THESE CHILDREN ARE SPECIAL
(A COUPLE ADOPTS CHILDREN WITH SPECIAL NEEDS)
(Some of the names in this story have been changed to protect the privacy of this family.)
WE HAVE BEEN FOSTER PARENTS FOR OVER TWENTY YEARS AND THERE HAVE BEEN MANY REWARDING TIMES AND MANY DISAPPOINTMENTS, BUT EACH ONE HAD A SPECIAL PURPOSE AND LEFT ITS MEMORIES. SIXTEEN YEARS AGO WE HAD A VERY SPECIAL EXPERIENCE WITH A HANDICAPPED BABY THAT WAS PLACED WITH US. WE EVENTUALLY ADOPTED HIM. WE LEARNED MANY DIFFICULT LESSONS DURING HIS LIFE TIME. MICHAEL LIVED TO BE 23 MO.OF AGE AND HIS IMPACT ON OUR LIVES CONTINUES TO INFLUENCE US. EVEN IN OUR GRIEF GOD WAS PREPARING US FOR THE MINISTRY HE WAS GIVING TO US. THROUGH THE YEARS SINCE THEN LITTLE ONES WITH VARIOUS MEDICAL AND PHYSICAL PROBLEMS HAVE COME AND GONE. LET ME TELL YOU ABOUT MELISSA!
A FRIEND TOLD ME OF A YOUNG WOMAN WHO WAS PREGNANT AND UNWED AND ASKED ME TO JOIN HER IN PRAYING FOR HER SITUATION IN THE COMING MONTHS. THE WOMAN WAS A VERY CAPABLE PERSON BUT WAS N OT READY FOR A CHILD. AS THE MONTHS WENT BY I WAS kept INFORMED OF THE LATEST HAPPENINGS. DENIAL SEEMED TO HINDER HER FROM MAKING PLANS FOR HERSELF AND THE BABY AND WE WERE BECOMING MORE CONCERNED. AS THE TIME DREW NEAR FOR DELIVERY, PLANS WERE MADE TO PLACE THE BABY FOR ADOPTION. WE WERE THANKFUL FOR THE DECISION THAT WAS MADE.
SOON THE NEWS OF THE BIRTH OF A BABY GIRL CAME. THE ADOPTION PLANS WERE NO LONGER PRACTICAL AS THE BABY GIRL WAS BORN WITH PROBLEMS SO SEVERE THAT SHE COULD NOT LIVE LONG. THE DOCTORS SAID THAT SHE HAD NO BRAIN TISSUE-ONLY A BRAIN STEM- SHE WAS BLIND, DEAF, UNRESPONSIVE, UNAWARE, AND DYING. HER BABY WAS NOT NORMAL- THERE WOULD BE NO ONE TO LOVE HER BABY NOW- NO ADOPTION- WHAT A HEAVY LOAD FOR A YOUNG WOMAN. I WILL NEVER FORGET THE DAY THAT THIS NEWS CAME...I SUDDENLY FELT AN OVERWHELMING SENSE OF LOSS WHAT WOULD-WHAT COULD THIS MOTHER DO NOW? THAT MOMENT I REALIZED HOW EMOTIONALLY INVOLVED I HAD BECOME IN THE ENTIRE SITUATION .I HAD NEVER MET THE WOMAN BUT FOR SEVEN MONTHS SHE WAS ON MY HEART AND IN MY PRAYERS EACH AND EVERY DAY...I DEFINITELY WAS INVOLVEDEMOTIONALLY AND I FELT HELPLESS!
