"I will sing of Your Mercy that leads me through Valleys of Sorrow to Rivers of Joy! And though the pain is an ocean tossing us around, around, and around. You have calmed greater waters! Higher mountains have come down! Alleluia!"
[Jars of Clay, The Valley Song]
My heart breaks every time I look at my little man's chest. Knowing the pain he is experiencing, the discomfort, the struggle, the fight and strength required to live! And oh what this daddy would do to take the pain and suffering off my little man and place it on to my weak and weary shoulders! I would do anything to relieve him of this journey...but I am reminded that in order to stand on the mountain of God...you have to walk through the Valley! Our God's redemptive purposes and plan are at work right now - in our life, in Jackson's and in yours as we walk this reality! It may be a road marked with vast Valleys, but there are flooding Rivers of Joy! And our Joy...is in the Hope and Future we have in Christ Jesus - for His rod and staff are our guide, protection and comfort as He walks before us!
You see...the Valley is a place of worship! The Valley is the place of growth! The Valley is a place of insight, wisdom, knowledge, foundation and preparation - as we are refined, molded, shaped and transformed to become more like our Savior! And our responsibility - is to fully embrace the Valley - not to turn and run, but to surrender, persevere and walk by Faith! For it is not in our own understanding that we journey, but in the wisdom and knowledge that is in the Way, Truth and Life! For in his kindness God called you [and me] to share in his eternal glory by means of Christ Jesus. So after [we] have suffered a little while, he will restore, support, and strengthen [us], and he will place [us] on a firm foundation. All power to him forever! Amen. [1 Peter 5: 10-11, NLT]
The Transition...
Wow - you want to talk about transition and change! This last week and a half has been off the chart! Everything - and I mean everything - in our life has been shaken over the last two years. A new role and calling with the Billy Graham Association, 2 moves, a new home, a new community, new phases with Carter and Jordyn, and then add Jackson to the mix! The transition from 2 to 3 kiddos is crazy - but with all the care, attention and energy Jackson requires – the stress has been overwhelming at times! And truly - we are absolutely exhausted! And not just physically! This journey is so emotionally, mentally and spiritually draining - BUT we are resting in His Strength and Peace! In the intensity of this storm He continues to provide opportunities to grab a breath, refocus, and take the next step! We are weary, weak and wounded no doubt...but we continue to embrace this journey by "playing the next play" - one step at a time! I would be lieing if I told you that the last 10 days have not held very difficult scenarios - full of many glancing blows, disappointments and deep sorrows - but our peace is not in our circumstances! Peace comes when we keep our eyes on our Savior and not on this world or the ways of man! We expect the greater reward that awaits us in the Rivers of Joy - and His glorious blessing, signs, wonders, miracles and divine provision witness to the Grace, Mercy and Majesty of our Heavenly Father!
His Grace is sufficient! Sufficient for every moment, every detail, every circumstance and curveball! Truly - we have pleaded with the Lord to take this cup away from us time and time again, but fully know and embrace His call and find great encouragement in the promise that "My grace is sufficient for you, for my power is made perfect in weakness." [2 Corinthians 12:9, NIV] And on this foundation is exactly how we have tackled the transition home (again) – leaning in and relying on His Grace to overcome the circumstances, challenges, obstacles and hurdles many moments present. There have been times of great struggle and pure joy as we learn to "re-parent" with Jackson's condition - but Praise the Lord for His Mercy and Strength!
Our new normal is so intense with Jackson's care/meds/feedings (and that does not include the desires/needs/demands of a 2 year old and 5 yr old!), and our days are now realized in 3 hour increments...for it is every three hours that the reset button is pushed in regards to Jackson's feedings! And it is more like every 2 hours - because it takes an hour to feed the "little bugger" (as Dr. Sherman has so affectionately named him)!
This past Wednesday we had our weekly visit at Children’s Hospital with the surgical team, and Jackson is doing well! The process of his feedings is simpler now without the feeding tube, and he is also on a more manageable med schedule with the 7 medications he is currently taking – which he takes like a champ! Working with/training/teaching Jackson to feed has probably been the most grueling and time consuming task over the last week and a half at home, and the doctors wish he was taking more volume at this point – but they and we were greatly encouraged that he is gaining weight! Praise the Lord!
