Tuesday, March 24, 2009

another day...

Sometimes it is hard to know what to post. We are into our second week with Janneke's hospital stay, and yet we feel ages away from the time before her birth. We wrestle with our emotions - sadness, fear, joy... Our journey that began with Rachel almost three years ago seems to be repeating itself.

We have received a lot of emails, comments, and phonecalls in the last 10 days. We are so thankful for your prayers and support; it is amazing and overwhelming to be carried by saints from all over this globe. Some of you are new friends, and so we wanted to include a bit of background in this post regarding our family's story.

We have four daughters - Emily (7), Sophia (5), Rachel (almost 3) and Janneke... Our family's story took a surprising turn three years ago when doctors told us that Rachel would be born with a number of concerns. These concerns became hurdles for Rachel after birth- breathing, eating, and her growth and development. Today, Rachel is almost three. She is a joy to our family with her contagious smile, but she has limited mobility and is tube-fed (nothing by mouth). This year, she will be getting a portacath (to help with bloodwork and IV access when she needs it) and several other investigative tests. She has wonderful nurses who care for her in our home, and we are blessed with wonderful people who have been trained to care for her outside the nurses' shifts. Rachel's needs are attended to by staff at McMaster Children's Hospital and the Niagara Peninsula Children's Centre. Because she is unique, she also followed by genetics at Sick Kids in Toronto. We had been told previously that her special needs and concerns do not seem genetically inherited, but Janneke's similarities are now bringing that statement into question.

Now we have Janneke in our family - and we love her too. She is not sucking and swallowing very well, so we are feeling sad about this. She will be followed closely by an occupational therapist and ENT (ear, nose, throat) this week to determine the cause for her inability. Her brain activity will also be examined with an MRI to further understand her disposition. She is a quiet little girl, and this is has the docs a bit concerned. It seems that some of her tests indicate "normalness" and other tests show concerns. We are trying to lay all of this in the hands of the Lord, surrendering our daughter to His care.... not hanging on the words of each doctor that visits. We are so thankful for the intelligence and science that can help Janneke, but we know that ultimately the future is in His hands. It is HARD to trust, but we are trying.

Some of you have asked how to help.... We will rely on your prayers and support for a long time. This is not a short story... This is a lifetime of faith, hope, and trust. Lamentations 3:19-23

12 comments:

Courtney and Joel said...

Ralph, Sara and family,
We are with you in prayers. Stay strong.

Mike and Marcella Meinema said...

I am so glad you have started a blog. We learned quickly that it is a wonderful way for support- (you were especially supportive on ours) and it lets people know your story and your needs. I hope you feel the same love and support. We are a community of believers and when some of us are weak and on our knees begging, which you must feel right now, the rest of the community lifts us up. I pray that we may lift you up now and in the future. Mike and I pray for you all of the time. There are many moments during the day where you are on my mind and the words from my mouth form short prayers. The staff at HDCH prayed for you in earnest today. There are many who love you guys and your family. Your brother and sister in Christ,
Mike and Marce Meinema

Jess said...

We keep praying. We love you, Janneke, but not as much as Jesus does!
Aunt Jess & Uncle Tim, Caleb, Nella, and Aleah

Williams Family Blog said...

Ralph and Sara,

Glad you have started a blog. The Williams family says a big hello all the way from Australia. We love you and we will continue to pray.

cousin Karen & Cliff
Keegan, Calia and Kira

Rhea said...

I remember Olivia's doctors telling us to love her because she would not make it to her first birthday. She is now three and a bit and is our miracle. Miracles happen Ralph and Sara - Ken and I know that way too well. Anna, our sixth had viral encephalitis last April and she is not meeting her developmental milestones. We understand the sadness, joys and struggles too. You are constantly in our prayers. Unfortunately our kids go through similar situations with our youngest girls.

Anonymous said...

continuing to lift you up in prayer

Jacquie said...

Ralph and Sara and family,
Kevin's parents originally passed along your blog as soon as they received the news of Janneke's birth - both the accompanying joy and the deep shock and concern. Since then, we've heard and spoken to so many who know you well and share your journey by way of prayer and loving support. We join that family of faith as well, holding you before God for His gracious peace and healing to flow. May you sense His care for you and all your precious daughters...

Jacquie and Kevin DeRaaf

Cheryl said...

I am a friend of Cliff and Karen.
We have a special needs daughter who has had many challenges as well. She is now 19.
My heart goes out to during this challenging time. I understand your grieving hearts and will pray for you both, and your other children.
May God's grace keep you and help you in this time of uncertainty.
I also pray strength for you, and provision for you financially, as this is a stretch on finances as well.

With many prayers.

Pamela said...

Sara,

I was just sent to your blog by another friend. I am so sorry that you are going through another trial in your life. I will put you and your family on my daily prayer list. I pray God will give you strength.

Pamela Brocklehurst (Van Wingerden)

Anonymous said...

congrates on janneke she is a blessing to everyone!!!
i continue to keep you in my prayers.
may your family be blessed!
Melanie B.

Rebekah said...

Congradulations guys! She is a beautiful baby! Hope she can feed on her own!

We are praying for you!!

Rebekah VandenBurg

Anonymous said...

hi mr and mrs pot
we hope yuo are doing better
we will always be praying for you
MISS YOU