I have a lot of things I need to get off my chest, so please bear with me. I do my best to stay positive and keep my head up. I keep a smile on my face and spend the hours and days with my son trying to make his life as fun and as adventurous as possible in between all the therapies, doctors appointments and hospital stays.
When you become a Mom so much of your life changes. In fact, every thing changes. However, when you become a mother to a chronically ill child or a child with special needs you learn quickly who your real friends and family are.
In the two years since Abram's arrival I have had more than my share of heartbreak from people who I thought loved me. I have also truly learned what it means to need a support system and I am one lucky woman because I have had some amazing men and women step up to remind me that they do care. People write to check in on my son... to remind me that people care.... to make sure he's doing okay and that I am doing okay and that WE are doing okay. What's even cooler is the fact that the people who have stood up at a time when I needed people the most - were people who I wasn't even expecting.
Regardless of how difficult our HARD days are there is always a kind soul who reminds me that I'm doing a good job and sends me their good vibes and I am SO grateful to the people who have come into my life thanks to Abram. In fact, Abram has introduced me into an entirely different world in which nearly everyone I meet has an awe inspiring story and I can see that I am not alone in this journey with my son even though sometimes my heart aches deep and the tears won't stop flowing.
Yet, just like all the other parents going through these similar situations it is that 2% of people who get under my skin. Whether it be hurtful words from a stranger to the lack of empathy and concern that we have received from people who in reality should care. Burning bridges has always been a part of me but even more so now that I have Abe.
Eight long years ago when I turned 30 I made a big promise to myself to not allow bad people in my life. That in a nutshell means: No Fakes, No Flakes, No Liars and No Thieves. I also promised myself that IF someone I allowed in my life later proved to be one of these things - than they too would be cut from my life... even if it hurts. This self-imposed law I put upon myself has taught me to be strong and to fight for myself and in turn have the strength to be strong for and advocate for my son.
I spent a great portion of my life being walked on and turning the other cheek. I have been told that I can be "too kind" sometimes to a fault. You know what I have learned? Sometimes it's okay to not forgive. It may be backwards to people but forgiving is something I have difficulty with. Forget? Yes. It's not worth it to remember a person who brought bad into your life. Forgive? I don't have it in me. Not anymore.
I feel like I'm rambling but there really is a point to all of this. A LOT of points, actually.The lessons I learned early in life really prepared me for the battle I would fight as a mother of a child with Special Needs. I learned quickly that most Doctors cannot be trusted and that even the most educated of Specialists don't know everything. I learned that I am the one who has to stand up and fight for my son and make sure that the people we count on for his medical care know that I am educated and more than likely know more about my son's condition than THEY do. In fact, I was told by our Neurologist that he was "humbled" by me and that alone made me feel like I am doing something right.
Alas, with all of the special health care needs comes an entirely different slew of issues. When you have a special needs child you allow a number of people into your life and you are almost obligated to trust them. You want to trust them. You want to believe that they have your family's best intentions at heart but sometimes as I recently learned that isn't always true.
(So... to that person (because I know you are reading this) I want to say this:
I wanted to love you. Seeing how Abram took to you and the kind and sweet nature you had with him made me ignore the icky feeling I had in my stomach when it came to the other things you said and did. So please, in your future endeavors - do not try to take another child's firsts as your own. By the time parents get to the part of allowing a paid stranger to come into their life and into their home under the guise of "helping" - a big portion of their heart is already broken. Stealing from me the joy I had in seeing my son's first steps after 17 months of agonizing physical therapy was cruel at best. Sharing those milestones as yours with other people was unforgivable. I hope you never do that to another soul. You tried to take that joy from me and that was one of the biggest hurts I have had thus far. "It takes a village" they say and my little Abe has two physical therapists, two occupational therapists and two speech therapists as well as a special educator from the moment I realized something wasn't right. In all of the months of help we have received in our home as well as in an outpatient therapy no one has ever tried to take credit for my child's milestones. "WE" is an important word to use when working with children and their families. I hope you remember that.)
