Sunday, March 21, 2010

Showers, Funerals and Deep Thoughts

It's been an emotional week, to say the least. 1) I went back to my hometown for a baby shower and wedding shower of two of my best high school friends. There were five of us girls who were really close through school and have remained in touch. We were together again after a long time. 2) Grandpa P (Mr. Prince's maternal grandfather) passed away the Sunday I was out of town. Services were Wednesday and Thursday and we spent lots of time with his siblings and extended family this week. 3) And after being in large crowds of people who love to google over babies, it was an emotional roller-coaster when telling people how old Myra was, them mentioning how small she was, and in some instances noticing the "differences" in her and other children they know her age.

Me, Becky's sister Heather, Becky (mom-to-be), Amanda, Cory (hostess), Lindsey (bride-to-be)

The wedding and baby shower were great! Much more sophisticated than others I've been to. =) At the baby shower there were Mimosas and fancy keish and the entire wedding shower was a wine tasting event. We even went to a winery for the Bachelorette party! I tried 9 wines that Saturday and actually found ONE I liked. I bought a bottle for Mr. Prince and my anniversary in June. I can count on one hand how many alcoholic drinks I've tried, and only ONE have I ever liked! And, it's not even made anymore...go figure! It was great to see my girls again....and ALL together! That doesn't happen very often. I used to visit home 4-5 times a year when I had 1-2 kids, but after #3 came along, the visits have dwindled down to a long summer visit and Christmas. Though, after Myra's hospital stay we didn't even go home this past Christmas and this was the first time all of my friends had even seen Myra! I've been known to be a baby-hog, so I'm not sure if they all even got to hold her, but it was great to visit and just be with them all day long. As a mom of five, I can't even remember that last time I got to have a Girl DAY! Sid the Science Kid and Miracle Myra were the only kids I brought on the trip, so it was a nice break...sort of. Would have been better if I had someone to nurse Myra in the middle of the night..... A mom can dream, right?

We had the baby shower from 10am-12pm and then the wedding shower was from 2-4pm at Cory's house.....

Becky looked adorable in her brown dress! (I totally want one for a future pregnancy...ha) This is the best picture I could find with her belly in it. Her mom and sister and her are unmistakingly related. It's a good thing!

Here is me and Lindsay at the winery.... Isn't she fab?
We all used to say we would stay friends, despite the known phenomenon that you move past your high school friends and lose touch. Well, we've beat the statistics thus far. 10 years! I think that's pretty impressive. Love you, girls!

I was able to visit in IL a few days longer since Mr. Prince took bereavement leave most of the week. I had a good trip home, a nice visit with a friend on the way, and was home in time for the visitation on Wednesday for Grandpa P. It was great to see family we don't see every day and remember Grandpa together. I found it amusing the priest prayed, asking God to allow Grandpa into eternity. All I can think of is how's he's already been there for a number of days, days which have no time restraints there. No need to ask, Kyler made sure Grandpa knew Jesus before he passed. *smile* I didn't attend the mass and burial on Thursday, but all Grandpa's grandsons wore one of his bow-ties as pallbearers. They looked great. I look forward to visiting the grave-site this spring and seeing Grandpa and Grandma laid to rest there together. I will think of them often and remember their legacy. One in which I could never live up to, but one to copy my life after. You will be missed Grandpa P...

I am still a little uncomfortable around "normal" babies Myra's age these days. Yeah, I've been there four times, but seeing the view from the other side of the fence is an eye-opener. Now, when I see the little boy at the Library on permanent crutches due to Spina bifida, I smile at him...and the mother. And I think about how awesome it is that this little boy has the ability to walk. And I tell him he is as fast as SuperMan on those crutches! And he smiles big. And when I see a little girl with thick glasses reading at the table, I think about how adorable children are with glasses and how awesome that she can read the small print in that book with the technology of today. And I even think about the moms with "normal" babies and children that I pass. That they have no idea - like I did for 6.5 years - that there is this whole other world of moms with children who have some type of special need. And I thank God for their child's perfectly round head that is growing and developing. And I pray they someday completely understand the blessing that they have. And I pray for each and every swollen womb I see. That they do not have the same experience that Myra had. That they are healthy. We all say we want a "healthy" baby, but then discuss that we really want a boy/girl, green or blue eyes, a tall football player or a graceful ballerina, a doctor or a nurse.... I pray for health above all else now. And I go home and kiss my own four perfectly round heads and even the slightly warped balding one. Just a whole new perspective.

