Why?

Since we started this road in August I have been going to God with why. Why us? Why my baby? Why, why, why? This hasn't been answered. This is where the faith has been learned, to have faith in something I cannot understand. And a deal that has mereeling with emotions that have driven me to question God's love for me. To say I haven't wondered if he really loves me would be a big fat lie. I do everyday. I fight the feeling of being abandoned and at times hated by God.

The faith I have, have now, is shaken but not broken. There is not an ounce of me that doesn't believe and love Jesus and have such a faith in God for saving us through Christ. But there are times when "why" just breaks me, actually at least everyday, at some point. It's probably part of the grieving process.

Now before you shut your laptop feeling I am just the most depressing thing ever...Everyday I feel I have had some ordeal happen that tears me apart about the loss we have to learn to live with. Sad, yes and seems unfair. ALSO, everyday something happens that can only be explained as God cares, he's here, this plan is his.

Writing through this right now is my way to find my way through these at times, blinding emotions, after writing some happenings they always seem to become clear. So for what I am going to write now...(deep breath) I will change the name (privacy).
But please know this is my dearest friend and she has been there for me and been a great support. I love her with all my heart. And through all the pain I feel in everything right now I am truly happy for her.

Well, yesterday I found out she is pregnant. Which when I heard hit me out of left field. Not that I didn't know it was possible but the last thing I expected was the emotions it stirred the following day, today. Right off the bat I felt my heart bleed.

Cameron (not a real name) I do feel genuinely happy for you, I know your gonna be a wonderful mom, one others will wish they had!! I just had to cross this bridge at some point. I'm not going to go into the sad emotions it drove up as I'm sure that's semi-understood. Another note, I am going to want to hear about all the moments you have through this pregnancy and I have some great books for you too. I hope this pain I have to go through doesn't bring down any of the joy you feel. Please know I just have to feel this. I haven't called as I hope this kills the awkwardness that would have been our conversation.

Now for the part where God answered the doubts all that came down on me. I opened this book my cousin gave me "Grieving the Child I never knew" and randomly read two parts, it was all I needed to feel comfort today.

"As you do not know the path of the wind, or how the body is formed in the mother's womb, so you cannot understand the work of God, the Maker of all THINGS" Ecclesiastes 11:5

"Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from the will of your Father. And even the very hairs of your head are all numbered. So don't be afraid; you are worth more than many sparrows." Matthew 10:29-31

with love,

Maxson's mom

Prayers

Please pray for Nicole, Chad, and now there sweet angel Dylan James. He was
born this morning and went to be with Jesus this afternoon. I know how
amazing yet difficult this day is. Their link is on the Angel list.

My heart breaks for them, its so hard to know they have to be on this road now. Please pray God gives them abundant strength and peace. That Chad has the strength to grieve but yet be strong when Nicole needs to lean on him. And that the rest of today will just be more joyous memories with their sweet baby.

with love,
trish

Merry Christmas

I wanted to write today. I knew I wanted to write today weeks ago. Being that today is Christ's birthday and the original day for Maxson's birthday, I just knew it was fitting to write something.

I would be lying if I said I feel joyous and full of the Christmas spirit. This is the first post where I have no desire to cheer myself up through writing. I want to share my tears with you. If you have followed Max's blog you know I wanted him home today. More than anything I wanted him here, if just for today. The only outfit I bought after finding out about Maxson's future in August was a tiny Christmas outfit. And it kills me today that he didn't get to wear it. I hate that I have to feel this sad on a day that was meant and has always been meant for happiness.

An African Missionary told me a while ago that going through this allows me to empathize with what God went through by sacrificing his son for us. Because God went through this incredible pain, I am able to see and hold my son again. As usually this fact makes me feel better, today the cloud of what could have been just won't pass.

I pray that if I have future Christmas (not guarenteed tomorrow) celebrations I am able to feel the spirit of it all again. I pray that God will bless me with dreams of my sweet Son as I covet this so much right now. I pray that I am able to be a happy wife and daughter again. I pray for all the other moms in the same pain as myself today, my heart just drops thinking of them. I pray for strength for my husband and family. I need them to be strong! I pray that I can through this, actually that Max's life can show all of you how truly blessed we are to have a Saviour and to have the sacrifice God made, the free eternal gift.

Last night on the way to Christmas Eve Service I thought about how shortly after we found out about Maxson we met with the pastor of our church. It was before I started this blog. I told the pastor about this deep desire more like passion burning to share my son's life. I wanted his life to have meaning, for people to know he was here and know his name. I had some hope that Max's story and beautiful life would affect people. Now, I thank God as I do see and get to hear of some of the ways Max's life meant something to others and even made changes in some. So many love him and that means so much, I feel so blessed to feel the love people have for Maxson.

I will close with a thought, if I, being a sinful human wanted my son's life to mean something, for people to know him, and for his life to have a positive impact on others...how much more does God want Jesus's life to mean something to us. I don't just mearly want people to agree Max existed, I want people to love him and to know as much as possible about him. By this I now understand a little better God's deep desire for us to KNOW his son!!


Merry Christmas,

Trish
Max's Mommy

Thank you Maxson

Today was my plan. To have Maxson today and then to bring him home to spend Christmas with us. I had decided... in my mind sometime after Christmas would be the time Max went to be with Jesus. It was my plan my hope.

Obviously, not so. Not my plan.

I really didn't count fully on everything I had on the plan, but I did put so much of my hope in it. My "hope". My hope has always been on whats going to happen here, in my life. Where we will be in five, ten years. I never truly set my hope on a heavenly home. I never really understood or knew how to not set my hope on this world.

Now I have all my hope on a Savior, on an eternal home after this stop, on more than what this world can give or this stop will bring me. Presently, I don't have a plan...scary, I will admit that seems wrong. But I don't think it is wrong, not that I wont be planning, but my hope will not be set in my plans in my dreams here.

Maxson taught us more about the three most important things (faith, hope, and love) than I could've imagined. When we first found out Max had trisomy 18, dreams crashed and our faith was smashed down and twisted (tested).

Our faith grew beyond what I can express. We learned to lean on God and have faith in his plan not ours. To trust his plan and trust the promises he DID make to all of us. The love we felt and had the privilege to experience was amazing. I have so much love for Max my heart seems to burst with love. Also the love I have for others has grown. Strangers melt my heart and my heart breaks so much easier for those around me. Love has more meaning than I felt before, my faith has a strength I didn't know existed. And now my hope is set on what WILL BE!!!

That's all thanks to this amazing lil boy, who shaped his mom and dad and others for where he would go first!!! I can't tell you enough how much I miss him. Sometimes so much I don't feel I can go on.

I hate that I have to miss him. But I love that I had the experience to know him.

I love you Maxson,
Mom

Tribute video for the life of our son

Please click on Max's Video below to watch. We played it at his celebration service. Max's song from Songs of Love is the second song.

Max's Video

Max's Celebration Service

Maxson Linwood Hagen, what a dignified, strong, and purposed name. I may be biased cause I named him, but his name to me means a lot. I always wanted a Max I dreamed of my son Max for years, Linwood is my fathers middle name coming from his grandfather's name. To see his name on all the cards and other mementos from his celebration just meant so much. I loved opening cards with his name spread across the envelope, I am going to miss seeing other people's writing of his name.

His service was beautiful. When I woke up yesterday I was feeling so hurt and sad. I thought the funeral was going to be so difficult, it was going to finalize his passing and that hurt. I planned and wanted it to be a celebration but yesterday morning it didn't feel that it would be for me.

