Do it anyway............

So we are more than halfway through our fostering care licensing classes. We have two more Saturdays to go and then they start the homestudy process. I am having every conflicting thought and emotion in the book. I am excited and nervous, happy and sad, part of me wants to JUMP into this headfirst and the "sensible" part of me is telling me to be careful.

I am excited to be opening my home to a baby, a child that I can open my arms to and be there safe place to fall. On the other hand I am fearful and nervous that I will totally fall in love with a child just to have it taken from me. Then again I feel like if everyone used that excuse as a reason NOT to foster, well then no one would foster except people that are in it for the money. I just think if you are into it for the money, then you are fostering for THE WRONG reasons.

I also have feelings of gulit every now and then.
Am I taking away from Makily? Am I going to be able to give her the attention she needs and deserves with another child in the house? Am I just being selfish to desparately want another child? Can I really do this?

Even with all those thoughts and feelings, I do have a sense of peace about fostering if that makes ANY sense at all. I just figure that whatever is meant to be will happen. I learned the hard way when I had Makily that NO MATTER how much you plan or how hard you try to be in control...you REALLY have NO control over your life. I guess I just have to "do it anyway" in spite of my fears.

Allen and I have decided we are going to foster babies from zero to two. We had our reasons when we started the process for that and the farther into this we get the more sure of our age group choice we are.
We feel like if we can get a child before they are two, hopefully the problems they have experienced in their lives that have landed then in foster care that they possibly will not remember those things. It will be easier to form a bond with a younger child. Makily is also a consideration. If we were to take an older child they may not be as understanding and as accepting of Makily and we would prefer that the child be able to "grow up" with Makily. It seems that the older children (meaning 4-5 and up) seem to have more extreme behaviors. It's terribly sad some of the stories we have been told about some of these children and what they have been through. While I feel for them from the depths of my heart, our first priority has to be Makily. I would never forgive myself if we brought an older child into our home that somehow abused Makily as a result of abuse THEY had been put through. This is something that happens often. We were told that some of the teens have falsely accused someone of sexual abuse to get moved to a new home, just to admit they were lying once they were moved. You can't "unring that bell" and it's just not a risk we are willing to take.

So after all those thoughts and fears have gone through my head, we are still willing to foster. I keep reminding myself that usually the things that are hardest for us reap the best rewards....Makily is my prime example of this. The first year of her life was a living hell for her and our family. I would go through it all again to see her take those first steps that I was told she would NEVER take or to see her smiling and hear that AMAZING laugh of hers.

My sister told me about this song the other day. It really rings true in my life and I think it fits this blog entry perfectly.

Anyway

Martina McBride/Brad Warren/Brett Warren (BMI)

You can spend your whole life buildin'
Somethin' from nothin'
One storm can come and blow it all away
Build it anyway

You can chase a dream
That seems so out of reach
And you know it might not ever come your way
Dream it anyway

(Chorus)
God is great, but sometimes life ain't good
When I pray it doesn't always turn out like I think it should
But I do it anyway
I do it anyway

This world's gone crazy and it's hard to believe
That tomorrow will be better than today
Believe it anyway
You can love someone with all your heart
For all the right reasons
And in a moment they can choose to walk away
Love 'em anyway

(Repeat Chorus)

You can pour your soul out singin'
A song you believe in
That tomorrow they'll forget you ever sang
Sing it anyway
Yeah sing it anyway

I sing
I dream
I love anyway

And so a new part of our journey begins....

Allen and I have struggled for the last 2 years on whether or not to have more children. When Makily was 6 weeks old we met with the genetics counselor. She went over statistics and options with us. Since I am a carrier I have a 50/50 chance of getting pregnant with another Emanuel Syndrome (ES) baby. Horrible I know. What's surprising is that they say I only have a 6-10% chance of carrying the baby to term. Basically that means that if I were to get pregnant with another ES....I have about a 90% chance of miscarriage or stillbirth. I know some would see the 6-10% chance of having another live born sick baby and say "those odds aren't that bad" but when you already have a child that has a Emanuel Syndrome it becomes more real, yes I realize it's not common BUT IT DOES HAPPEN. I no longer think "oh that will never happen to me". Those days are soooo loooong gone. I remember in the first few weeks after Makily was diagnosed I kept saying: "this is something that happens to other people....Not me". I have learned over the past 2 years that ANYTHING CAN HAPPEN TO ANYONE. No one is immune to problems, hardships and tragedy...no matter how low a statistic is, or how rare something is, bad things can happen whether you want them to or not. I know that sounds so negative and I'm really not a negative person. I guess I just have this new outlook that anything can happen, at anytime, to anyone.....good or bad really.

