Typical

Another word that has become all to common in my vocabulary....typical, non-typical, special needs, Regional Center, OT (Occupational Therapist), ST (Speech Therapist), PT (Physical Therapist). These words were not a typical :) part of my vocabulary before.

I have heard comments like, "Well, that might be so with a typical child, but Kamryn is not typical." I even read an article (discussing parenting a child with Down syndrome) that stated I should throw out everything I knew and did with my other children, because raising her would be completely different. FYI raising each of them is different.

During the first year of her life I had envisioned a depressing future, based on information I was given and preconceived notions I had formed. I was actually setting myself up for a life of sadness, despair, therapy sessions, missing my other girls (who I wouldn't be able to spend much time with due to their sister's special needs), divorce (yes, we were told it is very common for couples raising a child with "special needs" to divorce-Why would someone feel the need to share that with us????). FYI divorce is just common. As I write this, it's almost laughable. However, in my darkest days, I really thought the joyful, beautiful life I had lived was over.

I could write paragraphs on this subject. But pictures are worth a thousand words......

She is typical. Our life is not.

Let's enjoy our life, are you in?

That is a text I received from Diondray earlier this week. It made me smile.


My response: I'M IN :)


Are you in?



Sorry about all the pictures...I love that I have a place to put them. We are definitely enjoying our life!

The Beginning

This blog is still so new to me. I am here, writing, sharing, because of my(our) youngest daughter. I see it as a way for me to advocate; by sharing our ordinary, beautiful life....I am advocating. It is also a way for me to completely heal and maybe reach a mom that is at the very beginning of this journey. I went through a lot (for lack of a better word) emotionally the first year after Kamryn was born and I want to write about it so badly. I have in pieces but not from beginning to end.

The beginning for me was the day after Kamryn was born. I was alone in the hospital. Diondray had gone home to get the girls. They were all coming back to pick me and their new sister up. I was so excited to see them! (I had only been in the hospital for one night, but I had missed them). Kamryn was in the nursery having the routine discharge check up done. My Doctor had already come in and cleared me to go home. I was alone. The Pediatrician entered my room. I was just getting out of bed to take a shower, get dressed and pack up. I wasn't looking directly at him, I was literally getting out of bed when he walked in, he started off

"Kamryn looks healthy."

I thought to myself, I know and I am so ready to go home and start my life as a family of 6.

"However,"

I looked up at him, I sensed a hesitation in his voice and then I saw his eyes. They looked so sad and distant. As if he felt sorry for what was coming next, but wanted to keep his distance.

"She has some characteristic of Down syndrome."

That moment...was life changing. Hot tears began to flood my checks. I was confused and scared. I asked him to repeat himself. He did. The whole room started to spin. In the midst of my sobbing I asked him (all at once) "What are you talking about? What characteristics? Where is she?"


Then he went over all the imperfections he physically saw in her. All of them. All those characteristics. I couldn't grasp what he was saying. I had held her in my arms most of the night, she was perfect, she looked like her sisters. I didn't see ANY of those characteristics he was describing. I thought for sure he was wrong and crazy. I remember running, running and screaming to the nursery. To see Kamryn, to hold her, to show him how wrong he was......

I believe how you receive the diagnosis and your personal life experiences leading up to that moment (or any moment that is life changing) has a significant impact on how you cope and deal with the situation.

On that day the joy in my heart was gone. It was taken.

It's back now. And she is perfect.

That was my beginning.

IFSP - SHE PASSED!

OK, so there is no pass or fail. But Kamryn is a Rock star! And her mom, well I am proud of her too. NO tears shed. I still struggle when I hear "Kamryn is doing great", because even though no one says it, I feel like it's followed with, "considering she has Down syndrome". I have decided I am over that. Down syndrome or not she is doing great. Her walking skills are emerging (that is a term I noticed therapist like to use). Her speech, self help, fine motor and other areas of development are at or close to age level.

It has been eye opening for me to look at each area of development. Watching my other girls grow from baby to toddler, I never noticed the specific details that went into learning new skills. I think one of the main reason Kamryn is doing so well is that she has 3 of the most amazing sisters....and Aunt, Grandma, Papa, Grammie and other family and friends that love her and our family so much.