It wasn't though, it was so perfect.

Waking up to an extreme blizzard had me asking God, why? Why God? Are you kidding, I wanted people to be able to come and for them to see God's beauty through Max's beauty. And the storm seemed like a big damper for anyone to turn out. Plus, with 30 below weather the burial was going to be cut short and that saddened me. Anyway, I was once again touched by God's divine plan, not mine. People made it, maybe not as many that would have, but I know there was some that were there because of the weather. Sports were canceled and peoples travel plans were canceled, so there were some people there that would not have attended had the blizzard not been here.

The burial was short but the people that came to stand with us in 30 below weather touched me. I didn't expect anyone besides my immediate family to come because of the bitter cold. But so many came, I felt bad for them as I thought I was going to freeze to death. But it was so touching they did.

I will post a video of his service later this week or link to you tube with it.

I felt so much peace and now I understand the closure that a funeral brings, that a person needs. Not that I have closed this chapter, that may never happen, but I felt a letting go, an ability to say goodbye Max, for awhile. Granted late last night all the pain started coming up again. But all day yesterday I felt so peaceful and I even felt happiness for the first time since Max's birth. Thank you all, because of you, I have been lifted up again and again. God's peace keeps finding me and Jesus is carrying me through...I feel it!! I felt Jesus at Max's celebration and I believe Max was there watching.

Tomorrow, I will also post some pics of Max's celebration service. I do want to leave you with a letter that my husband read at Max's celebration service from the both of us.

Dear Maxson,

You were with us here for about 37 weeks and 1 day, in that short time you made more impact on this world than many make in a lifetime. Not only did your sweet time here on earth touch people around the world, it also changed your mom and I forever. We had a long talk the other night and realized how we will never be the same again. Not just because we will always long for you in our arms and desire heaven more now than ever; but because you taught us more about faith, hope, and love than either of us could have ever known without you.

I can’t believe how strong you are Max, I felt you kick in your mom’s tummy so many times, and then when you entered this world… you fought so hard. You have the heart of a champion son, and your mom’s strong will.

Because of exactly who you are, it humbles me to know I’m your Dad. What an honor Max, we are so proud.

Although we have felt the loss of a lifetime we would not trade the time we had with you for anything. I am confident that we will hold you again, it’s just the time that we have left here, that separates us from you. We look forward to that day Max.

We love you,
Mom and Dad

A thousand words...

If a picture says a thousand words then this picture speaks volumes... Besides showing the beauty that Maxson possesses, it clearly displays the fight in his eyes and to me there is just so much behind his sweet eyes. I can't find the words... all I know is that he has such a special glimmer in those eyes, I will keep that with me forever. This picture was taken shortly after he was born, they actually just got him breathing before this was taken. I know newborns can't see very far but he was looking directly at me. Max was about 6 to 7 feet from me and his gaze was set directly on me.





Oh, I love and miss my baby so much. I don't know how this deep longing for him will ever let up.


God bless,

Max's mommy

Angel

This coming Saturday we will be celebrating Maxson's life at New Hope Church. The service will be at 11am with a lunch to follow. It has been such a heavy thought to go through with this day, one, it signifies another milestone of his passing, two I want it to be perfect, and three while I want to celebrate there is that part of me that deeply mourns the loss of my sweet son...with all that laid out, tonight I received the pictures back from the photographers (Gabriel and Carin Photography) they are just beautiful, more than I imagined them to be. I will add some every post and will share most of them on Saturday at Max's service. Receiving these pictures eased most all of the burden Saturday was feeling to be. Now I feel I am ready to share and celebrate his life with everyone! For cards please send to PO Box 230 Williston, ND 58802. In lieu of flowers please consider donating in Max's name to a organization on our side bar.

I never thought this would hurt so badly. I really thought by knowing his time would be short would ease the pain in it...No, not even a bit. The pain comes on in waves at times my chest aches so deeply, and I long for him so bad I feel ill. I feel peace at times and other times I feel such despair, I know I have to walk through this part and I know there's no designated finish line. I just pray that God continues to carry me. Without the feeling of peace that Max is in a better place plus that fact that we will be reunited, I just don't know how I would continue. As living right now even with that hope can be so painful. So please pray for Dust and me, all your prayers thus far have been felt.

I did not bring Maxson home, I may not ever know why that wasn't God's plan. I do know Maxson was struggling at the end and I told him it was okay to go be with Jesus. It would have been so much harder to bring him home and watch him struggle to breath like he was. Once I whispered that into Max's ear he seemed to let go, I saw it in his eyes. He stared into my eyes and went home in my arms. So, figuratively speaking I did bring him home, Jesus just met me and carried Max the rest of the way. Now my sweet Angel is in heaven with a wonderful Grandma and great-grandparents, plus a wonderful Aunt. I know they are all fighting over him!

Dustin has been my rock, my family has stuck by my side and lifted me up again and again, friend have been there in such special ways, and even people I don't know that well have been so kind, some bringing food. This food thing is just awesome cause it's difficult to cook in this state and I would hate that burden to be on my Mom as she is also grieving. I am going to just post a list sometime of all the wonderful things people have done for me and my family. God bless you and thank you.

I will leave you with some pics of the cutest baby boy ever!!!!

Forever in our hearts, we love you Angel!

Oops!

I wanted to clear up a mistake I had made. String of Pearls foundation had an incorrect link on my side bar. I have corrected it and the correct address is stringofpearlsonline.org.

This foundation has been such a blessing and I feel just awful that I had the wrong address and link listed. Please check out the correct link as Laura the founder has such a special purpose to help those who have and will walk this journey.

We're Home

This morning we left the hospital and went straight to the funeral home to see Max....it was pretty tough. We could not stay long because Trish was not feeling well, but are going to go back in tomorrow. I am looking forward to sleeping in our own bed tonight instead of a hospital recliner.

We are planning on having a "Celebration of Life" service on Saturday, 12/13 at 11am. This will be held at New Hope Church in Williston, ND. Details of everything still need to be worked out.

Please pray that this day will honor our son and bring glory to God, also that Trish is feeling better by Saturday, as she is hurting pretty bad physically and emotionally.

For Friends and Family that want to come from afar we will find you a place to rest your head, our home is open along with other friends and family members that live here.

In lieu of flowers we would rather you make a donation in Max's name to a nonprofit organization listed on the side bar such as, String of Pearls, Songs of Love, NILMDTS.org.

God Bless,
Dustin

ps - i will post more pictures tomorrow.

SO MISSED

This is so hard. There is no way words can explain or express how painful this can be. Trish is SO strong, yet SO broken hearted. We miss our boy so much.

This (Saturday) morning was a very tough morning for Trish. She woke up without any kicks in her tummy and empty arms. It was devastating for her and there was nothing I could do about it. I feel so helpless that I cannot take away her pain. I pray to God for guidance, but I cannot bring our son back.

I cannot imagine walking this road without knowing Jesus Christ as our savior. We cling to the comfort of knowing that our Max is with Him having the time of his life.....eternal Bliss. Also, knowing that we will one day be reunited with Maxson in heaven.

THANK YOU ALL for your prayers and support. I never imagined how many would come through and support us through this blog.....truly amazing.

It is late and I am very tired so i'm going to stop here. I am going to leave you with a few more pictures of our BEAUTIFUL SON. There will be more to come.

