I just read this from my special needs magazine and I had to post. I can't believe that before I had Kaleb I probably would have been the author of this note. Although I was too shy to say anything so I would keep everything in to myself, or say something negative about these people to someone I was with. Shame on me. A world of black and white...

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To the Author of The Anonymous Note Left On My Car Window-

Written on October 10, 2011 by Suzanne

39 Comments

I think I recognize you!  I do.. I used to live in your world of Black & White, everything in order- in it’s place- I  got a plan- got a schedule- a list of finished projects- checked -off checklist and all. How wonderful for you that your life is so structured, so dependable and predictable that you cling to that line dividing right and wrong, black and white, and that you feel compelled to comment when you think someone is coloring outside the lines.  
This time though, in your hurry to keep things neat and orderly.. you didn’t see the whole picture. I guess you didn’t see the accessible permit hanging from my car mirror, giving me permission to park close to the entrance. You didn’t see the wheelchair lift permanently installed into the back of my SUV, and you didn’t see me unload my nine year old daughter’s pink manual wheelchair that we use for “ quick “ trips. Maybe from your view you only saw my 11 -year old daughter and I, and not Zoe’s pink wheelchair.

But forget all that, it could have only been my older daughter with me that day, parked in that same spot,and depending on her health at that moment- in your eyes, we would have appeared to be at fault- even though her doctor almost nags me, reminding me to use the medically authorized permit to conserve her energy when needed. Even though she has the same progressive metabolic disorder as her younger sister. She doesn’t have a wheelchair, but she has the same rights- all invisible to you from the perspective of your world.

I recognize where you are from. I used to live there too. I used to have checked off lists, awards of accomplishments, perfect hair, great skin, sparkly eyes, a quick wit,  a clean car, a social life, a large social network, an organized calendar , vacation plans set in stone, and a no overdue library books . But then I became a Mom. A mom of a special needs child. A child with no lifelong guarantee, no definitive prognosis and no detailed treatment plans. We have good doctors, we have a good attitude and we have a good family life.


My life is good, but not so easily structured. My skin not so healthy, my hair often flyaway, my eyes most often tired. I am up multiple times throughout the night, I rise at 5 and go full speed until 9 at night, still stymied and determined to do more each and every day.  I miss the friendships I used to have, the  once- so- easy to -achieve professional accomplishments- but I don’t miss that world you live in.

I am a kinder woman who lives in a world that is no longer black and white. Sometimes gray is good, a salvation, a retreat from something that could be much worse. My priorities were reshuffled for me, and now I would never think to judge another.

I am always in motion and I am grateful . Grateful for the touch of my child who needs my hands to steady her,  grateful for my child who craves my words to calm her, my child who needs my hugs to soothe her. I am even grateful, that I no longer live …in that black and white world.

Moderate Hearing Loss

You've developed the strength of a draft horse while holding onto the delicacy of a daffodil...you are the mother, advocate, and protector of a child with a disability. - Lori Borgman

I hate the title of this post but it is what it is. This morning I took Kaleb to the children's hospital here for his "6 month" audiology test. Yes, he is now 10 months old...I'm aware we are a bit late on the audiology train and I feel terrible for it. I wasn't worried this morning. When people hear that Kaleb has hearing tests often they always say, "Oh we know he can hear". Yes so do I, but I know it's more than that. This morning I had already told myself that he can hear and that's that. Well not so much. He was able to do the older kid testing where they sit you in a box with animals, lights, and sounds coming from different directions. Pretty freaky to me. I wasn't worried. Then I noticed he wouldn't respond like he should. I told myself, "he's a baby...he's not going to get every response correct". Then when he would not hear the same sound from the same direction over and over again, I knew it wasn't the best news. 

