I was one day into my 21st birthday when i found out, with great shock, that I was pregnant. Me? Who had never even been around children before... EVER? Not even as a child. Well, I surprised myself and got strong, and was happy... even with living in the basement of my parents home with my boyfriend of 4 months. I got life together very quickly, and we moved into our first home.
I was never diagnosed with h-y-p-e-r e-m-e-s-i-s g-r-a-v-i-d-a-r-u-m during this pregnancy, but being as that the next pregnancy I was diagnosed with a SEVERE case, I know I had it then too. Let me pause and tell you a little about hyperemesis gravidarum, its a disease that occurs in pregnancy and is incredibly controversial. Translating to, literally, excessive vomiting in pregnancy... it is NOT morning sickness. My OB said not many people would understand, so i should explain it as like having food poisoning for nine months straight then proceeded to tell me a story about Hitler experimenting on pregnant women in Belgium by feeding them nothing but "straw soup" yes... hay... and water. He said with an encouraging upbeat tone "Most of the women who had no prior health problems turned out with perfectly healthy babies, so rest assured!" Needless to say... I GLARED. My previous OB, the one during the pregnancy i'm currently talking about... took the controversial side of believing it is not actually a disease, but instead IT WAS ALL IN MY HEAD. "Here take these anti nausea pills, this endless supply of vicodin. SAFE?! why of course it's SAFE! Now shut up and go eat something, quit bothering me." was his approach. This is the same OB that almost killed me about a year later. Anyway, i digress. I was constantly dehydrated, could hardly hold down water, and was eating anti nausea pills that wouldnt work anyway due to the level of dehydration in my body and just being a miserable mess... i didnt want to leave the bathroom for about nine months.
I had never been so depressed in my life, it was one of those shocking realizations that everything you thought was SO bad before... was in actuality, peaches and cream compared to this. I had an unsupportive, mentally and emotionally (during my pregnancies, physically and sexually while i was not pregnant) abusing boyfriend who cheated on me constantly and well... stressed me the FUCK out. my due date was 12-22-09 and i miserably counted down every single second.... i drooled over food commercials to the point where i disconnected the cable for good and went running for the nearest trashcan or bathroom immediately. it was hell, that was hell ON EARTH. 12-22-09 rolls around, no baby. they ask if i want to induce, i was very scared of the effects of the pitocin, so i said no. 12-23-09 rolls on by... would you like to do a c-section, NO... ANYTHING but that in my mind... but that night... oh here he came, back labor, 12 hours of it. my boyfriend at the time suffered from a condition called c-l-u-s-t-e-r h-e-a-d-a-c-h-e-s... we'll get back to that in another post... but he actually had one the minute my contractions started, so i packed my own bag and sat there for almost an hour for his crippling and very real debilitating headache passed. i went through labor with demerol and phenergan, and a boyfriend who was on strong pain meds that passed out constantly or was in the bathroom in the shower with another headache... he tried, i will give him credit, he tried to be there for me. (which in retrospect is probably why i hung onto the asshole so long) but the morning of christmas eve my beautiful baby boy was born, and i was born new, someone entirely different... i had never even held a newborn before, and i was SO scared of children... but he came SO easy to me.
i remember... vividly... looking into his eyes... his beautiful blue eyes... and thinking.. WOW, he is so alert he is looking ALL over the place! ...and i remember....... noticing.. and asking the nurses... i said "it looks like he has a ring around his iris, almost like a contact lense, is that normal?" oh SURE, he probably has some bruising in his eyes due to the trauma of birth. OKAY, phew. I rested assured... I was very much the mother every nurse dreads, "is this ok? is this normal?" so they kinda brushed me off quite a bit.
we had a HELL of a time with nursing, he wouldn't latch, wouldn't latch... then suddenly latch on with all his might and start shaking his head around then screaming... the nurse was even getting frustrated trying to teach us. after i had brought him home i called a la leche league sponsor who told me... "Maybe it's just simply his personality... and it won't work for you guys." I was devastated, I had wanted more than anything to breastfeed my baby... Through a LOT of hard work we managed 3 months of it in the end.
When I took him home... a few hours of holding him in our recliner... his eyes just SPAZZED... darting all over the place, shaking back and forth rapidly... I called the ob nurse... she said "no worries, he's in a new place, he's just taking everything in." So again, I breathed easily. He had passed ALL of his newborn checks... we took him to his well child check ups... and everything was fine. For about 3 months.
