Tuesday, June 25, 2013

Walk With Me.....

When we got the diagnosis of Trisomy 18 in October 2011, it was the most life altering experience I'd ever been faced with. In our meeting with the doctors, geneticist, & social worker we were never given any HOPE that Mylah would survive.

We left the meeting with a listing of funeral homes & cemeteries who would arrange services for free. I was told to expect a call from a local hospice resource that would help us "plan" for Mylahs death.  I remember not wanting the help because I just knew their job would be to drill death into my head & I wanted no part of speaking death unto the life that lived inside me. 

Walk With Me proved to be the opposite of what I expected it would be. The team were the 1st medical professionals who told us to celebrate Mylah's LIFE no matter how long or short it would be. They gave me so much encouragement. They believed in Mylah's abilities from the beginning. They stressed to me that Trisomy 18 was different for every child. Yes, they wanted her to be as comfortable as possible but they encouraged us to continue to fight for our daughter, & they never made us feel guilty for wanting unbiased care for our daughter.

When we saw that one hospital shut the door on Mylahs options for assistance, they told us not to continue wasting time & to proceed to a place where Mylah might be able to get the care she needed. 

Our Walk With ME team has done just that...they've traveled this journey with us. Sometimes walking behind us, many times walking right by our sides but they've always been there walking....

We've cried together, prayed together & rejoiced together. They have shared in our sad moments, our times of despair & uncertainty, our days filled with worry, & the days filled with joy. 

The team has become our extended family & Mylah has gained 4 aunts along the way. 

Walk With ME has proved to be a positive, supportive, caring resource that has played a pivotal role in the LIFE of our daughter. 

On October 18, 2013 I am honored to serve as one of the Honorary Co-Chairs for their annual charity event which helps raise money for this wonderful program. 

Sharing our story with others is something that I'm looking forward to. 

In the coming months I will be posting information on how you may be able to help us raise money for this wonderful program because I know other families would benefit from their services. 

Sunday, June 16, 2013

Happy Father's Day!!!

Today we honor the men in our lives. The Fathers, Grandfathers, Uncles, Brothers, Coaches, Pastors, all the men who have taken on the role and helped influence and raise a child.

We HONOR the men who have created children and have both gladly & readily accepted responsibility for their blessings.

We HONOR the men who for whatever have no biological children of their own, but have accepted the role of Father in the life of a child who has become theirs.

We HONOR the men who have bravely stood up in the life of a child & passed down wisdom that will help that child make it in this world.

On THIS day, we simply say …….
                                                              THANK YOU!

I have been privileged to never have a day when I was fatherless. My father is 1st Love, My 1st HERO, My Teacher, My Friend, My Protector, My Confidante, My Provider, My EVERYTHING.

My Father had the influence of his Grandfather to help shape his life. My Father could have easily walked away from his responsibilities as a dad, but he didn't. Instead he began to shape the life that I would live.
I am a 100% Daddy's Girl. No matter how hold I get, I will still feel 5 years old when I'm with my him. I thank my dad for all he's done for me & my sisters. For all his mistakes, accomplishments, decisions, hard work, sacrifices.. Everything.

My dad is the best grandfather than Mylah could have. He's loving & caring and yes, he's wrapped around her finger.

I would never be able to thank my father enough for all he's done for me.

Juwan didn't have his father growing up. He didn't know him, He never saw him, didn't even know his name until a few years ago. He too, had a grandfather that helped shape him into the man he is today.

Sometimes when men lack the connection with their birth fathers there is pain, heartache, suffering, resentment, and anger. These feelings can manifest in a number of ways and for some men it can change the entire dynamic of their lives. Most times it's not for the better. Many people repeat what they are taught, & if a boy has experienced disappointment since the womb and he lacks a male figure in his life to help guide and show him how a real man should be, most times it will result in another fatherless child.

My husband and father could have easily been eaten up by the streets. At some point in their life they decided not to be like their fathers.

Being a mother to a child with special needs isn't easy so I know being a father to one isn't as well. It's not an easy situation to deal with or adjust to.

I thank my husband for staying with me. Us. He could have easily taken the easy way out.

I thank him for not being like the man who helped create him.
I admire him for the father that he is.
I know he probably thinks about the things that he may never get to do, but it doesn't stop him from being the best father to Mylah that he can be.

I know that she's a Daddy's Girl just like her mother because I see the joy in her face when he is with her. I hear the words (that she thinks she's pronouncing) when he cradles her in his arms.  I see the love in her big eyes when she stares up at him;  no doctor can convince me that my daughter doesn't know her DADDY.

The love that they share is a unique one. It's built on a foundation of strength & courage.