Kaleb began to get tired so Dr. Hall came in and did the "infant test" to see if that would have better results. Basically when a baby gets a hearing test they put these ear pieces in and it measures the movement of the ear drum, hairs, and other parts of the ear. After this test Dr. Hall told me that he had fluid behind both eardrums. I asked if that meant that he had ear infections. She said not necessarily because the fluid may be clear but somehow just stuck there. Kaleb's ear canals are very different than other's, his are very tiny and curve unlike most so most doctors and pediatrician's cannot see in there to see if there is fluid or an ear infection, etc. She told me to follow up with his ENT asap so they could use their special equipment to check on the fluid and get it to go away. 

At the end of the audiology appointment she sat down with me and showed me the chart which charts his hearing compared to other children his age. She told me he had moderate hearing loss and we would need to come back soon for another audiology appointment after seeing the ENT who can hopefully clear up the fluid behind his eardrums. Moderate hearing loss? This brought me back to the day we picked Kaleb up from the NICU to go home. We were so happy. Then the nurse said something to the affect, "oh btw he failed both of his hearing tests, you need to follow up for another one outpatient". Most parents don't have to hear that. I was terrified. Our geneticist pediatrician had already told us we needed to follow up with an eye doctor because she had concerns for his vision, and now his ears? I could deal with the extra chromosome, the crooked pinky fingers, the out of place feet, the very rare heart defect but for some reason thinking that my baby was deaf was unbearable. This appointment today brought me right back to that day we were discharged from the NICU. I'm not sure what it is about hearing loss but it terrifies me in ways that his other special needs don't. I think it is similar to the fear that he won't be able to walk. Maybe it's the main things we do that scares me, see, hear, walk, talk, those sort of things.

Well tomorrow we go to our ENT with Kaleb and Nolan. We need to talk to the ENT about Nolan getting his tubes in and obviously about Kaleb's possible ear infection...hearing loss...etc. It is sure to be a draining appointment no matter what happens...any appointment with both of the kids is draining no matter which way to slice it. ;)

I'm hoping to post soon about our Halloween night, ohmygoodness so much fun! Happy Halloween everyone!

Pinktober

Breast cancer awareness has always had a very big part of my heart. Most of you know that many women in my family have had breast cancer and my cousin passed away not long ago after fighting for nearly 10 years. My dad passed away only about 5 months after her and they were super close, possibly even closer than he and I were. Anyways, it's reassuring to know they are together now knowing how close they were. I guess since having Kaleb things have been so hectic with appointments and other things going on that I even forgot about Pink Friday-- gasp! Normally I deck out in pink and spread the awareness on that day but somehow completely missed that train. Where was I? Not a clue!

Time for a dumb question. Because of my family history of breast cancer, especially being that it's only affected my dad's side of the family (that I know of) I have a much higher risk than most women so apparently I need to start mammograms soon, around age 30 I think. Now do you go through your family doctor or your OB/GYN? Told you, totally dumb question.

Oh How Pinteresting Wednesday

The "pins" I love today. 

And finally...my FAVE of the day. 

I really need to post this on my fridge. I love my little men. I need to keep all of these in mind. I think I do a pretty good job of it but these are hard for all mommies. I did let Nolan paint pumpkins last night. Talk about a total mess and the fact that my wood dining table may have yellow, black, and orange paint on it forever doesn't bother me. It did at first but oh well...it's a table. It will always remind me of the night we painted pumpkins for the first time. BTW, Nolan's favorite color is black. He's a dark little thing! 

The Little Johnstons

Updates on the little men in my life....

