What has your child taught you?

[Kei_as_in_K]

When we found out William would have heart defects and most likely Trisomy 21/aka Down syndrome (there were several markers on the ultrasound & I refused amnio), I set out to learn what I could for him.
I feel my education began with him. The medical terminology, the acronyms, etc.
I've learned:
..that doctors don't know everything nor do I have to take what they say as the end-all & be-all.
..not everything I need to know about raising a child w/special needs is in a book (or many books).
..that as boundless as my love for my children is, it can expand even more.
..to not just raise the bar for William but for myself as well. I always raised it for my other kids, but not for me... until William.
..as shy as I've been most of my life, having my son has helped me speak up and come out of my shell.
..how to slow down and enjoy every moment.
..that I'm not too old to learn a new language... sign language.
And I've learned that one child... one tiny wonderful beautiful child... can expand my world and his family's world beyond anything I could have imagined. That because of him, I've gotten to meet and know more people than I would have otherwise.

I know I'm not alone.... what have you learned?

[aligreat]

No matter what Cassia has needed I have already had "it" in my bag of tricks.

--She was in intensive care for 12 weeks after she was born. This didn't phase me because I had been working in the emergency room of the hospital where she was born. When her medical equipment sounded it was always a familiar sound rather than a cause for alarm within myself. The neonatologist was always asking me if I was in denial because I seemed so calm. It was actually easier than my job in the ER because I didn't really have to do anything. The nurses told me that a calm mother was exactly what Cassia needed.

--When the audiologist was telling me that Cassia had severe to profound hearing loss, I could tell that he was trying to comfort me. I told him that I had taken ASL as my foreign language in college and already knew about Deaf Culture. The news that she could not hear was not upsetting to me at all.

--When Cassia began getting PT and OT my knowlege of massage proved very useful. (I had dropped out of college my junior year to attend massage school, much to the dismay of my parents! Don't worry I went back and finished my degree.) One time I was working with Cassia's feeding therapist, showing her the massage technique I had been using in Cassia's mouth. The woman looked at me and said that she knows professional OTs who do not know how to do what I had just done.

--When Cassia needed a special food with enough calories I got the feeling that I needed to go to a store where I had never shopped previously. Sure enough they had it.

Whether you call it inspiration, intuition, or sheer dumb luck I know that this works for me in my life. Having this beautiful little girl has answered many questions that I had about the path of my life. Even the fact that she is a twin has been helpful to her. She has someone just slightly ahead of her in development to show her what to do. I have always tried to follow what I felt to be right, and she has shown me that I have made good choices.

[amiller]

Being incredibly squeamish about bodily fluids and the like, I was totally grossed out when I learned I had a "medically complex" infant. I never thought I could do it! But little did I know - I had the strength within me after all! Anyka has taught me that my limitations are all in my head and that I can do anything required to take care of my kids. She has given me confidence and unconditional love - who could ask for more?

[kimberly]

I love this thread -- I want it to go on and on...

For me, it is selflessness. I am constantly amazed at how I've learned to care so little for myself. I can never believe just how much I would give for my little ones to have whatever it is they need. And, of course, I don't mind putting all of my needs and chores aside as long as I have the time to cuddle with them when they are struggling or just having a hard day.

[Yoshsmom]

Hi, I'm new here and just posted an introduction in the Welcome thread.

Yosh has taught me that I'm stronger than I ever thought I could be. After getting through 10 weeks of not being able to take my baby home, I know his dad and I can get through anything.

:D I've learned taht taking care of 12 special needs toddlers in a classroom is easy compared to being mom to one very active little boy 24/7, and I love every exhausting minute of it.

I've learned to be somewhat more organized, since Yosh medical records take up an entire file drawer and I have to deal with insurance companies and hospital billing. I've also learned taht it is absolutely impossible to get a dr, hospital and anesthesiologist that are all on your insurance plan and how to deal with it, sort of. :confused:

I've learned that everything happens for a reason, even if I don't know what that reason is.

My beautiful little boy has bridged a gap between me and my family that I thought could never be closed and I've learned to accept people for who they are and not who I want them to be. Also that life is too precious to hold on to old issues.

Every new skill, every milestone is a cause for celebration. Yosh is on his own schedule and will learn what he needs when he is ready to learn it. Worrying about what he's not doing or should be doing is a waste of time and not fair to either one of us.

There's so much more, but I think I'll stop here before this turns into a novel.

[Rachel]

Lucy and Leah taught us to chart our own course. I had to throw away "What to Expect When You Are Expecting," They don't cover Fetal Surgery For Spina Bifida in there.

I had to throw away all those books, "What to Expect in the First Year." Lucy never hit one milestone on time. She didn't sit up on her own until she was 4, but you know what? She did it. She did sit up and she did it when she was ready. Her PT and OT said, "We can't even pat ourselves on the back for that, she was just ready."

My girls have taught me to Expect Miracles.

I think of all that Leah has done. All the lives she has touched and all the families she has filled with hope. 9 years ago when she was born, I had no idea of the impact she would have on our lives. She taught me that I am capable of so much more than I ever dreamed. She helped prepare us for Lucy.

