Monday, January 30, 2012

Preparations....

are necessary for any major event that happens in life. Buying a house, going off to college, proposing to your girlfriend, planning a wedding, having a baby, or moving to another state. All of these things require some sort of preparation.  Being prepared in most situations can help alleviate some stress that comes with waiting until the event is too close.  You run the risk of not being prepared and having things not go the way that you want them to.

Mylah is no different. Before her Trisomy 18 diagnosis I started to prepare myself for this new addition. I had a checklist of all the things I needed to try & accomplish before her arrival and to prepare for her birth. Things like decluttering the house, updating the bathroom, paying off the rest of my credit cards, and of course saving some extra money.  With the exception of updating our bathroom, I've pretty much accomplished everything.

Last week the Walk With Me team came for what was our last visit before Mylah's arrival. We discussed the baby shower, my 3d ultrasounds, our birth plan and lastly our wishes & arrangements in the event that Mylah passed away.  Now honestly, I hadn't really thought of any "arrangements" because that hadn't been my focus in a long time.  However, it is something that needed to be discussed.

Juwan & I hadn't sat down to talk about the "what if" and what we would do. On Friday, I took the initiative to make an appointment with a funeral home. Just to see what the prices were for funeral services.  Juwan and I did decided that if GOD calls Mylah home that she would be cremated & brought home with us.  The decision about a memorial/funeral service can wait.  When I contacted the funeral home I must admit I was a little nervous about what would happen. I was really hoping that I could do the consult over the phone because lets face it, who wants to go to a funeral home?  When I called to make the appointment the secretary asked who passed away. I began to explain my reason for calling and immediately she expressed that although they would assist me with whatever I needed, she would be praying that I would not be needing their services at all.  She really calmed my nerves. We were scheduled to meet with someone at 3:00 that afternoon.

Initially, I was going to go to the visit myself. I didn't want to put Juwan through any additional stress, but I was afraid that he would be upset & I didn't want him to think I wasn't including him in decisions that could possibly involve our child. 
We arrived at the funeral home & I could feel the anxiety building up the closer I got to the door. When I stepped in the door, to my surprise a sense of calm came over me. It probably was the fact that the foyer was blocked off from the rest of the establishment and all that was visible was a soothing waterfall.  I didn't hear Mahalia Jackson's "Trouble of The World"  playing or the sound of a old church organ, just the trickle of the fountain. The foyer actually resembled a upscale hotel lobby.  We stepped inside and were greeted graciously by one of the employees who then escorted us to the lower level to meet with a funeral director.

This is a serious thing, but I can usually find a little humor in most situations. When the young man was escorting Juwan and myself to the lower level I remember thinking "Now wait a minute, where is he taking us? The basement? Is this where the bodies are? " I had to laugh at myself.

We met with the funeral director who was very pleasant, understanding and also expressed that she hoped the information she gave us wouldn't be needed. She continuously expressed her faith in GOD and miracles and that she'd be praying our baby would defy all the odds she had had against her because GOD had the final say.  She took us to the room where they displayed the different caskets and showed us 3 baby caskets and gave us the prices. I just kept thinking to myself "it takes a special kind of person to do this job"  She explained to us all the options that we had for cremation and memorials and just like that the meeting was over. She hugged Juwan and myself and wished us a good day, I'm sure in her profession "Hope to see you soon" isn't the proper way to say goodbye to her visitors.

Once we stepped outside I told Juwan it was okay to breathe. It was done and over with and it's out of the way. It seemed like he had been holding his breath the entire time.
I think the thing that kept me calm was that I said to myself, I'm here for just in case, most people come here because they HAVE to.

Although I know it's a possibility that GOD will call Mylah to be with him, just because I've visited a funeral home doesn't mean I'm giving up or speaking death to my child.  Juwan and I need to make preparations while we are in a calm, clear thinking state.  We also need to know how much we would be looking to spend in the event we need the services of the funeral home.

Most people don't make the necessary preparations and when they pass it leaves family members to scramble about trying to make preparations and & come up with the money needed to memorialize them.  Death itself is stressful enough on loved ones, so why not get things in place in case it's needed so that situation doesn't add more stress to those who are left to deal with it.  

Now that I have that out of the way.  I know what to expect when I visit 2 more funeral homes. YES I said two more, do you buy the first car you see? No, you shop around and funeral expenses are no different.

While I'm trying to get that business in order we are still preparing for Mylah's birth and her arrival to be with us at home because I'm ready for my miracle.

Sunday, January 15, 2012

60 days....

to go. Today is January 15, 2012 and I'm exactly 60 days away from my due date of March 15, 2012.  Time is drawing near and my nerves are getting worse. 

My mother, Juwan & myself went to tour the 2 hospitals that I'm considering for delivery. "Enjoying my pregnancy" is becoming very hard these days. Not necessarily the enjoyment because I enjoy everyday that I carry Mylah inside my womb. The hard part is not knowing whats to come & the continuous roller coaster of emotions. 