IN A FEW DAYS I WAS CALLED BY A SOCIAL WORKER ABOUT A NEWBORN BABY THAT WOULD NOT LIVE BUT A FEW WEEKS AND WAS BEING RELEASED FROM THE HOSPITAL.SHE EXPLAINED THAT SHE DIDN'T HAVE A CLUE AS TO WHERE AN INFANT LIKE THIS COULD LIVE ITS LAST DAYS BUT SHE NEEDED TO DO SOMETHING NOW. COULD I HELP HER FIND A PLACEMENT-A NURSING HOME- OR SOMETHING--? MY HEART WAS LEAPING AS I REALIZED THAT THIS WAS THE BABY I KNEW ABOUT. I OFFERED TO BRING HER HOME WITH ME UNTIL A BETTER PLACEMENT COULD BE FOUND. I KNEW THAT THERE WAS NO OTHER PLACEMENT AND THAT I WANTED TO TAKE CARE OF HER. THE SOCIAL WORKER AND I WENT TO THE HOSPITAL TO PICK UP THE BABY. I KNEW THE NURSE THAT WAS I N CHARGE OF HER. SHE HUGGED ME AND BEGGED ME NOT TO TAKE THIS BABY HOME. SHE WOULD DIE SOON AND SHE REMINDED ME THAT LESS THAN A YEAR BEFORE WE HAD LOST MICHAEL. SHE ALSO EXPLAINED THAT BECAUSE OF HER NEUROLOGICAL DAMAGE SHE WOULD SCREAM CONTINUOUSLY.SHE WAS SCREAMING A TERRIBLE SCREAM AT THAT TIME AND HAD NOT STOPPED BUT FOR A FEW MOMENTS SINCE BIRTH. SHE CONTINUED TO EXPLAIN HOW THIS BABY WOULD NOT RESPOND TO CAREGIVERS, SHE COULD NOT TAKE IN ENOUGH NOURISHMENT BECAUSE SHE COULD BARELY SUCK, HAVING A FAMILY WOULD MAKE NO DIFFERENCE TO HER. AS I PICKED UP THAT BEAUTIFUL DARK HAIRED, DARK EYED SCREAMING BABY GIRL TO DRESS HER TO GO HOME SHE STOPPED CRYING. I HELD HER ALL THE WAY HOME AND FOUND THAT SHE DID NOT CRY AS MUCH AS HAD BEEN REPORTED. SHE DID NOT FEED WELL BUT WITH A LITTLE WORK AND TIME SHE BEGAN TO TAKE ADEQUATE FORMULA.
WHEN SHE WAS 15 MONTHS OLD WE PETITIONED THE COURT TO ADOPT HER.WE WANTED HER TO HAVE A LEGAL NAME AND A FAMILY AND BESIDES THAT WE LOVED HER!! BY THE TIME SHE WAS TWO SHE BEGAN TO HAVE FAVORITE WAYS OF RESPONDING DIFFERENTLY TO EACH FAMILIAR PERSON. WHAT WAS THAT AGAIN ABOUT BEING OBLIVIOUS TO LIFE AROUND HER? BY THE TIME SHE WAS FOUR YEARS OLD SHE WAS LOOKING "AT" US AND NOT "THROUGH" US.
WE HAVE A MIRACLE...MELISSA IS NOW 13 YEARS OLD... SHE IS STILL LIKE A 3-6 MO OLD BABY IN HER DEVELOPMENT BUT SHE IS A SOCIAL, BEAUTIFUL, AND SENSITIVE LITTLE GIRL. THERE ARE SOME VERY HARD DAYS. SHE HAS GROWN TO A NEAR NORMAL SIZE (THE DOCTORS SAY that IS IMPOSSIBLE) BUT SHE IS STILL A DELIGHTFUL BABY. SHE RARELY CRIES AND NEARLY ALWAYS HAS A SMILE. SHE DELIGHTS IN PIANO, FLUTE AND CHRISTIAN MUSIC. MANY HOURS ARE SPENT LISTENING TO MUSIC, EVEN AT NIGHT WHEN SHE WOULD RATHER PLAY THAN SLEEP.
SHE CONTINUES TO BE THE JOY OF OUR FAMILY AND ANYONE WHO KNOWS HER. SHE LOVES PEOPLE BUT "CHECKS OUT NEW VOICES". MELISSA HAS TOUCHED MANY PEOPLE. WE HAVE HAD SEVERAL UNWED MOTHERS LIVE WITH US AND THEY BEGIN TO SEE THE REALITY OF LIFE AND WHAT REALLY IS IMPORTANT. MELISSA IS ABLE TO GIVE INSIGHT TO ANYONE WILLING TO LEARN. LOVING HER IS A PRIVILEGE WE CAN NOT EXPECT ANYTHING IN RETURN (our love must be UNCONDITIONAL) BUT SHE FREELY SMILES AND COOS TO EXPRESS HERSELF. WE HAVE BEEN RIGHT IN THE MIDDLE OF A MIRACLE THAT STARTED THREE YEARS BEFORE HER BIRTH. OUR FAMILY LEARNED THAT WE COULD SURVIVE WITH GOD'S HELP. WE ARE TOTALLY DEPENDENT ON HIM FOR OUR VERY EXISTENCE. THE LESSONS LEARNED WITH OUR EXPERIENCES WITH MICHAEL PREPARED US FOR THE OPPORTUNITY OF CARING FOR MELISSA. WE MIGHT NOT HAVE BEEN AS WILLING TO OPEN OURSELVES UP IN SUCH A SEEMINGLY HOPELESS SITUATION IF WE HAD NOT LEARNED OUR LESSONS WELL.
