Thoughts of a Mom

I came upon these "thoughts" the other day, and I really related to them. I think that all of you probably can, too. There was no author listed, so if anyone has seen this before and knows who the author is, please let me know so I can give credit where credit is due.

Thoughts of a Mom

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.

You're my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changes. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove the insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if it means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line.

We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A trip to Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and re read them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front door on Halloween, and we have found ways to help our deaf children form words, "trick or treat". We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy.

We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.

And we've mourned because we left the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in like knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands and together, we special mothers and our special children, reach for the stars.

Would you trade?

I never watch the news. So why did I turn it on three nights ago? I don't know. But, I think I was supposed to. This is what I saw.

If you clicked on that link, you saw a perfectly normal and healthy 4 year old girl who should have had cerebral palsy. When she was born at the UofU Hospital, her Mother was part of an experimental study. Because she was at risk for pre-term labor (on average at least 11 weeks early) she was given magnesium sulfate. The little girl was born with signs of cerebral palsy, but none ever developed.



(That is my dramatic pause.)
I was at the UofU Hospital 4 years ago, pregnant with M.K.. I am a Mother at high risk for pre-term labor. My Angel was 16 weeks early, and A. was 14 weeks early. I did not get magnesium sulfate 4 years ago, and my little girl does have cerebral palsy.

When I first heard all this, I was flooded with a million different thoughts and emotions all at once. It's hard to concentrate on just one or two, and even harder to explain them in writing. I watched a perfect little girl, who could have been like my little M.K.. I was in the same place at the same time. The right place at the right time to prevent the disorder she struggles with every day. So close, and yet we missed the magic entirely. I wondered, why wasn't I in the study? How could we have been so close and missed it? I felt jipped. I watched the perfect girl. I saw her mother push her on a swing, and for a brief second, I felt like their smiling faces were mocking me through the TV screen. I thought about my M.K. My sweet, sweet M.K. What might have been. What could have been. What should have been?

Was it really what should have been?
No.
I know it. I feel deep within my heart.

If I could go back, if I could prevent her from having cerebral palsy, what would it do? What would the purpose be? Would she still be who she is? Have the same personality? Or would I just be trading these particular struggles for different ones? And would those new, different struggles be any better or worse for her than what she has now? Would they take the twinkle out of her eye? And the music out of her laugh?

I certainly would not have ever chosen to have a special needs child. But now that I have one, I wouldn't trade her for the world. She is perfect just the way she is.

In a way, I'm grateful --grateful that I've been blessed with the ability not to understand it, but to see it's beauty and be grateful for it anyway.

I have come to appreciate Holland.
Holland is Home.
Holland is beautiful.

would you trade?

One Mother's Story

Hello everyone! I am "Happy in Holland", and I am the first to join in the fun here at "Thru the Tulips". I'm excited to help Tiptoe Mama get the ball rolling on this site and hopefully connect with many other parents of special needs children.

I guess I should tell you a little bit about myself and the story of why I am here. Get a drink and take a bathroom break, cuz it's a long one. JK. Here it goes:

My hubby and I have been married for 8 years now, and we are the proud parents of two beautiful children, Mason (4 1/2) and Mialee (1 1/2). Mason is our little warrior. No matter what cards he is dealt, he just keeps fighting and conquering. When I was pregnant with Mason my placenta abrupted at 31 weeks, and he was born 2 months early at 32 weeks. He weighed in at 4 lbs 3 oz and measured 17 3/4 inches long. Apparently he was the "big guy" in the NICU. After a 4 week NICU stay, he joined us at home on Mother's Day (making it a very special first Mother's Day for me).

Like every new parent does (and probably shouldn't do), I found myself comparing Mason to children around us. When I voiced concerns at well-baby check-ups, I was always told "The delays are due to his prematurity. Don't worry." I accepted this as truth for a long time, but there were things about Mason that didn't jive with what I learned about child development in my college courses. Having a degree in Early Childhood Education, I knew a thing or two about what he "should" and "should not" be doing. I had him in an Early Intervention program by the time he was 8 months old. He qualified for physical therapy--which was fabulous. His fantastic therapist helped him learn to crawl and walk. After he began walking he was released, but I had him evaluated for speech services. I was told he tested within a normal range, but call if I have further concerns. As Mason continued to grow, I continued to watch his speech delay. He was a sponge. He had a HUGE vocabulary, but he couldn't use words to express himself. He could only label things.

Just before Mason turned 3 years old I had him evaluated again, and he qualified for speech services. He began attending an Early Intervention Preschool just after his 3rd birthday. When we went in to meet his teacher I casually mentioned something that was looming in the back of my head. I said, "I've wondered a little bit about autism, but what am I thinking? He doesn't have autism." His teacher was quite familiar with autism and said she'd watch him for a while and see what she thought. Boy was my world shattered the day I picked him up from school and she pulled me aside and said, "You know, I think he does have autism." She had already called in some specialists to observe him and gave me their reports along with stacks of books and resources. I went right home and started researching, spending hours and hours reading books and searching the internet, just to learn about autism.

