Since we heard the words:
"Balanced 11,22 Translocation".
Soon after that we were told we could have ANOTHER child with Emanuel Syndrome.
We were also informed we were at high risk for multiple miscarriages and still birth.
I was still reeling from Makily's diagnosis just a week before........and then this.
I remember that day so clearly.
Makily was still in the NICU.
In fact it was the same day she had her FIRST G tube placement surgery.
She was three weeks old. I was walking into the NICU to see Makily before her surgery. I can still smell the soap I had just washed my hands with. I vividly remember the feeling of panic when I saw the Geneticist walking towards me. I wanted him to just tell me....hurry up.......what are you going to say?
When he did tell me he was SHORT, not so sweet but to the point. I remember standing there watching him quickly walk away feeling like I had just been kicked in the chest.
I remember thinking to myself that I would never have another child. It was too painful on top of all the other crap going on and so I would push it as far back as I could.
When I mentioned it to anyone they would quickly say "Oh you shouldn't worry about that right now".
So I tried not to worry about it, I tried not to talk about it.
Deep down though, in my heart I knew Makily would be the first, last and only baby that grew in my tummy.
Allen and I have discussed every option and scenario there is as far as children are concerned. I have struggled and gone back and forth as far as what I want to do. The last year or so has given me some clarity.
I don't EVER want to get pregnant naturally EVER again. The thought of it nauseates me.
If I did get pregnant again I would have wait an agonizing six weeks or more to know if the baby was healthy or unbalanced.
Then what?
Then Allen and I have to face the decision of choosing to terminate or not?
Terminating a pregnancy is not really an option for us.
I don't judge those that have made the heart breaking choice to terminate a baby with a severe medical and developmental problem. Until you have been faced with that decision you do NOT know what you will do or how you would feel. That being said I do know my heart, I know my beliefs and when push comes to shove, I just don't think it's a decision I could make. I have the utmost respect for those who have had to brave this very scenario. I just don't have it in me and I don't feel like it is what God has planned for us.
It is because of all these reasons that tomorrow morning at 8:30 a.m. I am going in to have my tubes tied.
My heart is hurting tonight. I want it over with so I can move on and let go. I have to let go of the baby that never was.....and never will be. Makily is not the "perfect little girl" that I dreamed I was having back then but she is MORE THAN I EVER IMAGINED I COULD HAVE EVER WANTED OR NEEDED. Being her mother is the HARDEST and best thing I have ever done and so I am grateful for that. All that being said it still pains me to walk past the tutu's and ballet slippers in the store and know that Makily will never dance in them...except in my dreams....and believe me, I have those dreams. Those and dreams of her walking and talking...then when I wake up my I am so sad......
I don't know what is in our future, I can't even begin to guess. I never guessed that this would be my life and to be honest there are days when I still say "what the heck.......who's life is this"?
It's the life that God had planned for me though and while the last five years have been hard.....I wouldn't change any of it. I never would have dreamed that I would be a foster mother. I would never dream I could live through half of the things I have lived through since Makily was born.
I am stronger BECAUSE of her and that is the strength that is going to get me through this.
I love you Makily, more than I could ever tell you with words little girl.
Say a prayer for me and send positive thoughts to me tomorrow morning please.
Love
Trish
"Balanced 11,22 Translocation".
Soon after that we were told we could have ANOTHER child with Emanuel Syndrome.
We were also informed we were at high risk for multiple miscarriages and still birth.
I was still reeling from Makily's diagnosis just a week before........and then this.
I remember that day so clearly.
Makily was still in the NICU.
In fact it was the same day she had her FIRST G tube placement surgery.
She was three weeks old. I was walking into the NICU to see Makily before her surgery. I can still smell the soap I had just washed my hands with. I vividly remember the feeling of panic when I saw the Geneticist walking towards me. I wanted him to just tell me....hurry up.......what are you going to say?
When he did tell me he was SHORT, not so sweet but to the point. I remember standing there watching him quickly walk away feeling like I had just been kicked in the chest.
I remember thinking to myself that I would never have another child. It was too painful on top of all the other crap going on and so I would push it as far back as I could.
When I mentioned it to anyone they would quickly say "Oh you shouldn't worry about that right now".
So I tried not to worry about it, I tried not to talk about it.
Deep down though, in my heart I knew Makily would be the first, last and only baby that grew in my tummy.
Allen and I have discussed every option and scenario there is as far as children are concerned. I have struggled and gone back and forth as far as what I want to do. The last year or so has given me some clarity.
I don't EVER want to get pregnant naturally EVER again. The thought of it nauseates me.
If I did get pregnant again I would have wait an agonizing six weeks or more to know if the baby was healthy or unbalanced.
Then what?
Then Allen and I have to face the decision of choosing to terminate or not?
Terminating a pregnancy is not really an option for us.
I don't judge those that have made the heart breaking choice to terminate a baby with a severe medical and developmental problem. Until you have been faced with that decision you do NOT know what you will do or how you would feel. That being said I do know my heart, I know my beliefs and when push comes to shove, I just don't think it's a decision I could make. I have the utmost respect for those who have had to brave this very scenario. I just don't have it in me and I don't feel like it is what God has planned for us.
It is because of all these reasons that tomorrow morning at 8:30 a.m. I am going in to have my tubes tied.
My heart is hurting tonight. I want it over with so I can move on and let go. I have to let go of the baby that never was.....and never will be. Makily is not the "perfect little girl" that I dreamed I was having back then but she is MORE THAN I EVER IMAGINED I COULD HAVE EVER WANTED OR NEEDED. Being her mother is the HARDEST and best thing I have ever done and so I am grateful for that. All that being said it still pains me to walk past the tutu's and ballet slippers in the store and know that Makily will never dance in them...except in my dreams....and believe me, I have those dreams. Those and dreams of her walking and talking...then when I wake up my I am so sad......
