Matt's head continues to grow at an alarming rate, which means sleepless nights, frequent feedings, vomiting, and discomfort for Matt. It is hard thing to watch one's son die. Between the Tylenol, constant rocking, diapering, and tears, God still blesses our days with peace and joy. (Matt's actual pain is minimal due to massage, gentle vertical rocking, and occasional medication; so, please don't imagine him suffering. He spends his time being rocked, kissed, and cuddled in peace. He is, despite his condition, one of the most pleasant babies I have ever had the privilege to care for. The vomiting we have also learned to control through frequent small feedings and positioning).
Unfortunately, however, by the time I feed Matt 1-2 ounces every 1-2 hours, rock, change, massage, and bath him, there is little time left to care for the needs of our other two small children. As God allows, my priority is to provide for "e&j"s material and spiritual needs as well as those of my wonderful and terribly, exhausted husband. There is little time for anything else: I still have Christmas nail polish on my nails! It is hard for me to remember to pay the bills, much less return phone calls or emails. (I think what I am trying to say is that we are all doing amazingly well, but to insure Matt isn't in pain and everyone else is being loved, we don't have much time left to love on others we care so much about).
I was able to rock Matt for awhile tonight while I watched "e&j" take their bath. It was lovely to rock and sing to him knowing that someday soon he will be taking in the real celebration in heaven. If I get the chance, I will rock him to that beautiful music again. Everything else can wait, "I am rocking my baby, and babies don't keep!"
Please continue to pray that God will help me to keep my priorities in line with His priorities for me as outlined by Titus 2:5. It would seem that not a day goes by now that I haven't disappointed someone or even lots of someones. Encourage us to keep godly priorities--especially time in His word--because more than any other kind of help, we crave grace. Please cover us in love and overlook our frailties, and by so doing, you will have given us God's best gift to us all. grace and peace to you.
"r"
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Dear "R",
ReplyDeleteI am praying for you right now and all that you have expressed here. Asking God to give you His strength to continue caring for this precious baby. He trusts you with Matts life until He lifts him from your arms. His grace IS sufficient and He will bring you through. I wish I lived close so I could help you, it would be such an honor. I pray that those who are disappointed will look beyond their own selves and see the message this little boy has brought for us all to learn. God Bless you and I pray He provides some help for you too.
Love and Hugs, Laurie
As a mom who has rocked her baby to Heaven, my heart aches for you. Let everything else go, entrust your sweet children to friends who love them if you need to for a little while, don't return phone calls and don't worry what anyone else things, for you are right. You are rocking your baby and babies - especially like Matt and Miller Grace - just don't keep. Kiss him for me and tell him there's a pretty little girl waiting there for him in Heaven with dark hair named Miller Grace. You're going to be alright, sweet mama. You are. Your Lord's going to hold you as fast as you have held this precious gift of yours. He'll carry you through. And I'll be standing in the gap for you.
ReplyDeletei am typing through the tears..o how my heart aches for all of you~~every single one. i couldn't imagine looking at this precious gift from God knowing that he will be in heaven soon! my mommy heart is with you. i will pray really hard for you, matty and the rest of your family. you will have friends (bloggers) family that will be there to carry your mat my friend.
ReplyDeleteDear R and S,
ReplyDeleteI'm continuing to pray for you and Matt every day.
I feel that I must share something with you, a website that you must already know about, but just in case you don't:
http://www.hydranencephaly.com/our_rays_of_sunshine.htm
There are children with hydranencephaly who not only lived past infancy but have proven that they are capable of cognition. You may also wish to read the following medical journal article:
http://www3.interscience.wiley.com/journal/118860184/abstract?CRETRY=1&SRETRY=0
It grieves me more than I can express that Matt's doctors will not relieve the pressure in his brain when they could do so. As a scientist I understand statistics and facing facts, but as a mother and a Christian I would be fighting tooth and nail for my son's life....statistics be damned.
If I have offended you, I'm so very sorry, that's not my intention. Of course you have to do what you feel is right for Matt and for your family...what you feel the Lord is leading you to do.
But I too have to do what I feel is right, and I had to bring this to your attention.
Again, I'm praying for your family and little Matthew all the time.
JoAnn O'Linger-Luscusk
JoAnn,
ReplyDeletePlease do not be grieved. God is good, and he has provided a great deal of wise counsel for us. Currently, Matt's scans are being reviewed by the "best specialist" in the nation. The doctor's do not wish to put a shunt in Matt b/c they are afraid it will do more harm than good. If it becomes apparent, that relieving the pressure will provide a benefit to Matt, we will certainly do so. Matt's diagnosis is hydrancephaly, and his particular prognosis is not necessarily comparable to others. While we are not scared of statistics, we rest in God's sovereignty and the wisdom He provides while we continue to do the good.
"r"
Thank you, "r", for your kind reply. God is truly good...that is a fact that will never change.
ReplyDeleteAnother option to relieve pressure is removal of fluid via lumbar puncture, but since "s" is a doctor, he knows this of course. I have no right to suggest anything at all to you. But the thought of that precious little guy suffering is almost unbearable.
I will continue to pray for supernatural peace, wisdom, and strength for you and "s", and for the Lord's mighty hand to work His will in every area of little Matt's life. For He loves Matty Matt more than any of us ever could.
((hugs)) to all of you....
JoAnn
love you guys. hope "j" liked the cookies. prayers going up as always for the week ahead.
ReplyDeletehope you liked your new spring nail polish and girly goodie bag too! hope you are blessed tonight with God's peace and rest and a knowledge that your friends are loving you, standing alongside you and supporting you every step of the way....love you guys! glad the kids liked their texas care package from liam!
ReplyDeleteThe Lord led me here, no other options, because I am a total stranger! But, oh how I wish I was wherever you are to walk alongside. Your children are resilient, and are watching you. What they see is very loving, sacrificial parents being supported by the body of Christ. That lesson will not be lost on them. I would also say that a spend the night or spend the day at a friend's house will be a fun break for all. Children indeed RISE to the Occasion, and are better for it. For reasons I will never know, my heart is with you and your husband, and I pray especially for you two as you are the arms of Christ.
ReplyDeleteThis is so hard, and this process can be and feel so confusing and long. I continue to pray for you and your family. I know it's hard, but you have to block everyting outside your hedge of protection, wherever that line may be, out! No one truly knows how you're feeling or what this is like for you and your family. Keep your eyes focused on our Jesus, He's got you, all of you.
ReplyDeleteMy heart is breaking for you as your nightmare reminds me so much of ours we lived out just a short time ago. I am so sorry you have to experience this, but am so happy that Matt is surrounded by such love and care. You're doing great. Keep up the good, faithful, and loving work.
I found your blog through mycharmingkids. God will cover you. In the meantime, keep rocking all your babies. What a blessing to read, share, and be a part of the ministry of this little one's life. In Christ, the Cowens
ReplyDeletewww.mhcowen.blogspot.com
Praying and praying...for supernatural comfort, strength, wisdom; that He would give you the love and make up for your lack.
ReplyDelete