The team tweaked Jackson’s formula recipe a little to increase his caloric intake Thursday - which has translated to more fussiness and gassiness – but through out the weekend he has been able to tolerate the change more! And amazingly, Jackson has actually increased his volume intake substantially over the last two days!
The leak in his tricuspid valve continues to present itself on the echo - but at this time the doctors are "ok" with its sustained velocity. At this time the plan is to continue maintaining - with the hopes of improvement - the leak through oral meds, but the team will watch it very closely with weekly echos and form a plan of action - if necessary - as we get closer to his second surgery. His Glenn surgery is tentatively scheduled for late February, and we will keep you up to date as we find out more details!
The stress of having a baby that is not allowed to cry (due to the added work it places on his heart and lungs) and – at times – forced to eat 60-90ml every three hours is extremely intense…but the constant reminder from our team of doctors that Norwood babies can turn in a moments notice for the worse, never knowing what to expect with their condition…can be and often is overwhelming. The majority of time Jackson is a very pleasant baby - very alert with quite the personality - but when he gets worked up, it is a true test on mommy and daddy’s patience and endurance to remain calm, focused and poised to console the little man and get his heart rate back to a resting stage. It is very scary when the little man gets fired up, but once again – God gives us the strength, knowledge and skill to “play this play!” One step at time…
Carter and Jordyn continue to do well, and are embracing their new normal! It has been a struggle at times, especially at bed time and through the night - but they love having their little brother home! Jordyn continues to amaze us with her care and playfulness with Jackson, and Carter – well Carter is just amazing! He wants to hold him all the time, and shows compassion in ways that I have never witnessed in a 5yr old! He is absolutely awesome - and is truly stepping up as a big brother! But then again - he is the one who has been praying for his little brother for almost two years now!
And even in the midst of the sleepless nights and difficult days - mommy and daddy continue to grow in our faith, love and unity - not just with our Savior - but with each other! This truly has been the hardest test our marriage - as well as individuals - has ever endured! There have been some very tense, stressful and frustrating moments dealing with "all" that this storm offers, but the greatest blessing is finally having the opportunity to have our family together under one roof! The blessing of getting to know the little man - his cry, his squirms, his burps, his smile, his eyes, his huge hands and his personality - has been awesome, and far outweighs any of the struggle and stress! It is still hard to believe that he is now 6 weeks old - in a new decade already - and yet has only been "home" for 14 days…and as daddy and Jackson rang in the New Year together (I lost at paper, rock, scissors for the midnight feeding - just kidding!) - I was reminded of the promise and Victory we have in the Alpha and Omega! He is the Beginning and the End...and in the Beginning - He created it all! Our Heavenly Father created Jackson perfectly, and continues to shock and amaze us all with His purpose and plan in Jackson’s life! Jackson is God's glorious creation - and what a testimony he is to God's Majesty and Sovereignty! He is in all, through all and over all – and in Him all things are possible, for He is our strength!
Specific Prayer Requests:
- Pray for Jackson’s feedings, weight gain and the leak in his tricuspid valve. Cover our team of doctors in prayer as well as they begin preparations for his Glenn Surgery.
- Pray for rest – especially for Mommy and Jordyn. Many nights – Jordyn has been waking as she hears Jackson, and then not going back to sleep. The midnight and 3am feedings are tough as it is on mommy or daddy, but when Jordyn gets up…that means that both of us have to be awake and lose our opportunity for rest.
- Pray for wisdom, focus and energy as we learn to juggle all that life has to offer in our new normal.
No doubt our sails are tattered...the storm is/has been intense...our oars are gone...the motor is out of fuel...yet we continue to sing of His Mercy for He is the Everlasting God and He is leading us through this Valley!
All Eyes on Jesus!
Snapshot Moments:
[Think this one could win a beautiful baby contest?]
[Snug as a bug in a rug!]
[Wouldn't you just love to know what they're thinking?]
[Carter started back to school this week! He was so excited to meet his new friends and see Mrs. Koster! He got to be the weather man this week in class and came home Wednesday and said - "daddy, why does it have to snow everyday? This is getting old already!" He even had his first snow day Friday after another 6 inches fell through the night! It was a very emotional moment for mommy and daddy as we dropped him off Monday morning...as this is one routine from our "old normal"]
1 comment:
Still coming in every day to check on your amazing family & your little warrior. Don't always sign in.....am concerned since there hasn't been anything written since Jan 10th. I pray all is well. God bless you all.
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