Hannah Hope
They all have touched me in one way or another. My sidebar really lists many awesome families that despite challenges and trial still keep going, even when times get harder and harder.
Today I want to talk about The Hughes Family.
I had met Andrea from another board for mom's of kids with reflux and G tubes. Andrea and I bonded over saliva and problems getting a drug called Robinul. I was having a horrible time getting it and she had gone through basically the same problem.
Amazing how spit can bring two people together eh?
Andrea's son Luke has CMS (Congenital Mysathenic Syndrome). He's three years old. He spent months in the NICU and deals with many of the same problems Makily does.
Andrea found out the she and her husband are both carrier for CMS.
She unexpectedly became pregnant.
Due to many issues including the risk of the baby having CMS, her pregnancy was considered high risk and so she was monitored closely. Baby looked great throughout the pregnancy and while they knew she could still have CMS they were optimistic that she would be healthy.
Andrea gave birth to a BEAUTIFUL baby girl last week.
Hannah Hope.
She is gorgeous.
The first pictures of Hannah worried me a bit because I immediately noticed she had oxygen and some other tubes and wires on her.
Well yesterday morning I was shocked to read the update on sweet Hannah.
Hannah thankfully was NOT born with CMS like Luke.
Hannah instead was born with Downs Syndrome.
It took me a moment to take it in as I read Andrea's words.
I sat dumbfounded, shaking my head in disbelief.
How is it that she avoided having CMS but instead was born with a different genetic syndrome?
What are the chances of that happening?
More importantly WHY would God allow this to happen to Andrea?
I felt the familiar anger creeping up in my heart that had plagued me in the weeks.....okay months after Makily was born.
I just don't understand.
I am not meant to either I guess.
I am reminded of this scripture over and over.
Psalm 139: 13-14 “For YOU created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful I know that full well.”
and also:
John 9: 1-4
And as Jesus passed by, he saw a man which was blind from his birth; and his disciples asked him, saying Master, who sinned this man or his parents that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.
I realize that God has a plan for Luke and Hannah's lives just as he has a plan for Makily's. I know that I have learned so many things from Makily and all these other families. I have witnessed miracles and I have grown as a person BECAUSE of Makily. That does not make the pain of her limitations less for me. There is an ache in my soul that will never go away for what Makily will never be...what she will never experience and that is incredibly hard to live with.
Today I am sad for Andrea that she has not only had to deal with many trials and pains with her Luke but that now she is given A NEW set of trials to manage.
That being said she will now be able to see all the wonderful things that Hannah will do. She will see the millions of lives she will touch BECAUSE of the uniqueness of her family's life. Her faith will minister to others and give other's hope when they feel there is none. I believed with all my heart that Andrea was called by God before this, NOW I KNOW for a fact that she is an extraordinary woman that God chose for this journey.
Andrea, I am sure you do NOT feel extraordinary right now honey. I am sure you are in a shock that many of us will NEVER experience. Although right now you feel weak I promise you, God is giving you strength you never knew you had. I admire you and your faith. I pray that God will send you comfort and understanding that surpasses our human minds. If anyone deserves that right now it is you honey.
I pray for Hannah's health, for her heart, her lungs, her little body. She is an extra special little girl who picked an extraordinary family to raise her.
She is a blessing sent from God.
I am praying for you all.
Please stop by Andrea's blog and see beautiful Hannah.
She will touch many and already has.
THE HUGHES FAMILY BLOG CLICK ME
7 comments:
You hit the nail on the head. I am in such shock for them. You did a great job with this post. She is a very beautiful baby. I felt the same feelings of anger for them. I was suddenly right back in my own hospital room when I was given a diagnosis. This certainly didn't help with my fears for this baby.
Your words are always so on it..her baby is beatiful. Testing is not always 100%.. bless them and there lil one..I had a million tests with emma and they said she was fine.
Hi Trish,
Thank you for posting this! I wrote them a comment (we are the family who has Lauren, our 4-year old daughter with Down Syndrome).
Little Hannah is absolutely beautiful. I will pray that they get thru this hard, grieving part quickly. It is difficult but raising Lauren has been one of the most amazing journeys for us. She has brought tremendous joy to our lives. I wouldn't change a thing.
:)
I love your blog by the way and keep you guys in my prayers that little J becomes part of your family permanently.
Trish - Please call me asap. Jenni O'Neal
I was in shock too, but Andrea really is an awesome mom, she can totally do it.
Trish,
Wow. You said what I couldn't. I have been thinking of and praying for Andrea and her family all weekend long. I can't stop. Like you, it's as if my breath was taken away when I read about sweet, sweet Hannah's diagnosis.
I know Andrea only through the blog world (Ellie and Luke shared the same therapist in Dallas, go figure!), but as we both know, even cyber "moms of special needs kids" friends are lifelong and true.
And, I think we all share the same fear, whether subsequent kids are bio or adopted: that we will be forced to revise the dream TWICE.
I don't get it either. I have spent some time questioning God this weekend. And if *I'M* confused and sad and angry, then I can only IMAGINE how Andrea feels. I just don't get it.
Andrea, if you end up reading this, know that my silence is only because of not knowing WHAT to say.
Hannah is SO SO SO precious and SO SO SO beautiful. So precious and so beautiful that it makes me get it even less. Why Hannah? Why Andrea? Why TWICE?
You're amazing, Trish. Thanks for posting this.
Thank you for this post about my amazing daughter, Andrea. I haven't been able to check any of the blogs until today and I remembered that Andrea had said that one of her friends had posted about Hannah on their blog. It took me a while to figure out which friend but I found you. I too have been wrestling with the same questions you and other amazing parents with all of these sweet and special children, WHY? I can only wait as each of you to get the answers when our Lord and Savior returns for us. Again Thank you so much for this post, My girl is truly an Extraordinary Person and I am blessed to have her as my daughter. Andrea's Mom, Penny
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