GOD HAD PREPARED MY HEART TO RECEIVE MELISSA WITH THAT FIRST CONTACT ABOUT A WOMAN NEEDING PRAYER.THANK GOD THAT I RESPONDED AND BECAME INVOLVED.!! NOT ONLY ARE YOU BLESSED WHEN YOU FOCUS ON OTHERS AND UPLIFT THEM IN PRAYER,IN THIS CASE I KNOW THAT MELISSA BECAME MY BABY WITH THAT DECISION TO BECOME INVOLVED. GOD KNEW ALL ALONG WHAT WAS TO HAPPEN. I WAS BEING PREPARED TO RECEIVE A VERY SPECIAL GIFT.
MELISSA HAS SERVED A VERY REAL PURPOSE IN LIFE. OUR FAMILY HAS LEARNED SO MUCH ABOUT THE WORTH OF EVERY LIVING SOUL-. NOT EVERY LIVING GENIUS --EVERY LIVING SOUL. WE HAVE BEEN ABLE TO CARE FOR NUMEROUS BABIES THAT WERE SEVERELY DISABLED OR DYING. GOD IS SO FAITHFUL. HE WILL USE THE MOST UNLIKELY PEOPLE TO DO WHAT NEEDS TO BE DONE. HE WILL NEVER LET YOU DOWN. I'VE LEARNED THAT THERE IS SOMETHING WORSE THAN CHILDREN SUFFERING AND DYING AND THAT IS CHILDREN THAT HAVE TO GO THROUGH IT ALONE .WE ALL NEED PRAYER AND LOVE AND SO DO THEY. I AM CONVINCED THAT NO CHILD IS SO DISABLED THAT HE OR SHE DOES NOT RESPOND TO LOVE..GODS LOVE. I HAVE FELT TIGHT, STIFF LITTLE BODIES RELAX IN MY ARMS WHEN THE DOCTORS HAVE SAID THAT THEY WOULD RESPOND TO NOTHING. BE AWARE OF NOTHING, SOME PEOPLE WOULD SAY THESE CHILDREN ARE NOT WORTH PROTECTING IN THE WOMB AND SOME ARE REJECTED AFTER BIRTH BY SOCIETY .GOD ASK CHRISTIANS TO LOVE AND PROVIDE FOR THE LITTLE CHILDREN - EVEN UNTO THE LEAST OF THESE. I KNOW GOD DOES NOT REJECT THESE LITTLE ONES.
MY DESIRE IS TO BECOME MORE CHRISTLIKE IN EVERY PART OF MY LIFE. THESE LITTLE ONES HAVE BEEN TEACHERS WITH THE WISDOM AND STRENGTH OF ANGELS.
June 22,1995 This was added to the above and in Celebrate Life.
I feel a great responsibility to share my experiences as God gives them for His glory and for our growth through complete dependence on Him. Certainly our desire is that no child would ever be born imperfect but living in this imperfect sinful world...this will happen .If we feel strongly about the sanctity of life and the worth of EVERY living soul we must be willing to offer options. There are many different ways of putting action to our words...It can be helping women with difficult pregnancies. We can all pray for families in difficult situations feel "called" to offer encouragement to families and to be available to physically care for the babies that need special care. We all have "ministries"-We all must DO something!
A newborn infant with the same diagnosis as Melissa has come to live with us in January 1995. We are aware daily of Gods hand on this child. She has had two surgeries since January and has some difficult medical problems over and above the hydranencephaly. She was a 27-week baby so she had a difficult start without the primary diagnosis that threatens her. She had so many things against her that I feel God has a plan for her or she would not have lived long at birth. Her teenage parents were unable to care for her and she would become a ward of the state (although the state refused to help this couple unless they neglected or abused their baby). There was every reason for some to feel she was not compatible with a good quality of life. Well, in January I traveled to Colorado to pick her up from her young parents. They cried and thanked me for being willing to take her. They commented that our family must be Christian and they knew she would be loved. They held each other and cried-I cried-and Elizabeth and I rode away. Immediately there seemed to be a bonding. She is our baby for however long God allows.