Love,

Dustin

Strong Max

Max passed away about 10 min ago around 10:15am cuddling with his mommy and daddy. They were surrounded by friends and family! There was more love than you can even imagine. What a beautiful baby boy! He took one last look at his mama and then he just let go peacefully. Thank you everyone for your prayers and support. we know Max is with our loving heavenly father!

Update

Sorry, I have more photos but we are having difficulty getting them loaded. I will post more later that have the whole Hagen family! Things are a bit touch and go right now. Max is definitely a fighter, with a strong will like his parents. Please keep praying for God's strength to touch the Hagen family today.

More family photos

Hagen family photo

Birth

Just saw Trisha, Dustin and baby Max. He is beautiful! Trisha is doing great! Max was 3lbs 14oz. Just a little squirt! He looks healthy and is cooing away!

Birthday!

Maxson Lynwood Hagen was born 7:32am on Dec, 5 2008. He is doing great and is fiesty little guy!Mom is holding him right no! Praise the Lord for he is good!

In Surgery

Trisha and Dustin just went into the the OR at 7:25am!

Time is going by 37 weeks today!

Well the response is overwhelming, thank you all so much for lifting us up in prayer. I feel so humbled by the love that has been shown for us, without love like this I don't know how this day would be.

Today thus far has been a dream...every kick by sweet Max intensifies the emotions I feel. There has been times I actually feel like my mind is recording the emotions, the feelings, and the details that surround the time I have. Very surreal.

I had to go get my blood drawn today for surgery tomorrow, afterwards, I just drove around and cried slow peaceful, praise filled tears. I turned the music up very loud, felt Max's body pushing against my stomach and just praised the time and gift I have received. It was a beautiful time with just Me, Max, and God. It may seem funny to praise God in a moment that would seem better fit to be pleading on my knees with God, but the release of fear and doubts, and the comfort I felt in doing so can not be explained.

Tonight we will be spending time as a family. My sisters are coming home and some friends are driving in tonight. I am going to try to sleep, I have to be up by 4:30 am. I will be having the c-section at 7 am central time.

I am just so thankful for all of you and thank God every night for you.

I wanted to write a list of prayers we seek to be answered tomorrow but I know God knows what we need, so I will leave you with a list of the blessings we have received thus far.

1. When we found out I was pregnant we were able to move from MN to be by my family, actually we had the opportunity to live with my parents!! My parents house is where we reside currently. The blessing in this I can't even express.

2. I was married at an age that some consider young. But as immature as I was, one thing at 21 that I did understand was that God had given me this man to be my husband! Also, the blessings in this go on and on.

3. I have become friends with so many people that share my love for our Savior...this bond has been even more so present through this journey.

4. I am blessed to be born in a country where I can freely express and live out my faith.

5. A family that raised me with so much love, patience (i require that), and commitment.

6. To be more exact, a Mother who is so selfless, a Dad who is extremely committed to the relationships in his life, which is the best example of a life a Father can give, if you ask me.

7. Three sisters that are all different in the way they love, but all give the same just in different ways. And a sister in heaven who I know waits to be a great auntie to Max.

8. Food I really have enjoyed food. And the blessing to choose what I eat is something I try not to take for granted.

9. Heat. I am in ND and it is so cold. Thank God for heat.

10. Doctors, well I can't say that I am to impressed with how our insurance has handled us but I will say it is a blessing to receive care. Also, that our Doctor knows there is a bigger hand in the picture!!

11. All who have shared this journey via the blog or through other means. Like I stated earlier I just don't know how this journey would be without you.

12. For heaven and the chance to go there!!

13. A God who felt this pain I am feeling by watching his own son die. Through this I am blessed to be separated from Max only by my time on earth.

14. Great girlfriends who have been there through thick and thin. Literally!!

15. Other mom's who have been down this journey that have reached out to me or answered my questions.

16. Dreams. not the bad ones but I have had so many good ones, holding my baby.

17. For a Shepperd who has guided me back to him when I lost my way.

18. Grace for the time needed in molding me, and hope for everything I have faith in.

19. For the blessings to come.........

20. Not lastly of course but for the sake of this list it is, Maxson Linwood Hagen, the love I have had the privilege to feel is beyond what I have ever felt. To be able to keep him so safe right below my heart, to be able to feel his kicks, to be able to have spent 37 weeks today with him and for the time God will give us. I would have never imagined this would be my path but I would not change it because of the pain, for if I hadn't gone down this path I also would not feel and be the mom I am now. Of course, I would love and welcome a complete healing miracle tomorrow and know that it is possible, but one thing I have learned through this more than anything else, is we are not that equipped to or able to understand or know God's plans. And even though it seems so doom and gloom from my eyes at times there is another side that is more beautiful and has more purpose than any plan I could have conjured up.

Yes, please pray, and yes please lift us up, more so though: Yes, thank God for what he has done and what he plans to do with the life of our beautiful baby boy.

Love,

Trish

Max,
I can't wait to hold you in my arms tomorrow, I can't wait to see you face to face. You are surrounded by love from all over. I have loved the privilege of carrying you beneath my heart and am so honored to say that you are my son!!!

Love you so much,
Mom

Our Max

I want to start my first post by thanking everyone for your prayers and support. There have been so many down times where we have been picked up by Jesus through your prayers. Please continue to pray for us as we continue this uncertain journey.

I have not posted until now....i guess for a few different reasons. I think mostly because I was scared because I am not a very good writer in combination with the common male trait of not being able to express or share my feelings, or maybe not wanting to......I'm working on that. Thankfully my wife is amazing at it, but if you have been reading this blog, then you already know this. I thank God every day for blessing me with Trisha as my wife.
I am so blessed to have such an strong, amazing, beautiful wife....she truly is my hero!

As you already know, we will finally get to meet our son face to face on Friday....I cant wait to see, hold, hug, kiss him. I am so very proud of Maxson, and December 5, 2008 (Max's first b-day), isn't even here yet. He is SO strong and been blowing the medical tests out of the water! I Love You Son.

I still dream and pray that I will one day get to teach Max how to kick a soccer ball, swing a bat, throw a football, fish, hunt and the list goes on and on, but I know that what I want isn't always the will of our Lord. However, I do find tremendous peace knowing that whatever happens, it is God's will, and God's will is ALWAYS right.


with love,

Dustin

Max's Birthday will be December 5, 2008

We have decided, we will be holding our sweet baby this Friday. Max did great today, his heart rate was strong and he looked to be doing very well. But we talked with our doctor for a while today and it seems that Max is not getting enough nutrients inside of me anymore. With a t18 baby I also have a Trisomy 18 placenta, and it has stopped providing Max with the appropriate nutrients. He did gain some weight, but after discussing the possibilities of waiting to have him we decided it was best for him to be born now rather than to become weaker over the next few weeks thus come into this world with less of an ability to fight.

I go in at 6am and Max will be in my arms sometime between 7 and 7:15 am. I have needed and loved all the prayers we have received thus far...now, I beg to you, please have Max in your prayers...Please pray he will be comforted and have no pain, pray his heart will sustain, pray that God gives us time with our son, pray that God gives us abundant time with our son, please petition to God our desire to spend time at home with our son. I have been asking God all along for his will, but I desperately beg that in his will is time, time to bring him home...I know he will supply us with the peace and strength we need, I know he will be in the midst carrying us, as I have felt him all along. Knowing God will be there I know, I just don't know his plan. I am so thankful for my faith and a God so great that even in my sadness, I am even more aware of his awesomeness! So well the next few days will feel oh so bitter sweet, I am so excited to hold and kiss Maxson, and like you may be feeling now, I can't believe it will be so soon.