The weekend is here and we started last night with PJ's, Pizza and Ponyo. It's a beautiful day and we have no specific plans.....which is even better! The girls are dancing to the High School Musical 3 CD so I am off to join them!

IFSP - Reminder Your Daughter has Down syndrome

The title above, that is how I feel. When I received Kamryn's diagnosis, the day after she was born, it shattered me emotionally. The first year of her life I was internally in pieces. I have come a long way from where I was. I have, for the most part, "accepted" that Kamryn has Down syndrome. I use quotes with the word acceptance because I did not take it willingly. Better than acceptance is that I no longer see her "Down syndrome." I just see my daughter. Her big, beautiful brown eyes (just like her sisters), her smile that seems to light up the room, her ever emerging personality. She is just as amazing as her sisters, just as unique and just as different. They are all so different. Down syndrome doesn't consume me like it did the first year of her life. In fact, it is a very small part of our lives. However, raising a child that has something extra, does bring something extra to parenting. IFSP is one of them. And for me it is a fat reminder that Kamryn has Down syndrome.

The IFSP (Individualized Family Service Plan), something I don't do with my other girls. Something you do when you have a child with "special needs" (I haven't decided if I like that term). You meet with your case worker and your child's therapists to review where your child is with physical and developmental milestones. Then, you develop goals that you and the therapists will work on for the next 6 months. (That is my short version of the IFSP, for my family and friends). We have Kamryn's IFSP meeting tomorrow. I am not looking forward to it. It is a reminder that things are different, that raising Kamryn is a little bit different.

The flip side. Times are so much better now than several years ago. I should appreciate what is taking place tomorrow. I do, but it still hurts. But I can take it, because she is so worth it.

Monday, after Spring Break

Back to the grind. Before any of my girls hit school age a friend informed me of how drastically my life would change once they did. She was right. First, we are confined (for the most part) Monday-Friday. No more weekday trips to the zoo, beach or lunch in the park. They are gone 6 hours a day - 5 days a week. Second, I miss them.

Play Dates and Date Night!

Spring break is coming to an end, but we had a blast and enjoyed every minute of it! We went to the Zoo, the Discovery Museum, and my favorite park twice! The girls had sleep overs with grandparents, Diondray and I took Jaden on a "date" to see the Diary of a Wimpy Kid (which, by the way, entertained me) and Diondray SURPRISED me with a date night to see ALICIA KEYS! One thing about Diondray and I, we go on dates, lots of them-thank you mom! Also, for some other exciting news (drum roll please) Kamryn is standing. She loves to go from the ground to the standing position and she holds her stand for a good 10 seconds. It has been an awesome week! Now, not that I want to share all my computer skills, but I don't know how to type in between or next to my pictures or any other exciting way, so here they are:

Forecast for Easter Weekend - RAIN

He had other plans. The sun was shining and we had a wonderful weekend. Although I have few pictures to prove it...we had 2 Easter egg hunts, play time at the park and a delicious Easter dinner!

a moment of sadness

I did not want this to be my 2nd post. I thought about just skipping it altogether. However, I promised myself if I was going to blog, I was going to be honest and real. We had a great day yesterday afternoon. The girls made cut-out sugar cookies and dyed Easter eggs. Then my mom came up to stay with them while Diondray and I went Easter shopping and out for a late dinner. It was a great day. As Diondray and I were getting into bed I began to cry. It was a soft cry and he only heard because my nose started to run and I began to sniff. He asked me what was wrong and I said "at this moment I feel sad." Then he asked me what I was thinking about and I said "don't say she will walk and next year she will be walking....because I know that. I just never thought that I would be taking our 20-month old to an Easter egg hunt tomorrow and she wouldn't be walking or running to collect eggs." (Kamryn can pull to stand and cruise. She has even taken two steps, but she isn't walking). It's a moment that comes from out of the blue. I feel this sadness that I don't want to feel. But it is real. I haven't had a moment like that in awhile, a moment when I actually cried. He put his hand on mine and said, "it's ok to be sad." I laid there for awhile before falling a sleep.

All the girls had so much fun at the Easter egg hunt today. And I didn't feel a hint of sadness. Even better, I read Monica's post tonight at http://www.monicacrumley.blogspot.com/ and I saw her little guy running to collect eggs! It made me smile! Look at her face....I have so many reasons to smile!