I didn't know what to do or how to cope. WHAT?! MY child can't have autism--but I knew in my heart that his teacher was right. I think I knew it all along. Over the previous year I had been noticing new behaviors that alarmed me. Mason developed echolalia (repeating words and phrases previously heard from tv shows, books, or conversations). He didn't play with any of his toys correctly. He would just line them all up throughout the house. He would do and undo the same puzzle for hours at a time. He had real issues with having dirty hands, etc. He even began flapping his hands when he was excited. These are just a few. Red flags started going up in my head telling me that these behaviors were not normal. But.....I was going to give him the benefit of the doubt and allow him some time to outgrow it. The problem was.......months passed....more months passed....and he never outgrew it. Things became worse. He started having these horrible tantrums, flopping on the floor kicking and screaming, even so tense he was shaking at times, and I had no idea why. There was nothing I could do to calm him or help him. It's actually like I wasn't even there. No acknowledgment whatsoever. The tantrums began getting closer together until one day, mid-tantrum, I called his pediatrician from my cell phone in the car and said, "Something is wrong with my son. This is not normal." This was just days before his teacher talked with me.

I think my world literally stopped for a day or two when I heard the word autism related to my son. I needed time for it to sink in. I went through a bit of a mourning period where I literally mourned the child that I thought I had. (This is where "Welcome to Holland comes in".) I began all the worries about his future. And I cried a lot. Then one day, about a week later, I woke up. I woke up from that funk I was in and I realized that he is the same sweet little boy that he has always been. He has not changed at all, so why should any plans I had for his future change either. I came to peace quickly with Mason having autism, and I began to embrace it. I began working on learning what I could, getting involved where I could, and getting him the best services I could. His autism brought our family closer together. You never think that you can love your child any more than you already do, but having autism add to Mason's uniqueness made us love him even more.

He began a highly intensive school program for autistic children just a couple months later, and he is now beginning his second year in that program. He has made DRAMATIC improvements in the last year. It is amazing. I have every hope that he will be able to function as a normal child/teenager/adult. Due to the vast improvements, the psychologist we have been meeting with recently gave Mason a diagnosis of PDD-NOS or atypical autism instead of classic autism. This is wonderful news to us. He truly is the most amazing child you'll ever meet.

Not that I haven't talked about Mason enough (there really is sooooo much more to tell about his life), but I'm going to move on and tell you about our sweet princess Mialee. She is a year and a half and a girly girl. She loves shoes, purses, necklaces, shoes, Dora, and shoes. Oh yeah.....did I mention that she loves shoes? Thus far, she seems to be developing normally. I don't have many concerns about her right now, though you can bet I'll be watching her very closely over the next couple years. We are at higher risk for having more children with autism, so it is always in the back of my mind. Either way, autism or no autism, one thing or another, they are our children, and we love them dearly. We wouldn't trade them for the world.

And that is my story----or at least the short version (haha--I know this post is anything but short). I have had a lot of moments where I just wished I had someone to talk to who knew what it was like to have a child with special needs. I'm hoping this site will unite some of us together, so we always have a place to go where someone will understand our rants and our raves, the good and the bad, no matter how simple they are. I can't wait to meet you all!

WELCOME!

Hi, let me introduce myself. I am 'tiptoe mama'. I chose the name mostly because it goes along with the whole "tulip theme", but also because my little ones keep me on my tip toes!

My husband and I have three children. Our Angel, Our Miracle, and Our Blessing. My first daughter was born at 24 weeks and only lived a few minutes. She is our angel. Our second child, ("A" as I will call him here) was born at 27 weeks and weighed 1 lb 1 oz. He is now six years old and has had no physical or health related problems from his prematurity. He is our Miracle. Our last child ("M.K.") was born at 36 weeks and we thought she had made it here better off than the others. Until we started noticing that she wasn't hitting the milestones most babies should hit. After about a year, and lots of testing, we were told that she has Cerebral Palsy. She is our Blessing. A blessing because she has taught me to appreciate the small things in life; a single word said out loud, sitting up, walking. Those things have been difficult for her, to say the least. And yet, for most of my life I've taken them all for granted. She is three years old, and as I watch her, worrying, and so aware of all that she can't do, and what affect it may have on her life-- she goes through life smiling and anxious to tackle the next challenge. She doesn't worry about "can't". And I realize that it's only me, the strong healthy parent who is limited by that idea. She is my blessing. Because of her I see the world through different eyes.

As a special needs parent, I recognize that I'm a little bit different than 'regular' moms. While they run to soccer practice and piano lessons, I'm running to therapists and doctors appointments. It's a different world, full of heartache at times, a lot of worry, a lot of work, but it's a beautiful, and fulfilling world as well. I'm sure other special needs parents can truly understand what I mean by that.

I have a great family and wonderful friends who are supportive and understanding. But there's something to be said for the support of someone who can relate first hand. That's why I decided to start this blog. Because special needs parents have special needs too, and sometimes I think we just need each other. The idea behind this blog is to have a place where we as parents and caregivers of special needs kids can share some of our thoughts, feelings and experiences with each other whether happy or sad. A place to make and build friendships. A place to support and be supported.

Thank you for taking the time to check out our little site. I hope you'll come back often and feel free to participate in what ever way you are comfortable with. You can be a regular contributor by e-mailing me at tiptoemama@gmail.com, or be a guest poster the same way. You can simply read the blog and make comments on the posts, and you are always welcome to 'lurk' and read silently without ever making yourself known. Thanks for looking, and spread the word!

Regular contributors will have an illustration made to be posted in the side bar, and can choose to use their real name, or a pseudo name.