9.05.2008

Miracle Max

I felt compelled as Max's mother to bring voice to my son's life, even at this moment his life continues to grow inside of me...he is alive and will be until Jesus comes to take him home. So to make mark of his life, to help heal and understand, to help cope, and to maybe help others, I dedicate this site to my son Maxson Linwood Hagen. I pray this site will honor my son and show that he has life; I also pray above all that Max's life will bring glory to God and that I may have a chance to witness the purpose God has placed on Max's life.

I want to explain where we are at as much for you as I do for us.......

Dustin and I have tried for a few years now to become parents we were able to accomplish this by using fertility last April we found out we were expecting...Maxson Linwood was wanted, desired, planned, dreamed of, longed for, and already loved even before some consider him to have a life. The beginning of the pregnancy was great I was sometimes gitty with excitement about the life that was continuing to grow inside of me. The name Maxson was decided if it was a boy, as my instinct led me to believe. I truly believed I had gone through the valley, as the fertility was very difficult but now I am learning that is not how God works.

In July I started counting down the weeks then days until the ultra sound, that in my mind would just let us know the sex. On August 3 at 19 weeks we excitedly had our ultra sound. Dustin stood next to me and my biggest worry was if they would be able to see what sex the baby was. We found out...no, actually we saw Max; we were so incredibly joyful and excited to have a son. The woman who was reading our ultra sound excused herself and we were left in the room for a while feeling so full of joy...now in hindsight I wish I could have paused that moment or choose to not go further. Minutes later the radiologist came in he was concerned about Max's kidney and wanted to look over all of his measurements again. I was definitely shaken...I was brought down hard from the excitement of the prior minutes. He looked over everything taking an extremely long time and I felt he was seeing more than he was telling. I would ask him questions and get vague answers. We ended up leaving the ultra sound waiting to find answers the following day at my doctors office.

Oh that day seemed to go by like a week I remember praying that his kidney wouldn't be a big deal and that he would be just fine. I was worried but at that moment I didn't have a clue to what could be at stake. The next day we met with my doctor who is just an incredible, tender-hearted Christian lady, she laid all of the possible situations out...they all seemed grim but one she touched on seemed unbearable and the actual thought put me over the edge, I couldn't speak or hold back the tears. The best situation we were left with is that he may just have a kidney problem the worst situation was a chromosomal problem like trisomy 13 or 18. I had never heard of those before but she informed us that generally there is just comfort care for both, which just that thought shattered me.

The next step we were to take is to see a paleontologist in Minneapolis and a genetic counselor. We had to wait a little less than a week. During that time I grew very optimistic the hope that God gave me was just what I needed I don't know if I could have waited all that time without hope. We had the level 2 ultra sound and found that Max did have a tetralogy of fallot and two cysts on his brain along with the original finding of his kidney, they also found that he had one clubbed foot and clenched fists. The doctor told me this looked like it could be trisomy 18 but then reassured me that the odds of that were less than 10 percent. I tried to not be fearful, to trust in my faith that God would be here and would protect my son. After this appointment they had us meet with a genetic counselor who was not as positive, she really didn't want to give us any hope. She didn't agree with the doctor's odds and my spirit battled to not think about the possibility they were presenting. I had an intense emotional battle going on but the hope was winning... I kept praying and God kept answering by giving me hope. We had an amnio and left to await preliminary results that we would receive the following day. I continued to feel growing hope and comfort. It was a sad time but the chance of the veil of sadness being lifted and Max being okay out weighed the sadness.

