the journey in the unexpected and the fear of the unknowing...love has no boundries

These past few weeks have been pretty overwhelming for me with preparing for our IEP meeting for Dylan. When Dylan was born I did not think that this day would come so fast. I thought he would be my baby forever. There is not a day that goes by where I think about Dylan and what is future looks like for him. Sometimes I wish I had a crystal ball just so I can get a glimpse into his future. It scares me to death to think about it, but at the same time it brings me so much love and joy knowing how special he will be to each and everyone person that he meets along the way.

I try not to always talk about Down Syndrome on my blog to much as I don't want it to be a crutch or the topic of our family or are life. Dylan was born with Down Syndrome and had two holes in his heart which he then had open heart surgery at 4 months old to correct it. God gave us this amazing beautiful baby because he knew that we would be the best fit parents for him. I did not know we were having a child with down syndrome until after he was born (this still would have not changed my mind if I would have known before) it would have been the same outcome for our family and the decision my husband and I would have made. In saying this Dylan is a child of God and born just the way he was supposed to. Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges. Dylan's diagnosis does not justify who he is, it's just an added bonus in my eyes to this beautiful, soft hearted, gentle loving little boy. He is just like us or any other kid out there. We all have our challenges if we like it or not. The beauty in it, is that we all get to learn from our stories as we are all so different and unique.

You may or may not know a special needs parent, or you may be one yourself. As myself with a child with special needs I often don't share my feelings on this topic of my life, even sometimes only to my closets friends if I need to vent.  I am not an expert in any of this or an expert in parenting, because we all know that it's hard and we just learn as we go and do are darn best each and everyday. My only hope is that I can touch the lives of other's out there and hope that our story and the things I have learned along the way can help every family out there that may be going through the same thing, or will be that parent one day. The thing I love about this blog, social media (the thing we call the new age communication) it really helps us to connect in ways we could never imagine. Stories of tragic, triumph, love, determination, empowerment and motivation. With all of these stories we can learn from one to the next and learn along this crazy journey we call life. I may not be the best at grammar at this thing, but I sure do love to write and it comes from the deepest and strongest part of my heart. As a mom, women, friend, sister I love to learn from other women-we are power houses and we strive to teach our kids what we have learned growing up and want nothing but the best!

It's exhausting...  Parenting is already an exhausting overwhelming daily task. But parenting a child with special needs takes things to another level of craziness. Even when I have gotten a good night's sleep, or have had a vacation or a day at the spa to myself, there is always a level of physical tiredness that never leaves. It simply comes from the weight of tending to those needs 24 hours a day 7 days a week. From doctors visits that are not just the usual few times a year in our house they are about 3 times a month depending on what may arise. Therapies on a daily bases 2 hours a day and some 3 hours a day ,driving back and forth to drop off and pick up. Monthly assessments, new goals and working at home... to paying bills and arranging anything to ensure he gets to his appointments. Advocationg for him and ensuring he is right where he needs to be. The peaks and valleys of emotions are so much more extreme.


Jealous,but not really....Sometimes it's hard for me to come out and say it, but I can't help but compare a little and be jealous ( yes this is me being honest) when I see a 1 year old doing things that my soon to be 3 year old cannot do. It hurts me to see my son struggle so hard to learn and do something that comes so easy and naturally for a typical kid. Like holding a fork and feeding themselves, to drinking out of a straw, walking and running, saying "I love you" feeding themselves a snack, the list goes on..and weirdly enough it's also the same with other special needs kids that may be doing things faster then my son.  But in our home it's all about Dylan and when he meets his goals you better darn well believe we celebrate and we celebrate like crazy! As long as Dylan is happy and doing what he loves that is all that matters, and all that jealousy goes right out the window.

Sometimes it's lonely...  Being a parent sometimes can be lonely in general, but being a parent with a child with special needs can be even more lonely. I sometimes feel like an outsider around moms with typical kids. I always want to be happy for them when they brag about there 2 year old saying 200 words, or already knowing there ABC's or they even went "pee in the potty". It really has been a god sent and stress saviour meeting and connecting with so many other special needs moms, with whom I can relate to and not feel so uncomfortable about talking about my day in the life of therapy, doctors visits, feeding issues, sleeping problems, and just a shoulder to lean on.

The fear of the unknowing... I worry and I worry everyday. I worry I am not doing enough. What if I missed a day of working with Dylan, what if I missed a treatment or a diagnosis or weather he will get sick or not and have to take another visit to the doctors. I worry about Dylan's future, whether he will drive a car, get married, go to college-which now I have much hope for with the amazing foundation http://www.rubysrainbow.org/ ride a bike, his physical safety and who is mean to him or not at school. I worry about bills, daily chores and most importantly what would happen to Dylan and my kids if something happened to me. But what I do not fear is the love that Dylan has for his sister, and me his mom and his loving father and his friends. That gives me the greatest hope of all!

I am a mom and I am human...  There are days that I have been challenged to the max and beyond my limits of no tomorrow. Since Dylan was born I have grown and learned so much as a person and a mom. I have developed a even bigger heart and empathy for others in a way I never could have ever imagined. I have learned that each day is different then the next, that each child is different no matter what their genetic makeup is, I have learned that no life is perfect and if you know a perfect life please tell me because I would love to know! I have learned that love is never ending and it has no boundaries. I have learned that we "ALL" yes you and I and everyone out there have no limits to what we can do. Let me tell you my son may not be able to walk fast, or eat by himself, or speak much, but he can give the darn biggest hugs in the world and he can maneuver around an ipad like no ones business. But I am human, I am a mom and I am just like any other mom. Sometimes I have melt downs for no reason in the middle of dinner, sometimes I just want to drink a bottle of wine and text and complain to my girlfriends, and sometimes I literally just want to leave my house and not come back till bed time. I still have dreams and aspirations of my own. I love to write, listen to music, drink coffee, go out with my friends, sit and drink good wine, go to church, date nights with my husband, travel...etc. and if it's my son and daughter that I talk about for the rest of my life then I am ok with that because they are my life and me being a mom is exactly where I am supposed to be.

Dylan is the most awe inspiring and greatest gift that has ever happened to me and our family. Some days I want to tell the world about him and fly a plane and scream from as high as I can, and tell everyone how cute he is or that he met a milestone, or that he just said a word for the first time, or that he took his first steps, but then again there are days I just want to remain quite in my own home sheltered from the world and it's outside beauty. Raising a child with special needs has changed my life. I was raised in a family that family is all that matters and the value of that goes further then 100 dollars in a shopping mall. Nothing melts my heart more then having a sweet innocent child who was born with the impairments that make ordinary living and ordinary "performance" difficult or even impossible.

It has helped me to understand the true love is meeting someone (child, adult, special needs or not) exactly where he or she is, no matter how they stack up against what "should be". Raising a child with special needs child breaks all the "should Be's" that we idolize and build our lives around, and puts everything into perspective of love and understanding. So one last thing is I may have it tough, but In so many ways my world and life is blessed to the fullest. I hope both my children know how much we love them and how we prayed for them everyday before they came into this world. I pray they will always stand up for themselves and know how beautiful they are inside and out. Always be true to yourself and no matter where life may lead you always...always be your own different!

Happy Friday!

Michelle xo