Before we had Lucy I placed so many limitations on myself. But Lucy came along and blew those wide open. She showed me that anything is possible. That every day should be celebrated. She taught us to notice and appreciate every little, tiny, eesy weensy milestone.

"Lucy will do what Lucy will do when Lucy is ready to do it." You've heard it in SHINE, but I never thought of it as a lyric, it was my little chant. It was my reminder that it's not about when I want her to do something, or hope she will acheive it. It's not in my hands. One day I was at lunch with my dad I was talking about the concept for the song Shine. I told him that a common thread I had noticed with families who have special needs children is that there seems cycle. You hope to see improvement, you look closely for the changes, but nothing changes and then suddenly for no good reason there is a huge change. I told him, what I've really learned is that "Lucy will do what Lucy will do when Lucy is ready to do it." He said, "That's a great lyric!"
I still couldn't hear it as a lyric, it was my security blanket, it kept my hopes up.

When I get down, I think about the first time I saw Lucy ride a tricycle. I kept looking around the bike, completely shocked that no one was pushing her, nothing but her little skinny legs propelling the bike forward. I saw it, but I couldn't believe it. How can her seemingly useless legs do that? She can't kneel, she can't stand, she can't bear weight. But, she can ride a bike?????

Expect miracles!

[amiller]

Wow. That is amazing! I am so proud to be a part of this group!

[aligreat]

Lucy and Leah taught us to chart our own course. I had to throw away "What to Expect When You Are Expecting," They don't cover Fetal Surgery For Spina Bifida in there.




Did you have fetal surgery? If so, did you have to fly out to UCSF to have it? I know that they were (and maybe still are) the only place in the world where that was done. Cassia was transferred to UCSF when she was 9 weeks old, and she received wonderful care there. Just curious...

[Rachel]

We actually flew to Vanderbilt University in Tennessee. Lucy and I were the 82nd fetal surgery patients at Vandy. To read more about our surgery and to even see pictures, you can visit www.geocities.com/ra_ron

[aligreat]

We actually flew to Vanderbilt University in Tennessee. Lucy and I were the 82nd fetal surgery patients at Vandy. To read more about our surgery and to even see pictures, you can visit www.geocities.com/ra_ron

I loved reading all of those emails you sent out while pregnant with Lucy. It brought back some memories for me. I was on bedrest for 31 weeks with the twins. I had an emergency c-section, and it was surreal. All of a sudden 4 nurses came rushing into my room, starting IVs, putting oxyen on me, calling the doctor, telling me that I needed to call my husband, etc. I was in the hospital for 20 days last year, but that isn't so long when you consider that Cassia was in the NICU for 12 weeks, 9 weeks at the level 3 hospital where she was born and 3 weeks at UCSF Children's Medical Center. You and Aaron really captured the feelings that go along with that sort of an experience. If you ever have any spare time (ha!) you should write a book.

[amiller]

If you ever have any spare time (ha!) you should write a book.

Ooh, how cool would THAT be?! I would definitely love it.

[MmaBasotho]

Paula is a kid who knows deep in her heart what she needs and how important it is to get those needs met. I'm basically the opposite. After sacrificing my needs for the first 18 months of her life, I had to start learning how to set some limits that would allow me to get some of my needs met and most of hers.

This is still a struggle, but it's been a very good lesson for me, one that I needed to learn for a long time. She's a hard teacher, but I love her for it. In many ways she's been my role model for putting my needs first!

[lovemy6sweeties]

and they're hard for me to put into words - so that's why I haven't posted :)

Brady has taught me that the things that I used to think were important in life, aren't really important at all. He has taught me that children and people have inherent worth, that it's not "what" you can do, but WHO you are that really matters. I remember going to the private preschool that all my children attended (when being really smart, and being ahead of everyone else was important to me) and hearing the director say - it doesn't matter who you are in this life, it's what you can do and accomplish that matters - and realizing that he had it allllll wrong. My priorities changed with Brady, and I can't thank him enough for that!

Brady has taught me the meaning of true happiness, the joy of loving unconditionally, and to appreciate, and celebrate the little things in life. In fact, I rarely noticed the little things before Brady - I was too busy running around with the busy life that comes with 5 children. But now I notice the little things - the flowers, the butterflies, all the things in the world that Brady sees, and finds wonder and joy in! His smile and enthusiasm for life, brighten my day, and lighten my life - I can't help but smile and laugh when he does.

I can't imagine my life without Brady - and I am amazed every day at how many people tell me they're sorry, or that it must be very hard to raise a special needs child. He does have his moments, but every time someone says that to me, I think, I'm sorry for you that you don't know the immense joy that I do, because Brady is in my life :)

[amiller]

every time someone says that to me, I think, I'm sorry for you that you don't know the immense joy that I do, because Brady is in my life :)

This is absolutely bueatiful. And you're right - Brady has something special! Months after meeting him, Anyka remembers him and his smile warms my heart!