The thought of accidentally getting pregnant makes me nauseas. Since I carry this genetic flaw these are the risks that I would have if we were to try to get pregnant naturally.

*Miscarriage
*Stillbirth (which would send me totally over the edge having to deliver a dead baby)
*An Emanuel Syndrome child (I adore Makily but her life is incredibly unfair. She has suffered more in 2 years than most adults have their whole lives, I would always blame myself for everything that child would go through, I didn't know before Makily and there are bad days when I still blame myself anyway.)
*A child with the same genetic problem as me (meaning this child would be destined to deal with the same issues and be forced to make the same decisions I am struggling with. How fair would that be? I wouldn't wish this on my worst enemy much less my own child)
*A healthy baby (even typing those words is foreign to me. It just seems like something so far out of reach for me sometimes.)

**I am incredibly bitter than I will never be able to naturally conceive a child and rejoice in the moment those two lines appear on that test. It angers me that instead of being excited if I were to get pregnant naturally I would be filled with FEAR and terror. **

I recently brought up a scenario to Allen. It's one that has haunted me since I had Makily. I asked him "Had we found out that Makily had ES while I was pregnant, what do you think we would have done?" This is a hard topic for me because as long as I can remember I have been VERY PRO-LIFE. We discussed it for a while and Allen said he would have wanted to continue the pregnancy. I think my first reaction would have been to terminate, you see when Makily was diagnosed we were given a pretty bleak outlook. I believed she was going to live a horrible life filled with sadness and suffering, so had I been told that when I was pregnant with her, it would have scared me to death. I was a much different person back then. After much thought, conviction and discussion I believe Allen and I would have decided to carry her to term and pray for the best. I would have had a TORTURED and very sad pregnancy. I know that we would not have let them make any interventions with Makily at birth though. We would have set up a birth plan and said to just give her comfort measures, to let us hold her and love her for the time she was here and I know Makily would have slowly slipped away that night. It makes me cry just typing that. I know that Makily would not be here right now had we known............She could not have survived without all the interventions that were made. I would not have had these two years with her.
This is EXACTLY why God did not let us find out.....Makily was meant to be here.

I will admit, there have been times that I have sat next to Makily's bed in ICU crying many tears, wondering "how far is too far". How much is too much to do to her before we say "that's enough, leave her little body alone". That is another part of parenting a medically fragile child that sucks. You make decisions that no parent should ever have to make....then you constantly question yourself and everything decision you have made. I have often said "I am so sick of picking from 2 choices that both suck.....picking which sucks least is awful". Every surgery Makily has had we have always been faced with "it will fix this but may mess this or that up". Who can deal with that?
Before Makily had I heard someone talking about terminating their handicapped baby I would have been LIVID. I would have thought those parents were incredibly selfish and it would have made me nauseated. Now that I have watched Makily struggle, go through surgeries, seizures, g tubes, feeding issues, therapies and illnesses that I understand. I understand a parent wanting to save their child from the pain and suffering that their life would be filled with. I understand a parent that is so afraid for not only the future of that child but the rest of their family. I understand that having a handicapped baby does not only affect the mother and father of that baby but the entire family. When Makily is sick and hurting so is our entire family. When Makily has surgery we all sit on pins and needles praying that she will come out okay. I would never go back and change it because obviously my Makily was meant to be here, but it has been terribly hard for EVERYONE. What holds it all together is looking into Makily's eyes and seeing the innocence and purity that IS Makily. Seeing her smile and laugh makes it easier for me to keep pushing her to eat by mouth and to force her to do therapy. Knowing that despite all her problems my child is happy. She knows she is loved and she is happy and I can't ask for anything more than that.

The fact of the matter is though that Allen and I want another child. I had tried convincing myself that I could go the rest of my life not trying for more kids and not regret it.. Well I know I will always wonder "what if?" God forgive me but there are things I will never get to experience with Makily. That brings an ache to my heart that I cannot even begin to describe. Knowing I will most likely never hear Makily say "Mamma" or "Daddy" brings tears to my eyes. That being said there are things I have learned and experienced with Makily that I never would have had she been a "typical" child. Those lessons are what have made me who I am. I am incredibly grateful that God allowed me to learn those things and be Makily's mommy.