I don't know what is in our future, I can't even begin to guess. I never guessed that this would be my life and to be honest there are days when I still say "what the heck.......who's life is this"?
It's the life that God had planned for me though and while the last five years have been hard.....I wouldn't change any of it. I never would have dreamed that I would be a foster mother. I would never dream I could live through half of the things I have lived through since Makily was born.
I am stronger BECAUSE of her and that is the strength that is going to get me through this.
I love you Makily, more than I could ever tell you with words little girl.
Say a prayer for me and send positive thoughts to me tomorrow morning please.
Love
Trish
16 comments:
I will keep you and your sweet family in my prayers. You are such a wonderful parent. Thank you so much for sharing your stories.
I just had to say that I think Makily is an inspiration! She is one of the strongest kids I have seen. She has touched my life even though I have never even met her.
I feel like I have gotten to know her through all of her videos and pictures. She is growing into a beautiful young girl. I love her too! Give her a great big hug. She is amazing. ^_^
I held my breath for the entire entry. Trish, there is something about the way you communicate that leaves an incredibly clear impression of the feelings and emotions you go through. No one else has had this impact on me. You sharing your life so openly and honestly with the world is an inspiration to me. I dont know what is in store for you, but I do know this-
God has granted you inmortality in your writing.
And I know Makily understands a whole lot more that we think. When you get to heaven and have that long heart to heart with God, Im sure your mouth will drop open as He reaveals secrets that were much too complicated to understand here on earth.
May you have a quick and comfortable procedure, and may your old dreams be replaced by much greater and more beautiful ones. God works in ways we cannot understand. And He is at work.
You are a good mom.
PS
not that my oppinion matters much, but I think you are doing the right thing.
It's really none of my beezwax, but I have to wonder if you've looked into things like pre-genetic testing (which is an option when doing IVF). Can Makily's condition be found in PGT? If so, this might be an option for you in the future, should you decide you want to carry a child again.
Again, none of my business. I can't begin to imagine what you go through day to day, but reading your blog for as long as I have, I can get an idea. I don't know if I could do the same thing with as much grace and dignity as you've shown.
Good luck to you tomorrow! I hope your procedure is quick, painless, and peaceful.
Prayers for you, Trish, and no judgment here.
Hugs to you sweet Trish. You are so right, that no one knows or understands the reality of having a child with special needs and the thought of making such a decision, no matter the end choice would not be any picnic. I thankfully, have not had to make that choice. You are an amazing mommy to both Makily and your Little J.
Will be thinking of you tomorrow and sending up prayers for a speedy recovery and a easy time "letting it go". Hugs again!
Becky,
We have looked into PGD w/IVF. IVF itself is $15K and PGD is another $5k. The chances of my getting pregnant this way are slim to none. It's possible but unlikely. I am a member of a board for other people with balanced translocations and there are MANY members there that have had PGD w/IVF. They have gone through the entire process and then when the testing on the embryos is done ALL of the embryos are unbalanced....meaning that's $25k down the drain....and no baby. We don't have that kind of money laying around. I can't mortgage our house or take out a huge loan knowing that Makily will need care ALL of her life.
All this being said if we did win the lottery.....we would possibly try it. For now though, it is was it is.
sigh
Ah my friend. So, this is it. We have talked a lot about this - I did it too so what can I tell you more than we have said...I love you soooo much Trish - you are one of my true friends - you get me so well. I value everything we go through together, good and bad, and I get your decision. If I do win millions I will send you $20,000 so you can go adopt from China, and I'll reapply and go with you, lol.
I'm not sure if I told you this before, but shortly after I got married, a woman read my palm - just a customer at a store I worked at. (she was eerie, but a sweet old lady so I let her) she told me that she saw many, many children in my future. The day I tied my tubes, I thought of her, swore at her, thought to myself she was a raving nutbar. Why would a sweet old woman try to predict something that I wanted so bad and then here it was never to happen?
I never got it, until we fostered, and then adopted two of the most precious gifts a human could receive. I am so sad that we all have to face such hard, agonizing gut wrenching decisions being carriers - decisions only we can find the right answers for - do we, don't we, will we ever find our dreams? But you know what? We are ultimately responsible for our own realities, and if you want more kids bad enough, the universe will find them for you and bring them into your arms. I believe in that with all my heart. It may not happen for a while, and you may give up on that dream (we did for 10 years) and then magically you find your peace. I am wishing that for you more than anything you can know. I am right beside you right now holding your hand. I don't know why reading this this morning makes me cry - because that is what I am doing - it isn't because I am sorry we have two beautiful adopted kids - maybe it's the memory of that sick feeling I got when I knew I was going to close that door forever. I still feel it like it was yesterday, laying there in bed after it was over. It hurts, no matter if we feel it is right for us to do or not. I am hugging you so hard in my head.
Love you, love you, love you Trish - I am always wanting the world for you....it will come.
Praying for you today and everyday.
Oh Trish. I am keeping you in my prayers. I know how hard this is.
still praying....
You are in my prayers. I know this decision, though it seemed so clearcut was still heartbreaking. I admire your strength
What a sweet and beautiful mama you are. Any child who chooses your family is incredibly lucky. Sending you peace and light tonight and will be sending many good thoughts your way tomorrow.
Nena (gsmom on P2P)
www.caringbridge.org/visit/reesejohnson
I am of the praying persuasion and I will definitely be lifting you up when I chit-chat with God tonight, Trish.
I can honestly say that I completely understand your emotions. Been there, done that. Am there, doing that.
Hugs!
Keeping you in my thoughts and prayers!
hugs and prayers sweetie. I love you, A
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