Special Needs
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Open Letter Thursday/Friday!
Assembly_Reqd
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Sorry I am tardy to the party for this!
Write those letters. Get it off your chest.
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Re: Open Letter Thursday/Friday!
Dear Geneticist,
It was good to see you again and hear that you think Nate is doing well considering his laundry list of issues. Something you said in the appointment has been bugging me and I guess I need to get over it.
You were giving us what I thought was a schpeel about people underestimating Nate due to his diagnosis. But no. You totally tripped me up and said people would underestimate him because of how he looks.
Umm, thanks for making me "see" my child differently. I really didn't need that. Now all I am doing is age progressing my child in my head trying to imagine what people will see when the toddler/child cuteness ages out.
-Crushed Mommy in Maryland
p.s. Is there any chance that you were referrring to people seeing him wear hearing aids? hmm, didn't think so.
Dear DD,
I know mommy has been on edge about your upcoming scope, and the possibility of your trach coming out, but that doesn't mean you have to jump the gun and pull your trach out yourself. I promise, I can wait until the doctors weigh in. Please, leave your trach alone from now on.
Love,
Your already frazzled mommy
P.S. Don't laugh... it's not funny!
You are an insulting ahole. If I dont understand something it is your job to help me understand. If I don't trust you it is because you lost that trust because I started out with trust.
Your patient.
P.s. You better not screw up my surgery tomorrow.
Mommy loves you but needs a break.
Love,
Me
Dear Judge,
I wish you would have done TPR today, bio mom isn't capable of caring for these girls and setting a trial to see if reunification is a possibility isn't in their best interest.
Signed,
The mommy who will not kill these girls
Two Mommies Healing Hearts
Dear all you doctors,
Stop telling me everything that is wrong with my beautiful little girl and then just idlly mention that my only job is to make her gain weight. Really!?! We're looking at heart surgery in 4-6 months, monthly visits with geneticist, cardiologist, pediatrician, pulmonologist, etc... And I'm not supposed to worry. On top of the fact that I wanted to EBF, but I had to figure out alone that it was too hard for her. Now my milk supply isn't keeping pace with LO appetite! "But she's no different than any other infant right now." Geez! Thanks for the help, but go jump in a lake!
Dear Bug,
Why are you all of a sudden deciding that screaming is a good idea. I mean that screaming that you did in the care last night for 30 minutes was ridiculous. Remember mama is having a procedure tomorrow and I need you to be good for nana. I won't be able to play or pick you up and I need you to behave so I can rest and nana won't be yelling at you and making the whole household miserable.
Love mama
Dear God,
I understand the part about how trials are supposed to make us stronger, being 'refined in the fire', 'all things working for the good of those who love you' and all the verses that well-meaning people recite to me. But really?
I know taking Brynn off his ADHD med was necessarry, and I keep telling myself that a hyper, happy Brynn is tons better than the depressed, anxious boy he had become. So, please give me the patience not to kill him.
And possible seziures now with Iann??? Like everything else isn't enough? Why is it awalys 1 step forward, 2 back? I'm not good at math but even I can see we aren't getting anywhere fast with thie kiddo.
I love my boys to bits and just want some time to enjoy them without the stress of new worries all the time. I think I am super strong and well refined now. How about a break from all this??
Your humble, but over done child,
MM
Ds,
I know it is rough to get to daycare in the morning for you. You have been in such a mood when we get there. I feel at a loss as to what to do to make it easier for you.
You do snap out of it after I leave and later in the day and you are the happy little boy. I pick you up and you are much better.
Mommy has had it rough at work this week but things will be better for mommy at work from now on.
Mommy
Dear mom,
You may not realize this, but when you said "Maybe another baby will bring her out of this, hint hint", it really hurt me. As did the few times you asked me if I was currently pregnant. I have an iud, you know that. We only ever planned to have one child, you know that. What I can't figure out is what exactly having another child would do to benefit DD? What is your rationale there? So I can be moody, and sick? So that I can have to divide my attention with another child when A so desperately needs all of me? I am sincerely hoping its not because A is now considered a toss away baby, but you did say "Think how I feel about it, shes my ONLY grandchild." You do realize that she is my ONLY child too, right? Do you not think it hurts me very deeply to know that I will never have a chance to parent a typical child? Do you also realize that if we had another child that child could very well have autism too? Should we just keep having children until you get the grandchild you were hoping for?
