All parents have their breaking point and last Wednesday, I had mine.
We'd been gone for 8 days for our trip to the Mayo Clinic for their Diagnostic Team and my son had had enough. I had had enough. We just got home from a nearly 4 hour car ride where my son whined nearly the entire way and it'd been more than 48 hours since either one of us got some sleep.
My father had finally urged me to put him down for a nap and for me to do the same. So, I put Abram down in his crib, made sure we did our normal routine of sound-maker, lavendar lotion back-rub and crib soother. Plus - the almighty blanket fluffing. But he just started to cry. I figured he was just over-tired so I went into my closet - to CRY. I just couldn't handle it anymore.
Then I heard him screaming. An awful scream. And I ran in there to find my son had screamed so loud and so hard that he'd made himself projectile vomit all over himself, his bedding, through the crib slats and all over the floor.
I yelled up the stairs to ask for my parents to help and my mom came running to clean him up while I changed all his sheets and scraped vomit off his pillows. We got him put back down and he fell right asleep while I fell into a heap on the couch and just BAWLED.
I felt like a horrible mother. I felt like a failure. I felt lost. I felt alone. And I felt ANGRY.
Since the day my son was born we have had to FIGHT. We had to tell the Nurses his lips and fingers were purple. We had to tell our Pediatrician - and another and another that SOMETHING WAS WRONG before anyone would listen. I KNEW he was having seizures before the "professionals" even agreed with me.
When you have a sick kid you lose everything: Your friends who you thought would always be there. Your family who just don't understand so they don't bother to say anything. Your faith in people and doctors and even the universe. It is HARD and no one gets it except for the people who live it.
At Mayo we were treated with Dignity and Respect. My old videos that I showed for seizure examples were confirmed as just that. When my son was collapsing and our local doctors turned us away and told us they couldn't help us and shipped us off.. it turned out that they were overdosing my child on a benzo. Those collapsing spells weren't new seizures - they were a side effect of TOO MUCH MEDICINE.
At Mayo, we were NOT frowned upon or shunned for giving our child CBD. At Mayo, we weren't told that we needed to add yet another harmful pharmaceutical with a myriad of dangerous side effects to our toddlers medicine regiment. Does that mean it will always be so? I don't know. He has EPILEPSY. Our pediatrician said it best when she said "I can't tell you what the next year will bring you. But I can tell you it's not your fault".
Today, when speaking with US Senator Charles Grassley - I admitted that although I tried my best to follow the law here - and went through all of the proper routes - I was unable to obtain the Registration Card for my son. Due to that reason, I was forced to do what was best for my child and that I was happy to report that my son is nearly three months free of physical seizures.
I did not get a congratulations. Or an "I'm happy to hear that". Instead I was quickly dismissed to another one of his advisors who talked to me about all the things that Grassley is doing to try and change things but that CBD cannot be rescheduled until there is more "research". I reminded him that such research would not be able to be done UNTIL they rescheduled CBD as a Schedule II drug - due to the fact that it is illegal at the Federal Level - no research can be done until that happens. I got a chuckle and a bad joke about "The Chicken and the Egg" metaphor.
In light of the need for "more research" I asked specifically how it is that the United States Government and the Department of Health can have a Patent 6630507 for "Cannabinoids as an Antioxident and Neuroprotectant" and that their own document states clearly that cannabinoids "are substantially non-toxic even at very high doses"
To which he laughed and said "We are Congress not Scientists".
Imagine now - if this were your child. Suffering from Day One and as a parent - being forced to be a "criminal" because Doctors, Hospitals and Politicians don't have the guts to stand up for what is right.
Today I bawled in front our Physical Therapist after she said "I have been working with Abram since June and I have rarely heard happy sounds come out of his mouth!".
Please let me clarify that I wasn't crying about what she said but the fact that she gets it! It was important for me to hear that someone else can see that something isn't right. It's not that I needed to have my thoughts justified but it felt good to hear that come out of someone's mouth, especially when that someone spends more time with our son than the majority of our family!