My sister or Dustin will be keeping the blog updated on our status and will be posting pictures as soon as they can. I thank God for all of you and feel so blessed to have all your prayers.

with love,

Trish

Thanksgiving

Well the holiday weekend is almost over...it started off for me to be quite an emotional ride. Thanks so much for the comments and emails. I find it so comforting to hear from people. The beginning of Thanksgiving day was super difficult I had a difficult time giving thanks. I am a planner and I don't like when things don't go the way I planned, something I know I need to work on, obviously God knows that too! But I was so set on the 19th of December that the possible change in plans sent me spinning and it was, jeez...just a hole mess of emotions. Luckily and blessed that I am, my family came through and pulled me out of the doom and gloom. Then as the day progressed I began to let go of the despair and I rested in my blessings. Because I am blessed and thankful. I wouldn't trade Max's life for anything, even if his life may only grace me for a short time. I also wouldn't trade my family or husband or even my dog for any one else's. I thank God, as I clearly see his provision in my life. I do have so much to be thankful for...even though the road I am on now challenges me at times to count my blessings.

By the way I went in yesterday so we could monitor Max's heart rate, just so I could make sure he was fine, his heart rate was back up to a healthy range 120-150. I am still thanking God for that!

Dustin and I decided that our decision on delivering Max next Friday will be based on our appointment on Monday. If Max has not grown at all, or if his heart rate is not healthy we will discuss with our doctor about Friday. But if he has grown and his heart rate is well we will wait another week. I just pray for God's will in the situation. I will post on Monday and thank you for your continued prayers.

God bless,

Trish

Please Pray!

This morning I received a call from my doctors office, after reviewing Max's growth my Doctor thinks it may be best to take Maxson by c-section on the 5th of December. She is looking at the big picture and thinks that it will give us a better chance to have time with him. She is looking at this medically where I appreciate but understand that there is also my view. Which is, Max is only going to be 37 weeks if we take him the 5th and if he is doing good like he is, he's just not growing too good, than who is to say he will be ready to breath on his own and many other worries that seem bigger to me the earlier we take him.

On the other side if we wait he may pass in utero and that would be very difficult to live with...ahhhhh. I need a clear answer, I know like everything else I may not get one but I need one... now more than ever. I don't know what choice to make. At this moment we have time. We are going in on Monday and I may go in sooner to have him monitored and checked again. I am hoping that this will give me an idea of what to do. Please pray and please if you have been through this give me some of your wisdom. I am just so upset that I have to make another choice that is life altering to our lil boy. Pray for strength and peace cause right now I feel like I am hanging by the end of the rope.

thanks,

Trish

Today's appointment

Alright, Max has not quite gained a pound, but just under he now weighs approximately 3 lbs and 9 oz. That could be off a half pound either way, he is still growing and I guess that's what counts. He passed his biophysical but his heart rate wasn't as high as usual but my doctor thought it was passing due to all the other great signs, it was low lining at 110 and topping at 140, where in the past they told me a healthy heart rate was 120 - 160. So please pray for his heart to keep doing its job and to not go any lower!!

I feel like I am now constantly holding my breath...when I wake up I hold my breath till I feel him kick, today I held my breath until I saw my doctor, because I noticed that his heart rate wasn't quite as strong as it had been on the last tests...its just such an up and down road. Like on the contrary I have many hopeful moments; today Max was sucking his fingers or at least had them in his mouth. And his pinkie and pointer finger were up. I did tell my doctor and I don't know if it is an accomplishment or not, but heck I'm taking it as one, GOOD JOB MAX! He also was practicing with his lungs better than any test in the past. So I take in the good and the bad and still don't have any guarantee, right? Yeah, I guess that is how life works I'm just not used to dealing with that reality in my face in other areas of my life...NOTHING IS GUARANTEED (I yelled that even if it was just in my head)! If you want, email me and let me know what is, cause right now I can't think of anything, except...no, actually nothing.

So please, Max desperately needs your prayers, he has to pass 3 more tests in the following weeks and then he will have to pass my kissing him a million times test!

with love,

Trish

Biophysical and Max's Birth Plan

Tomorrow Max will have yet another biophysical. Last week he passed again with a 10 out of 10. I will request tomorrow that they also measure him. His last measurements were taken in MN and he weighed then just under 3 pounds... So flash forward about 4 weeks and hopefully he has gained no less than 1 pound. I will post after we find out, so please pray!

I am trying to help his weight gain by enjoying fattening treats!! Yes, that is the only reason...well, okay I have a great sweet tooth as well!!

Today Dustin and I wrote out Max's birth plan this will be given to all the hospital staff taking part in his entrance into this world. I am going to post it below, as it may be useful to someone going through this in the future. And we had to really research and seek out exactly what we wanted to have in our plan for him. It was difficult to write but now that it is done I feel so much more prepared for that day. Please continue to pray for us and please pray that Max continues to grow and that his heart will heal. As the time draws near (about 3 weeks away) the need for your prayers increase. Thank you to all. Dustin and I can't express enough how much it means to have all you out there praying on our behalf. The fact that you are sharing this journey with us means you share in our love for Max, thank you.

We love you and give thanks for you.

Trish and Dustin


Maxson Linwood Hagen Birth Plan

At 20 weeks our son was diagnosed with Trisomy 18. As of now we know that he has a VSD, an overriding aorta, a kidney that is not functioning, two cyroid cysts on his brain, a cleft foot, clenched fists, and low set ears. This is our first pregnancy and our son was conceived using fertility, he was prayed and longed for long before this time. Considering the diagnosis we have made the decision to carry our son Maxson Linwood Hagen to term with the understanding that he may not have a long life. We firmly believe that Max is a gift from God and we will treasure every minute we have with him. He is deemed “Our Miracle Max”, we are praying for a healing miracle, but do understand we have already received our miracle in his life alone.

Below is a list of choices we have made in regard to Max’s delivery and life, we hope that the list will help in the experience we desire with our son.

Delivery
We are planning on inducing labor on December 19, 2008. Dr. Tong will be delivering Max. We wish to try a natural birth, but will revert to a c-section if Max shows any sign of distress, this will be under Dr. Tong’s discretion.

Trish does not wish to have an epidural because it may slow down the delivery process. However, she is open to other forms of pain management, including drugs that will not affect her experience. Hydrocodine is a drug she has taken in the past that has not given any side affects.

Dustin wish’s to cut the umbilical cord. He will also be by Max’s side at all times. Dustin will also be making any decisions that may come up regarding Max’s life.

We wish to keep our room open to family and friends up until otherwise requested by Trish or Dustin. We would appreciate a nurse or staff member to give updates to family and friends that are waiting.

We would like for Max to be monitored throughout the labor and delivery and to be immediately informed if Max is experiencing distress. If there becomes a point in time where it appears that Max could possibly die during labor, we want to have a C-Section to get him out and prevent that from happening. We would want to take the time to properly medicate Trish, via spinal block, so she does not have any pain during the procedure, but at the same time, we want to ensure that she is alert throughout the procedure and that Dustin is by her side at all possible times. We want Trish to have the best physical outcome possible, but our primary goal is to ensure that Max has every chance to meet us and that he is protected from unnecessary pain and suffering. We have come so far in our journey to meet him and then let him go, that we will want to do whatever we can to prevent missing out on that chance.