I went for the 2nd attempt at the 3D Ultrasound this past Wednesday.  Since the first visit, I made a promise to myself to go to this appointment with no expectations. I didn't allow myself to become overly excited at the prospect of being able to view Mylah's face.  After the last try I did some research and it seemed that the #1 suggestion to help babies move was to drink some orange juice. OJ is my favorite morning beverage after apple juice.  However during my pregnancy, orange juice has become the culprit behind my acid reflux & heartburn so I only drink it if I must.  I purchased the heartburn creator before I left work and guzzled while making my way to the appointment hoping that the sugar would make Mylah a little dancing machine. 

While in the parking lot of the doctors office I prayed to GOD and asked if he would allow me at least a peek at my daughter.  During the ultrasound once again Mylah's hands covered her face. DRAMATIC is all I kept saying (she gets that from her father).  This time the tech advised that Mylah appeared to be breeched. Her head was against my navel & her bottom at my cervix & her legs folded up towards her face.  "You've got to be kidding me" is all I could think in my head.  The tech referenced the shots of Mylah from the week before and advised that she had indeed flipped because she wasn't breeched during my last visit.   I wanted to cry. The last thing I wanted to think about was a possible c-section.

When I was in high school I was in a car accident which resulted in some internal bleeding and the removal of my spleen.  I can clearly remember during my follow up visit my mother inquiring about my ability to have children after my surgery and the doctor advised her that I would have no problems. A few summers ago I attempted to have the Lap Band procedure. I went through the whole process; work up, doctors consultations, psych evaluation and was approved. Surgery was scheduled, I was prepped, went under and when I came to was advised that because of the amount of scar tissue in my abdomen the doctor could not perform the surgery as I had hoped.  He said that my accident has caused so much internal bleeding that there was no way for him to do the surgery because it was elective.   Because of this very reason my ob does not want me to have to have a c-section because it puts me at risk for complications. 

When the tech said that Mylah was breeched nothing but worry filled my head. What if she doesn't flip?  What if I have to have a c-section? What if because of the scar tissue my uterus is damaged, and I can't have anymore children?  What if the c-section takes too long & Mylah passes? 

My mind has been running a mile a minute since I got the news.  I never knew that pregnancy could be so stressful.  It's so easy for people to say "Oh she has time to turn around" but they obviously are not walking the journey I am.  You try to stay positive and stay uplifted but it's very hard when you must take into account the reality of the situation. 

While on the 1st maternity ward tour, I had a breakdown. I felt so out of place.  I felt like I didn't belong to be among the other mothers who seemed so excited & concerned about baby monitors, delivery room appearance, nursery procedures, hearing screenings, blood cord donation etc. The only thing I could focus on was what's gonna happen to my baby? How are they going to approach the delivery of my child?  Do they have the appropriate staff on hand to handle my Trisomy 18 baby? The tour made a stop at the "transition nursery"; it's where the newborns go for clean up after delivery while the mother bathes.  The nurse held up a baby that had just been born within the last few hours and he was crying. He was so beautiful!  Tears filled my eyes and the tour nurse glanced at me as they trickled down my cheek. I held my head down. In that joyous moment for that mother and the mothers who gazed at this newborn baby I felt nothing but pain and sorrow.  I quickly dried my eyes so that I wouldn't catch the attention of the other mothers on the tour.  Afterwards, I asked the tour nurse how they handled Trisomy 18 deliveries. She remembered me from the phone call I made last month when I inquired about the tour.  Her answer was something I didn't want to hear; Bereavement services, 3 times a year memorials that we would be included in, and a great grief/loss program.  So basically they are prepared for the death of my child.

After the tour was over all I could do was cry. Why did I do this to myself? Why did I come to this tour? As I was leaving to go to my car a lady rubbed my back and said "God Bless You".  I contemplated going on the tour of the 2nd hospital. Only because I really did not want to be in the same situation I was just in. But I needed to see the facility to know where I would probably feel most comfortable delivering Mylah.  I needed to find a place that would do what we wanted and provide a experience that was as comforting as it could be given the circumstances.  I wanted a place that didn't just speak death.  The 2nd hospital was a little more inviting and had a better "feel". After the tour when I asked about Trisomy 18 deliveries I was given the phone number to the NICU and encouraged to schedule a tour so that I could speak with someone about what to expect.  Whats so funny is this facility is the same facility where we learned of Mylah's condition.  After the meeting with the staff to confirm her diagnosis I was sure that I would not consider delivering my child there but it appears that this is probably the best place for us.


Time is winding down and we are approaching the day when we will meet our daughter.  I'm sure these next 8 weeks will be full of preparation & anticipation.  I'm just looking forward to the day when I can see her face.
Mylah Roberta Perkins

Monday, January 9, 2012

Shower of Love!

This past Saturday Juwan & I were surrounded by 80 family & friends as we celebrated LIFE. The Life of our daughter Mylah! The shower was a huge success & turned out perfect! I never knew something could go so smoothly!

