Date Night

I believe it's our obligation as parents to not hinder our children's growth and potential, with an extra special child, this obligation becomes more paramount. Doing for your child, instead of allowing for themselves further disables them. 


Throughout the 6th Annual AMCSI Conference in Kansas City, there was a reoccurring comment that I heard from the adults (or young adults). I heard it in the panel discussion where everyone had the opportunity to ask adults with Arthrogryposis how they did it, then how they figured it out. Then in the Amyoplasia session I facilitated, again the reoccurring comment was, "Don't do everything for the kids; let them figure it out." I have always tried to make sure I am extra patient with my son. It would be substantially easier and faster for me to do it for him, BUT it's much more important for him, for his future for him to do it by himself. If he asks for help, I try my best to guide him towards figuring it out.

So on my date with my son we had steak for dinner then we took a stroll through downtown Springfield. We walked around some of the square, most of the time he and I were hand in hand. At certain moments Little Louie would decide he wanted me to hold both his hands, one hand wasn't good enough. Talk about warm my heart! When it was time to walk to the movie theater, he wanted to see Cars 2 (again), we headed back. He didn't complain about the long walk but a couple of times he'd say, "I feel like I'm getting skinnier." "Are you getting tired, do you need to rest?" I would ask. "No mommy, I'm just getting skinnier." We got to Hollywood Theater and as we approached the steps he said to me, "Mommy can you please let go of my hand?" You see he needed me to let go, so that he would  be able to walk up those steps alone. 

When you hear the same message over and over again, you can’t ignore what’s being said. This is what my son will constantly need from me. He will constantly need me to let go so that he can do it alone. So I shall.

He Can Do It All...

This is my little guy’s second year of attending the school district’s preschool program. I’ve been amazed at his progress. He’s extremely independent. He puts away his own backpack like all the other kids. He uses his “writing bird” when it is time to write. His drawings are phenomenal and just yesterday we discovered he could get his OWN water out of the water fountain. I’m trying really hard to ignore all the icky germs that he was exposed to because OH DEAR LORD HE DID IT HIMSELF!!!!

I remember when he was first born being so upset because I was afraid he would not get to experience what other kids normally do. So this blog really is for those parents who are new to Arthrogryposis (or any other special needs). I know some of you are struggling because your child may not walk yet or may not be able to crawl; and some of you may be pregnant carrying a child with special needs. Please do not be discouraged. I know I was when my son was born. I assumed he would not be able to do some of the many things we all take for granted. Well here I am five years later and I was so very wrong. Not only is he doing the aforementioned, he can also walk up steps that measure 9” high, he even hides under the bed when he thinks he is in trouble. For those of you who do not really know my son, both his uppers (arms) and lowers (legs) are affected.

Give them the independence to learn on their own, to figure things out and you will be awed. It is easy to do for our children, because to our thinking they cannot. But here is what I have learned: THEY CAN. We as parents just need to be strong enough to allow them to learn on their own and to watch them as they struggle to adapt. If you allow them their independence, you will be amazed at what your extra special child will teach you, and you will see for yourself that there are no limits to what can be accomplished.

Lil Louie's First Day of School Revisited...

I wrote this in 2007 on my little guy's first day of preschool.
Many of my fellow Arthrogryposis parents are sending their little ones to their first day of school and thought I'd share this one again. Love you and miss you all...

November 19, 2007

Firsts are so hard on me. I do not know why. I hate it when that first birthday comes around. I hate it when that first step comes. I hate that first word. I hate the first tantrum. I hate the first crawl. That first accident. I hate that first time they dress themselves. I hate that first crush. I hate that first girlfriend or that first boyfriend. Or that first best friend. That first fall. That first time polishing of nails. That first trip to the doctor. To the hospital. That first road trip. That first visit to Texas or Colorado to visit the grandparents. I hate it all. I hate it for what it stands for. I hate it for what it represents. Because each first is that step away from me, away from home, away from our family. Each first is a step towards their independence. I get to take many firsts four times over. Good LORD what was I thinking?!?! Today my son took a major first! As he took his steps towards his first day of school. I saw him taking those first very symbolic steps towards his independence. Except I didn't hate it so much. I hated it because I was scared for him. I was scared he'd be made fun of. I was scared he would fall. I was scared people would look and stare and wonder and ridicule. I was scared the kids would torment and taunt him. I was scared that he wouldn't adjust. I was scared of so many things for him. But I didn't crumble and cave to the desire to grab my son in my arms and run to my car. I didn't run off with him, away from the potential negativity, from everything I feared because more than anything for him, my son, I want him to be independent. I need him to take those many million firsts in life. Because I need him to be independent, and loved and respected, and cherished but more importantly I need him to be looked at no differently than any of the other child in that school or anywhere else. If I prohibit those many firsts he must take, I know and acknowledge that I would prohibit what I want for him more than anything in the world. I know my son is different. I know the world regardless of what they say to me, see my son as different and wonder how he will adapt in this world. But I also know that any person who takes the time to know him will see how very wonderful, unique and amazing my son is. So today on your first day my little guy, I fought back the tears, and held my head up high, because you were taking a most important first today, walking your first steps towards your preschool class.

What if...

Many parents prior to embarking on becoming a parent, or trying to conceive have a tendency of asking themselves, “What if something goes wrong?” Question if the timing is perfect for their first child or their next addition.

I recall being at a local amusement park, in the nursing center, nursing my Lily Rose talking to another mother there. She was nursing her number two and I told her I was nursing my fourth. As I continued to rock my Lily, the mother said wow, I’d love to have more kids but my husband and I are just aren’t sure. We have two healthy kids. Isn’t that enough? What if the next time something goes wrong? She then asked me if I was scared about that.

