Saturday, June 2, 2012

Just a couple of special needs parents.

There are many highs and lows to raising Madie San...There are many highs and lows for the parents(US) raising Madie San... Madie, you can make me laugh you can make me cry...but your OUR girl. Our sweet girl. it takes huge toll when you love each other so much and put each other on back burners because of so much worry about our lil one... Its really hard when I am so consumed with Madie and Hubster is so consumed with work (and trying to juggle family too!) and trying to bring home the bacon while I scramble the eggs..hoping that when he gets home they are still warm. I can only say to couples or husbands and wives of special needs kids...DONT loose each other. Keep times for yourselves...When you loose each other its really hard to get back on track and takes allot of healing...and thoughts of divorce runs thru your feel like you just cant make each other dont feel intimate with each feel distant..sad.. You pray to God to just simply HOLD your hands together and help you keep your emotions in check and make the right not give up no matter what Rd decides to be help bring back the butterflies in your tummy when you see each other... Meanwhile Madie is STILL here...she is not going anywhere. And she needs us both. The best parents for her..! Its been a rough road..I realized quickly that things had to change! I had to put my heart on my sleeve and began to put madie aside for a sec and look at my husband a totally different way. "hey this guy is kinda cute" " I remember why I married him"...And its all I can do. xo And yet, Special needs families have the highest divorce rate...they loose each other! Simply loose each other. Wrapped up in the child who takes so much energy and attention from their lives as a couple.. By no means am I resenting madie or blaming her for anything please dont take that message! :( Madie has her days...when she just wants nothing to do with anything and I am so tired and counting the minutes till Hubster gets home from work! Then he gets home and is so tired and hungry for a dinner and the last thing I want to do is cook! :( (I love to cook...) It pains me that I gave so much of my time to Madie..but Im her MOM! I gave up allot to be at home with her full time and I know he realizes that and loves me for it! At the same time I have had therapists tell me that I need to remember that WE (hubster and I) came FIRST. Madie is just a sweet addition to US. Now Husbands you NEED to make times for you and your wife..take her out..get that sitter lined up..Surprise her~! Get tickets to a local show! Bring her random flowers and tell her shes the best. Hold her and kiss her! She raised your special needs child!! And Wives you too...breathe. Sometimes when the kiddo is screaming I just simply put her in her bed. Give her time to cool off...she gets 10 minutes at a time.. I can say all this because I just know that is what should be done.! But Its so much easier said than done! :( Just a small touch or a "Im proud of you" for being my rock..for bringing home the bacon and working so hard. For being so patient with our special child and not walking out on her. I sat outside my church. I don't go to church but I was married in this one. Its a beautiful old stone church with lovely flowers landscaped around and a small fountain next to the rectory(where the priests chill. lol) and I sat in my car and I just cried. I prayed to god to just take our hands together and tell us that we will be okay that we CAN and WILL overcome our bump in the road. And if one decides to travel the rd less traveled than we will always have Madie. The sweet girl that can conquer anything...the bravest sweetest soul out there...who unconditionally loves us both. ((tissue break)) Want to also update on Madie...yes she is here too! Kindergarden Special program will begin come fall! She will be vanned only on the way home and I will drop her off in the morning only because I like to touch base with teachers occasionally.. YES Im putting her on the van! She will be one of like 5 not bad at all..:) It will just give me more time to myself and honestly I dont fret on being selfish in that category! :) AND AND we are in the midst of sending in paperwork for a respite care for madie..maybe a couple times a week or random nights so hopefully Miles and I can get out and have date nights(fingers crossed) or even if I just want to do things around house or run errands or have girl nights for me.. I know she will be taken care of. Someone who can make her keto bottles and give her meds etc etc...I prefer to call this person a "helper". It would be awesome to someday take a weekend away! A mini retreat! But we shall see...Im pretty excited about it regardless. But dont worry Grandma you are still our number 1 sitter! :) Madie will also finish preschool very soon in nxt couple weeks er so.I am truely devastated that her current teachers cant go with her!!.She will then have about a month off till her summer school begins for 6 weeks! The same wonderful group of girls will be in charge again so that is comforting :) Madie will continue her therapies over the summer as well which is awesome. No word from the Barium Swallow study folks after 3 messages...sigh..but we all know how that goes! The other night she really did eat almost 2 jars of chicken/gravy mix!! She was so hungry...her diet (keto junks) makes her so constipated and we have to give her Miralax every day which sometimes I think makes her tummy crampy..Miles may beg to differ.. It was so funny how she was reaching out for her spoon so I let her take it and she just wanted to shake it! was all over! Cutest ever though! She loves toys that fit in her little hands and she can shake em and they make little eggs or even her sippy full of water..she just loves that noise. Umm....lets see...I guess that may be the end of my rambles today. Its a rainy day in CT today. Typing up Madies story and Miles is reading his book and Madie is napping. Enjoying just simple boring normal things today. Maybe a little Indiana Jones Marathon Madness tonight! (we own the whole sha-bam)cmon Miles you know you wanna! ;) Lots of Love to the Special needs moms and dads. (all hands together for a Whhhhoooooaaaaahhh) Me.

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