I believe God is our supplier, I believe he is our helper, and I believe God is our everything. About a half hour before we received the phone call God took away my hope and gave me intuition (Job 19:36)...I new that it wouldn't be what we had hoped for, I had a difficult time breathing I actually think before the call I was having a bit of a panic attack, at least as close to having one than I have ever been. Dustin took the call I was waiting in the car with my mom who had as mother's instinct goes instinctively felt God tell her to come with us to Minneapolis. When he got in the car and said the words positive with trisomy 18. My world, my heart, my everything crumbled. Dustin and my mom held me, it poured rain outside and through all this I heard God's voice more clearly than I had ever had in the past. Through the crumbling walls around me and emotional pain so deep I couldn't begin to describe it in words I felt God clearly say, "I am here". I heard him clearly but the thoughts I was dealing with and the emotions so raw that I just let sobs come and scattered thoughts carry my mind. We drove home then leaving Minneapolis at 3 pm and arriving home at 2 am. The drive was such a blur, I hadn't even begun to process what reality we were in.

Over the next few days the emails we received from friends and family were so comforting, I became obsessed with learning about trisomy 18 and reading stories of those who had been down this road or who were on it. I will try to post an email I sent out to those who were praying and who's email addresses we had. I wrote the email six days after we found out, it actually helped me a great deal to write it, I felt the holy spirit teaching me through my own writing. The morning that I wrote it I awoke feeling peace above all understanding (Philippians 4:7) and the presense of Jesus there comforting me...I know it was an answer to all those who had been lifting us up in prayer. I earnestly thank all who have, and who will continue to pray for us, you are our WARRIORS in a time of great prayer need!

Maxson is now a t18 baby and that may change how we look at the future. We are actually learning the true meaning of living today for today but it does not in any way, shape, or form take an ounce of love that we have for him away. It actually makes me relish in the small ways to love him all the more...taking prenatal vitamins has a whole new meaning I feel a great deal of love behind it each time I swallow them. His kicks... hearing his heartbeat, everything has taken on so much more meaning. I just hold my stomach in such a different way...I hold it now loving him now, before I would hold my stomach dreaming of the future and not taking joy in the very moment of holding my stomach...which now is holding my son Max. So at this moment I am 24 weeks pregnant with the cutest baby ever growing inside me, I may be a little biased but he is. I have days where I feel so peaceful, thankful, and joyful and then I have days where the sadness and pain is there no matter how I fight it. Hi's and low's I feel is my new path of feelings for a long time right now I am just learning and praying...it's all I can do.

We are walking this road God has given to us...trying to understand what God wants us to learn, I will share with you in the journey as much as possible because I do believe God knew Max, he knew his name before he was even knitted in my womb (Psalms 139:13-16). As his mother I want him to bring glory to God and I know God is going to teach us great wisdom and understanding by going down this road with him. Please always feel free to email us at crew4him@gmail.com, we have enjoyed and been comforted by all the emails we have received thus far. For anyone who doesn't know what trisomy 18 is please check out the following website it will give you an understanding of just what road we are walking.

www.trisomy18.org

thanks for all the continued prayers
love,
Trish

6 comments:

Anonymous said...

I love you trish!! Your an inspiration! Love Chris

Fafinski's said...

Trish and Dustin,
We love you so much and are praying for you and Miracle Max. Thank you for keeping us posted.
Love, Mike and Rachel

Amber said...

My amazing Trisha, you never cease to amaze me with your strength. You remind me that all you need is faith and love (and thai chicken pizza). I can't wait to see you again, until then I pray for Dustin, you and Max. You know I love you :) - amber

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."
Isaiah 41:10

Anonymous said...

I love you Dustin, Trish and Max!
God has done wonderful powerful things with Max's life. He has taught many of us to enjoy each and every day to the fullest. No matter what, God has given us a miracle in Max!

boltefamily said...

Hi Trish!

I am not even sure how I got here but I just want to let you know that my family is praying for yours. We know what it is like to carry a baby who is expected to die shortly after birth. We have been there...twice.

You are so right, this is the road God has chosen and you are walking it with such grace! Grace given by our Father. You are so loved. This road will be rocky and if you ever need anyone to talk to I want you to know I am here. Just email me...boltefamily@windstream.net.

Much Love and Many Prayers,
Kristy

Ernie said...

I don't know how any father could be more proud of his daughter than I am of you. Love Uoy - Dad