Following the birth, c-section or vaginal:
· If Max is not breathing immediately after birth, we ask that stimulation be used to initiate it. If oxygen is needed, we agree to its use and other forms of non-invasive methods. We do not want extraordinary measures taken to maintain his breathing.
· If Max’s heart is not beating at birth we wish to have him wiped, wrapped and handed to his mother and father.
· If Max passes during our hospital stay, please notify staff members as applicable, and please allow us space to grieve without abandoning us.
· Dr. Kemp will be assisting Max’s care and is working with us to set up hospice.
· Our goal is to have Max home with us on Christmas but until we can leave we wish that Max be kept in our room at all times.
· Trish wish’s to try to breastfeed Max if he shows interest.
· If Max cannot orally feed we request other measures be discussed with us at that time.
· Dustin would like a second bed put in Trish’s room if possible so he can stay with her and Max at all times.
· We would like to perform kangaroo care with our son along with other methods of comfort care.
· If Max needs any type of drugs that will relieve pain we are open to discussion.
· Please do not make visiting hours an issue, as time will be of the essence for us and we do not want to have any avoidable regrets or missed opportunities.
· If Max passes during our stay, we wish to keep Max with us until the funeral home comes to get him, also, please help us gather mementos. Here is a list of those things, if there are others that you think we may want, we would be grateful for your suggestions.
1. Bassinet card
2. Hats
3. Baby blanket
4. Photographs
5. Hand and foot prints
6. Hand and foot molds
7. Lock of hair
8. Hospital bracelets
9. We want to bathe and dress Max at an appropriate time
· There will be no autopsy done on Max.
· We have chosen Fulkerson Funeral Home to take care of funeral arrangements.
· There will also be a professional photographer that will be standing by to take photos when needed.

We may have only seconds or minutes with Max alive, but we may also be blessed with hours or days. Whatever we are given, we intend to make the most of it, and we ask for your help and support in accomplishing that. We ask that everyone refer to him as Max or Maxson. It is our wish that for his birth and during his short life; Max be surrounded by a loving and caring environment.

This is a very difficult time for all of us, including you, as you work to support us and care for us throughout this part of our journey. We truly appreciate your help and support, and ask that you understand if we seem indecisive or experience a variety of emotions at times. We also appreciate and find great comfort in your expressions of grief and joy, be it through tears or even through humor, so please do not hesitate to cry or be sad in front of us, if that is how you feel.
We have tried our best to prepare for this short time with our beloved Max, and we want to be able to spend as much time with him as possible. Thank you so much for helping us and supporting us through this celebration of our son’s short but precious and meaningful life.

THIS PLAN IS NOT WRITTEN IN STONE. WE CAN CHANGE OUR MINDS AT ANY TIME CONCERNING ANY ASPECT OF THIS PLAN, TO INCLUDE FULL LIFE SAVING MEASURES.

Loving on Max

Tomorrow we will have only a month to go until we bring Maxson into this world. With so many unknowns of what that day will hold I am trying my best to enjoy every moment with him now. His kicks, and the different ways I can love on him now...I play his bunny quite a bit and hold my stomach thinking he can feel that he is held. I talk to him and eat yummy treats that I hope he can taste! Obviously I feel limited on the ways I can mother him now. I do have that nesting feeling but preparing like everything is normal is just too difficult so I am crocheting a blanket (I taught myself to crochet a couple months ago). I am trying to remember I can be sad later and that now I just want to really take in his presence in my life.

Dustin has been a really terrific Dad. Every night he waits to feel Max kick; he is so proud of his son I can tell by the way he talks about him.

I read this article on MSNBC health network today that talked about families who find out that their child is terminally ill in utero. I found it alarming that only 10 to 15 percent of families decide to continue the pregnancy after learning of such a diagnosis. The article then stated some reasons why a parent wouldn't want to continue the pregnancy. They stated that some believe that parents that continue a pregnancy are only delaying grief and thus just adding more torture. Others felt that by continuing the pregnancy it was bringing more suffering to the baby. The article also stated these reasons for continuing: religious reasons and wanting to meet baby.

Well, I do want to meet Max, I want to love on him as long as God gives me. I found it crazy that the percent of parents who end the pregnancy was as high as it was, honestly when I first found out about Max I didn't understand how I was going to make it through, it seemed impossible to go another 20 weeks with the understanding my son would die. I have always believed only God has the right to give and end life but this road definitely tested my beliefs. Now I thank God everyday for the day he has given me with my son. I pray that he doesn't allow Max to suffer. And now I also feel blessed beyond measure that God has given us this baby, even with all the pain this has brought there is also so much love and joy that I have never felt before. I am not torturing my self by continuing Max's life and I am not just adding more suffering to his life. I am just trying to be the person God intended me to be, a mother who loves and comforts her son.

We are choosing to only give Max comfort care, meaning the only medical measures we will take is to keep him as pain free and comfortable as possible. Thus far the medical field has guided us on the prognosis of such a diagnosis, they have led us to make some of the decisions we have made. We know that extreme medical measures in a baby with t18 will only add suffering and that the babies. So we won't do anything that adds suffering to his life and that would be in vain, however, if Max shows signs that he is strong enough we may change are minds.

So far we know this.... We know that we want Max to be as comforted as possible. We also know we want to make as many memories here on earth with our son as God allows.

The plan

Maxson, God willing will be arriving on December 19th. That is the plan, we will be inducing and will try a natural vaginal birth, he will be monitored so if he shows any signs of distress I will have a c-section.

I thank you to all who sent prayers up for us, for God to give us peace about our choices. Today as Max was being monitored for his biophysical which he passed again 10 out of 10 thank God for that, I for the first time had a good sense of peace about our choices, which we basically finally decided today. I feel such a peace right now that God is going to give us time with Max and that he has his hand on Max's life.

Here is the flip side to that great plan...Max at the moment is breech. He moves so much that one week he is breech the next he's in position but he has now been breech for two weeks. If he is breech at the time we will go ahead with a c-section. I am not afraid of having a c-section, actually the vaginal birth scares me much more than a surgery. If he is breech and I don't have to do labor there may be some weight lifted off my shoulders...so I'm not asking for prayer here!

Maxson has been so active, I can't tell you how much I treasure his movements I am going to miss this so much...ahh I can't even think about it.

He is so busy moving that today we had such a difficult time monitoring his heart beat. He would kick the thing that was recording his heart rate and then would move. I spent a good part of the appointment chasing him around my stomach with the... I don't know "thing that takes his heart rate". It has been really difficult to get any pictures of him, the last two ultra sounds he has had his hands and feet in front of his face and the umbilical cord. I know it sounds terribly uncomfortable but apparently he enjoys this position. But the few glimpses we had were great, I now understand how most parents find their kids to be the cutest cause from a 4d pic I can honestly say I think he is just the cutest lil baby ever!! I caught his mouth opening and closing today. And Max practiced with his lungs better than past appointments, this is very important!!

Not that it was part of his appointment but I asked the technician to measure his foot and it is a little over two inches. I don't know where this measurement stands but to me it sounds pretty big. I am hoping the reason he has his legs over his head is because he is just too darn big.

If you can't tell thus far I am gushing over him just a little today. He has given me so much to gush over today!!

I can't express how much already Max's beautiful life has taught me. To enjoy every moment, to be grateful for every moment he is here; he is here now that is what I am given tomorrow has not been promised. If I could just learn to transfer this realization to all my relationships and by practicing the effects that this understanding brings would change all the relationships in my life for the better. Life is something we all take for granted, time with each other is overlooked as expected not as a gift.