I took him to his pediatrician at 3 months old... and she finally asks about his eyes. "Do his eyes always move back and forth like that?" she said. And my heart sank. I KNEW IT! i just... knew it. his half brother had taken to calling him Felix... after the cat wall clock? Anyway... I panicked inside, but held it together... though i was ANGRY.... i had asked so many times, "is this normal, is this ok?" and they brushed me off every single time... till now. We determined he needed to have an MRI. I took him a couple days later to the ambulatory care unit to be put under for an MRI. NOTHING is more terrifying than rocking your sedated infant to sleep, to a drugged dead sleep, while praying he doesn't have a life threatening reaction to the dye. A very kind male nurse took him back for me and assured me though i couldnt be there, he would look out for him for me and everything would be okay. The MRI went well.. and we went home to WAIT.
Waiting weeks for SOMETHING... they wouldn't even hint at what they were looking for considering the endless panicking possibilities of problems... was awful. His doctor finally called and told us that we should come to the office to speak to her. I knew then it was bad, it had to be bad if she wanted us there in person. So we rushed down immediately.... to be greeted by a receptionist who told me the doctor had left for the afternoon but had left us a huge packet of information about S-E-P-T-O O-P-T-I-C D-Y-S-P-L-A-S-I-A. The experience of being thrown this huge and terrifying word with all this STUFF that could possibly be wrong... with no doctor to explain it? It's a very personalized disease... and the packet said POSSIBLE: hormone problems (all hormones, sex, height, everything), possible mental retardation, possible autism..... the possibilities were... awful. especially with no one to answer my questions.
I remember specifically one day in the bath, while pregnant with my son, What To Expect When You're Expecting... I came across the section about what to expect when you're expecting a child with a disability. I skipped right over it thinking "you don't need that stress too! there's absolutely nothing to worry about. the ultrasounds are clear."
Well, turns out.... I was wrong. The doctor gave me the run around about specifically how bad my son was affected, and focused instead on getting us into a birth to 3 program and not to dwell on it, to be positive, and work forward through something "we can't change anyway".
The birth to 3 therapists were and still are amazing, they were my angels throughout all of the difficulties in this and even in my relationship. They have been patient, kind, understanding, non judgemental... and even STRAIGHT FORWARD.
Now, let me pause to define S.O.D.
| Septo-optic dysplasia | |
|---|---|
| Classification and external resources | |
| ICD-10 | Q04.4 |
| ICD-9 | 742.2 |
| OMIM | 182230 |
| DiseasesDB | 32732 |
| MeSH | D025962 |
Although not included in the name, hypopituitarism is sometimes included in the definition.[3]
Neuroradiologically, intracranial malformations associated with septo-optic dysplasia include agenesis of the septum pellucidum, schizencephaly, and lobar holoprosencephaly.
Blahblahblah huh? I was so lost upon first definition.... The ladies in birth to 3 set out to have ALL my questions answered... and by the time my son was 8 mos old I FINALLY had a full medical report. I set out to define all these mumbo jumbo terms... and came back with this.... My son has a COMPLETE absence of the septum pellucidum and corpus collosum. meaning: the things that connect the hemispheres of your brain together, and cover your pituitary gland? yeah those arent even there. A neurologist explained to me recently... that when all things in your body are developing, they split into two. S.O.D. is an unknown stop to that effect... if it had happened early... he might only have one eye. Since it happened late, we are amazingly blessed.
Today my baby boy is 2 1/2, he does everything a normal 2 1/2 year old boy should except he has some speech delay, and gravitational insecurities. He is legally blind... but he can pick out a single strand of my white blonde hair and say "hair!".... so it can't be that bad. He has diabetes insipidus (his kidneys put out more water than they should) so... he takes a pill in the morning, and a pill at night and had blood and urine drawn every month to three months. His EEG recently came back clean, no seizures or abnormalities. There is one little girl in town who has S.O.D. too... its extremely rare, non-genetic, they arent sure of the cause, the only underlying connecting factor is the average age of the mother being 21 while pregnant... she is about a year older... and cant even walk. I'd say we're blessed. He does get frustrated and throws more tantrums than most boys his age... but it's due to not being able to communicate his needs properly... we work on therapy every day... and it gets better every day.
I'll confess, I cried while writing this... But I am ending it with a smile. You can overcome ANYTHING. Be strong, carry on, and smile... especially for your babies. You are their rock. Don't crumble.
If you'll excuse me, I have a very special boy to kiss.
(AGAIN: Not a pity post, pity is not tolerated here. Take the "dis" out of "disability")
Over, and out.
-can you spell that for me?
