palate with a preliminary lip surgery, followed in a few months by a refined lip surgery and palate repair. Then, on Father's day this past June, Hank decided to turn blue and stop breathing - several times. We spent a week at Golisano Children's Hospital in Rochester, and seizures were surmised and he was consquently put on meds for that. Just this past Monday, Hank and i returned with questionable 'new' seizure activity and spent several hours in the ER hooked up to another EEG. It was determined to be a physical 'tick' of sorts, NOT seizures, and sent home. AND NOW WE ARE IN THE PRESENT! Henry's heart defect absolutely needs repair but there is no date planned. He's doing well, getting bigger, and all is good for now. An MRI is in the works for October to get a crystal clear look at his heart and see where we go from there...
If you could go back in time and give a pep talk or advice to the “old” Chris and Ron right after Hank was born, what would you tell them?
Believe it or not, i wouldn't change a THING about how Ron and i handled the surprises following Henry's birth. The minutes, hours and days following, including the abruptness of LIFE changing before us, including my very-unwanted 3rd c-section and the lack of adequate recovery time, including the unknown future of all that we know NOW... It was all handled in a way that I think shocked everyone around us, but only solidified, in my mind, my choice of a life partner in Ron. Every new corner we turned, with increasingly discouraging news, was handled with grace and patience. I attribute that behavior to the true nature of Ron and i and the combined 'force' we create as a couple and ultimately, as a family. When i was teary and feeling very down, Ron was there with a smile and the world's best hug. When Ron was angry immediately following the meeting with the genetics team, I was there to comfort him with All That Henry Will Be in our lives. Always a balance. Naturally.
I might give a pep talk to the old (Ron and) Chris BEFORE Henry's birth. We'll say a week before. I would sit me down with my favorite iced coffee in a dimly lit room with some Jack Johnson playing in the background and say "Chris... honey... you aren't going to be able to have that natural birth that you fought so intensely for the past 10 months. And you're going to have a BOY, not a girl you'll name Jocie Dan. And he'll look funny to you, but he'll melt the heart of every single person that comes in contact with him, despite his appearance. The news you get will be life-altering, but in many ways, it won't change a thing. Go ahead and cry, but in the end, you'll be smiling more." ~ ~ Maybe that sounds too cheesy and way too Lifetime-Movie-ish, but it might have helped a touch. [So easy to write 18 months down the road, of course...]
I find your blog exudes patience. Were you always a patient person or has all that you've been through in the last year-and-a-half forced you to find a patience you didn't possess before?
I WOULD have considered myself a patient person pre-Hank. I've always said to friends that when a situation arises that is emergent, or alarming in nature, my blood pressure immediately LOWERS and while adrenaline kicks in, I think more clearly than in any other situation. I can't find my keys or glasses on a day to day basis, but the moment my kid's eye is gushing blood, or my father calls me from the hospital quite distraught over my mother's bypass surgery, I am the calm in the room. I focus, i listen and i do what i have to do.
"You do what ya gotta do." I must have said this 100x to everyone who says, "How do you do it?!?"
My blog entries are so intricate in medical nature because i take a natural interest in nursing and "that whole world." Many many times, in those first months in Philadelphia, at Hank's bedside, i daydreamed of being That Nurse. "I could SO do this job." And so I would ask questions. Not so much to file away for when we got home, but because i had those gals at my fingertips to get the inside scoop on a world that fascinates me. One nurse, Maeve, I'll never forget her - - she was the one showing me how to change and dress Henry's g-tube site for the first time post-surgery. I pulled away the gauze and was flooded with emotion. The smell, the look, the sight of my own hands shaking, the tears dripping onto his belly. And she spoke calmly, rubbed my back, and told me i was the best Mom in the world. *I* could be that nurse to others. It has to be an incredibly fulfilling and simultaneously frustrating job. It is something I'd like to look into once the boys are older and in school full time...
What's happening with Hank's health now technically (what the medical pros would say) and practically (how it effects your life) speaking?
"Technically," now, in Henry's life: Henry is delayed, which means that while he is 18 mos old biologically, he is functioning at about a 6 month old level. I imagine the two ages shall grow farther apart as he gets older. He eats primarily, and for whole nutrition, via a g-tube into his belly. He is on three medications: one for calming reflux (Prevacid), one for controlling his secretions, and one anti-seizure medication. All three are given at noon and midnight and the secretion med at the 6s as well. He eats 4x a day for about an hour and then one long 10 hr overnight feed that pumps slowly in while he sleeps. He receives three therapies twice a week, each therapy lasting 45 minutes: physical therapy (gross motor skills), occupational therapy (fine motor skills and socialization) and speech (at this point, getting used to feeds, touch and practicing consonant sounds). Henry only says thousands of variations of the word "ma." While Hank is still not sitting upright on his own, a typical child his age is most likely running around and wreaking havoc. While Hank is only getting small tastes of mushed fruit, a typical child his age is eating almost everything in finger-sized portions. While Hank is just learning to reach for toys and alternating said toy between hands (or holding something in each hand at the same time), a typical child his age is probably touching everything you don't want him/her to. ~ ~ "Practically," there aren't too many things that are crazy because, as mentioned, Henry is essentially a 6 month old, just a little bigger. He's starting to outgrow his car seat carrier, length-wise, but we are in denial of this because he still needs it for neck/trunk support when we take him out of the car. We will hit more practical obstacles as Henry grows. His motor delays are sure to be more challenging as he physically gets bigger. When he transitions over to eating more solid food and less via g-tube, that will cause a 'shift' in our schedules as it will take more time and focus.