Praise God for today and pray for tomorrow

Love,

Trish

T18 Foundation

Hello, I have been praying so hard to have peace in one way or the other, c-section or natural birth. I haven't had that confirmation of what is best for Max. It's so difficult...I just thought I would ask for your prayers in finding peace with whatever decision we make. 

I am having one of those days when I am on the verge of breaking down every other minute. Breaking down sounds so severe, I mean just crying. The days vary much and today that ache is on my heart. 

Max has been very active, which is very comforting; he is letting me know he is still doing just fine. The days he is not as active leaves me holding my breath for every movement, it's just that from here out is so fragile. I thank God numerous times each day that Max is still with us. Max is so strong and is a great fighter, one reason I know this is he has quite a large hole in his heart and for him to be here now means he has beaten the odds stacked against him. Trisomy 18 babies generally miscarry in the first trimester. His odds of being born to begin with were 10 percent. He has passed that now he is on the upside, his odds of being born alive are 90 percent. His odds of coming home with us....ahhh I hate playing on the side of odds, the odds of having a baby with any chromosome problem are less than 1 percent...so playing on odds isn't for me.  His odds of coming home to be with us are GREAT! With all of you praying and asking God for Max's stay here with us to be at least as long as holding him on Christmas at home, and because I know my son is a fighter, I will say the chance is good, very good!

If anyone is interested in what to give to this Christmas Trisomy 18 Foundation (trisomy18.org) is selling a beautiful ornament that posted above there $30 includes shipping and would be a great way to support life and to support an organization that reaches out to families with information and research. 

Love,

Trish

Back so soon..

I know I posted just a short time ago but as requested I have to post a picture of Max's foot. Baby's feet are always so cute...and you can count he has 5 toes!! Dustin had to throw that in there at the appointment...he said it more like this "oh good, he has 5 toes!" Okay well I laugh... I married him I better find him funny!! So count um out! 

Love,

Trish

Back from MN

We got back late last night and I was planning on posting then but I was way too exhausted. Traveling this big in a tuna can of a car is just not so fun. My feet were swelled up so big I lost my ankles I had cankles!! Anyway no more 10 hour road trips for me and Max. 

We had such a great time with family and friends. We miss them already...it was great to be able to be with them and share Max in the belly with them. 

The doctors appointments were not as great. First off we really didn't learn anything we don't already know, and second I really hate the way doctors treat Max's life even though I am in agreement with most of the care we are choosing for him. We did learn Maxson weighs just under 3 pounds and that overall he is running around two weeks behind. He is where they would expect him to be given this disease.

I had my arsenal of questions ready for them and the first doctor I saw was very willing to answer my questions as where the second doctor was more like why are you asking that it doesn't matter...when I wanted to  say to him really just throw me a bone here and give me as much information as I am seeking to the best of your ability, that's all I am asking. You wont set up false expectations by telling me because his cerebellum is right where it should be it may help him to breath and swallow better.  I guess in this Doctors eyes the end is the same so why does the time in between the beginning and the end matter. Well, it does to me and Dustin and everyone who is waiting to share that time, that in between time matters greatly. So overall we really didn't need to see the doctors... but then we would have wondered, so its a good thing when I weigh the two out. Its funny cause I swear the machine they use for ultra sounds here is better than what they have at a professional place like Abbott. They did give us a bunch of profile pics not 4D pics but none the less I will scan them later and post some.

Saturday night many good friends of ours prayed with us and for Max's life. It meant a great deal...one of their daughters Sophie found a verse in the bible and her older brother Nate read it aloud while we prayed. The next day Sophie told me that she opened the Bible to that verse and then closed it and prayed to God and then opened it again to the same verse, she is such a sweet girl and at nine she has the most sensitive beautiful spirit about her. So I will leave you with that verse that God gave us during prayer and petition to him for Max's life.

We thank you, O God!

We give thanks because you are near.

People everywhere tell of your miraculous ways.

Psalms 75:1

Love,

Trish

6 am

Last night I had a very real and extremely cruel dream...someone I don't know who kept showing my baby clothes, tons of baby clothes, Halloween outfits, and Christmas outfits all of which in my dream I was told or at least remembered thinking my son wouldn't wear. I know... it was a depressing dream; I didn't tell anyone, when I woke up I thought about it in a very numb way. I guess having very real dreams about baby at this point is a very normal thing or so I read, I just wish mine were happy. All day yesterday I thought about it off and on but it was weird yesterday I felt great I was working on a wedding and I felt really happy even though the thought of the dream kept coming up.  

It caught up to me...I haven't slept yet.

Last night I stayed up late working and reading, as the night went on my mind and heart started to feel the sadness the dream had brought up. And not very rational thoughts began to wage war in my mind. Due to the time of night, or I should say morning, it probably was from being overly tired, pregnant, and the weight of my reality... One thing I want to make clear, as I have the greatest faith that God has the plan for my life and Max's in his hands I have the understanding of a sinful human and well my heart has the faith and security of Christ's love, I falter. I really don't have the wisdom to understand the purpose in Max's life I just pray that God might reveal some of the glory Max I know will bring to me. So with all that said and because I haven't slept yet, everything I write might come across a little emotional, forgive me for that, but as soon as I thought of writing and sharing I started being able to breath. So here is my therapy!

No one can ever understand the pain of losing someone they love if they haven't, no one can ever understand the pain in a loss if they have never felt loss. I always new that losing a child must be the worst type of loss but I never could have imagined the immense feelings of sorrow and I haven't even begun to grieve the loss of Max's life just the dreams and hopes I once had. So, I hope that this blog helps those that have suffered a loss and those that will need to try to understand...BEFORE, I handled myself around those who were grieving the same way most have with me...I would avoid the subject for two reasons; one, I didn't want to bring up any pain for that person and two, I didn't want to say the wrong thing...NOW, I understand what I thought before was all wrong. To ask about the person lost by name to not tip toe around the situation or to not avoid the person just because you don't know what to say are all ways to really help someone in grief. I understand everyone handles grief differently but I think if you were to ask most people who have lost which way they would prefer you to comfort them, and they would all want the person they loved so dear to be honored and their memories shared and cherished not to be treated as it were a secret or just wrong. There is nothing anyone could ask about Max that would hurt me as long as they were bringing up his name--within reason of course. 

My eyes are finally heavy and my mind is becoming mush. I have a feeling today is not going to be a very progressive day...I hope tomorrow I don't look back at this post with regret as I said I am pretty emotional...well if I do I apologize in advance, and thank all of you who are sharing this journey with us, even the not so down to earth parts!

Much love and a hug goodnight,

Trish

Christmas 2008

I wanted to post some pics from this weeks ultra sound but Max did not cooperate. His hands covered his face along with the umbilical cord...so no pics we did get a good shot of his foot. Maxson did pass his biophysical for the third week in a row! I thank God for Max's continued growth and presence in my life.

My doctor informed me that it is not typical for a t18 baby to be passing a biophysical with a 10 out of 10! Its funny how a statement like that can give me such hope and happiness. Usually I leave my appointments with a horrible ache in my chest...just hearing the reality from my doctor even though I already know it leaves me feeling so gloomy. I have left all my past appointments with hope sucked out of me and a dulling pain. But this appointment was different not that I didn't hear what I generally hear...Like the depressing plans and decisions needed to be made; or about planning the end of his life, granted he hasn't had his beginning yet. But just that one comment about Max doing better than what is to be expected, left me with so much hope. I left the office without fighting tears or trying to mend the ache, the irony being that this appointment I left with a handful of grieving reading material and information on planning a funeral.

