Saturday, January 28, 2012

Letter to younger self:

To my younger self....there are going to be times when you get mad at, family, friends, work...whatever...listen to what is actually being said. Listen to both sides...yours and theirs. Apologize when needed and forgive too.

Parents only want the best and care deeply for you. They will worry, get angry and push you...but that is because they love, care, and want the best for you. Remember, there is no instruction book when it comes to being a parent. Keep an open relationship with them because it really adds trust to the mix.
Your sisters are and will always be your best friends. Yes, many will move away, and you will be brokenhearted...but nothing can break sisters apart...even distance! Oh...and a little thing like Face book helps tons!

You will have just a few boyfriends in your life...they will come and they will go...but eventually, you will find someone who will be your perfect match. You will have everything in common...even though you weren't looking...he was right there in front of you...nothing at all of what you were used to going after...but let me tell you...he will/is perfect for you and you will have an amazing life together...good and bad times....but together you will trudge through them...and eventually the hard work and the struggles WILL pay off! Oh...and eventually...your old will become friends with them again...which is really a nice thing.

You will lose quite a few people in your life to death...not only grandparents...but your brother...and unfortunately...your own son. You will be sad, hurt, angry, physically sick at times and your faith will be tested. Just remember that death is a part of matter what age. Your brother will always be watching over you...every time you see a street light go out....that is him telling you it is all right. Your parents went through heartache but were strong...they had to be...for you and for the family. You will have to be just as strong. See, there is a reason why he passed you can learn from your parents example that life goes on. It will bad at times...even years and years later...but you will be alright. It is alright to mourn...if its even all your life...but don't forget to live.

You will have many kids...yes, that's right...even though you didn't want fell in love with your soul mate and after loved being pregnant and loved having each and every one of your 8 children. Don't listen to what others say. You will hear many negatives about having so many kids...even from family....but ultimately, it is up to you and your husband (and God) as to how many kids you want or decide to have. Don't be afraid. It will get crowed, loud and you will lose your sense of you (and sanity every so often) but will get that back.
You will give up everything for your kids and will think twice about this in the long run when times are tough...but promise me you wont give up...I'm still waiting to see if your dreams of a headpiece/bridal shop will ever work out...I'll get back to you on that one :/

You will be blessed with twins...but as I stated above, you will lose one early on after birth. You will have a very hard pregnancy and deliver at just 23 weeks twin boys at 1 lb. 7 oz. They will be very fragile and very sick. You are going to gravitate to the one that looks weeker (he was much more underdeveloped)...but surprisingly, 2 days later...the stronger of the two will take a turn for the worse. Your worst fears will happen and you will hold your baby as he passes away. You will be able to feel his soul leave his body and go to heaven...You will be able to talk to him before hand and tell him how much you love and wanted him. Your brother WILL be waiting for him in Heaven...even though you question that at times in your life. You will have to bury him but you will visit him all the will make you feel much better. You will also include him when people ask you how many children you will your husband...because....thats how you both roll. :)

There will be many people that will surprise you following your sons death...someone will buy the plots...yes, 2 plots because no one is sure if your surviving son will survive. There will be very generous people helping you in every aspect of your life following his death. There will also be family and friends who don't quite know what to say to they stay away and you will lose many friends and contacts...please don't let that bother you too much, its human nature. It will hurt, will hurt that many people wont think of Nick as a baby...but more as a miscarried fetus..but you will have pictures, clothing and foot/hand prints to show them otherwise! You will find the courage to make a very touching and beautiful tribute to your twins...and may people will see it.

You will have a long, hard road with your surviving twin son who will spend 129 days in the NICU. Many of those days are filled with the possibility of him not making it...but please keep the faith...he has his twin angel watching over him...he will survive and he will come home.
The years following the whole NICU mess will be even crazier, so please...younger me, stay strong...this is where the hard part will take place.
There will be operations, medical equipment, procedures, doctor appts, therapies, tons of hospital stays, medications and even some pretty scary seizures. He will be developmentally really behind, have immune issues, will have severe hearing loss which will require him to wear heating aids. He will have feeding issues and you will have to retrain how you think in terms of trying to feed a child...dont be afraid of a small thing called a g-tube. The thought of it is scary and kinda gross, but you'll totally get used to it! He will also be diagnosed on the autism the time he gets this diagnosis, you'll already know. Please don't get so frustrated with his grunts and non-verbal babble...ok, and yelling...he's just a kid who's trying to communicate or let off some energy. He will need your 100% attention and at times, you will want to give will want to give up many times, but keep in mind at the fight and struggle he had to endure and will endure the rest of his life. You will feel sad that your son is not perfect. You will always worry about him passing away from one if his illnesses or from his chronic diseased lungs which didnt fully develop because he was so early...or from the cyst in his brain....the list goes on. You will then worry about your healthy kids and feel guilty about not giving then 100% of your time as assure, they will be fine. They will all be amazing adults with a great outlook on life. But because of all of what you've been through, you will have some post traumatic. I wont lie. It will get bad...really bad. The unknown is always the scariest...but please don't give up. Your kids...all of them are watching you...taking notes...planning out their own futures. Try not to get so angry or down at life...someone else always has it a little worse. Even after several miscarriages throughout your life...stay positive.
You will become a special needs mom and your husband will have a lot on his plate as well...with working to support the family and yet helping you with the kids. He is a good man...don't forget that.