Nolan
- is driving me crazy with coming out of his room after he goes to sleep and then waking up super early and waking us up. this morning i think it was around 4am. we heard Nolan crying so Dennis checked on him and then we slept some more and I didn't know where Nolan was so I had Dennis check on him again and he found a bloody crime scene of the food kind. Nolan has recently become obsessed with strawberry milk so this morning he somehow got the Strawberry syrup out of the fridge (it was up high for a reason) and painted my kitchen with it apparently. Dennis wouldn't tell me the extent of things because he was sure I would be livid with Nolan and then maybe cry over my precious kitchen. I'm still finding pink spots on my carpet and tile floor, counter tops, and stove and sink. Of course we are out of carpet cleaner.
- is speaking more and more and putting words together. We've been worried about his speech because he really doesn't talk much at all but a lot of people have said that is okay and he will catch up so I went with it. Within the past couple days there have been small improvements, like from "i mommy" to "i want mommy". And, he is still obsessed with the phrase "go away"...this morning I woke up to him actually singing a song he made up..."go away go away go away go away" it was a beautiful rhythm even if it was rude.
- he still adores his brother. he helps change his diaper now. he wipes Kaleb's mouth when he spits up. When Kaleb cries Nolan goes over to him, rubs his head, says "shhhh, it's okay baby", and then kisses him. SO SWEET! No matter how many people talked shit about me having kids so close together this makes it all alright.
- He is addicted to pancakes.
- He has to do everything himself. "ME DO IT!"
- He makes us watch the movie Monsters every night before bed. Dennis and I now know every line by heart. I wish they would make a sequel or sequels because that would at least give us some variation.


Kaleb
- He is starting water therapy next week, YAY!
- He is still spitting up like a newborn and a lot worse. I hate reflux.
- He still goes to PT and OT once a week and his therapists are lovely ladies!
- He has developed seperation anxiety which is new to me. Nolan never really went through that phase and it was nice to not have to deal with it. But now Kaleb only wants mommy or daddy, and really he prefers daddy. Even if you walk out of site to go into another room he acts like the world is ending and screams like he is in so much pain. He's pretty dramatic.
- He has found a love for rings. Rings of any kind. Anything with a loop. I guess it makes it easier for his hands to pick up. I recently bought him a raspberry teeth pacifier and OMG that's his new love (unless you put him down with it and walk away...because then the world ends remember?).
- He loves all baby food. I think he might be a food addict.

Strength

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.' 

-Eleanore Roosevelt-

I've been thinking a lot about strength lately. It's interesting to me that when you go through very difficult times that people call you strong, when in reality you are just surviving. It's hard to explain unless you have been through some terrible...TERRIBLE event in your life. I remember when I was 21 weeks pregnant with Kaleb and I lost all hope. The specialists said that he would not live and I was terrified that if he did he would be disabled for his entire life. I can't believe how immature, dumb, and naive I was at that time. After we received the news that Kaleb had Trisomy 9 we were devasted. People always told us how strong and amazing we were but we felt everything but those things. I think we laid in bed for the first week. Just laid there. We were so tired but it was so hard to even close our eyes. So many times I asked myself if this was happening, was this really happening to me? I guess I thought I was untouchable at that point in my life. When we had to leave the house for blood work or other labs we would go to Sonic which was our "sorrow food".

I tried telling those close to me that I was not strong...not at all. I was living (although barely). My only option was to continue moving forward. I couldn't erase time, I couldn't take away the extra chromosome that my son had, all I could do was keep breathing. I did what any parent would do in a time of crisis. You try to make the best of that situation and if you can't you just breath. Time will pass...situations will not get any easier but you will learn coping strategies so that it is easier on you. 

I wouldn't change a thing about my life and Kaleb. When I was pregnant I was terrified...what will other kids say about him? how will Nolan be affected by a special needs siblings? Will he ever be able to be independent?  I don't worry about those things anymore. Screw the other kids. And Nolan is absolutely in love with his brother and so protective of him at school. Even if he is not independent I will be there to make sure he is safe and happy. 

I've said it so many times before but Kaleb has taught me so much about life. Kaleb is such a special part of my life and he reminds me on a daily basis how amazing he is. I can't believe I almost let the "specialists" tell me how terrible the situation was and that aborting my baby was an option. You make your own life, destiny, future. I am so glad that my future includes a special baby boy named Kaleb. I love that little boy, along with his brother and their daddy.