Next week on Wednesday we will be meeting with some specialists in Minneapolis, they will be able or hopefully able to help us answer some questions that will guide us in our decisions for Max. It is difficult to make some of these choices with no certainty that your making the right choice. Also we will be having another level 2 ultra sound that will let us know more about Max's condition. Max had one hole in his heart, a dilated kidney, and two choroid cysts on his brain. So please pray for the healing of our son and that he keeps up his growth; both of these prayers being answered will be vital in our hopes to spend time with him.

As I said in an earlier post when it comes to planning Max's birth we are to think about what we want most for him. For example, some people want there baby baptized or want their family to spend time with the baby or to have their baby see a sunset. I have figured out what I want most for our son...Max's due date is Christmas day. Christmas is my favorite time of the year I love everything about it and everything it means. Last year I was thinking I may be pregnant on Christmas and what a gift that it would be, as we started a fertility treatment last November, well I wasn't pregnant but... Then we found out I was pregnant in April and that my due date was Christmas day; it seemed so fitting cause of all the hope I had in being pregnant the previous Christmas. I praised God on my knees for our answered prayers and thought ahead of how Christmas 2008 was going to be the best yet. So now it is that... I want Max to be in my arms and at home celebrating Christmas with his family; this is what I want most for my son, to be here on Christmas. There it is, a new prayer request. We are trying to make the best choices regarding his birth plan so this may happen but I know without the request in prayer to God it will all be in vain. Join us in praying for this request and if God willing I know we will spend the most beautiful day of the year with our son.

much love,


Trish

Now 30 weeks!

Isn't he cute...he looks comfortable and to me he looks completely normal and healthy! Those hands are still by his face but at least they weren't covering his whole face. 

30 weeks now, 10 weeks since we found out the horrible news of Max having t18 and 10 weeks until his due date... with time passing so quickly the fear of losing him is becoming so much more real everyday. The hard choices and planning for him are coming to a front; when we have to actually make those decisions about his life and passing.

I feel him moving so often I can now see him moving, which is pretty neat! Medically now we are going in once a week to monitor Max. To make sure that he is not in distress and is continuing to grow. So far the last two weeks he scored a 10 out of 10...this news is so great but at the same time it makes me realize how fragile his life is. With Trisomy 18 it is not uncommon for them to stop growing after 27 weeks or to go into distress... so we are living now week to week with the hope to make it to his birth date and meet him and God willing bring him home. I know he is a fighter and I know we can make it with continued prayer and faith. The day I get to introduce him to everyone who visits this site for Max is going to be a wonderful day! 

But now I am trying to make it day to day... if i don't stay in constant prayer and walk with God its easy to drop off and break down, trust me I have had many of those days. I am loving carrying Maxson under my heart but with the reality of his life being so short also looming constantly on my heart its a very painful, lonely difficult road.

 I do not regret our decision to carry Max full term, to end his life to me would have not been giving him the life that God intended and that he deserves! I feel more passionately than ever before about giving life and not ending it when it doesn't work out with our life or medically its not compatible with life; with which they deemed Max. And I think everyone who sees his pics above has to agree that Max's life and the words "not compatible with life" should NEVER be used together. 

Since when is that fair medically or not to use those words with human life, I use those words with things like computers, some programs are not compatible with Macs but to use that with human life... So when someone is so sick with a disease that it ends in death then we should say they are not compatible with life. Sorry for my rant against this, but this is what they told us about Max this is what the world summed up Max's life to be...incompatible... in most of the medical world they do not support our decision to carry Max full term. Thank God we have a doctor that does. So you see they angered me and broke my heart with those words; I have the heart of a Mother because Max is my son no matter what is said.

Love,

Trish

I want you to know.

Dear Max,

Right now you are resting, pretty comfortably I think, unlike yesterday when you were kicking and moving so much I wondered if I had too much sugar. It feels great to feel you kick and move around. Your Dad also loves when he feels you kick. The first time he felt you kick he was a little freaked out by how strong you are! You literally kicked his hand off my stomach -pretty impressive little man!! 

Anyway, I really want you to know a few things. First, I want you to know how much me and your Dad love you, the love is greater than I have ever known. I want you to know that the doctors say you have some health issues but despite that we are going to have a happy and joyful heart the moment we see you. We are really anticipating our time holding and comforting you and praying for a great miracle more than what we have already received in having you. There are so many people praying for you. Your name is well known and loved by many already! I know you will continue to come through with which we named you Max meaning strength and great, you already have been so great and from what I feel you have strength. So keep on son!

Your Dad is going to be the best Dad ever! He has so many things to teach you, not only will he teach you how to work on cars but also he could teach you to build anything you want. He also has very strong character he will show you how to be honest and look out for others. He will show you how to treat a woman and how to be a real man, he will be there through it all cheering you on! I just wanted you know a bit of what your Dad is about and what he will be like as a father. 

I already know a few things about you, like me you like to have your hands by your face. The ultra sound we had this week proved that like the past looks we had a difficult time seeing your face you loved to keep your hands there. As the pics display above...we did catch you though! You very much enjoy this lil bunny aunt Chris gave you it plays twinkle twinkle little star and every time I play it you move. 

We can't wait to see you face to face. Everyone is excited to meet you. Your due date is on Christmas day but we may see you sooner or maybe later. 

Love you Max,

Mom

When bad things happen...

This morning we had to rush our dog Sady to the vet she was shaking and wouldn't walk. I stay pretty cool through "what if" situations, so I didn't stress much but it did cross my mind we could lose our dog. I went right to God with this; I just told him there was no way I could handle this on top of everything else...But, one thing I have had to come to understand or at least swallow is we don't have control over everything in our life, we don't know what our future holds, we don't know what hardships we will have to endure, or what joys will be coming our way. Yes, we all will lose someone we love, and yes we will have moments of joy but what brings about the two is entirely out of our control...very humbling and in the hardships, extremely frustrating.

So...Sady is okay she has to be confined or not allowed to move around much for about 3 weeks. She was prescribed some pretty good painkillers and muscle relaxers so she's feeling pretty good. I felt bad about kenneling her all the time so we put a pillow in a laundry basket and carry her around so she doesn't have to be alone, she looks like a queen! So that's that....I mean for today! Because one thing I know is we are not saved from nightmares, we may be saved from hell, but while we are here in an imperfect, sinful world we are going to have nightmares; we are going to experience all kinds of pain.

I have had a lot of people tell me that Dustin and I don't deserve this; I will say that was very difficult for me to get over, I thought the struggle with fertility was our great tribulation and trial. There was a crazy amount of prayer around this baby before he was even conceived. I can't express how much Max was and is wanted; so as human as I am it never even crossed my mind that God would allow anything bad to happen to this child. And I felt Dustin and I had been seeking for God and for his will in our lives...I guess I am trying to say I felt like we were somewhat saved from bad things at least something like what is happening now. We did speak to the pastor of our church and he brought up a thought I have had to chew on for some time now. People say why do bad things happen to good people, but really why do good things happen to bad people? All of us, everyone is born bad, born sinful. The degrees in this vary much, I know, but NO ONE is good we may do good deeds but we are not pure, blameless, sinless...So why does any one of us deserve the blessings we do have, what makes us more worthy than the next to receive the good things in our lives? This question is now in my arsenal of questions for Jesus someday.... But now I believe this; no one is saved from nightmares, God is there to help and comfort us but not to save us from pain. Max having t18 to us and to all of you is a horrible nightmare it's heartbreaking and in moments seems so unfair, however I have to understand there is another side we don't understand. Because in God's view Max is going to be held and loved and comforted by Jesus, I can't imagine who else could raise a boy better than Jesus. Not only will he have Jesus to raise him he will never have to feel the pain we do....he WILL BE SAVED from nightmares!!!

