All sorts of changes… and today on Easter, one of the most significant.
My Mom said to me many times when I was a teen, that I would do more changing in my 20s than I ever would in my teens. She was absolutely right.
I guess she didn’t want to overwhelm me, because she never mentioned the volume of changes to take place in your 30s.
You grow up sure. You have strong opinions. And slowly… they evolve.
I’d like to say the values I was taught as a youth are still at my core, but my expression of those values has changed over time.
And, while all that was taking place – I managed to meet the love of my life.
Sometime after we married we purchased a true “handyman special,” which we are still polishing up 13 years later.
Then there was this beautiful little girl – rocking our worlds from the very beginning. NICU, colic unceasing, OT,PT, Speech, hospitalizations, chronic viruses, tests, doctors, surgeries – and eventually Cowden’s Syndrome.
She grew into a beautiful young lady – despite the odds stacked against her. Her very existence changed my long standing beliefs on modern medicine, and strengthened my faith in God every step of the way.
My family unit is so strong. We are incredibly blessed to hold each other’s hands through the twists and turns and changes life has in store.
Today was a big one.
On this, Easter Sunday, the Celebration of the Resurrection of our Lord, my family stood in front of the Moravian church and professed our intention to become members of their community.
My history, my heritage, my core, was developed as a Lutheran. My heart is now Moravian.
And their motto, “In essentials unity, In non-essentials liberty, In all things LOVE,” speaks to my soul.
We make decisions every day – guided by the power of the Holy Spirit, with faith that we are moving in the direction intended for us.
The fact we now attend worship as a family of THREE, leads me to be sure we are on the right path.
My 30s have sure been a trip. I have only a few more months left and I wonder what else is in store. But heck, then there are the 40s to look forward to. One day my mom will get a few minutes to sit still, and I’ll grab a bottle of wine and ask her all about them.
It seems they are happening all the time, probably for everyone, but this week we are really feeling them.
When the week started and I loosely reviewed our schedule for the week Meghan was flat out disgusted at the number of appointments we had. She is tired of doctors. I can’t blame her. So am I.
Watch this. Scan that. Come back and see me about that… UGH.
Transitions.
So when she asked me to stop making every vacation full of appointments, I tried to explain to her that with two people with “Cowden’s Syndrome,” and a whole pile of “every 6 month” appointments, it is almost impossible. And then when I looked at the tears in her eyes I promised to try. “I just want a little time to be bored!” So I got a jump on our summer appointments. So far I scheduled 12 from June 27 to July 16. I have used only 6 days to do it. There is one day with 4 appointments, two days with 2, and the other 4 each have their own days. Now, as long as no one looks for any follow ups… maybe we can plan to have a somewhat normal summer. At least I can dream
Transitions.
She is also tired of homework. Even from teachers with the best of all intentions. She is tired of the stress of the upcoming State exams, even as I work to downplay it. She was so excited this week when I told her she could read whatever she wanted – whenever she wanted – without needing to write a summary. You would have thought I gave her candy. She used to love everything about school. Now the best I get from her is that she likes her teachers. What are we doing to these kids?
Transitions.
Her thumb still hurts. Injured at dance on Monday. Its been 3 days. Seems like it is going to linger. It isn’t – or doesn’t seem to be broken, but she is done dancing. She told me yesterday. She just wants to get through the recital.
Transitions. Things are ever changing.
First it was soccer – too tough on her body. Now its dance. Sometimes she can hurt herself just walking up the steps. What next?
Transitions.
No more PT in school. She doesn’t need it. Or so they say right now. We will double check just to be sure. But there is lots of PT going on. Strengthening that body. Preparing her to swim like the fish she wants to be. More testing in school when we return. Just to make sure she is getting everything she needs. Nothing more. Nothing less.
Transitions.
Holy Week services at a new church. Sunday we become members. Warmly welcomed – attending as a family. Mixed emotions that always lead to joy and confidence at the power of the Holy Spirit in our lives.
Transitions.