When she was hospitalized in February the staff was concerned that maybe we didn't understand her condition -and that when we did we would probably not want to treat her. Right!! This infant was not getting enough nourishment and I was asking for help before she became too weak. I was able to contact the doctors that had taken care of many other babies for me. When they arrived she was stabilized with IV's. And scheduled for a gastrostomy for feeding her directly into her stomach. Even then one of the original doctors explained that she felt I was putting Elizabeth through too much when she would never respond anyway. Would I consider just "letting her go"?
She quickly told me "she didn't mean to not feed her." Sure......just let her have what she could manage to take by mouth -which was at most a teaspoon full-and she would just slip away before long. Needless to say, I don't feel that withholding what is so readily available to help her was appropriate. I deeply believe God will take her in His time-be that today or 20 years from now. I am responsible for giving her the love and good care God intends for all of us. Thank God I am not judged on my abilities and intelligence but on my worth as a soul created by God. I want that for all children. No matter how helpless we are the law is there to protect us...No matter how unworthy and undeserving we are, God takes us in His arms and protects and loves us unconditionally. She deserves no less.
The bottom line is that all the glory belongs to God. Our job is to care for all His children with dignity and respect.
Ron and I are living with mixed emotions at this time. Our precious Melissa died suddenly January 4th at 10 p.m. She was quietly happy and doing well, even smiling at her very last breath. It probably was her heart or maybe her shunt. Either could have been damaged from the obstructive breathing she had experienced before her two surgeries in November. As for me I can not imagine every day without her...so much time and energy was given to her...but then that's what it is all about isn't it...I cannot explain the peace I feel about her...we had her for 15 ½ years more than medically possible and they were good years... Ron says that he would do it again in a moment. We both have no regrets...we lost a beautiful, loving, fun little girl that now has a perfect body in Heaven...we were both there when she died...she was not suffering...God took care of us again! Terry from N. Anderson Church of God had the memorial service and it seemed like, as Ron put it, that Melissa had been promoted. The service was beautiful with lots of music and Terry reminded us all about the value of every life...even Melissa touched many lives. He said that planning her service had made such an impact on him that he would never be the same. God still used Melissa even in her death. We have no cause for sadness we mourn and there's an emptiness in our home "her absence is everywhere" but God has promised that for the Christian all things work together for good...and as I look back over the last almost 16 years it is very clear that God had a plan from the day Melissa was conceived and He continues to be in control. Melissa's life will always be an influence in our lives. Nothing will ever be the same.
Forgive me for going on so ...but we wanted to share some of our feelings with you at this time of great loss...Melissa is now with Jesus Himself in her perfected body. We have a miracle!
Elizabeth is now 26 pounds and 28 inches long at 3 ½ years old. She is still at a 3-6 month level. She is generally happy and will sleep for 2-3 days and nights and then stay a wake for 2-3 days and nights. (She does not have an inside clock that works) Of course she does not have a body temperature regulator either or any growth hormones-or thyroid to function-or kidney regulator---or eyesight or.......but you know with some very new treatment with medication those functions have been replaced .She is tube fed and with that surgery had a procedure that keeps her from vomiting her formula which is infused by a pump over a long period of time each day. Her physical therapists are amazed at the enjoyment she gets from the exercise and attention. She coos and smiles and very seldom cries...She likes her peek-a-boo big bird and her horsy that whinnies. She is holding her head up for several seconds and "looks" around...We still keep music on all the time and she really seems to know.
Patricia 11 years old 3/98
Tricia came to live with us 1 year ago and her placement was very timely. We had persued her adoption so that there would be someone else to holler and laugh with Melissa. They would be good company for one another...
As it happened Melissa died in January and Tricia came in April think about it...right when we needed someone to invest our time and love in as we had done for many years with Melissa...Tricia was a joy and a comfort to us...She continues to be a joy and sometimes I think she may understand more than she can express that she was a "shaken baby" when she was 3 weeks old.
At this time we are waiting the decision for adopting another little girl Susanne. She is from Honduras and is now in a very loving foster family her adoption has been approved already and we are waiting for the inter-state paper work to be completed. Susanne's caseworker has a 2 year old boy she wants us to meet when we pick Susanne up she thinks we would want him as well.
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Deborah S. Hill 1-800-277-7006
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