Allen and I have decided that we want to try IVF using donor eggs. We *could* use my eggs but there is more testing involved if we go that route. It would also involve discarding of any embryos that carried the same "genetic flaw" Makily has. I don't judge anyone who does this but for Allen and I it's just something we would feel guilty about. To us that is like saying we want to "discard" of Makily. This process is also not totally perfected and reduces our chances of a successful pregnancy. I figure we should bypass my eggs altogether and then we will have our best shot.
Obviously money is an issue here. I have an appeal in to our insurance company and am awaiting a reply. My argument is that if we have another ES child not only will the insurance company be forced to cover Makily, they would have ANOTHER expensive kid to cover. It would just be cheaper for them to pay for IVF with donor eggs. If our insurance company comes through and decides to pay we do not plan on starting the process until late next year.

Please pray for our family and pray for God to show us the right way.

2 words that make me sick to my stomach....

Balanced translocation.

2 numbers that make my stomach churn.

11 and 22.


These words and numbers used alone and NOT together are not a problem to me. It's when you group them together I get nauseated. I see them online or hear someone else say Balanced translocation, my heart skips a beat and I get excited, then sad. Excited because FINALLY someone else knows EXACTLY how I feel and shares this rare "fluke" with me.......Then sad because I know they have walked the same hard road I walk, felt the same guilt and self hatred I have felt, but mostly asked God why more times than they can count.

When Allen and I were trying to conceive (ttc) we had fertility testing done. I was convinced I had endometriosis or some other female disease or syndrome that would leave me infertile for life. I was mortified at the thought that I would never be able to have children. I would obsess about what was wrong with me fertility wise....before I even knew there was something wrong with me. I don't know why but I always feared not having children. I was never one of those people that went through life saying "i'm going to be a doctor, a nurse, an astronaut or even the president". I just wanted to be a mommy........okay so there was that one year I wanted to grow up and be a rockette, realizing back then that I was way to short to even be able to try out...I decided I would be fulfilled and happy being a wife and mother. (although sometimes I will do kicks in the living room to entertain Makily from time to time....JUST KIDDING...okay not really)
So after 6 months of trying my stupid obgyn told me I had low progesterone and that he would prescribe clomid (mild fertility drug). I FREAKED out. All my years of worrying and wondering what was wrong with me had come to fruition...I HAD LOW PROGESTERONE.....I knew it, I just knew something was wrong. So after reeling in depression over that diagnosis I began taking clomid. This medication made me cry all day long and want to watch Steel Magnolias and Lifetime original movies long into the night. My first month on clomid I had HORRIBLE pelvic pain and went in to have an ultrasound. Oh the joy and fun that was. Imagine holding about 2 gallons of urine while having someone press on your stomach in the midst of stabbing pelvic pain. This lady had ZERO sympathy for me and my busting bladder and actually had the nerve to ask if I had drank the 2 gallons of prescribed fluids before the test. (okay not 2 gallons but it sure felt like it) YES I DRANK ALL OF IT! Then she instructed me to drink more....I gulped down another 8 ounces and laid down for more torture. She finished that part of the ultrasound and then told me to empty my bladder....but just a little....ARE YOU CRAZY I am thinking...just a little!? How am I supposed to do that.....I feel like a racehorse right now and you want me to pinch it off!?!? So I waddled with my legs crossed to the bathroom and peed....just a little. This was torture! I lay back down on the table and she explains she is going to do a transvaginal u/s. *sigh*. For those who do not know what that is....it's basically a "probe" type device that is err.....uhmmmm inserted into the vagina. So imagine holding what is now half a gallon of pee with said probe in vagina moving around pressing on my bladder. I have never held pee this hard in my life.
So the obgyn calls with my u/s results and says I have several follicular cysts bursting everywhere. Fluid in my pelvic cavity and that it's a good sign that I am ovulating. Oh wonderful. The next month on clomid I experienced the same pains BUT they were even worse than last month and I was walking hunched over. I went back to the obgyn and he said "well you have cysts bursting everywhere and I am just missing something so I want to refer you to a specialist in Gainesville".
So off to the specialist we go. We sit down with the doctor who tells me that he can't find the lab results saying my progesterone level was low. I show it to him to which he replies "13.7??? that is not low progesterone, who told you it was low?" MY OBGYN DID, WHO DO YOU THINK!??! He then explained that my level was NORMAL and that all the pelvic pain from the previous 2 months of clomid use was most likely caused by ovarian hyperstimulation. (I matured too many eggs at once) His advice was to try for another 5 months. If we wanted to do some very preliminary testing such as genetic or hormonal that we could but he felt we should wait another 5 months. I agreed and besides my hormone levels were fine and genetic testing...sheesh I don't have any genetic problems, I didnt even think twice about it.
I had a few other procedures with my NEW obgyn and even had a laparoscopy that was normal. Finally I was starting to think that all my worrying and wondering was for nothing. I was NORMAL, I needed to stop stressing and I would get pregnant.