So friends, that unneeded issue mentioned above was really under my skin and bothering me. I felt like I had been robbed of my joy but I can't let that situation get me down. I've got to let it go. Sharing it privately with my friends has helped to try to get past the broken trust (and the broken HIPPA laws) but it will take me a while longer to welcome another SCL Worker into our home and into our life.
Luckily, I have found that I am not alone in these frustrations so that makes this particular hurt a little easier to swallow. Luckily, I shared my son's first steps with the PT that has worked with him since before he was unable to sit up or hold a bottle and my closest friend and the three of use shared tears of joy and that is what I will remember forever. Sharing a moment with the people who were there with me through it all just waiting for it to happen.
It takes a village to make things happen for Abe. I am so beyond lucky to have the friends and family and community support that I do. To the other moms out there who are hurting... people will come into and out of your life. It will hurt. The anger will burn. Then, a kind stranger or an old friend will step up and say a kind word to brighten your day. Life is good even when it is hard.
Sorry folks, it's been a while since my last update. The reality is, things have been crazy and hard and amazing and good all at the same time. I try my best to keep my posts positive but I also feel that it is important to share the sad, the heartache and the never ending worry because that my friends, is reality.
My little boy has taught me so much more about this life we live and what it takes to live it at its fullest. He can smile and take reprieve even in the worst of moments to giggle and remind me that things are going to be okay. Life is good... even when there are tiny little heart breaks along the way.
He proved this once again this past Monday as we were rushing him to the ER via his First Ambulance ride. In the midst of the crazy and screaming from being strapped down this little dude stops in the middle of it to smile and revel in the fact that he is IN the thing whose sirens make him stop and go "ooooOOOooo". Even the sweet EMT laughed but really, kid?
Abram was admitted in the Children's Hospital Monday night after he had what we can only assume was a seizure. He's already been having the staring spells/absence seizures for over a year now but we'b been unable to catch them on the Sleep Deprived EEG as well as a three-day-long Video EEG he had last December, in which they caught seizure activity but not enough to warrant medication.
This time around we were released from the hospital less than 48 hours later because he'd had no other episodes. Luckily a friend of mine suggested an Ambulatory EEG and our Neurologist agreed that would be for the best interest for Abram as well, particularly because of the time of year and amount of yuck that is going around. (I almost died when they came and asked if I had any Ebola-like symptoms!)
Yesterday, Mr. Abe had business as usual. I think he was so excited to be out of the hospital and going to Therapy was like a piece of cake! His dad even got to attend to see him eat eggs and actually touch pudding for the first time ever without a meltdown at Speech. He did great with his Occupational Therapist even though she was not his regular OT and then he kicked butt at Physical Therapy too and was walking back and forth WITHOUT his walker for her multiple times!
However, his excitement waned when he realized he had to go see his Orthotist and start wearing SMOs on his feet again. His ankles are really rolling in and his feet are pointing out (it's a Hypotonia thing) so he's back in SMOs and some sweet new kicks that I wish came in my size. Alas, I don't think he likes them as much because the 1" rise that allows for a deeper shoe makes him really stumble and hit his heels together. I'm hoping that he'll get used to them or we'll be needing new shoes again. He grew like a weed this summer and went up an entire shoe size! Not to mention, he went from not being able to see out our front door at all to being able to stand nearly a head above it! He's still small for his age but damn it, he's growing!
On Monday, we go back to the Hospital to put on the EEG probes. That is the worst part of it! Especially since Abram has some major sensory issues and his biggest triggers are smells and having his head touched. So, he ended up tied down to a board and swaddled but he still manages to pry himself loose. He's so strong when he's made I find it hard to keep him pinned down and I HATE having to do that to him. It makes me feel so terrible even when I know it's for the greater good.
Just seeing your baby suffer in general is the worst thing ever. Luckily, I have met some amazing people thanks to Abram. He has introduced me to a completely different world and he has helped me learn to live in the moment and to enjoy the wonder of all the little things. Like giggles in Ambulances.
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
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