I remember being a bit taken back by her question. Paused. Then replied: I have the what if. My son is the “what if.” And the love for him is indescribable.

And although that was a good answer, I wish I could have expounded then like I can now. My “what if” is turning 5 soon. I remember when he was born: the silence; the calm; how serene I felt looking at him. Thinking there’s nothing wrong with my baby he’s beautiful just like all my other children. Come what may, this baby is mine to love and boy did I/ do I love him. Please don’t misunderstand me, the enormity of his condition hit me hard and was absolutely devastating, but in the first moments of holding him, I knew to the core that things were just as they should be. I remember calling friends and family, loved ones and just simply saying, “There’s something wrong with the baby. We don’t know what we’re dealing with, but please pray.” Everyone was so strong for us, because they knew that’s what we needed. Even though I know when they weren’t in our presence, they shed their tears, whispered their fears and prayed with all they had.

But now as I approach Little Louie’s 5th birthday, I reflect on my “what if” and here’s what I say to anyone pondering and wondering... please remember that being a parent is not a trivial task. It takes great responsibility if one is to be a good parent. We as parents will always have issues that must be addressed with our children. From fevers, to emotional problems, to cognitive delays, to physical issues, just to name a few. Some of us already have the "what if" child, some of us were blessed with more than just one. But in all actuality regardless of whether or not a first (or second or third, etc…) child is born with Arthrogryposis, or some other "condition" those are merely the known and seen issues. As a child grows, we parents will continue to be faced with much more complex issues. So don't be afraid of having more children, or trying for your first as long as you are prepared to handle the responsibility of parenting that child, because really they are truly all perfect, regardless of the diagnosis. All four of my children are absolutely beautiful.

Happy 5th Birthday my son.

--- r.g. morales

Internal Struggle

Life has been an absolute roller coaster ride. The Arthrogryposis Convention is quickly approaching. We're still trying to figure out exactly how we're going to afford to get there this year. But how can the President not get there. The economy is taking a toll on everything and everyone, but somehow we will get there this summer.

Lil Louie has been doing really well despite his continued falls. The other day he hit his chin so hard, that today is day 5 with that nasty bruise. His personality is changing into this tough but amazingly SWEET little guy. I'm so proud of him. He hugs me his way. And tells me he loves me "this much" by spreading me fingers, since he is unable to spread his own. Not a day goes by when I don't catch him performing a little miracle and that perpetual lump in my throat grows ever larger. I carried my son to full term unaware of his condition. He was born at 8 lbs 13 ozs. A very healthy baby especially for a mom of 5' height but especially for being a child with Arthrogryposis. It wasn't until I joined www.amcsupport.org that I learned that typically children with Arthrogryposis are born not just premature but also weighing very little. I wonder how I would have endured the strain of knowing of my son's condition before giving birth to him. My pregnancy was very stressful, and have always been thankful that I was unaware. My son when born was chubby, seemingly healthy except for a few anomalies. And I ponder if my ignorance of his condition saved him.

There are many different forms of Arthrogryposis. Some are lethal. Some are not. Some could be. I didn't know until recently that the split of those that survive are 50/50. One of the hardest parts of being involved with Arthrogryposis Multiplex Congenita Support, Inc is definitely knowing about the babies that bless us with their presence for a short time. On January 30, 2009 we lost a special baby. I don't feel comfortable saying her name, since I didn't ask the parents' permission. But she was here with her parents for a blink of an eye. I'm baffled how a child who I have never met before can bring me to tears. How even though I have never met the parents, or met their baby, I mourn with them. Hurt with them.

I just don't understand how some make it and some don't. I am so sorry that their baby didn't. I'm sorry for all the ones who don't. And learning of those who opt to terminate their pregnancy absolutely shatters my heart. I don't quite understand why the ones that do survive, or live, must endure so much. I've been struggling with that one for a while now. And I'm still not at peace with it at all. I know ultimately I must let go of this struggle. I'm just not there yet.

Shriner's Appointment 20 Jan 2009

My two guys accompanied by Lily and Frank went to lil Louie's appointment at the Shriner's Hospital. Overall it was good news. Lil Louie has maintained the bend on his right elbow. And somehow the ROM on the left has increased by 10 degrees. The doctor and his therapists seems really pleased with how our little guy is doing. But of course we have homework assignments: we need work on improving finger strength, hand strength, and do wrist stretches to help improve range of motion there.

Defying the Odds

With our Lily turning 2 soon, we decided to go ahead and remove the safety gate that leads downstairs. I'm not sure who I am more concerned for. Lily seems to be handling the steps just fine, just as Lil Louie. I see him standing at the top of the steps looking down, and leans forward ever so slightly to toss a toy downstairs. I guess he's figured out that it's easier to throw it down than try to attempt to carry it down. It works and he's doing the steps pretty well. He even pushes off of them to go down faster.

Just to clarify he isn't walking up and down the steps. He hasn't figured that one out yet. And to be quite candid I'm not ready for that just yet. But he's going down on his seat and worms his way up on his stomach. I try really hard to offer encouragement. And I try really hard to stay seated when I see him struggling to figure something out. But I watch. And I let him learn.

Some people ask us how he is doing all the things that he does. And one big plus is that Louie is here at home to work with him. But the other thing is that we allow Lil Louie to figure things out himself. I want him to be independent as an adult, so I have to allow him to be independent as a child.

If you are lucky enough to have a special child try to allow them to live as independently as possible. My son is constantly amazing me by defying the odds because we do.