Even with the wild ride you've taken with Hank over the last 18 months your two older boys, Sam and Thom, clearly feel and clearly ARE loved and adored. How do you and Ron manage to maintain a (relatively) normal life for them?
Thom and Sam are so loved and 'normal,' i think, because OUR FAMILY did not choose to go the route of highlighting Henry's situation. I've met many "heart moms" at CHOP who have now become very public, very outspoken advocates for their children. Many of these woman are single-kid moms, some are not. While i thoroughly commend them for their journey and drive, I am not that mom. And so, i think, in NOT bringing great attention to Hank, it has created a 'normalcy' in our home that i would have wanted had Henry been born "normal." Yes, of course, we've had many hospital stays, but we go, we cope, and we come home. Henry goes out in public and to the grocery store and to everywhere we need to go; it would be cumbersome, to US, to keep him secluded and away from germs, despite his decreased immune system. Could that mentality have caused his admittance to the local hospital for a week with pneumonia at Easter? Perhaps. But perhaps he was bound to get sick because Sam and Thom go to school/daycare respectively. And i'm not going to homeschool my children. So there you have it. Basically, we're just going about our lives. Sam and Thom receive a ton of special love JUST FOR THEM too, which i would have done no matter what. I think its important to have 1:1 time with each child and not always treat them like a group. I also think I'm a mom who doesn't put up with sh*t, and so i yell, and i punish, and i reprimand. But then there's a ton of hugs and lovin, so we must be doin something right!
What are your sources of strength?
Three sources of strength: Ron, LET'S GET OUTTA HERE, and crying. Let's break em down.
- Ron is my rock. Half the time he probably doesn't know it. Ron is EXCEPTIONAL with my emotional schizophrenia, and that's priceless. He doesn't roll his eyes, he doesn't make fun. He just smiles, and hugs me, and listens. He's also a very good head-massager, and its amazing how 5 min of that does the trick!
- Something else that is very important to me and i hold sacred is Mommy and Daddy Time. I aim once a WEEK for Ron and i (or just me) to get out, away from the kids. GUILT-FREE. I think its healthy and its reboot time. It doesn't always happen once a week, but rarely do TWO weeks go by. Once a month is not enough, imo. And our kids understand. There are no melt-downs. They just know its time for Mommy and Daddy to go do their thing. And so FRIENDS are a huge source of strength. They are there to help, to listen, and to provide the much-desired laughter i crave.
- A good cry goes a long way. It's a way of draining all the sludge and heavy crap, cappin the plug again, and refilling the bucket with crystal clear goodness. Plus sometimes it's out of my control, what, with the whole FEMALE HORMONE thing and all.
Tell about some Marvy Moms that you know.
Of course the biggest Marvy Mom that comes to mind is my own mother, Pat, who passed away from a ton of health complications (and bad habits) a month after Thom was born in 2008. I miss her all the time. My mother was limited physically, but was never weakened mentally, and SHE was my rock my entire life before Ron. She endured my many hook-ups and break-ups I would 'burden' her with via phone, but most of all, she was fair and true and genuine with me. She was the poster-child for Patience. She had a gift for being my dear friend AND my mom, never blurring the two roles; I strive to create that balance with my own children. ~ ~ Another Marvy Mom is Ron's mom, Shirley. She has helped our family IMMENSELY during all these crazy hospital stays and i KNOW my kids drive her batty a lot of the time. But she knows she's needed, and sometimes her bullheaded nature pays off in the BEST way possible, as did with feeding Henry by mouth. She took the reigns on that happening, and i will always commend her for that. ~ ~ And, of course, i meet a ton of Marvy Moms all the time. Moms of multiple kids, keeping the house clean, keeping everyone happy, including themselves - THAT'S SOME FEAT! I know powerful Heart Moms. I know a mom who went through A LOT to adopt the child they now love. Lesbian moms. Cancer moms. The list goes on and on. THEY'RE EVERYWHERE!! I'm among MASSES!!! :-D Mom's rule the world, let's face it.
This has been fun. Humbling, really. I can't wait to tune in every Monday to see the next highlighted Marvy Mom. :-)