I know that they are made for each other.

So to my own DAD & my husband, the father of my child I say…….. I love you & Thank you! & I know if Mylah could say it she would say the same thing too!

The link below is a dedication to my husband, Mylah's Father Juwan.

I believe in capturing life's moments in photos. It's the one opportunity you have to freeze time to remember later. I know that he doesn't have any pictures of his own father, so I want to make sure he has an abundance of photographic memories of our daughter.

No matter what the future may hold, I know that you will AlWAYS be her Father and I know she will ALWAYS be Your JOY.

Happy 2nd Father's Day

Wednesday, June 5, 2013

Update & Apologies!

I am SO very sorry for not posting in such a long time.

I actually have a couple "draft" posts that I have lingering which obviously never got finished.

There has been so much going on in my life that I have failed to make the time to do what I loved doing and that is update my blog.  Days pass and I tell myself that I need to blog, but when I grab my computer I don't click the link to update. 

My last post was about the death of 2 other Trisomy babies and honestly I was emotionally and mentally drained. This journey as I've always stated isn't easy and it can be a toll on a person.  You will go through a million emotions from one minute to the next. The hours in a day seem to fly by with each minute, second that passes a new emotion.

I had been having a rough time emotionally because I'd been feeling very guilty about some of the decisions I made with my life; past and present.

In talking to different people I have come to realize that the sense of guilt isn't just a Trisomy mother thing, it's a universal feeling that many mothers get from time to time.

I feel like I'm in a race against time to accomplish some things that I've set as goals for myself and I never want my daughter to feel like I don't care about her. Honestly, the things I'm trying to do are for her. I want to make sure she has the best life I am capable of giving her; so I sacrifice at the moment. Sometimes though in those "moments" feelings of guilt & failure sneak up on me, so I wasn't really dedicated to blogging like I was previously.

I realize that there are those who don't use social media so this blog is the space where you were able to keep up with Mylah's progress. Please accept my sincerest apologies. I appreciate all the support that I've received through the blog and I will commit to updating at least once a week.

This blog served as my open diary and it did help in getting those emotions out in the open which helped lift the weight I felt I carried at times.

What have we been up to?
A lot!

Mylah is talking so much!! Especially at night. She waits until about 9:30 then she just starts rattling on & on.  It's one of the sweetest sounds I have ever heard.

She's 14 months now! almost 14 lbs and 26 inches long. She's all legs.

Her last cardiology appointment went really well. She is off her Sildenafil and her pulmonary hypertension is not an issue. We had started to wean her months ago. The cardiology team doesn't want to see her for 6 months. Which is great! One medication down 5 to go!

Wednesday we went to our vent clinic appointment. Mylah was previously getting 36 breaths per minute (bpm) from the machine which was weaned down to 20 bpm in March. Her respiratory therapist has since weaned her down to 16 bpm and she is allowed to be totally free from the machine for 1-2 hours a day twice a day. If she tolerates this well, we've been advised to increase each week. This was HUGE news for us! I was honestly happy with her progress and went to the appointment not expecting any changes as drastic as what we received. She seems to be adjusting to the changes quite well.

Mylah's look is also changing. She's starting to look more like a toddler than a baby. It's bittersweet.
Often times you hear mothers say "oh I wish they could stay this little forever". I've actually had a piece of that "forever". Although she's approaching 15 months, she's the size of a baby that's about 5 months.  I grown accustomed to her small size, to see her changing into this "little girl" makes me sad, but its happiness too.  She's growing; still slowly, but that's all that matters.

We've figured out that Mylah isn't really a people person and doesn't like to be out for long periods of time. Her Diva-ness starts to show after about 2 hours out. She just will have to get used to being on the go because that's what her summer will be like.  We missed most of the summer last year in the hospital so we will be making up this year!

Mylah is doing better than ever. She's growing, maturing, developing her own attitude, and yes still defying odds every day. 

Mylah before shopping…

Mylah AFTER shopping.. LOL

What do you think? 

& she did just that…..

I guess we did huh Mylah? 

Definitely GOD's Little Blessing all for us!

Such a BIG Girl! 

Mother's Day 2013! 

Sleeping Beauty

EKG time… 

She most certainly is! 

Mommy's little angel

I LOVE some of her facial expressions!


Those hands are ALWAYS busy… 

So excited to head to her 8:30 am vent clinc appointment… Can't you tell? 

Where's that baby face at???? 

It's time for BED Mylah.. not playing!

Mylah… June 2013 14 months Trisomy 18 SuperKid! 

Thank you for continuing to follow our journey. Thank you for taking a few moments out of your busy day to check up on our daughter.

We love & appreciate you!