Friday, January 25, 2008

Day 54 - Change in destinations

Tristan had a great night sleep! He was not fussy, his apnea monitor did not go off at all and he was able to handle the increased formula amount from 24 ml to 25 ml without any problem. Tristan had a good day except that his reflux has become more obvious - he is now spitting up formula because he does not know how to swallow, so he cries when this happens which means we watch him the entire time he feeds now, we'll know more about his reflux after the upper GI test next week.

Today I was FINALLY taking a shower at 1:00 pm and I was thinking about how my life as Tanner, Tayden and Tristan's mommy has changed me. As I've written in previous post this is not what Trayc and I had planned when we got married 17 yrs ago. We wanted 4 children, 2 years apart, 2 boys, 2 girls - this was the plan! However, as you can see, this was not the Lord's plan for us, He blessed us with 3 boys. I thought to myself "Would I change the way my life is today?" Honestly, the answer is yes and no (I mean who wouldn't want to change some things in their life, right?). Yes, I wish I had the 4 children we so desperately want, Yes I wish we had at least one little girl I could dress up in all pink and go to ballet recitals with, Yes I wish Tanner and Tayden were closer in age, Yes I wish Tristan did not have T-18. But, at the same time my answer is no, I would not change the way my life is today, there is a reason why the Lord has given us each one our boys and I don't want to miss out on the blessings He has in store for us. Tanner, Tayden and Tristan are all truly miracle babies as we were told my 9 doctors and 1 infertility specialist that we would never have children - yet we do, we have 3! And then we've been given another miracle, we get to wake up every morning and look at our precious little boy, Tristan, the one doctors told us probably would not survive until December and the one they considered "incompatible with life" - yet we are on Day 54! Being Tristan's mommy has allowed me to do things I would never have had the chance to do had he not been diagnosed with Trisomy 18. Because of his diagnosis I took my personal journal and turned it into this blog which has given me the opportunity to meet people all over the world and ask them to pray for us, it has allowed me the unique opportunity to form "Internet" friendships with some of the sweetest Christian girls I've ever known and walk this road with them, it has drawn me closer to the Lord, it has caused me to have a more consistent quiet time as I daily seek the scriptures, it has caused me to spend my days praying not only for us but for every girl I've met on this journey, it has given me the opportunity to witness to everyone we come in contact with, it has caused 1000's of people in our church to pray for our little boy, it has given me a desire to begin a ministry for hurting moms of T-18 babies in the future, and most of all, it has allowed us to so vividly see how the Lord has placed His hands over our family. Being Tayden's mommy has, wow where do I begin, taken all of the seriousness out of the "quiet, peaceful, organized, perfect" life we once knew - he is silly, crazy, wild but at the same time so sweet, loving, a mommy's boy and he keeps us laughing even in the difficult times which is exactly what we need. Being Tanner's mommy allowed me to hear the words "mama" for the first time 11 yrs ago, it slowed me down from the fast-paced 8-5 working world I lived, for 16 years as a legal assistant, and it has taught me how to get down on the floor and do boy things like play with trucks, cars, play station and get out in the heat to watch him play soccer (I'm a girlie-girl so this is all a big deal). All 3 of my boys have changed me in different ways and in more ways than I even have the time to tell about and although it wasn't what we had planned it is exactly what the Lord's plan was for our family therefore I wouldn't change a thing. Even with all of the uncertainties of Tristan's little life - this is the MOST INCREDIBLE TIME OF MY LIFE.

Below is a poem I read on the Internet months ago and it came to mind today when I was thinking about my life as Tristan's mommy. After you read it you will understand why I proudly say I am enjoying Holland, I am so glad the destination changed because I wouldn't want to be in Italy, as we had originally planned!

Please pray for Tristan's strength, please pray for the 2 heart meds to work, please pray for the reflux to subside and please pray for us as we face another new day tomorrow.

"Welcome to Holland"

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

(Written by Emily Pearl Kingsley in 1987, to help others understand what it is like to raise and take care of a special-needs child)


Cathy said...

What a beautiful poem. Thank you for sharing and reminding me to enjoy all of this Holland destination. May God continue to bless Tristan and your beautiful family.
Cathy & Annabel

Anonymous said...

Thank you for sharing this poem. It was a very important reminder for anyone, mother of a special needs child or not, to be content where you're at and the differnt paths God takes you on rather than dwelling on the paths you had wanted to take. God's plans are not always what we expect. But lucky for us His plans are always perfect. I can't even begin to imagine what you are going through. I just want to thank you for sharing your heart and to let you know that God is definitely using you through this situation to minister to many people. I will continue to pray for you and your family.

cyn said...

I love that poem! I taught special ed for several years (before being a mom) and I stumbled upon this poem. I gave it to all my parents at the beg. of each year. The Lord placed a special needs child in our arms years later so it even has greater meaning. BTW! That "special needs" little guy has surprised us all and is coming out of his social/behaviour issues. I can look back at those really tough times and see how GOd grew me. Incredible!

Faith said...

Thank you so much for that poem. I have a special needs child. My Maggie Jane is a heart baby. A couple days after her birth we were surprised with the news of severe heart deformities. Thus beginning our detour from Italy to Holland. It has forever changed our lives, but God is in control and has a beautiful plan for us. Thank you for sharing your story online. I found it through another internet friends' blog (Buhtafly Wings). I can't imagine what you and your family are going through, but your testimony is amazing.

The Magana family said...

Thank you so much for your lives what a huge blessing you are for us and whoever get the oportunity to go across your blog. The Lord is using you as He has planned.
Tristan is in God's hands!!!
We will keep praying.
The Magana family
St. Augustine,Fl

Emma said...

Have you seen The Celebrating Holland - I'm Home poem? It's by Cathy Anthony. As a life long disabled person and wheelchair user, it's something I can really relate to and I thought you might like it also.

That website also has some other poetry and writings about knowing/parenting/being a special child. I find peace in most of them and I hope you might too.

Praying for Tristan and for all of you.

Julie said...

It's awesome to know that you want to use what God has given you in Tristan as a ministry to other women! I imagine it must take a lot of strength (and of course PRAYER) to prepare yourself for that. Even though I have never dealt with Trisomy 18 personally, reading your blog (along with several others) has helped me understand a little more about it. I believe that through this blog you are already ministering to other moms, and not just moms who are dealing with health issues with their children. Praying for you and your family!!

Marianne said...

God is so awesome. No matter where we find ourselves in life, he is there to guide us. Reminds me of the sweet gospel song, "God will make a way when there seems to be no way. Forever he is faithful."

I am praying that the heart medications work, that his reflux improves, and that God gives you peace of mind as you make the decisions you must make for Tristan's comfort.

God bless you today as you care for your boys.

Rachel said...

Praying for Tristan. The photos of him with the puppy are absolutely precious!