Our lives are full of transitions. Like the lenses on Meghan’s glasses – changing with the environment and the circumstances. We are growing together. Learning our roles. Fighting not to allow Cowden’s Syndrome to define us, but rather to find where it fits into who we are as people. We are working on our health, and our own maintenance appointments. We are learning about the effects of the syndrome, and discovering how much is not yet known.
We are finding our new roles, as people charged to raise awareness, and to spread the word.
We are figuring out where we belong. In school. In sports. In extracurricular activities. In religion. On our lives.
Big changes all around. God’s plan unfolding. Eyes and ears and heart wide open.
I am awake earlier than the rest of my family. My big dog took a container of Meghan’s gluten, dairy, soy free chocolate chip cookies off the counter last night while we were out. I think she will be fine. She just had her second dose of activated charcoal, and she seems to be resting comfortably. But. EVERYONE knows who the Mom is when they are sick – so she and I BOTH had a long night. (and I am sending her Daddy out to clean the yard! :-))
Allie – The Cookie Monster
Last night we headed to Manhattan where we celebrated Felix’s sister’s 50th birthday. It was a crowded room, and although the food was quite good, I had a tough time being so cramped in. My little girl, as usual amazed me with her calm, patience, and poise. I asked her before we left of she wanted me to ask the restaurant to cook for her. She said she wanted me to pack her dinner. She doesn’t trust very many places to “get it right,” and she did not want a belly ache.
So. she put on her fancy dress. The one she is so EXCITED to wear to the Father/Daughter dance hosted by her school Monday night. I put her hair up and stepped back. This child has always been mature beyond her years, but when did her body start to catch up?
My little girl?
We sat, for a few hours. There was minimal time to walk around, but when she did get to talk she vibrantly retold the story of how she lost her last baby tooth, and the Tooth Fairy left her $20 and a Tigger pin! Way to clean up on the last tooth, None of the others were worth that much!
Magic. She brings it back into our lives. She rounds out her father and I. She is a princess. Yes, she has just about everything she has ever asked us for, but she has a whole lot more. She has compassion, patience, maturity, and wisdom. She has kindness and generosity. She takes pleasure out of making people happy.
My mother always said, “Children should be spoiled, just not spoiled rotten.” Doing our best Mom. It seems to be working out ok.
Before I started writing this, I was searching the Disney website. I was playing around with prices for a summer trip. We have taken Meghan to Disney in August (usually for her birthday) every year since she turned 5. My house has photos in every room that remind us of our adventures. We have had the happiest of times at Disney. We enjoy each other. And, I have to say, the year my parents joined us, was one of the best vacations.
Family fun
We started going to Disney because of their accommodations for allergies. It is almost impossible to maintain a gluten, dairy, and soy free diet for a week without staff trained to take every allergy very seriously. And while we struggled a bit last year to find “quick service” food for her, on the whole we have had only positive things to say about our Disney dining experiences. When you have a child with allergies, you plan your trips a little differently. Everything else falls into place, AFTER you know they will be well fed.
Disney also accommodates her chronic joint pain. Even with the Celebrex she could not endure the miles of walking we do each day. She travels Disney – walking some, but spending the majority of her day in a portable wheelchair. We always get a room on the first floor to avoid extra steps, and in the event those knees give out, every park has everything from Advil to heating pads to help with the pain.
Not to mention the Magic. I believe in the wonders of Disney. I believe in the smiles of hugging Chip and Dale, and Mickey and Minnie, and all their friends. I believe in the smiles on my girl’s face. I believe in the memories we are making – that no one can ever take from us.
So, this morning when I ran the prices of the trip through the computer I choked a little. It, like everything else, has gone up a good deal since last year. And, for a brief second the thought of not going crossed my mind.
I mean, the deck needs major work, we still haven’t finished the upstairs. There are plans for the basement to be redone, and the backyard needs help. What about that awning for the blistering sun in our back yard. Plus, this year forced us into a new car, braces….
Then I saw the question in the corner of their website. It said, quite simply, “What are you celebrating?”