Don't hold grudges towards people that tried to hurt you and your family...they "thought" that they were helping...when all they would of had to do was ask and talk to you both, rather than come to their own conclusions. Everyone has their own demons they are don't take it personally...they are only will eventually prove them wrong anyhow....and then things will quiet down and move on. Younger self...its not worth holding anger towards others.

Younger self...there will be much that you will be doing because of what has happened in your life. It may not be what you expected or wanted...but helping others in the Hospice program, making a non-profit t-shirt program for micro preemies and kids with chronic illnesses, baking cupcakes, working with the March Of Dimes...and there will be more that the future holds for you. So please don't think that this all day, everyday stress of a special needs child is not making something out of you...other than tired and sad. Eventually things will fall into its own way and time....just keep an open mind and a lot of love to give to others.

And finally, younger self...don't be scared....because I know you will I am now.

Friday, January 27, 2012

IPad apps for kids...

To all my friends and readers:  I've had such a hard time finding good quality apps for Kenny (and the rest of the kids) to use and play with...that is...until Kenny's wonderful teacher told me about Free Friday App Day. Every Friday there are some site that share free apps...but only on Fridays! I couldn't get over all the wonderful and actually really good apps for the kids for the iPad or the iPod touch! I want to share this with you all so here are a few of the links...which have even more links inside them! Enjoy and Happy Friday!

Monday, January 23, 2012

Life stresses

Yesterday started off bad and just kept getting me backtrack a little...this whole past week & weekend were pretty bad. Personal stuff and the stupid stomach virus that got 4 of the kids. Then you get the kids fighting between themselves, not helping around the house, me not feeling great...and Kenny needing 110% attention. It doesn't make or a very happy me.
As you know, we were trying to get EM:HE to come to our house...and we were thisclose to it happening, and we already know what the outcome was. We also now know that the show was cancelled, so that big pipe dream (that almost happened) is no longer...which is no big deal, it just means that we will do it on our own. It made us that much stronger, in that aspect. Fast forward to a few days ago when I saw an ad for county funded money to help fix problems within the house of small kids or a house where there is a child with disabilities. Ding! A lightbulb went off and I contacted them. We are having them come out today to see what needs repair in the house. I am praying they can help us. It would help us out so much!
The other stressor in the life if Michele is the fact that we are going to be going to Kennys school this morning for a meeting with his teachers for kindergarten readiness. It finally is hitting me hard that my son had disabilities and delays and that he is almost 5 and not at all ready for kindergarten. It makes me sad in one aspect, but proud of how far he's come. I mean every mother wants their child to be just fine...go to kindergarten, make friends, and just be normal. The reality is sinking in as he is getting older, that he is not a normal kid, and it breaks my heart. Everyone can say comments like,"he's so's just gonna take some time" or "at least he survived" (which is true) but sometimes I just cry at the fact that instead of talking or telling me what he wants, needs, or feel, he makes "ah" sounds and babbled or yells, making no words just sounds. He doesn't know how to talk let alone his address, he doesn't know how to hold a pencil, doesnt know how to use utensils, he is still in diapers (but on a good note with that...he kinda let's me know when he peed or pooped by holding his bum with his mouth opened really it's a start). It just has really hit me like a ton of bricks that my son, whom I prayed over, taken care of, play with to help him learn and spend 110% of my time with, is not ready for that next big step...kindergarten. I have turned this around on me and I feel that I failed as a mother for not doing enough for my son. I know that that is stupid thinking, but being a mom IS my job. I gave up a career that I loved to raise my kids...and now...between the kids fighting constantly and Kenny...I have a slight feeling of failure.
Well off to to the meeting. I'll post how it turned out when I get back.