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