Things I've Been Reminded of Lately....

In the past few weeks I've been reminded of many things, both good and bad.   

I've been reminded that people are truly generous and giving in a time where money is tight for many people.  Our annual bowling fundraising event for our non-profit organization, Beau's Beautiful Blessings was proof of that.  The financial help our organization will be able to provide local Iowa families is a huge and makes me feel so good inside.  It reminds me that taking Beau's diagnosis and medical problems - which are beyond my control - and turning them into something positive like Beau's Beautiful Blessings was the best thing I could have ever done. 

I've been reminded that it's such a truly amazing thing to look down at my pregnant stomach (32 weeks) and watch it move and pop out as my baby girl moves and dances around.  I remember how amazed I was when it happened with Beau.  I wish that others could see it when it happens or that people wouldn't be weirded out by it.  I always try to get friends or co-workers or even my husband to feel my stomach as it's happening, because to me, there is nothing more showing of the miracle of God. 

I'm also reminded that not everyone is capable of being happy for someone experiencing such joy - the joy of pregnancy.  It's sad when those that choose to ignore your pregnancy and your joy are within your own family circle.  I then remind myself that they are the ones that are losing out.  Trust me I've been through miscarriage, partial molar pregnancy, a child with a lifelong diagnosis of a brain abnormality and epilepsy - I know pain, but I have NEVER, EVER made anyone else around me feel horrible for being pregnant or having a "typical' child.  I have always celebrated the blessing of pregnancy and healthy babies in others, with all friends and family.  It's just strange to me that you can be at a family event and everyone in the house ignores the fact that you are pregnant or never once asks how the baby or you are doing.  I'm not really surprised - it was that way with Beau, but a part of you wants to think that people can change. 


I've been reminded that we are extremely lucky to have the pre-school teacher we have for Beau.  Ms. Tyna is kind and caring and the most perfect special needs preschool teacher we could ask for.  Our prayers were answered this last week when the Waterloo School System granted us permission to keep Beau at the AEA 267 school, Castle Hill for one more year rather than transferring him to their school system.  Avoiding an unnecessary transition for Beau and avoiding the frustration for him of having to have another teacher learn his way of communicating, is the best thing for him.  It would have caused some serious regression and I am so thankful that the Waterloo Schools listened to our concerns and granted us such a blessing.  Another reminder, that as a parent of a special needs child, your fight never stops with getting them everything they need when it comes to their education.

Beau and Ms. Tyna

I've been reminded that you can never get too comfortable when it comes to epilepsy and seizures.  They can reappear when you least expect it.  Beau has had 2 seizures in the last 2 weeks.  They were both at sleep - his normal - small and both stopped on their own.  I remind myself that a) he hasn't had a bad seizure since October 29, 2011 b) the medications have done amazing things in slowing down all the electrical activity and allowing him to grow intellectually so much in the last several months, and c) there are others that have it so much worse when it comes to epilepsy and we should feel lucky.

I've been reminded that people can say mean and hurtful things to you.  I have come to realize that sometimes that is just the way people are wired and that in the end they are the ones that have to live with themselves for treating people so disrespectfully.  I am reminded of Mother Teresa's "Anyway" poem.

Mother Teresa's Anyway Poem

People are often unreasonable, illogical and self centered;
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.
If you are successful, you will win some false friends and some true enemies;
Succeed anyway.
If you are honest and frank, people may cheat you;
Be honest and frank anyway.
What you spend years building, someone could destroy overnight;
Build anyway.
If you find serenity and happiness, they may be jealous;
Be happy anyway.
The good you do today, people will often forget tomorrow;
Do good anyway.
Give the world the best you have, and it may never be enough;
Give the world the best you've got anyway.
You see, in the final analysis, it is between you and your God;
It was never between you and them anyway.

I've been reminded of several things all together in this one; That God has his hand in everything, the Internet is a powerful place and that having my ACC family is such a big part of my life.  God is the only way I can explain the close friendships I've developed with other ACC families.  A few years back my father-in-law was doing research online trying to learn more about this strange diagnosis his grandson had been given.  Along the way he found a website that led him to a blog by a mother (with a son a year younger than Beau) who has complete ACC.  Through email we began our connection and though we've only been able to meet once, I feel like we could pick up exactly where we left off the next time we are lucky enough to get to see each other.  We email, read each others blogs and have the occasional phone call and I am so lucky to know her.  We have the ACC bond and I know that when I need to cry, need to celebrate, need to talk to someone that "understands", I can call her up and she will listen and she will understand.  She truly is a gift from God to me.


A few weeks back, I received an email on our Facebook Page for Beau's Beautiful Blessings.  The email came from a mom with a young son who was diagnosed with P-ACC and epilepsy (5 months old) who had found my blog on the Internet - Beau of course, having the same diagnoses.  There's that whole "Internet is a powerful place" again and "God had a hand in it".  Her questions, her fears, her emotions, they all brought me back and reminded me of the early days of Beau's diagnosis.  Wondering what he may or may not ever be capable of doing, the mourning of the life you had anticipated for your child, and the ups and downs of epilepsy.  I have to admit that I cried reading her email because I felt like I was taking a trip back to 2009 when we were diagnosed.  You see, I truly believe that like my other good ACC friend, our lives were supposed to intertwine.  I am reminded of this poem below - I have only included the first few sentences because I know that both of these amazing women will be a friend for a lifetime, even though initially we came into each others lives for a reason:

People come into your life for a reason, a season, or a lifetime. When you figure out which it is, you know exactly what to do.

When someone is in your life for a REASON, it is usually to meet a need you have expressed outwardly or inwardly. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally, or spiritually. They may seem like a godsend, and they are. They are there for the reason you need them to be. 

I am reminded that when people reach out to you, it's so important to take their hand.  They may feel that you are only helping them, but the truth is, they are doing just as much for you.  I pray daily for my new friend and her beautiful son.  I honestly KNOW the pain and the fear they are going through in the early phases of diagnosis and I also know the joys and the beauty of the journey of raising a special needs child, most specifically an ACC child with epilepsy.  It may sound like I'm tooting my own horn, but God couldn't have chosen a better mom for Beau or for that matter, a better family.  He is so lucky to be with us and have the love that he has.  He changed my life and has taken me down a path I never would have anticipated going.  It is certainly the path that fewer people take, but man.....if they only knew how beautiful and rewarding the scenery can be........

So there are the things "I've been reminded of lately".  By now you're tired of hearing the word "remind" but hey, I did warn you in the title! 

"It is God who arms me with strength and makes my way perfect." ~ Psalm 18:32