Finally I did.

After 15 months of trying we found out on Allen's birthday I was pregnant. HOW EXCITED AND BLESSED I FELT!

Fast forward through a very normal happy pregnancy and very normal ultrasounds.

I had Makily and the MOMENT I saw her I KNEW something was wrong with her. I knew it was bad....I just didnt know what. They diagnosed her with trisomy 22 when she was 6 days old. They werent sure if it involved another chromosome but they said it may involve 11. I asked how this happened and it was then that it hit me....I knew. This was what was wrong with me all this time. The thing I had brushed aside and never gave much thought too....genetics. The doctor told me it could be a fluke and just one of those "things that happen". OR that Allen or myself could be "carriers". He explained that if one of us was a carrier it is possibly the reason why it took me so long to get pregnant. Most trisomy 11 or 22 babies are miscarried early on before you even know you are pregnant.
My heart was sinking fast. Taking in that Makily would be severely handicapped in EVERY WAY, being told they werent sure of her life expectency and then BAM......now it may be something you passed down to her......you did this to her. It was too much for me to take and I was so angry. I hated the world.

They took our blood to test Allen and I the same day. I got into a fight with the lady at the hospital lab because she was a raging B*tch and was very rude to me, she was confused of what test was being ordered and instead of calling upstairs to the doctor...she took it out on me and talked to me like I was a 5 year old.....I had enough that day. I told her if she had any compassion or had any brains she would know that the testing we were having was LIFE ALTERING and that I had a baby in the NICU and I didnt need her crap!! I ended up telling her she WAS NOT touching me or drawing my blood and then breaking down into hysterical tears. We got the blood drawn by a nice man that was there. The lady did get in trouble I don't know what kind but I know she was reported.

A week later I was walking into the NICU to see Makily. She was having her g tube surgery that day. She was 3 weeks old. I was at the "scrub station" and I saw the geneticist walk in. He came up to me and said "Caldwell right?" I nervously said yes and he said "oh well I got your bloodwork back". My heart is pounding now....what is he going to say, surely if it's bad news he wouldnt tell me here in the hall by the scrub station. Just say it.....SAY IT! He said "you are a carrier...if any of your family members are of children bearing age they should be tested too". With that he walked away.
So now I am standing there realizing that all of Makily's problems were genetically inherited and linked to a crappy gene I gave to her. Knowing that if Allen and I have any more baby's that they may be just as sick or sicker than Makily. Even worse they may die soon after birth or be still born. I slowly walked to Makily's crib, I picked her up being careful not to pull any of the tubes and wires attached to her. I sat down in the rocking chair with her, held her tight and cried my eyes out. In between sobs I told her how sorry I was that I did this to her. That I would do everything in my power to make it up to her.....to make her life the absolute best it could be. I was so damn sorry.
There were days upon days that I hated myself. I hated the world, I hated normal people. Happy people made me sick. People with healthy baby's made me angry. Pregnant women made my skin crawl. I would sit on the shower floor crying and screaming at God. Why would he do this to me? What kind of God would play such an awful cruel joke. I had begged him so long for a baby and so he sends me a sick one....then makes it my fault that's she's sick to top it all off. What had I done so wrong? This was the darkest time of my life. I had suicidal thoughts, horrible thoughts that scared me. I wished I could run away and live on the beach by myself. Maybe if I ran far enough away from my problems they would vanish. I imagned myself driving the car off of a bridge. Life no longer made ANY sense to me and I didnt sign up for this. I now had a handicapped child AND could not have any more children. Well I guess I could but taking that chance make me sick. I just couldnt be faced with the decisions that I would be faced with or deal with that. I remember I couldnt even watch TV without being sickened by the meanless shows and stupidity. None of it mattered or made sense to me anymore.

They say that time heals all wounds. I tend to agree, but some wounds leave bigger and deeper scars then others. My balanced 11,22 translocation is my "big scar". I will never truly be over the fact that I have this "weird thing" that most doctors don't understand. My heart will ALWAYS long to carry another baby in my tummy feeling it kick and grow, knowing that my body formed that child and protected it from all harm. I will never be able to get pregnant naturally without being a total basketcase fearing that my baby may have to go through all of the things Makily has gone through....or that it may die.....or worse that I may be faced with the decision of if that baby would be better off in heaven than here with me. I pray that one day God WILL allow me to have another child. A brother or a sister for Makily that will adore her and that Allen and I can love as we love Makily. That is my dream, we will see what the future holds.