I think as Myra gets older and her delays become more apparent and her small head more noticeable, I'm going to have to come up with some brief explanation for strangers. I know they'll ask. I know they'll pry. I don't mind so much if I can maybe educate them. Maybe ease their uncomfortableness with people with disabilities. And people with big families. I have no idea what that little synopsis will be yet, but I'll have to work on that soon. Of course, I have no idea what Myra will be in the future either, but I have extremely high hopes! =) Regardless of what is going on today, God moves in our lives daily and has shown His ability and desire to heal Myra in more ways than one. I expect miracles. I think I always will.

I have been doing some research this week on visually impaired infants. Did you know that 90% of a what a child learns in their first 3 years is through vision? Wow. So, now I'm looking into how to teach a child with visual impairments. I do believe that Myra's vision will improve (so do the doctors), but I have to still have to teach and interact with her where she is at right now. So, researching has begun. I read visually impaired or blind children will be behind developmentally, independent from their intellectual abilities, simply because they need to be older to understand this dark world around them before they start exploring it themselves. They will often not reach for objects until 12 months, and things like crawling and walking cannot be achieved until they reach this point. They are delayed in holding their heads up because they don't have the visual clues to tell them to do so. So, now we have no idea if Myra is behind due to her vision or due to neurological issues. Annoying. But, I thankfully have been doing some things right - like showing her different textures and listening to different sounds/music - but I feel like I have a lot to learn. I hope it doesn't come to all that I've read - braille books, walking sticks - it's all a little overwhelming if you read too much and think too much. And, I DO read too much and think too much sometimes...

Myra's journey keeps bringing me to new forks in the road. I feel like I'm getting further and further away from my old life as I explore this new land and learn this new language. And, I feel like I won't be anywhere for too long. That there will always be new forks in the road. New languages to learn. New people to meet. I've never been a traveler. Sure, I'd love to see Spain or Paris. But, I don't care to spend the money, book the hotels or find childcare. I'm happy with our little house in Indiana. But, apparently God wants me to learn how to travel in a new way. Chase him through the tall grass and rocky creeks. I'm trying, but my shoes are new and stiff and I keep having to take them off and take a break. I've even tried to find my way back home by myself a few times. Back to the familiar. Back to the days when my other six month olds were sitting up, filling bibs with drool, chewing on toys, laughing as I play peek-a-boo. I got majorly lost and had to listen for Him to find my way back. Sometimes I walk, sometimes I run and sometimes I drag. Sometimes I enjoy the new flowers on the path and sometimes I curse the unfamiliar winding in the road. But, I know He'll always be there. To lead the way. To carry me when my burden is too heavy. Too lay down his robe so the path is smooth. I depend on that. I probably would just make a tent and stay somewhere if I didn't know He was leading me and preparing the way for me. It's a new journey, but isn't every journey a new one? And if we look back at the journey and find ourselves closer to Christ, doesn't that make it a Great journey? So, I'm on probably one of the Greatest Journeys of my life. I guess that makes it all worth it.

Ginny Owens' song says it perfectly....

The pathway is broken
And The signs are unclear
And I don't know the reason why You brought me here
But just because You love me the way that You do
I'm gonna walk through the valley
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my home
But You never said it would be easy
You only said I'd never go alone

Cause I'm not who I was
When I took my first step
And I'm clinging to the promise You're not through with me yet
so if all of these trials bring me closer to you
Then I will walk through the fire
If You want me to


Taz's Mama said...

welcome to the world of special needs parenting! i struggle with what to say to people too. someone asked me the other day if Taz is 2 1/2. he's almost 4! then i get the response "oh." and they just walk away awkwardly. it doesn't bother me though. at times where it's very apparent or if i have to explain to someone about him, i tell them he has special needs. so far, no one's asked what. which is good because i wouldn't know what to say. there is so much controversy around childhood mental illness and bipolar disorder, i never know if the conversation will turn to a debate or what people secretly think of me. it's a hard road for sure. everything changes. there is a great poem (and now a book) called Welcome to Holland. below is a link to the story. it's a great tool in the special needs world. check it out and i hope it might help you a little.

