My son was born on December 21, 2010. He is my only child. Words can't even begin to describe the feeling I had the moment I held my little man for the first time. This is it...my purpose in life! I remember thinking of all the things I wanted to do with him...take him to the zoo to see all the animals (wondered how he would say elephant), take him to the museum to see all the cool things (all the why mama, how come mama, whats dat mama), take him fishing, read books to him and eventually listen to his sweet little voice start reading to me, watchin' my son and husband fulfill my husband's dream of buying and rebuilding a 60's model hot rod with Max and one day giving it to him to drive, all the way to his 21st birthday----keeping the Alexander family tradition alive and woo hoo takin' him to Las Vegas for the first time...The list goes on and on. I even went as far as writing letters to Max while I was pregnant...telling him how he kept me up all night kicking and that he seems to think my rib was a football. I would write how excited I was for him to get outta there and all the fun things we would do together.
We took him home and began our new lives together. All of my dreams for his future continued endlessly. He was about 2 1/2 months when we got our first stab in the gut (atleast thats the best way I can describe what my husband and I felt) the day his pediatrician told us he wanted us to take our perfect little boy to Duke to see a neurosurgeon. He was concerned because Max did not have a soft spot and his head was in the low percentile. What the heck is this 30 something year old doctor talking about? So Max is a hard headed little guy...I could have told him that...he clearly doesn't know Allen and I...He then said a bunch of big words that went over my head not only b/c they sounded like chinese, but because my heart was sinking to even think something was wrong with my Max. I went home with the doctor notes and googled and wikipediaed all the information I could about the long word on this piece of paper-Craniosynostosis. I saw pictures of little children with deformed heads, words like congential defect, seizures, diminished intellectual capacity.....Anger and sadness took over my whole being! I prayed to God over and over and literally begged him to just make this all ok....not my child! We went to Duke after 2 weeks of the unknown and way too much research...He had an MRI and the neurosurgeon came into the overlit, sterile smelling room and sat down. He smiled and said Max is fine he just has some metopic ridging (premature fusion of the metopic suture)! I really wish there was a button on this keyboard right now that I could hit and insert a symphony of playful music that shoots beautiful fireworks out of your monitor...thats what I felt inside at that moment! PRAISE GOD!!! I am telling you I really felt like GOD was sitting right there with us in that room munching on a hot dog, smiling, and enjoying the beautiful music and fireworks with us. Pass the mustard God, pass the mustard!!!!!!!!!! I am pretty certain had I been given the opportunity that day to compete in any sport in the Olympics to represent the USA...I would have won like whoa!
HERE WE GO AGAIN...We were sitting at home one night and our little man that normally was content as a chubby fella eating cake, was screaming and crying non stop. Nothing would comfort him other than me sitting on a yoga ball and bouncing him...so I did for HOURS! He hadn't kept any formula down that day. I told my husband that if he didn't keep this last bottle down we were going to the ER!! He seemed to be doing ok and then I went to change his diaper and it was litterally full of blood. The drive to the ER was a blurr. We got him in there and after 8 hours of waiting we were told that our son had an intussusception which meant his small intestine was basically imbedded in his large intestine. They did an immediate air enema. It worked after several tries. We stayed at UNC for the next 2 nights. Surely this was it...I get it God your testing our strength....mmk we are winning the next World's Strongest Man contest...for sure...we got it. We are good to go, passed with flying colors! This has to be IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
NOPE! Little did we know the hardest was yet to come!
Max went for his follow up appointment with his pediatrician at about 4 1/2 months. His doctor said that he was really concerned that his head was not growing like it should and he was also concerned with the fact that Max was not focusing like he should at this stage. He wanted us to go back to Duke AGAIN to see a pediatric specialites doctor. So we did and they did a chromosome test and then told us that we would have to wait about 6 weeks for the results. Here is where this keyboard should have a button to press that would insert fire truck sirens, loud obnoxious horns, and cause smoke to pour out of your monitor-exactly what I felt at that moment. YOU HAVE GOT TO BE KIDDING ME-6 WEEKS?!!!?!!! They also scheduled Max to see an opthamologist. So a week later we went back to Duke to see the next doctor. He was given an eye test. He followed light and movement, but would not look up. They took us to a doctors office and in walked the opthamologist...he turned out the lights after putting on what looked like the head gear the dad wore in Honey I Shrunk the Kids when he was trying to find his shrunken kids on that concoction he made that swung him around the back yard! There was a bright light on this contraption and he began looking in Max's eyes. Max just looked at this guy with a look like..."Pssht...this guy. Do you see this guy Mama? There is something wrong with him." He kept smiling at the doctor with this sarcastic laugh like "Where did this fella come from?" The doctor was tickled by Max's personality. He stepped away from Max, flipped the lights back on, and said "I think he needs to see a retina specialist...he has retinal dysplasia". Max litterally laughed again with a big smile like "nope sir...nah theres nothing wrong with me...your the guy wearing the solar system on your head...k...lets get it straight." All jokes aside my heart sank again (Fire siren button hit here)! Well we finally get his test results back and all is well again...it came back normal! I was sure they just didn't want to tell us that he actually had a chromosome they had never seen before...they'd show me the results and say we have never seen this here before...I would explain to them...oh that-that there is the AWESOME chromosome...it only runs on the Alexander side...no worries, but they didn't! What do they know!
