Tuesday, March 18, 2014

Dear Mom, it's Ok...

I really like the Dear new Mom letters...now that Maddie is almost 5....I like the hopeful reassurance that they give future Moms of Down syndrome kiddos...because the truth is when you get a diagnosis like "your baby is positive for trisomy 21" there really is no "right" way of dealing with it...there is just how ever the new Mom feels...thats it...I do not think a letter would have helped me...because I truly believed I was the only one that had ever felt this disappointment...maybe it is my nature to be self centered, selfish, immature...but it was how I felt...I hated everything about Maddie's extra chromosome...I found nothing in the beginning reassuring or comforting...I read the book that doctors give out called "Gifts"...I threw it out...It made me feel bad that I was not happy...it made me feel like a inferior woman because I could not just be ok with it...that's why I started blogging...for me...because no one in this world understood me and my sadness...I felt alone and isolated...I felt small and lonely because I had to make the decision if Maddie lives or dies...I had to be the vessel in which held the baby that people do not want...I was the one with the burden...and at the time I felt like I was the only one that felt this way...I was told to be happy and that someday I was going to be thankful...but in those dark days I could not see that...

fast forward to Maddie's delivery...and the first time I touched, smelled, and saw Maddie...that was the day I said to myself -thank you...thank you for being the great vessel...thank you for being strong enough to give birth to this perfect child....and I also said thank you to my husband and doctors that made that moment possible...throughout her past 5 years of life....her milestones, her accomplishments, her becoming who she is today...I have never again thought about life being ok without her...I am thankful daily that she is my girl...Maddie is the reason I am the person I am today...that selfish me is gone...and it is because of Maddie that I truly understand fighting for something that is important...it is because of Maddie that I truly understand life is not fair and that it is not suppose to be...and that it truly is ok...it is because of Maddie that I want to live a full life with people that encourage our differences and cheer us on through the trials of being a special needs mom...because our life is what it is...our "normal" is a village of doctors, therapists, case managers, and teachers helping parent our child along...it's really not a big deal....but it is....and that is ok...what I am trying to say to the new Mom out there...is that it is ok to be pissed and it is ok to be sad and it's ok to mourn the child you thought you were having....and it's just ok...your journey may be different then the one you dreamed...but being a mother to a extra chromosome is exciting, challenging, hopeful,rewarding and not just plain vanilla! Parenting Maddie is not about Down syndrome...it's about a perfect little girl that will show you how life should be lived...without judgement, boundaries, preconceived notions of what's "normal" and safe...

I can't tell you everything is going to be ok...but I can tell you that in this big world of Down syndrome parents we will love your child and see all that your child can offer and we will value it...we will cry with you and  give virtual high fives when your child rolls over, eats with a fork, stands up, walks, talks, hugs, says I love you, goes to school and becomes who they are...with no judgement on the road it took to get them there...

So to future Moms out there of kiddos with the extra chromosome...you are not alone...someday maybe you will find your peace or already have....and if you do...tell me how! So I can learn...because I still have challenging days and bad days...but mostly I have great days because Maddie is alive and I get to know her better everyday...lucky us! And most of all I really enjoy the Dear future Mom letters  and how great parenting Maddie is and how much better it is going to get...because sharing is caring!