I just wanted to share a bit of what I have been thinking, praying, and seeking understanding over...hopefully I will continue to have more understanding about God's plan for Max. I want to find peace about the plan he has for our son, I want to get past the why God.

Today

Thank you so much for the prayers, honestly, I have felt renewed strength since the day I last posted. Your kind emails have been a great comfort, all of your words help. Forgive me if I don't respond personally I have just been wordless after reading each one of your emails. I want to let all of you know how much we thank you and how we appreciate the time you took to write your thoughts and cares for us -it means a great deal!

Today is week 26 of Max's life... I am enjoying him inside me so much that I think I could stay pregnant forever with him safe under my heart. But I suppose you will talk to me at 36 weeks and will be dying to see him face to face. 

One email that I have received talked about the need to ask God in detail for what we need, so I wanted to pass on prayers that we want for our son:

First of course we want a MIRACLE...we want Max to baffle science and break every rule of his diagnosis, we want God to correct the error in the chromosomes and give Max a healthy life with us. I pray for this but I also pray if this is the path for Max that he comes into this world with no pain, that he will be able to breathe on his own, that he will feel great comfort and love, that he will be strong enough to come home and spend time with us, that his heart will heal, that his kidney will heal, that his brain will tell him to; breathe, swallow, and live, that he will not need to be tube fed, that he will be able to smile and giggle, that he will be able recognize and feel our comfort and love for him....PLEASE ASK GOD ON MAX'S BEHALF that he will honor our requests and bring this special baby into the world if not healed than free from feeling pain and full for feeling love and comfort. 

Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on Knocking, and the door will be opened to you. For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened. 

You parents-if your children ask for a loaf of bread, do you give them a stone instead? Or if they ask for a fish, do you give them a snake? Of course not! So if you sinful people know how to give good gifts to your children, how much more will your heavenly Father give good gifts to those who ask him.

JESUS~Matthew 7:7-11

Love,

Trish

The down times...

I meant to post after the ultra sound and doctors appointment last week, but it turned out to be the beginning of a long lasting low...I have been waiting for this dark cloud to move but it hasn't. I wanted to make sure all my posts were coming from someone who was leaning on God and who found joy and excitement through all the trials...but that's just not happening lately... I am leaning on God, but he has given us all this amazing spectrum of emotions that range anywhere from feeling on top of the world to feeling like your crawling along just to make it. And that's where I feel I am since last week, crawling along. Fighting through the day to make or find moments of peace and happiness cause right now those feelings are difficult for me to come by. I am SO grateful for my family and friends, my mom has been trying so hard to cheer me up, Dustin has been such a rock especially at night when for some reason it hits me the hardest, plus the emails from all of you really do give me some understanding, hope, and purpose. Its just lately, its been tough.

I don't know what I was expecting but the Doctors appointment last week was about the decisions we need to start thinking about, the birth plan we need to figure out. Decisions no expecting mom should have to decide or even think about. I feel Max and saw Max growing via the ultra sound and the love I have is growing so much as the days go on for my baby boy that I feel and tell God that I feel this is the cruelest reality...I hate the reality of this. Max is a very loved boy and I think like any mom... I don't want to give him to Jesus... I don't want to have to make choices about his passing or choices about trying to keep him alive after his birth that may cause him pain or be sad by all those thoughts cause he is very much ALIVE NOW! So this is my catch 22 right now...making choices that just break me to even think about and fighting for Max...for a miracle, for the pregnancy Max deserves, for a purpose that will make all this seem as an understood offering...for hope, happiness, joy, and peace I don't want Max to feel my anguish. I need him to feel the love I have for him in a joyful manner not a tear soaked pillow every night. So please pray that I will be able to impress that type of love on his very being and that I will find renewed strength to be able to walk this road. 

Thank you for reading; I know this may not be as hopeful and strong as the previous posts but I need to get it out and I desperately need the prayers of strength right now.

Love,

Trish

A prayer request

Thursday we have another ultra sound and I am very excited to see Max again. Last night he was all over the place he was kicking more than ever; thats how he has been in all the ultra sounds too, which means he's a fighter!! I keep thinking how amazing would it be to go to the ultra sound and baffle the doctors. His hands open, foot straightened, heart healed just everything healthy...so I keep hope in that miracle. But it's difficult so many families that have gone through this, such amazing families...I feel almost bad thinking I could receive such a miracle, the "who am I " card comes up but like I said before Max is already our miracle and I could and sometime will write the blessings of having him in our life cause I already feel and know some and have many more to come.

Tonight though my heart is aching for a family I started following just days after I found out about Max. You can find the link in the side bar under inspiration "An Unfinished Life". Leah the mother of Christian who passed from t18 just a short time ago is having a very difficult time right now with blame and I just want to lift her up in prayer that she finds peace and that Jesus would wrap his arms around her. I break with the thought of the loss but she is in it now and needs prayers from all over. So please don't forget to pray for her.

Thank you so much to everyone who has kept us in your prayers. I don't know how to express our gratitude, all I know is I don't know what we would do without the prayers, emails, and support of family and friends it means the world to us.

Love,

Trish

Previous E-mail

Hello everyone,

I want to start by thanking everyone for all your prayers, emails, and support it has been so comforting!

When we first heard the grim news about Max I was devasted I felt pure despair as there is nothing I could do to change the circumstances. I felt anger and the greatest saddness I have ever known, my heart just broke. I will say this though, when Dustin said the tests came back positive for trisomy 18 I felt God immediately tug on my heart and say he was there with me. Although I still felt the emotions and the helplessness, I also believe God's presence was real he let me go through my emotions but was there through it all. (2 Corinthians 1:3-6)

The next couple of days after that I questioned and kept questioning God, not feeling any response to any negging question that was torturing my mind. Why? For what possible reason? How could he do this? I also could not comprehend how I was to move on through this pregnancy. How could I find any joy in it? How could I possibly celebrate this life? I already love Max so much, and I don't even know how much time I will get with him or know if I want time with him? How can I stay strong enough to share this pregnancy with anyone?

So far I can't answer all of the questions above, I can't tell you if I ever will be able to answer some of them. I do know God has a plan and I find great comfort and hope in that. I also find through your prayers I have a great deal of peace which passes all understanding!! I also know I am going to find joy in this pregancy because he is my much wanted lil boy and I love him. I awoke this morning with a great deal of peace, I felt God's presence, I felt Bible versus on my heart, and I also felt Max kick. There was a great deal of joy and excitment this morning and I will rejoice in God for that.

I do believe and will continue to pray for a miracle and whether Max is healed completely or spends some time with us after he is born I know he will be a miracle, his life to me is already a miracle. He is always going to be our son and I find hope and comfort knowing that we will one day be with him forever.

Through God's grace I find peace, hope, and great deal of love for my son. And I know that Max's life as short as it may be has great purpose.

So please continue to pray for Dustin, Max, and myself. We thank God for the comfort everyone has shown us.

Love,
Trish and Dustin

(Phil 4:6) Don't worry about anything; instead, pray about everything. Tell God what you need and thank him for all he has done.(Phil 4:7) Then you will experience God's peace, which exceeds anything we can understand. His peace will guide your hearts and minds as you live in Christ Jesus.