AnnH said...

Beautiful Ashley. I love that song. I love the way your relationship with our Heavenly Father is growing. The older we get the more we experience, and I agree with you completely. If we keep our eyes on Christ, and His plan through the celebrations and trials remembering He is there, we will find ourselves closer to Him. Motherhood is certainly full of seemingly "helpless times." I have been immensely reliant our ever-present help during the journey so far. I have faith it is preparing me to be even more so for the future.

The Real Life of a Red Head said...

Ashley, I admire your outlook on your situation. While I cannot say that I know what it's like to have a child with special needs, I do know what it's like to go through extreme trial. This pregancy has brought me to some of the same places on that path that you have been. Like you said, the beauty of it is when our relationship with Christ is deepened.

I also believe whole heartedly that God places people on that path to encourage us to continue on. He provides those people when we want to run back home. Your post today has encouraged me to continue taking one day at a time and giving my full faith to God.

Thanks for the blessing today!


Anonymous said...

As a writer (and even more so as a reader), I know that characters who achieve great and powerful things later in life will never have an ordinary childhood. I also love it when characters are put into dramatic situations to heighten the tension, because the payoff is that much more awesome when the situation is resolved. This would all be academic, were it not for the FACT that so many many MANY dramatic things have already happened to Myra, to show God's working in her life. If God had wanted to keep her, she never would have made it through that first week. If He had wanted her permanently disabled, He would never have healed her as He did (smaller healing takes less energy--not that God is short on energy, but why waste?). Count on it, God has something mighty for Myra to do later in life.
As for the fifteen-word précis to describe her condition, I have no idea, off the top of my head, other than to say she was born almost dead, and we still haven't seen the full "after" picture yet. God has healed her in ways that defy imagination, indeed, that defy description. I cannot speak to the problems of other mothers of special-needs children, but I have seen what God has done in Myra's life. I had prayed daily for Myra during her time of struggle, but had given it up of late, as she seemed to be doing better. But because you have asked, I will resume my daily supplication to God on her behalf.
By the way, the word "mighty" is appropriate. God does not spend such huge outlays of healing just for the hell of it. There is something specific He has called her to do. And those He calls, He equips. Whatever her eventual range of abilities, whatever her eventual IQ or developmental level, whatever her eventual skull size, stay aware of the mighty work of God which is your daughter. God is mighty to the pulling down of strongholds, even the stronghold of disability. We have seen the mighty healing. You have seen it. He will bring his plans to fruition, and all the powers of Hell will not stop Him.
Myra is touched by God. And God will work a mighty work in this world through her. I will continue to pray, as I know you will. We will wait, and anticipate. And we will see God;s glory.


Anonymous said...

Blessings from afar, Dear Lily...

When I was small and so many of my siblings were manifesting a genetic disorder that would transform our "normal" family life forever, I would imagine a world where every child was whole and vibrant and free from suffering, limitations and death. The Inner Child in all of us will always see life as a fairy tale and that's why the Master told us "Unless you can see through the eyes of a child--unless you can see what Miracle Myra can see--you will not be able to enjoy and embrace His Kingdom."

I have looked at the amazing photos you generously post of this little girl--she makes me laugh every time! Drama Queen? Indeed! Angel Embodied in Earthly Form? Unquestionably! And is her joy in seeing into that Secret Kingdom we all long to possess? But of course! Myra has a Secret and we should aspire to have it, too!

Your readers owe you a great debt of gratitude, Lily, for taking the high road on this unplanned and challenging journey and for sharing your wisdom and feelings so openly. You remind me of "Much Afraid," the little crippled deer in "Hinds Feet in High Places." Her journey was arduous and not without sorrows. In fact "Sorrow" and "Suffering" traveled with her every day for a long while. But when at last she was made whole by the Good Shepherd, it was because she persevered through the high and difficult road; and it was there that she could at last see the Kingdom as a little child in perfect wholeness.

You are blessed among all women, Lily, and we are blessed to know a woman like you.

Your Aunt Pinky Marie