Yesterday (6/23/2hell) we went to his appointment with the retina specialist at Duke for Max's intense eye exam. I was sure when we walked in we'd be greeted on a first name basis by the 50 other specialist we had previously seen at Duke, but not the case. We went in very optimistic-all will be fine...maybe he will jsut need surgery to correct it or he will just grow out of it....They took him back to put him to sleep and examine his eyes. After an hour my husband Allen and I were asked back to the consultation room...Consultation Room my a*s! This room was so small the doctor came in am pretty much sat in my lap!***CRICKETS***
Doctor Toth:"Your son has Persistent Fetal Vasculature."
Me: "Ok, so where do we go from here? Will he need surgery or just outgrow it?"
Doctor Toth: "Your son is permanently legally blind, he will never be able to drive or play sports...
Everything went blank. I heard no sound even though the doctor's mouth was still moving. My hands started feeling really cold and I had this piercing pain I had never felt before in my heart and stomach, I started sweating and then came the uncontrollable tears....A million thoughts started racing through my head uncontrollably...all those dreams and plans I had of taking Max to the zoo to see the animals, the "whats dat mama" as he pointed at something he was looking at, him learning to read, building that hot rod with his dad to drive, going to Las Vegas to play cards...Then came anger! I did not feel God in this room. Where are you? WHERE ARE YOU? Why my son...why Max? I didn't even feel like God was listening in that moment. I can't believe your letting this happen to my innocent sweet 6 MONTH OLD SON>>>WHERE ARE YOU?!!!!!!!!!
I don't really remember much of the consultaion after the above. The next thing I remember was a nurse coming in and saying we need one of Max's parents to come to him in the post op room. As I managed somehow to walk down this long hall in my fit of anger I heard the sweetest sound....My sweet baby Max's cry for me! I ran to him and took him out of the nurses arms and in to mine and he stopped crying immediately! I held him so close and held back my tears as best I could and then...There was GOD! Strength I didn't know I had came over me. I comforted my little guy all the while God comforted me!
I sat there holding Max. Nurses in the room started talking about everyday things...(I heard one say how she couldn't wait to get off that it was one of those days...too many patients and how she could not wait to go on vacation.) Woop here comes my anger again...I was fuming! How dare this nurse stand there clearly seeing me holding my son with the puffy red sad face I was wearing and tears sitting on my bottom eye lid CLEARLY ABOUT TO FALL! WHAT THE HELL IS WRONG WITH THIS WOMAN? Right before I had the chance to grab this woman's scrub shirt with little sunflowers all over it...There was GOD working again...A nurse standing over in the corner that didn't know me from Adam, was not Max's nurse and had no clue why I was upset walks over and says nothing...she just hugged me tight! She stepped back and asked if I wanted some water or a blanket then asked if I was there alone or was someone out in the waiting area...I told her my husband is out there. She told me she was going to go get him and bring us to a private room and ensured me she'd be right back and SHE WAS. She must be an angel. She took me and Max to Allen and our family was together....there was God again working his magic! The Angel Nurse explained she was going to give us a few minutes. She cmae back a few minutes later and said in a southern accent "Honey I just read what was goin' own' in little Max's chart. I understayand what y'all are goin' through and I am so sorry. My son was 6 months old too when he was diagnosed with Cerebral Palsy. Honey my heart broke much like y'alls is raat' now." My heart hurt for her...how dare me be upset...CP would be way worse...we are lucky. This Angel Nurse was so compassionate and kind....Thank you God for her! She explained that her son was perfect anyway and spoiled rotten. "He's now 13 and tells ya when hes happy and booooy he sure will tell ya when he aint, but he is somethin' else. I promise you it will be OK. GOD chose y'all to be his parents b/c he knew you could handle it and give Max everything he needs." Praise God for Angel Nurse!
About that time things began getting blurry again and the next thing I knew we were home. My mom and dad were there and my dearest friend's Jess and Kris came to visit. Many family members called and emailed with kind words and prayer. Shortly after I went to bed....hoping this was all a nightmare....it wasn't.
Thank you for sharing your story!! You hit the nail on the head; you are his parents for a reason and he is lucky to have you!! The road will most likely not be easy, but God will give you the strength to overcome any obstacle. Hopefully this blog will be a release for you in two ways; one - acting as a vent point and two - the other families who have been affected by PFV will know they too are not alone in anything they have been challenged with. We are praying for y'all and will continue too!! I cannot wait to see more pictures and hear about all of his updates!! You have a precious gift from God!!!
ReplyDeleteI just found your blog through Thomas Marshall Does It All. I realize that this post was made almost a year ago, and I admit that I know little to nothing about PFVS, but I do know something about raising a visually-impaired child. Let me tell you this: your doctor who said your son will "never" is full of horse puckey. Your son can do whatever he sets his mind to; his eyesight isn't going to limit his ability to achieve. With new technologies, he likely *will* be able to drive (the NFB's Blind Driver Challenge is proof of that), and he can definitely play sports (there are blogs galore with B/VI kiddos doing just that). Don't listen to naysayers who use words like "can't" and "never"--you, your family and your son can do this. Don't let anyone tell you different.
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