Well, that did it. We are celebrating all right. We are celebrating Meghan’s negative biopsy. We are celebrating the knowledge we have gained from our Cowden’s Syndrome diagnoses, and the ability to “strike first.” We are celebrating that after a long stretch of studying, they offered the Electrical licensing Exam, and Felix passed part one on his first try. We are celebrating the love of friends, the kindness of stangers, and the compassionate heart of my little girl. We are celebrating the power of God and the Holy Spirit to lead us to a place we worship together as a family each Sunday. We are celebrating “more birthdays” as Meghan will turn 10 and Felix 40 during that hot August vacation. And I could go on and on with the thoughts that flooded my head in reply to that simple question.
Disney 2012
So today I will finalize our trip. I will be sure to get “trip insurance” in case life tosses us any more curve balls between now and then. We may not finish all the projects around the house this year either. But we have lived here for 12 years now, and its a pretty nice place to be. The projects, the bills – they will get paid for and finished.
The magic may not last forever. We have learned as a family to stop and enjoy the ride. We are celebrating our countless blessings. God is good. Life is good. Family vacations are worth celebrating.
I woke up this morning earlier than normal, and that is not like me. Worry had taken its toll on me through the night. I was up and showered with plenty of time to get Meghan to Sunday School.
She woke up sore and stiff – some combination of a difficult swim class, and her body’s realization that it had been two days without Celebrex. That is her “wonder drug,” the one that keeps her moving pain free. She needs to be off of it until it is determined if she will need thyroid surgery. The pain will progress.
Still, determined, she struggled through getting dressed and found her smile before heading out the door. She looks forward to church – the lessons, the children, the teachers. She adores them all.
As I headed home to wait out her class I heard a song on the radio that I have heard many times before, but today Matthew West‘s “Strong Enough” spoke to my heart.
If you don’t know the song, its worth listening to, but some of the words that spoke to me; “I know I’m not strong enough to be everything that I am supposed to be. I give up. I’m not strong enough… Hands of mercy won’t you cover me, Lord right now I’m askign you to be Strong Enough for the both of us…”
Tears streaming down my face I headed home. I am always thankful and amazed when the song I “need” hits at exactly the right time.
As Felix and I headed back for the 11 AM service I reflected on the week in front of us. The biopsy looms large. The results even larger. Sandwiched in between is an appointment for my spleen. Busy week for the Ortegas and their ever troubled organs.
I had Emailed the pastors to let them know of Meghan’s biopsy. They have done such a wonderful job helping us feel at home, even as we are technically “guests,” that they have made it known to us they appreciate being kept “in the loop.”
This morning during Church I was introduced to a Moravian Custom. Appranetly early in the year everyone chooses a scripture verse from a large basket. They called it, jokingly,” Fortune Cookies, Moravian style.”
We were told that this passage would be our “watchword” for the year, and that we would would see God’s work in our lives through the scripture.
I said a quick prayer to God to send us something good.
As usual, He did not disappoint.
For Meghan – Hebrews 11:1 – “Now faith is the assurance of things hoped for, the conviction of things not seen.” For my Meghan, a verse to define the abstract “faith” that yielded lots of good discussion today.
For Felix, a verse from Job 37:5 “God thunders wondrously with His voice. He does great things we can not comprehend.” A reminder to the strength of our family, from Job who suffered so.
For me, Psalm 116:2 – “What shall I return to the Lord for all His bounty to me?” The reminder to continue to “Pay it Forward,” and to remember even on the tough days, I am so blessed.
The prayers of the church lifted up my little girl, and she sighed. So pleased to know the larger community sees her needs. She has such a long prayer list of her own, that to be remembered and prayed for clearly touched her soul.
I left church to a hug from the pastor, who is also a mom. As I looked into her eyes no words were needed, and meaning was clearly conveyed.
Despite our rough times… God is good to us.
I heard the Matthew West song again today. I didn’t cry this time. I just took a deep breath. “I don’t have to be Strong Enough….”
There are no coincidences. Only the hand of God through the power of the Holy Spirit, ready with exactly what we need, when we need it. Truly amazing.
beatingcowdens 