Today is February 28th - RARE DISEASE DAY ...
We don't need to just wait and share our stories that "one day a year" ... we should all be sharing our stories all the time, and that's what I really try to do with the boys and their stories. (If you are going to read this - PLEASE PLEASE read all the way to the end.)
When a mom (and dad) find out they're pregnant, never in a million years do you think that you are going to be one of "those" people who have a child with medical issues. You don't expect to have complication, or premature births, genetic tests, life changing news .... words that no parent should ever have to hear and that just changes your whole world. All of it.
I fought a long heartbreaking battle to have the four boys I gave birth to. I was a teenage parent - I got pregnant with Calahan, but I immediately suffered a miscarriage, only finding out several weeks later I was still pregnant and it had been twins. After Calahan was born I had four more miscarriages, and I didn't have a pregnancy that stuck until he was five years old. This was Noah, but it was very clear that the pregnancy was not going as it should be very early on. Through an amnio we discovered that Noah has a very very rare genetic disorder called Mosaic Trisomy 16. If it had been full trisomy, he wouldn't be here, however; I was told repeatedly that he would not live regardless. He was born weighing only 1lb 12.2 oz and was 13 3/4 inches long. He proved them wrong and he thrived. After Noah I had seven more miscarriages before getting pregnant with Nathan. I had gotten a divorce from Noah's biological donor and met Dennis. Surely odds wouldn't be that I'd end up with another medically rare child. But that's exactly what happened. Nathan's pregnancy mimicked Noah's in so many ways, but was also pretty different. The amnio came back "clean" and unable to detect any sort of genetic issues. Though we found out he had a 2-vessel cord and something called "Dandy Walker" ... Nathan was born weighing 3lbs 4oz and was 15 3/4 inches long. He was born with a cleft palate and various other things. Regardless... what are the odds of having two significantly rare medically challenged children with two different dads? (I had one miscarriage after Nathan before I got pregnant wtih Kaedyn, and then three more after. 16 miscarriages, four biological boys, and the boy we adopted <3 - and DB's daughter whom we hope will come into our lives-)
Both boys have a long list of medical issues.....
NOAH'S MEDICAL ISSUES:
Medical Issues we have dealt with that may not be a big concern at the moment: severe asymmetrical IUGR, low fluid, small poorly functioning placenta, heart deceleration, bilirubin in amniotic fluid, Low Micro-Preemie Birth Weight, On Vent for 40 hours, Brachycephaly craniosynostosis, enlarged right kidney, ASD & VSD (3 holes in his heart all together), eye pupils shaped like footballs, Hypospadious (fixed surgically at 1 year), Natural Circumcision, Hyperbilirubinemia, he had both Apnea and Bradycardia (Brady’s he had, Apnea he didn’t start until a few weeks before his due date)... Brain scan at one point showed some fluid on his brain that was later declared a "variation of normal", umbilical & double groin hernias (fixed surgically at 6 months), C-DIFF bacterial infection from antibiotics and started to go into Kidney Failure, Broken Nose, Gastro issues (vomiting same time every day for years) .... He has had surgeries to repair his hypospadious, hernias, and to put in ear tubes, also dental surgery... and he has been put in the hospital/put under for countless tests.
Medical Issues we are currently dealing with: Mosaic Trisomy 16, Glomerulonephritis & Hematuria (both kidney issues), Hearing Loss (in his left ear, he has a hearing aid). Ocular Hypertension (high pressure in his eyes). Fine Motor Delay, Mixed Receptive-Expressive Language Disorder, Anxiety, ADD, Dyslexia & Dysgraphia. He is on the spectrum (ASD) in the "Aspergers" range.... oral sensitivity issues (taste & texture)... sound sensitively issues... speech delays....low muscle tone, tone issues from his hips to his toes & Supinated feet, Sensory Processing Disorder, environmental allergies, braces (for both his teeth and his feet!), skin growths/moles that are being "watched," he has ongoing Speech, Occupational, and Physical Therapies .... he homeschools due to having a poor immune system and catching everything he's around, missing more school than being there. Pre-Hypertension. Glaucoma.