Only God knows.

I guess I'll start at the beginning...

I figure in order to start off this blog I would need to explain our story up until now. I have been wanting to do this for a while but time and emotions usually got in the way. The story really starts about 2 years before Makily was born really. I won't go into too much detail there though but I will touch on the important things. Basically my husband Allen and I started trying for a baby in May of 2002. I am one of those neurotic people...you know the kind...when they get their minds set on doing something important they are determined to succeed. Conceiving a baby took over my life. After we had tried for 6 months we had some preliminary testing to see if anything was wrong....I was told I had a hormonal issue and was put on a mild fertility drug called Clomid. This drug didnt work out for me and caused more problems than it helped. I was referred to a specialist who reviewed my labs and said that I had NO hormonal issue....keep trying, that if I wanted to do genetic testing or a few other minor tests at that point I could BUT his advice was to keep trying for another 6 months. I switched OBGYN's (since the first one had misdiagnosed me with hormonal issues that I DIDNT have) and had some x-rays that also came back fine. The end of June 2003 I had a laparoscopy that revealed I had a tiny adhesion on my left ovary, which was repaired....other than that....I was "normal"....in fact the words the doctor used was "you have pristine reproductive organs". Wow Pristine I thought...that's REALLY good! We again were urged to "keep trying". On July 25, 2003....before I had even missed my period a blood test confirmed that PRAISE THE LORD I was pregnant. I think it is important to point out the fact that this day was ALSO Allen's birthday. It was a sign from God telling me to be faithful and that his timing is always right. I had a normal pregnancy....well I did walk on eggshells...after being told I had a fertility issues, trying as long as we had, being on fertility drugs for a short time....I was paranoid I would loose this blessing baby that I was carrying. No caffiene, no excersize(that didnt bother me much ;-), took my vitamins and had been taking folic acid for 2 years at that point! I walked the line....I was determined that if anything happened I would have no reason to put the blame on myself. I remember distinctly when I went to my first OB visit. They give you a ton of paper work to fill out. When I came to the question if I wanted the triple screen (genetic testing) I couldnt answer it. I stared at it for a long time and finally when I realized I was wasting time I went to the next question. I never went back to that question. Back then I remember thinking in my naive mind that even if something was wrong with my baby I would not terminate....I still believe that but I think that knowing ahead of time is VERY important. My pregnancy was pretty good, I gained the 30 lbs, had the puffy feet, waddled and glowed. I was over the top excited....especially when my ultrasound revealed I was having a girl. I had dreamed of a little girl that looked just like me....a head full at jet black hair and big blue eyes. Everywhere I went people would stop me and say how much she looked just like her mamma and how beautiful she was. This was a dream I carried really all my life. It was finally happening. I told Allen several times during my pregnancy that things were too perfect and I was waiting for an anvil to drop on my head. My life was going just as I had planned and I couldnt have been happier. I was about 28 weeks along when I asked the midwife (I had to see her at that particular visit) when I was supposed to have my triple screen. No one had verbally asked me and remember I never checked yes or no on my paper work. She asked if my doctor had offered it and I told her no. She then said that I was too far along to have it done at that point and usually they didnt push that test much and it wasnt really usefull unless you planned on terminating according to the results. We didnt so my mind was at ease at that point. 8 weeks later I went in for my 36 week appt, I was seeing the midwife again this visit. She felt my belly to check Makily's position and noticed I had a huge lump under my right boob. I told her I was convinced that it was Makily's head and she was breech. She wasnt sure and so she sent me for an ultrasound. Before we left I asked her about the baby turning at this point in my pregnancy, I did not want a c-section. I had dreamed of my labor and delivery for a long time and I was determined I would have the dream birth I had imagined. I wanted Makily placed on my tummy right after so I could watch her breathe her first few breaths, I wanted to breastfeed right away. She said it was still possible Makily could turn and to see what the ultrasound revealed. On the way to the radiologist I remembering saying this to Allen "I am so excited we get to see her again but what if they see something wrong?" He laughed at me and said that everything was fine and to stop worrying. When they did the ultrasound they saw Makily WAS head down thank God and that the lump was her knees. She was measuring about 5 lbs then. I was concerned, I felt that she was to little, but they said the last 4 weeks she would gain a half a pound a week and not to worry. I felt a bit uneasy but tried to push it into the back of my mind. I had no idea that in just a few short weeks my "bubble" was going to be burst and I would be forced to adjust to a new life.