Let me know,
RDM
Dear Hubby,
You have been the most amazing, supportive, understanding husband in the world. You continue to go to work everyday, provide for your family, let me biitch at you, hold me when I cry, and tell me everything is okay.
However, your optimisim scares me at times. I don't know if you really understand the depth of what is going on with A, or if you are in denile. I don't know what to say to you because I don't want you to live in the same pit of despair as me, and I guess if you can look at things in a positive light, then I should let it be. But today when you said "I think one day she will be a doctor." I kind of wanted to throw up.
A has very little ability to understand things. She can answer "what is that?" if we put our finger directly infront of something, or are touching it. She can never answer "where is" anything, even if its something she just labeled. She can't follow any simple command at all.... Its hard to take you seriously when you tell me "everything is going to be okay" and I realize its not because you have accepted what our likely future is, but because you think shes going to come out of this completely.
I love you, more than words. I hope one day I can return to the happy wife who has the desire to get up in the morning, a reason to be happy, and goals in life. Thanks for sticking by me when I'm the depressed, barely showered, nails chipped and jagged, wearing the same clothes for 3 days wife.
Me
Too my soon-to-be-former pediatrician,
Thank you for blowing off every concern Ive had regarding my son and making me have to figure everything out myself. Also, thank you so much for the WTF stare you gave me when I said I was having him evaluated. He is 8.5 months old and has the motor skills of a 5 month old. His cranioorthodist and GI both think he needs PT. How do I know that and you don't?
Dear Team of Doctors,
It took you all 364 days and 17 hours since DD was born to discover she has a small hole in her palate? Really? Really? So her spitting up through her nose may not have been reflux? Her constant ear infections and excessive wax may be attributed to something physical? SHOCKING! My mommy intuition saying we were missing something may have been right? That never happens!
I could be furious, but the Zoloft I am on is preventing me from having this feeling. Instead, I want you to fix it and I want you to fix it ASAP. There must be a Jewish/Hindu/Non-Celebrating craniofacial surgeon with no plans for Christmas. We are Jewish too - I will even bring you Chinese food for after the surgery. Let's get this fixed so we can see what else we are dealing with.
Thanks,
A Tired Mom
Dear God,
I am new. I know that I can and I will deal with this but I don't want to. I know I have it so much easier than a lot of parents - but on my own since day 1, wait pregnancy, hip dysplasia ultra-sound at 5 days (neg), watch and wait ped for a CT at 7 months - CT scan, plagio, helmet therapy, non-understanding "dad" to DD/issues, in the office every month since birth almost with a URI/ear infection, possible dairy allergies, 3 week fever virus with whole body allergic reaction to cephelsporins, already scheduled speech eval where a surprise food therapy rec and PT eval for what I thought was only walking deterioration - but posture, w-sitting, tone, and when asked about my mito "did you sleep alot" and DD sleeps so much - eval at 18 months for ear fluid, and I just know at my Jan appointment with my genetics/metobolism docs DD with be with me and we are going to talk mito.
I don't want this, I don't want to have to do this, I have no help, parents who are in denial, and a fear that after a year and a half and thousands in legal costs - her "dad" is back and he is going to label/judge/look down on DD like he did me for this very issue. I know I will get through this because of my faith but I don't know how I am going to be stronger than you have made me to help her be better than I was/am.
I don't want to have to teach my parents individually not to mention her EOW dad and grandma. I am broke, you know this - but I work so hard to literally heal people at my job as I will all weekend and not see DD. Why during the holidays? Beyond a friend hours away via email and a counselor - I can't let this all out.
I promise I will have faith and I know like the mother last night who didn't know me said how perfect that God gave you a child that needs your particular given gifts - I wanted to cry right there. But I am scared, I know I shouldn't be, but I am. How can I be enough?
Your terrified yet faithful child who really needs to stop googling, looking at pics of DD, and wondering why I didn't catch this sooner