I have been struggling and extremely frustrated these last few weeks.  The weight of taking care of a child with special needs isn’t easy and it surely isn’t a part-time job. Please don’t thing I am writing this to gain pity from people.  I only write to help myself grieve and come to an understanding of things for myself.  If along the way you find understanding a compassion for families in my situation I have succeeded as well.   I hear it all the time… “You are an amazing mom.”  I think to myself, “Are they really talking to me?”  If a person only knew how I feel I am failing as a parent.  I have read so many articles about parenting.  I know I am not the only one that feels like such a failure sometimes. But knowing it and feeling it are two different things. I would give anything to take back the moments I get so frustrated with Layken and yell at her.  But seriously I know she heard me ask her 10 times to get her room picked up or throw her garbage in the garbage, not just put it on the floor. I have come a long ways on not being such a control freak and neat freak….but I still think our home needs to be respected and clean.  After all we are paying good money to live in it, we should take care of it. I also want nothing more to raise children that respect no only people but property.  I want for my girls to be good friends as well. I am sure at least once a week I will tell Layken the properties it takes to make a good friend.  Because I will see her being bossy or just not listening to her friends. It scares me to think I have not instilled the good qualities in Layken to make her a good friend.  This is a work in progress and I am trying everything in my power to be a better example to Layken and Libby on what it takes to be a good friend. On a positive note, I have received a message from a friend who has a kid in Layken’s class.  This boy also has a sister in Kindergarten this year. Well one day the little sister was having a hard time. Layken and her brother went up to her, put their arms around her and walked her to her line before they went back to class. This is one of those proud mamma moments!

It’s moment like last week when it’s flat out hectic at bedtime. Not only do I want the girls to get some good sleep… I am hoping I can’t catch a few solid hours of sleep as well. We stopped everything and it was time for a story. Libby wasn’t sleeping yet so we had story time together.  Layken was reading a book to us and it had the word woof in it numerous times.  Every time Layken would say the word woof, Libby would full out giggle and laugh.  It’s that belly laugh that we as parents just can’t get enough of.  Libby’s giggles and laughs are becoming more frequent, but yet never enough for me.  I would give anything to hear her giggle every single day.  Again it’s something that we think is so simple for most, it’s so hard for Libby. Thankfully she her smile is non-stop every day!

Last week something very horrible happened and it has me so scared.  I know life is never long enough and we need to live it to the fullest.  I have grieved the death of some grandparents, and sadly some close and dear friends while in high school, but for some reason the death of a child not much older than mine hit me hard.  This sweet baby girl was suffering from the same rare brain malformation Libby has.  In the beginning I was in such denial of her condition.  I thought without a doubt in my mind, Libby will overcome this.  She won’t be that vegetable the doctor told me she will be. She will overcome all odds.  I still have some of these hopes and dreams for her.  I have just been punched by reality that it might take her longer and it is surely going to be a bumpier road than I had planned.  None the less we will keep on swimming! Then just when things are going smoothly, I hear of a death of a far too young child. The scare of losing Libby and or Layken for that matter is something I need to get out of my mind.  I should instead look back to the MOMENTS that I will never forget. Seeing the love my two girls have for each other is just the beginning of these UNFORGETTABLE MOMENTS.