Most of my close friends & family know that I've been planning my baby shower for years! I love to plan parties and I'm very specific when it comes to details and execution. Everything from the decor, the food, & cake was phenomenal! My favorite part was the prayer circle & when I handed out roses to all the people who have been so supportive to me over the past couple months. 

The shower actually capped off a rough week for me. I had been anticipating the 3d ultrasound which I had scheduled months in advance. My stomach was in knots all day from the anticipation. When I got down on my knees at work to pray before I left for my appt,  I allowed the devil to show me images of a lifeless baby foot.  When we arrived at the appointment, the ultrasound tech advised us that she couldn't see Mylah's face because she was covered by her hands & her feet. She was balled up so the ultrasound was unsuccessful but she said that we could try again this week. I tried to hold back the tears, but during the ultrasound she shook my stomach so hard trying to get Mylah to move but she woudn't budge and it was one more disappointment. I was kind of mad at myself because I had allowed myself to get excited but once again another appointment didn't go as planned.  I cried all night and went to work the next day just emotionally drained.

While I was at work I had a break down because I just couldn't understand why nothing was going in our favor. This struggle reminded me that there is a possibility that I may not get to meet my daughter alive & that devastated me. I began to wonder what I may have done in my past that has allowed my daughter to have to go thru this. I was just in so much pain.  A few friends at work gathered around me & cried with me & prayed for me. I cried for about an hour but slowly began to get it together.

That same day, I had some negativity said about my child & the shower that really upset me but soon after I realized that this wouldn't be a fight if the devil wasn't trying to stop me from fighting for my daughter. The person who said these negative things has a reputation for being a negative person. I've actually supported this person through her own personal tragedy but sometimes when people are miserable they want others to be miserable with them and they get satisfaction from seeing others struggle or go through a bad/hard time.  Considering the source of this negativity it did nothing but make me stronger & ready for round 2 and I will pray that GOD removes the negative spirit from this person.

So the shower came at the perfect time.  Months ago when I put the deposit on the hall I worried that weather would be a big factor in the number of people that showed up. Well weather wasn't a issue at all, it was unseasonably warm for a January in Michigan.  I then worried about people just not showing up because it wasn't important to them & given the circumstances maybe they didn't understand why we were having a shower, but boy was I wrong. The hall was full of our family & friends. People came from out of town just to attend our celebration for Mylah. The whole night I was in awe of the number of people that showed up to support us. The night was more than I ever expected, the only thing I regret was not taking more pictures with people. 

I'm so thankful for the people that GOD has placed in my life. Saturday really showed me how much Juwan, Mylah & I are loved & we love every person who was in attendance.

Sunday, January 1, 2012

Have You Ever Wondered...

If you & others who may be in similar situations have the same thoughts?  I went to dinner with a friend this week who has been going through a journey of her own and it was so funny to hear that we both had the same feelings when it came to seeing women with kids or women who were pregnant.

There are times(usually on those bad days) when I find myself asking "why me?" Why after almost 2 years of trying to get pregnant, is my baby the one diagnosed with Trisomy 18? It seems like people all around me are getting pregnant & having babies that are healthy but mine is the one doctors say won't make it to her 1st birthday.  Everyday I watch the news and it seems like there are more & more parents killing their children & it hurts so bad because I'm reminded that there are people being blessed with children who don't deserve the blessing they've received.

I actually feel that like marriage, people get so caught up in the "idea" & the hoopla of being pregnant that they fail to realize that they will soon bring a human being into this world that must be cared for.  Raising a child takes more than just love and I feel that some think having a baby is a game. Especially when it comes so easy to some.

My friend & I were discussing at dinner how trials & tragedies can make you have bitter feelings towards others & in those times you can begin to pass judgement on other people & their situations.

Since Mylah's diagnosis there have been many times that I have turned up my nose when I've seen a young pregnant girl; because she couldn't possibly realize how blessed she is; she probably is going to be on welfare; I doubt she has a job; She's probably living with her parents & can't support that baby, but I bet she'll have a perfectly healthy baby.

I would be lying if I said I've only done this once but then realized What God Has For Me, Is For Me & that includes trials & tribulations.

During this discussion with my friend who has experienced a loss , I learned that she had done the same thing as me, passed judgement. But we both realized that you can't judge others based on what you see. I have a quote that I love " You never know what story the pages of one's life may tell" & this is so true.  My friend & I have both realized that you can't allow your sorrows & frustrations to turn you into a bitter person. Being bitter doesn't help your situation because it allows you to sit in this "funk" as we say & you may miss the blessing that GOD has for you because you are too focused on others & the "Why Me".

Now, when I see someone who is pregnant I say a quick prayer in passing & I ask GOD to bless their baby, bless their life, bless their finances, and open up their eyes to realize the blessing he has given them in the child that they are carrying. I don't carry bitter feelings, I don't say "why me". I simple say Amen & keep on walking with my head high and I feel better for it.