It was important for someone to be honest with me about how they see things. In fact, if it weren't for a dear friend of mine telling me that what my son was doing was *not* normal at 9 months, I am convinced that I would have lost my damn mind. (Thank you, Lacy. I will always be grateful for that conversation. That meant more than you will ever know!)
I feel that honesty is an important part of this life and that sugar coating things doesn't help much other than make the sting of disappointment burn that much stronger. So, while I was trying to happily tell our son's Physical Therapist about how wonderful our wedding was and how excited I was to go see a Neurosurgeon and new Neurologist on Wednesday; I ended up in tears.
As we were discussing what needs to be brought to the new Doctor's attention and asking her opinion on what items of importance should be noted - she also informed me that she believes that he is in some sort of pain/discomfort all of the time from his brain lesion. You wouldn't think that someone would be happy to hear that but I was. Not happy to hear that my son is hurting...... but happy that someone acknowledges and confirms it. The fact that this wonderful woman who came into our life (who has nothing but the best intentions for our son) and whom has been working with Special Needs children for decades tells me that something isn't right, was exactly what I needed to hear. What's even better is the fact that she is going to write up a little something for us to take to the Neurologist as she has been working with and observing his behavior for months and knows him better than most.
Please know that there is a big difference between being honest and being hurtful. Having someone tell you that your child is hurting and that his behaviors are not normal is honest and a much needed discussion. Having people say that your child's teeth grinding, whining, crying, etc is annoying is hurtful just as is having people comment on how or what your son eats and drinks from.
I realize that most of the comments are coming from a place of love and are not meant to intentionally hurt. I am not writing this to point fingers or make anyone feel bad. I just want people to understand how things are. Informing us that our son is fussy, clingy and a mama's boy is not helpful and it really hurts our feelings.
I love that my son loves us so much and wants to be around us because some day he won't want to be. At night when he has woken me up for the fifth time and I have gone weeks without more than a few hours straight of sleep.... I remind myself to keep calm and I stare at his little face and realize that just in a matter of years he will no longer want to be held or rocked and that right now he needs me and that is okay. That doesn't mean that I don't have days where I need to walk away and scream into a pillow because it is too much because I do have those days but it does mean that when the people we love look at him negatively because of his Special Needs it hurts.
Yes, he is fussy. He has always been fussy. He might always be fussy. However, right now he is a BABY and he can't tell us what hurts. Please remember that he has a Cystic Lesion in his brain that is symptomatic.... it is a very real thing that only 1.5% of the population has to deal with and it is incredibly rare for a Pineal Cyst to be as large as our son's cyst is. It is so uncommon that every single specialist we have seen has had both a differing opinion than the specialist before them.
He isn't walking because he has Hypotonia. He literally just started crawling and wasn't able to hold his own bottle until he was 9 months old because his muscle tone was so low. It's not because he is lazy or because I haven't tried. He has foot braces and Physical Therapy six times a month for a reason and it is helping immensely. He has come so far in just four months time with the help of Early Access.
He grinds his teeth because he has sensory issues and he is getting some sort of feedback from it. What it is we do not know but making rude comments about it isn't going to get him to stop. Yes, it makes my skin crawl too but there is nothing that I can do about it. He also likes to scratch things, has no fear, gags on rubber, won't touch/eat things with particular textures and he absolutely will not eat or drink anything cold and acts like it is torturous. Guess what? I can't do anything about that either other than help him try to get over those things little by little. I don't know why he is that way... he just is. Hearing people say negative things about him because he does those things hurts my heart deeply.
I guess I just needed to put this into the world:
Please remember to think before you speak. What you say to parents about their children can be hurtful and taken the wrong way with even the best intentions. Try to put yourself the other person's shoes before making commentary on someone else's child's behaviors, especially so when that child has Special Needs.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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