NATHAN'S MEDICAL ISSUES:
Medical Issues that we have dealt with and that we are currently dealing with: He is 7 years old (2014) and 28-30 lbs (depending on the scale) and 3 foot 4 inches (103 cm/40.6 in)…..In Nathan’s short little life, he had been diagnosed with the following: 2 Vessel Umbilical Cord, Low Birth Weight, Hypospadious, Natural Circumcision, Hyperbilirubinemia, Soft Cleft Palate/High Palate, Aortic Septal Defect (healed itself), Feeding Issues, Torticollis, Webbing of the fingers, Hydrocephalus, Bifid Uvula, Dandy Walker Variant (Missing Vermis in his cerebellum), Polymicrogyria (another brain malformation, meaning many folds, DR says the front of his brain looks like a bunch of grapes on MRI), Flat Feet, Tone Issues, Undescended Testicles, Russell-Silver Syndrome (a type of Primordial Dwarfism/growth disorder), Human Growth Hormone Deficiency, Scoliosis, Failure to Thrive, Apraxia of Speech, Non-Verbal, Seizures (when sick), Mild Hearing Loss, Velopharyngeal Insufficiency (VPI), Migraines, Asthma, Allergies and Autism. Broken Nose (2013)
In 2016 Nathan's diagnosis of Russell Silver Syndrome was taken away. He is currently and ongoingly going through extensive chromosome and genetic testing in hopes to give us a solid diagnosis. We have no "umbrella" diagnosis now but his Genetics doc is certain there is some sort of chromosome abnormality.
Age 9: weight is 45-47 lbs & 3 ft. 9 inches.
Things get added to the list, sometimes they change...... but this is a fact... something you only understand if you become one of these parents who are in this special community of other parents who "get it" because they've been through it themselves...
These children who have to live their lives knowing absolutely nothing more than the hand they were dealt, this isn't a "normal" but it is THEIR normal because it is all they know........ THESE KIDS teach us more than we could ever teach them, they bring MORE JOY into our lives then all the heart ache and worry ... It is a blessing to know these kids, to be their parents, to watch them grow, to have the honor of living their lives with them. It is an ABSOLUTE amazing thing to witness the MIRACLES that my children are and have been. The amount of PRIDE I couldn't even begin to express because I have watched these boys tackle things that adults can't handle and to step forward with fright hidden behind bravery ....
I wouldn't change them for anything - I wouldn't change one hair on their head - BUT not wanting to change who they are doesn't mean that as a parent of a special needs child you can't wish that things were different for them too. I don't like seeing my kids in pain - all the time, I want to scream every time I have to talk my child into allowing someone to do something to them that they are terrified of or that I know will hurt them, I would rather choke on begging them to be brave and watching the pleading in their eyes as waves of pain envelopes them. If I could *fix* those things that cause them pain and threaten their lives without changing anything about who they are as a person - I WOULD IN A HEARTBEAT.
I don't think people realize just how hard it is on a family to have to watch your children (sibling, grandchild, nephew/niece, etc) go through things like this - to live with the constant fear and worry that we go through. Sometimes it's hard to sit there and think "must be nice" to have such a "normal" life and not have to plan out every "what if" scenario that might happen when you leave the house just so you can be prepared.. just in case.
I have been accused of doing things like abusing my kids - making them sick on purpose (munchausen by proxy) - having people call CPS on us because they feel as if - not living in our house/living our lives - they know that our children need to be taken away because we are somehow causing their medical issues. I've had friends turn on me, family ignore me, and people just stop "caring" ... People start to complain about my being "too negative" because they don't like HEARING or READING about the boys medical issues. They feel I should focus on the positive things in our lives, and trust me - when I say - WE DO. Here is the difference. Because of our kids medical issues, our lives literally REVOLVE around the medical issues going on with our boys (and our family in general.) We don't CHOOSE to be negative - we are just expressing our everyday lives. You don't like it ....... imagine LIVING IT. This is OUR LIFE! So don't shame us, have little compassion and have some understanding. Sometimes - though - we need to vent about our day, our fears, all these things that worry us and the trials and hard things we go through on a daily basis.
I'm not saying we don't enjoy our lives, because we do. Even though our lives revolve a lot around medical stuff, I will take every day with doctors over not having my kids. We couldn't love our kids anymore than we do. It doesn't make our fears any less real. But every day is a blessing with these kids - because unlike most parents, they don't live by the motto ......
ENJOY EVERY SINGLE DAY BECAUSE YOU NEVER KNOW WHEN IT WILL BE THE LAST .....
We do....and actually have it be a reality. #theBoyWhoLIved and #SuperNathan
(Thanks for reading.)
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